Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties
Helen Keller
Well I have managed to make it through the festive period. I won't lie and say it has been easy, I slipped on several occasions. My fear set in and I found myself thinking the worst. I did, however make it through with a smile on my face when Olivia was around but with a few tears when she wasn't. Tonight I am waiting up to see in the New Year as this is what O wants to do. It's another wee moment to mark. She is old enough to want to do this and have the awareness of it all and I am celebrating it as I now value so much more the importance of such change.
I had chemo today and saw my consultant. She told me that I will be seen by a doctor to discuss ablation therapy. It would mean travelling to London if it were to happen so I can look forward to a wee trip away. I have a scan coming up and this will determine whether or not this treatment is a viable option. In the meantime I have to keep positive and hope for the best result but prepare for the possibility of something different.
Anyway it is a new year and I am hopeful about it. I have new potential treatments and I have to have faith in the possibilities that they bring. I wont give up on hope and I will try to live my life as fully as I can, I wish that had been my resolution many many new years ago but I am grateful that I can say it and mean it today, that's what is important. So here's to a new year and here's to living however tough it may be at times.
Tuesday 31 December 2013
Friday 20 December 2013
As it should be...
It was the season of Light, it was the season of Darkness; it was the spring of hope, it was the winter of despair.
Charles Dickens
I officially retired today. There was a lunch and a presentation to mark the event. I had a mixture of emotions. I was on the one hand sad that due to my health condition I could no longer work. On the other hand I was delighted that I had been given the opportunity to be freed from the shackles of work through economic necessity. As I have said before I will by no means be rich but we will have enough to have a decent life and the key word here is life. This has a couple of different meanings for me. Of course the obvious one is that I am alive despite this horrible illness. The other is that I am actually now able to enjoy my life and take pleasure in it, every day not just on holidays and weekends.
So really, how did I cope with this monumental day, a day which brought to the fore the realities of my on going fight and the pain and sadness that it can at times bring? I viewed it in its entirety and I viewed it realistically. Where there is sadness, happiness can exist and walk beside it. Life is really never straightforward, to exist without experiencing a mixture of emotions is to not really live at all. I saw a variety of people today including some of the staff who taught Olivia when she was at school across the road from mine. I also caught up with people from my school who I had worked with over the years. Some of the words from these people brought tears to my eyes. While I face this battle it never ceases to amaze me how much kindness there is in people. Faced with a horrible situation I am nonetheless introduced to the very best side of people, a side that is always there but is on full show in the worst of times. So you could say that I am blessed to be given such opportunities. I get to simultaneously bask in the spring of hope whilst reckoning with the very real winter of despair. This is living.
Charles Dickens
I officially retired today. There was a lunch and a presentation to mark the event. I had a mixture of emotions. I was on the one hand sad that due to my health condition I could no longer work. On the other hand I was delighted that I had been given the opportunity to be freed from the shackles of work through economic necessity. As I have said before I will by no means be rich but we will have enough to have a decent life and the key word here is life. This has a couple of different meanings for me. Of course the obvious one is that I am alive despite this horrible illness. The other is that I am actually now able to enjoy my life and take pleasure in it, every day not just on holidays and weekends.
So really, how did I cope with this monumental day, a day which brought to the fore the realities of my on going fight and the pain and sadness that it can at times bring? I viewed it in its entirety and I viewed it realistically. Where there is sadness, happiness can exist and walk beside it. Life is really never straightforward, to exist without experiencing a mixture of emotions is to not really live at all. I saw a variety of people today including some of the staff who taught Olivia when she was at school across the road from mine. I also caught up with people from my school who I had worked with over the years. Some of the words from these people brought tears to my eyes. While I face this battle it never ceases to amaze me how much kindness there is in people. Faced with a horrible situation I am nonetheless introduced to the very best side of people, a side that is always there but is on full show in the worst of times. So you could say that I am blessed to be given such opportunities. I get to simultaneously bask in the spring of hope whilst reckoning with the very real winter of despair. This is living.
Tuesday 17 December 2013
Letting go
Happiness can only exist in acceptance
George Orwell
I finally had my sit down meeting with staff at the Beatson, to talk through, in more depth what happened nearly 2 years ago to allow me to become a tragic "system error". I have already written about the fact that after my initial treatment ended for my primary cancer I fell off the radar. In the months that ensued my cancer returned (was it ever away?) and grew rapidly and sadly found its way into my lung. This is what I live with today. I wrote a letter of complaint about my lack of care and documented in this blog the response to it and the dissatisfaction that I felt. So yesterday, I got my chance to sit down face to face with the people who could offer me some answers as to why this happened.
I was actually prepared for this meeting to be frustrating, based on the letter that I received some months back. I went in to the meeting expecting to be fobbed of and given half truths and excuses. This didn't happen. Yesterday I sat in a room with 4 members of staff from the Beatson and was told in no uncertain terms that indeed as a direct result of me volunteering to take part in a research programme for post chemotherapy women and menopausal symptoms, I was never given the vital follow up appointment that could have (and I will never know) saved my life. The system in place didn't allow for appointments at the clinic to be differentiated between doctors appointment and other reasons for being there. It's that simple. As a result I was recorded, wrongly, as having been seen by a doctor when in fact I had not. Wow. I had every opportunity to question the system and with each question I asked the answers blew me away. The system was so open to mistakes it was frightening. The flaws were overwhelming, not least because this was a system which could result in someone losing their life if something should go wrong. I am that one. This has been recognised and they are sorry, I believe them. They have now, since my complaint, introduced a more rigorous system and for this I am truly grateful. Yesterday the people around the table in the conference room on the fourth floor recognised, accepted and duly apologised for what had happened to me. It was a very odd end to my mission. I had achieved what I had set out to do but I was still terminally ill. However, I have to view this with the positivity that it merits. The same thing wont happen to others, lessons have been learned it would seem. This is good and I have to take strength from it. I can finally put it to bed and move on as it has been hanging over me for too long. I can accept it. Acceptance allows me the energy I need to fight my disease and I will continue to fight it as far as I am concerned for a VERY long time yet.
George Orwell
I finally had my sit down meeting with staff at the Beatson, to talk through, in more depth what happened nearly 2 years ago to allow me to become a tragic "system error". I have already written about the fact that after my initial treatment ended for my primary cancer I fell off the radar. In the months that ensued my cancer returned (was it ever away?) and grew rapidly and sadly found its way into my lung. This is what I live with today. I wrote a letter of complaint about my lack of care and documented in this blog the response to it and the dissatisfaction that I felt. So yesterday, I got my chance to sit down face to face with the people who could offer me some answers as to why this happened.
I was actually prepared for this meeting to be frustrating, based on the letter that I received some months back. I went in to the meeting expecting to be fobbed of and given half truths and excuses. This didn't happen. Yesterday I sat in a room with 4 members of staff from the Beatson and was told in no uncertain terms that indeed as a direct result of me volunteering to take part in a research programme for post chemotherapy women and menopausal symptoms, I was never given the vital follow up appointment that could have (and I will never know) saved my life. The system in place didn't allow for appointments at the clinic to be differentiated between doctors appointment and other reasons for being there. It's that simple. As a result I was recorded, wrongly, as having been seen by a doctor when in fact I had not. Wow. I had every opportunity to question the system and with each question I asked the answers blew me away. The system was so open to mistakes it was frightening. The flaws were overwhelming, not least because this was a system which could result in someone losing their life if something should go wrong. I am that one. This has been recognised and they are sorry, I believe them. They have now, since my complaint, introduced a more rigorous system and for this I am truly grateful. Yesterday the people around the table in the conference room on the fourth floor recognised, accepted and duly apologised for what had happened to me. It was a very odd end to my mission. I had achieved what I had set out to do but I was still terminally ill. However, I have to view this with the positivity that it merits. The same thing wont happen to others, lessons have been learned it would seem. This is good and I have to take strength from it. I can finally put it to bed and move on as it has been hanging over me for too long. I can accept it. Acceptance allows me the energy I need to fight my disease and I will continue to fight it as far as I am concerned for a VERY long time yet.
Tuesday 10 December 2013
The freedom of speech...
“People who keep stiff upper lips find that it's damn hard to smile.”
Judith Guest
I had chemo number 23 today (maybe 24 it's been a long haul). Over the last few days I have been in a fair bit of pain and my mind has reacted badly. Every small bone and most joints are aching badly and I have struggled to get out of bed. As a result I have allowed my mind to take me into dangerous territory. It would not be too much of a shock or surprise for the cancer I have in my lung to appear in my bones, it happens. Having the pain that I have, I find myself wondering if this is already the case and that my January scan will confirm such. I am a quivering wreck consequentially. What to do? I came clean to my nurse today about the extent of my pain. I tend to play down my side effects as I really don't want to be taken off this chemo, I'm not ready. However, I told her of my pains and she was unable to guarantee that I would not be told that I have cancer in my bones in January, she is a realist and I appreciate that. What she could do, though, was put things into perspective. She reminded me that the chemo that I am on attacks small bones and joints and that there was a very good chance that the pain that I was experiencing was indeed a result of this. So I spoke about my fears and it helped. This is my experience lately, talking about feelings and worries and essentially what you are afraid of, truthfully and uncompromisingly really does help. It helps everyone not just those with terminal cancer.
I also asked today about what was likely to happen in the longer term with this chemo, essentially when it would come to an end. She told me that this would happen when either the tumours learned how to fight against the drugs or when I simply couldn't be given any more, most probably due to my blood count just not being able to recover enough for the drug to be administered. At the moment my blood count is showing no signs of this and indeed this is unusual, who knows I may break a record. This was categorically not what I had in mind when I watched Roy Castle as a child, but hey them's the record breaks!
Through my difficult few days of projection and self diagnosis I have been busy as always combatting the negative through research. Again I have found some very interesting articles on new drugs for my type of cancer. These articles really keep me going as I quoted before without hope the heart would surely break. Mine would so I hold on to hope as a way of coping and it does, most of the time, get me through my dark moments. Just as I can read that the average life expectancy for someone with my diagnosis is one year, I can equally read about breakthrough drugs and choose to believe in them.
On another note my eyebrows are looking fab. The girl who did them really is brilliant and I can't thank her enough, nor recommend her more highly. I really don't think that this little makeover is only good for those going through chemo. This, however leads me on to another problem. I realised yesterday when yet another nurse I met for the first time told me how good I looked, that I ultimately resent people saying this. I hear it all the time. Now, I have recognised that this is MY problem These people are doing nothing wrong. I have to deal with it. I suppose it kind of wears me down as I am not, most of the time, feeling particularly good. However I am also aware that these resentments tend to be active when my mood is low. I am basically feeding bad feelings and I don't want to do that. I have to keep my mind clean and healthy and most importantly positive. That way I can appreciate when people say what is, lets face it, a nice thing. I am working on it.
I have also made a start on a private blog. One for Olivia to read in a time that I try not to think about. It is a work in progress but I am glad that I am doing it. I think that it has the potential to help both now and in the future, both me and Olivia. No matter what we are dealing with in life we really have to let it out, it frees us and while none of it will change my diagnosis it can turn what some would say is a death sentence into a life sentence, that is the ability to live life properly and celebrate each day and share my feelings with others.
Judith Guest
I had chemo number 23 today (maybe 24 it's been a long haul). Over the last few days I have been in a fair bit of pain and my mind has reacted badly. Every small bone and most joints are aching badly and I have struggled to get out of bed. As a result I have allowed my mind to take me into dangerous territory. It would not be too much of a shock or surprise for the cancer I have in my lung to appear in my bones, it happens. Having the pain that I have, I find myself wondering if this is already the case and that my January scan will confirm such. I am a quivering wreck consequentially. What to do? I came clean to my nurse today about the extent of my pain. I tend to play down my side effects as I really don't want to be taken off this chemo, I'm not ready. However, I told her of my pains and she was unable to guarantee that I would not be told that I have cancer in my bones in January, she is a realist and I appreciate that. What she could do, though, was put things into perspective. She reminded me that the chemo that I am on attacks small bones and joints and that there was a very good chance that the pain that I was experiencing was indeed a result of this. So I spoke about my fears and it helped. This is my experience lately, talking about feelings and worries and essentially what you are afraid of, truthfully and uncompromisingly really does help. It helps everyone not just those with terminal cancer.
I also asked today about what was likely to happen in the longer term with this chemo, essentially when it would come to an end. She told me that this would happen when either the tumours learned how to fight against the drugs or when I simply couldn't be given any more, most probably due to my blood count just not being able to recover enough for the drug to be administered. At the moment my blood count is showing no signs of this and indeed this is unusual, who knows I may break a record. This was categorically not what I had in mind when I watched Roy Castle as a child, but hey them's the record breaks!
Through my difficult few days of projection and self diagnosis I have been busy as always combatting the negative through research. Again I have found some very interesting articles on new drugs for my type of cancer. These articles really keep me going as I quoted before without hope the heart would surely break. Mine would so I hold on to hope as a way of coping and it does, most of the time, get me through my dark moments. Just as I can read that the average life expectancy for someone with my diagnosis is one year, I can equally read about breakthrough drugs and choose to believe in them.
On another note my eyebrows are looking fab. The girl who did them really is brilliant and I can't thank her enough, nor recommend her more highly. I really don't think that this little makeover is only good for those going through chemo. This, however leads me on to another problem. I realised yesterday when yet another nurse I met for the first time told me how good I looked, that I ultimately resent people saying this. I hear it all the time. Now, I have recognised that this is MY problem These people are doing nothing wrong. I have to deal with it. I suppose it kind of wears me down as I am not, most of the time, feeling particularly good. However I am also aware that these resentments tend to be active when my mood is low. I am basically feeding bad feelings and I don't want to do that. I have to keep my mind clean and healthy and most importantly positive. That way I can appreciate when people say what is, lets face it, a nice thing. I am working on it.
I have also made a start on a private blog. One for Olivia to read in a time that I try not to think about. It is a work in progress but I am glad that I am doing it. I think that it has the potential to help both now and in the future, both me and Olivia. No matter what we are dealing with in life we really have to let it out, it frees us and while none of it will change my diagnosis it can turn what some would say is a death sentence into a life sentence, that is the ability to live life properly and celebrate each day and share my feelings with others.
Wednesday 4 December 2013
Battling on...
Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying,
"I will try again tomorrow."
Mary Anne Radmacher
I am still, sadly, struggling a bit with this life with cancer malarkey. I am now on chemo 22 or 23, I have lost count, and it is taking its toll. The chemo attacks your small bones and joints and I am really aware of this most waking moments. Waking in the morning to sore fingers, toes, wrists, elbows, actually the list is too long, just pain everywhere, is challenging, to say the least. The predicament comes in this form; if I choose to stop this chemo, I am simply putting myself in a position of allowing the tumours to grow again (and they will). If I continue with the chemo then I have to take all of the things that go with it. There is no happy ending to this state of affairs. This is where I realise, again, that I spent my life projecting instead of living in the day. Now, in the main, this is not how one should live. However, when going through tough times it is sometimes vital to be able to project in a kind of "this shall pass" philosophical way. In my current situation this philosophy doesn't work. I'm in no man's land. So what to do? I am getting through the pain and bad days by constantly reminding myself that I am still alive and that in itself is to be celebrated. I have to tell myself that this pain is part of what I have to deal with through this illness. I try to see my situation as a chronic but manageable one, and actually it is. I remind myself that I don't have to go to work and that lots of things in normal life don't apply to me, this allows me to deal more effectively with the other stuff. This rationale proves essential on particularly bad mornings when I struggle to take the duvet from my head. I no longer have the facility to say to myself that next week, month, year will be better and therefore I have to see what good i can find in my immediate future, namely today, this day and not the next one. So, today I am going to finish decorating the Christmas tree and then go and buy lights that Olivia is insisting she have on her bedroom window. This is cause for celebration as normally I am very particular about what I like/have Christmas decoration wise. I only allow, lets say, what I describe, as tasteful stuff. This year, I am throwing caution (or taste) to the wind and allowing Olivia to have what she wants. To dampen the mood, momentarily, I really don't know that I will be here next Christmas and therefore I want Olivia to have what she wants this one. On a lighter note, it allows me to embrace the tacky and do things I wouldn't ordinarily do. That can only be a good thing. There, I have turned a negative into a positive, this cancer sure works in mysterious ways.
"I will try again tomorrow."
Mary Anne Radmacher
I am still, sadly, struggling a bit with this life with cancer malarkey. I am now on chemo 22 or 23, I have lost count, and it is taking its toll. The chemo attacks your small bones and joints and I am really aware of this most waking moments. Waking in the morning to sore fingers, toes, wrists, elbows, actually the list is too long, just pain everywhere, is challenging, to say the least. The predicament comes in this form; if I choose to stop this chemo, I am simply putting myself in a position of allowing the tumours to grow again (and they will). If I continue with the chemo then I have to take all of the things that go with it. There is no happy ending to this state of affairs. This is where I realise, again, that I spent my life projecting instead of living in the day. Now, in the main, this is not how one should live. However, when going through tough times it is sometimes vital to be able to project in a kind of "this shall pass" philosophical way. In my current situation this philosophy doesn't work. I'm in no man's land. So what to do? I am getting through the pain and bad days by constantly reminding myself that I am still alive and that in itself is to be celebrated. I have to tell myself that this pain is part of what I have to deal with through this illness. I try to see my situation as a chronic but manageable one, and actually it is. I remind myself that I don't have to go to work and that lots of things in normal life don't apply to me, this allows me to deal more effectively with the other stuff. This rationale proves essential on particularly bad mornings when I struggle to take the duvet from my head. I no longer have the facility to say to myself that next week, month, year will be better and therefore I have to see what good i can find in my immediate future, namely today, this day and not the next one. So, today I am going to finish decorating the Christmas tree and then go and buy lights that Olivia is insisting she have on her bedroom window. This is cause for celebration as normally I am very particular about what I like/have Christmas decoration wise. I only allow, lets say, what I describe, as tasteful stuff. This year, I am throwing caution (or taste) to the wind and allowing Olivia to have what she wants. To dampen the mood, momentarily, I really don't know that I will be here next Christmas and therefore I want Olivia to have what she wants this one. On a lighter note, it allows me to embrace the tacky and do things I wouldn't ordinarily do. That can only be a good thing. There, I have turned a negative into a positive, this cancer sure works in mysterious ways.
Tuesday 26 November 2013
Thank you and goodbye...
Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present.
Babatunde Olatunjie
My pension has been finalised. Strange times. I got official notification from East Renfrewshire Council. What can I say? It wasn't very meaningful. It kind of just went a bit like this; thanks for your contribution to education and see ya. Oh well at least they said thanks, that's something. It sums it up really. Its a job, its not my life. I am glad I have my experiences and fond memories but it doesn't really mean much on the grander scheme. I will be easily replaced and that will be that. I will, however not be replaced by those who love me and in particular my daughter. Therefore it is important that I spend the remaining time I have living my life on my terms and I simply could not do that whilst giving so much of myself to a job which frankly sucks the life from you. And so I am embracing my new status, I am loving it. I am retired and free to enjoy many things. For so many their job becomes all consuming and although its a cliché we really do only get one life and there are no guarantees how long that will be. We should take this more seriously and give our jobs the place that they deserve, very much secondary (at a push) to our personal lives, they are what matters. Just another reminder that while I am dealing with a testing life situation, I have also been given the chance to live a fuller live and to focus on living one day at a time, as living in the present is surely the greatest gift.
Babatunde Olatunjie
My pension has been finalised. Strange times. I got official notification from East Renfrewshire Council. What can I say? It wasn't very meaningful. It kind of just went a bit like this; thanks for your contribution to education and see ya. Oh well at least they said thanks, that's something. It sums it up really. Its a job, its not my life. I am glad I have my experiences and fond memories but it doesn't really mean much on the grander scheme. I will be easily replaced and that will be that. I will, however not be replaced by those who love me and in particular my daughter. Therefore it is important that I spend the remaining time I have living my life on my terms and I simply could not do that whilst giving so much of myself to a job which frankly sucks the life from you. And so I am embracing my new status, I am loving it. I am retired and free to enjoy many things. For so many their job becomes all consuming and although its a cliché we really do only get one life and there are no guarantees how long that will be. We should take this more seriously and give our jobs the place that they deserve, very much secondary (at a push) to our personal lives, they are what matters. Just another reminder that while I am dealing with a testing life situation, I have also been given the chance to live a fuller live and to focus on living one day at a time, as living in the present is surely the greatest gift.
If it looks and seems too good to be true...
If it were not for hopes, the heart would break.
Thomas Fuller
I decided to thoroughly research this seemingly breakthrough treatment in the USA. After all I need to be armed with knowledge in order to have any power in my decision making. I think I have always been sceptical of this and hence I have not been particularly pro active about it. I suppose I wanted a little day dream to hang on to and so didn't look into to it too closely, and thus shatter my dream. However, having, in my dark mood the last few days, thought about it again, I decided that I had to be a bit more realistic. I had to face up to whether or not this was worth pursuing and if it meant bursting the bubble then so be it.
I spent quite a while last night researching and yes, as I thought, it just doesn't add up. It would seem (and I cant say this for sure) that it is a bit of a ruse, There is no real medical data available and a lot of the fine detail of this clinical treatment and all that goes with it, is to say the least, less than perfect. Am I surprised? Not in the slightest. We live in a world where cancer robs people of their lives and these people co exist with others who want to get rich, do you see a business plan. People with terminal cancer myself included, often look for hope anywhere that they can. There are people who will provide it at a cost, we have to be careful not to lose sight of this in our bid to live. I haven't lost sight, it is one little house of hope that I have boarded up. It's ok, there are others with the light still shining through the windows and I will inhabit them when the time is right. You will be the first to know which one I visit next.
Thomas Fuller
I decided to thoroughly research this seemingly breakthrough treatment in the USA. After all I need to be armed with knowledge in order to have any power in my decision making. I think I have always been sceptical of this and hence I have not been particularly pro active about it. I suppose I wanted a little day dream to hang on to and so didn't look into to it too closely, and thus shatter my dream. However, having, in my dark mood the last few days, thought about it again, I decided that I had to be a bit more realistic. I had to face up to whether or not this was worth pursuing and if it meant bursting the bubble then so be it.
I spent quite a while last night researching and yes, as I thought, it just doesn't add up. It would seem (and I cant say this for sure) that it is a bit of a ruse, There is no real medical data available and a lot of the fine detail of this clinical treatment and all that goes with it, is to say the least, less than perfect. Am I surprised? Not in the slightest. We live in a world where cancer robs people of their lives and these people co exist with others who want to get rich, do you see a business plan. People with terminal cancer myself included, often look for hope anywhere that they can. There are people who will provide it at a cost, we have to be careful not to lose sight of this in our bid to live. I haven't lost sight, it is one little house of hope that I have boarded up. It's ok, there are others with the light still shining through the windows and I will inhabit them when the time is right. You will be the first to know which one I visit next.
Monday 25 November 2013
Eyes wide open...
You, yourself, as much as anyone in the entire universe, deserve your love and affection
Buddha
After writing about my feelings on Saturday I received a lot of messages from people wishing me well and indeed volunteering to help fundraise. All of this brought a real smile to my face. These are the things that keep me going. Humanity is a wonderful thing and the power of sharing can never be over emphasised. This platform has been my saviour these last few months and the fact that others can gain a little insight about how best to deal with their own healthcare is a great feeling. I was reading an interesting article last week about why people blog in difficult times, especially when grieving. I am grieving, for the life that I have lost and so I could relate to this article. It basically said that it is a way of coming to terms with your situation and in a way it makes it real but manageable. This is all true. For me it is also about sharing and making people more powerful through knowledge.
Another thing I would like to share today is a practical tip for people going through chemo. As we all know the chemo leaves you in a bit of a state on so many levels. Hair loss is a big thing for many. I have already blogged about the whole wig issue, but the other aspect of hair loss is that all of your hair comes out. Now this is great when it comes to throwing away the razors for legs and underarms but not so great when you have no eyebrows or lashes. This has been the worst bit for me, in my first chemo and this one. Eyebrows and lashes are pretty resilient and take a while to come out. As a result for one round of chemo its not so bad. By the time they fall out the regime is almost over, thankfully. I remember when mine did come out that I felt like an alien, I was seriously ill in hospital at the time though so I didn't ponder it for too long. This time as I am on my current chemo indefinitely and am now in month 8 of it the eyebrow/lash loss has been a bit more of an issue. So today I am going to have my eyebrows permanently tattooed. A friend of mine introduced me to a lovely and very qualified girl who is doing it for me. She has a nursing background and this gives me even more faith in her. She is keen to cater for women who like me have lost their hair due to chemo. Obviously this is a procedure that many people get for cosmetic reasons but for some of us it goes a little deeper. I already know some women from clinic who have had it done and it really helps to make us feel better about ourselves in an already difficult time. This is not my most pressing issue (that would be staying alive) but it is one that raises its head. Therefore I am glad to be taking action today. This might be published as a way of letting other women know of what's available to them during chemo, so yes it looks like I am going to be in the newspaper again, this is becoming a habit! For some women it will be irrelevant. for others not, so they have the choice. I know that for some health conditions, this is available on the NHS. Women with alopecia are offered it, but as far as I'm aware it is not readily available to cancer patients. I suppose this makes sense for those going through one treatment, the transient cancer club members, but for others who are living with metastatic cancer who now have chemo regularly it is perhaps something which should be looked at.Again, I think that this is an issue which has been raised but I don't have all of the facts. It is another example of the things that we don't think about but should. Without any doubt how we look is way down the list of what's important and when facing all of the challenges that we do, we end up with more beauty within than we could ever have hoped for, but all of the small details of fighting cancer can end up culminating into a rather large psychological battle and as we all know we have to tackle the small things to stop this. So I am going for my procedure today and will keep you posted of the outcome. These things are the small steps on the big journey, feeling normal and above all else taking control in an otherwise unpredictable life with cancer.
Buddha
After writing about my feelings on Saturday I received a lot of messages from people wishing me well and indeed volunteering to help fundraise. All of this brought a real smile to my face. These are the things that keep me going. Humanity is a wonderful thing and the power of sharing can never be over emphasised. This platform has been my saviour these last few months and the fact that others can gain a little insight about how best to deal with their own healthcare is a great feeling. I was reading an interesting article last week about why people blog in difficult times, especially when grieving. I am grieving, for the life that I have lost and so I could relate to this article. It basically said that it is a way of coming to terms with your situation and in a way it makes it real but manageable. This is all true. For me it is also about sharing and making people more powerful through knowledge.
Another thing I would like to share today is a practical tip for people going through chemo. As we all know the chemo leaves you in a bit of a state on so many levels. Hair loss is a big thing for many. I have already blogged about the whole wig issue, but the other aspect of hair loss is that all of your hair comes out. Now this is great when it comes to throwing away the razors for legs and underarms but not so great when you have no eyebrows or lashes. This has been the worst bit for me, in my first chemo and this one. Eyebrows and lashes are pretty resilient and take a while to come out. As a result for one round of chemo its not so bad. By the time they fall out the regime is almost over, thankfully. I remember when mine did come out that I felt like an alien, I was seriously ill in hospital at the time though so I didn't ponder it for too long. This time as I am on my current chemo indefinitely and am now in month 8 of it the eyebrow/lash loss has been a bit more of an issue. So today I am going to have my eyebrows permanently tattooed. A friend of mine introduced me to a lovely and very qualified girl who is doing it for me. She has a nursing background and this gives me even more faith in her. She is keen to cater for women who like me have lost their hair due to chemo. Obviously this is a procedure that many people get for cosmetic reasons but for some of us it goes a little deeper. I already know some women from clinic who have had it done and it really helps to make us feel better about ourselves in an already difficult time. This is not my most pressing issue (that would be staying alive) but it is one that raises its head. Therefore I am glad to be taking action today. This might be published as a way of letting other women know of what's available to them during chemo, so yes it looks like I am going to be in the newspaper again, this is becoming a habit! For some women it will be irrelevant. for others not, so they have the choice. I know that for some health conditions, this is available on the NHS. Women with alopecia are offered it, but as far as I'm aware it is not readily available to cancer patients. I suppose this makes sense for those going through one treatment, the transient cancer club members, but for others who are living with metastatic cancer who now have chemo regularly it is perhaps something which should be looked at.Again, I think that this is an issue which has been raised but I don't have all of the facts. It is another example of the things that we don't think about but should. Without any doubt how we look is way down the list of what's important and when facing all of the challenges that we do, we end up with more beauty within than we could ever have hoped for, but all of the small details of fighting cancer can end up culminating into a rather large psychological battle and as we all know we have to tackle the small things to stop this. So I am going for my procedure today and will keep you posted of the outcome. These things are the small steps on the big journey, feeling normal and above all else taking control in an otherwise unpredictable life with cancer.
Saturday 23 November 2013
A problem shared...
Never apologize for showing feeling. When you do so,
you apologize for the truth....
Benjamin Disraeli.
I haven't blogged for a couple of weeks. This is mainly because nothing of real consequence has sparked a thought which leads me to write. This is still true today, however I have recognised in the last few months that writing about my feelings really helps me and therefore I am going to put down what's going on in my mind and see if it helps. A nagging feeling has been hanging over me. I have tried many things to shake it off as it's leaving me very unsettled and I am not in as positive a place as I usually am and would like to be. My days are filled with many variations on the same theme and it is taking many twists and turns. It's quite basic this theme really and I'm pretty sure everyone will relate to it. It is simply this...I don't want to die.
I have no idea why this is so prominent in my mind at the moment. I have been living with secondary cancer for nearly 14 months and, especially in the last 6 months (great scan results etc) I have taken a lot of strength from my positive mindset. I actually had a very encouraging meeting with my consultant last week. I had asked her about referring me for a relatively new cancer treatment called radiofrequency ablation. This essentially burns the tumours off and has a fairly good success rate. She is going to refer me to the appropriate people to see whether or not I am a candidate for this (there is certain criteria to meet). She also brought up the idea of me having part of my lung removed and this is going to be looked at. Again this may not be possible, but it is another avenue of hope. I have to mention here that my recent press coverage of poor NHS care may have assisted in raising my profile and thus being offered more. I don't know but it does, for me, reinforce what I regularly talk about, taking action and being in control of your care. So all of this is surely positive, and yet my fears are riding high just now alongside a strong feeling of why me.
I am struggling to live in the day and instead doing what I know to be dangerous, and projecting. Maybe it's that time of year, Christmas is quite a nostalgic time with a "new" year just around the corner. Yesterday while at Silverburn I noticed a real Christmassy feeling and I found myself resenting those around me who were free to enjoy it without worrying about if this would be their last. Now, to rationalise this, I have no idea what anyone else is going through, just as no one knows what I am going through. I would very much doubt that strangers would look at me and suspect that I was undergoing chemo for terminal cancer, I look very well. I am aware of the fact that I don't know what is going on with others but at face value, they don't have my life, they haven't been dealt my hand! For those people who I do know don't have cancer I am also feeling resentment. Why the fuck did this happen to me? That's where I am at sadly. I am very tearful and without any warning I will suddenly have a horrible sinking feeling in my tummy and I will involuntarily say to myself "I don't want to die". Olivia dressed up last night as a teacher, which meant that she had some of my clothes on etc. She came downstairs and I laughed, then just as quickly I felt incredibly sad and upset that I may not get to see her as a real adult. These are the regular thoughts that I am experiencing. I'm consumed by the "poor me's". Today I am trying to shift my mood by examining all of the possibilities available to me. I am back on the trail of the clinic in California and its radical cancer treatment. I spoke to a girl I met for the first time the other day about it, and I said that it was an expensive option. She asked if I had thought about fundraising for it. I hadn't and I suppose my first thought was, well why should people give their money to me. Do I have low self esteem? It would appear so, as this is my one and only life that we are talking about. So today I am thinking well why not? It's a possibility and I am taking strength from it. It's all I can do. The odds are stacked against me but I must find a way to believe that anything is possible. There, that's better my feeling are out. Living with this illness is hard, sharing how you feel about it doesn't have to be.
you apologize for the truth....
Benjamin Disraeli.
I haven't blogged for a couple of weeks. This is mainly because nothing of real consequence has sparked a thought which leads me to write. This is still true today, however I have recognised in the last few months that writing about my feelings really helps me and therefore I am going to put down what's going on in my mind and see if it helps. A nagging feeling has been hanging over me. I have tried many things to shake it off as it's leaving me very unsettled and I am not in as positive a place as I usually am and would like to be. My days are filled with many variations on the same theme and it is taking many twists and turns. It's quite basic this theme really and I'm pretty sure everyone will relate to it. It is simply this...I don't want to die.
I have no idea why this is so prominent in my mind at the moment. I have been living with secondary cancer for nearly 14 months and, especially in the last 6 months (great scan results etc) I have taken a lot of strength from my positive mindset. I actually had a very encouraging meeting with my consultant last week. I had asked her about referring me for a relatively new cancer treatment called radiofrequency ablation. This essentially burns the tumours off and has a fairly good success rate. She is going to refer me to the appropriate people to see whether or not I am a candidate for this (there is certain criteria to meet). She also brought up the idea of me having part of my lung removed and this is going to be looked at. Again this may not be possible, but it is another avenue of hope. I have to mention here that my recent press coverage of poor NHS care may have assisted in raising my profile and thus being offered more. I don't know but it does, for me, reinforce what I regularly talk about, taking action and being in control of your care. So all of this is surely positive, and yet my fears are riding high just now alongside a strong feeling of why me.
I am struggling to live in the day and instead doing what I know to be dangerous, and projecting. Maybe it's that time of year, Christmas is quite a nostalgic time with a "new" year just around the corner. Yesterday while at Silverburn I noticed a real Christmassy feeling and I found myself resenting those around me who were free to enjoy it without worrying about if this would be their last. Now, to rationalise this, I have no idea what anyone else is going through, just as no one knows what I am going through. I would very much doubt that strangers would look at me and suspect that I was undergoing chemo for terminal cancer, I look very well. I am aware of the fact that I don't know what is going on with others but at face value, they don't have my life, they haven't been dealt my hand! For those people who I do know don't have cancer I am also feeling resentment. Why the fuck did this happen to me? That's where I am at sadly. I am very tearful and without any warning I will suddenly have a horrible sinking feeling in my tummy and I will involuntarily say to myself "I don't want to die". Olivia dressed up last night as a teacher, which meant that she had some of my clothes on etc. She came downstairs and I laughed, then just as quickly I felt incredibly sad and upset that I may not get to see her as a real adult. These are the regular thoughts that I am experiencing. I'm consumed by the "poor me's". Today I am trying to shift my mood by examining all of the possibilities available to me. I am back on the trail of the clinic in California and its radical cancer treatment. I spoke to a girl I met for the first time the other day about it, and I said that it was an expensive option. She asked if I had thought about fundraising for it. I hadn't and I suppose my first thought was, well why should people give their money to me. Do I have low self esteem? It would appear so, as this is my one and only life that we are talking about. So today I am thinking well why not? It's a possibility and I am taking strength from it. It's all I can do. The odds are stacked against me but I must find a way to believe that anything is possible. There, that's better my feeling are out. Living with this illness is hard, sharing how you feel about it doesn't have to be.
Thursday 7 November 2013
The next chapter
Money can't buy you happiness but it does bring you a more pleasant form of misery.
Spike Milligan
I received official confirmation that I will be given an early pension based on ill health. How does it feel? Where to begin? An old friend from Israel (who clearly hadn't been following my blogs, hmm) asked if I had won the lottery. Well here's the thing...
Life is a lottery, it really is. Not one of us knows what is going to happen, for good or bad. I didn't think that I would be giving up work for good at the age of 42. Had someone told me this may happen it would have been incomprehensible. Obviously my circumstances are adverse but can we really take good from bad? Again, I would not necessarily have believed so just a short time ago. However the saying that life is what you make it, is the truth. Without adopting a new perspective I would not have been able to cope very well with what is my life today. Olivia asked me the other day if I would still be here this Christmas. I was able to reassure her that I would, because I will, as far as I know, unless something happens outwith my control between now and then. This is the case for all of us. However when she then asked me about the following Christmas I was less confident of my reply. Instead of giving a yes or no answer I told her that as it was a long time away let's not think too much about it, but instead focus on the here and now. She seemed pretty happy with that answer, oh the wonder of being ten.
This is the problem we lose ourselves as we leave childhood. As adults in modern society we are often not living in the present, but instead projecting and thinking of what we will do next. Now, being in the position that I am in is a bit like being a child again. Every day is lived without giving too much time to thinking about the next one. It's very healthy and very liberating. Having confirmation that I will not be returning to work enhances that freedom. I am about to close one chapter of my life but at the same time I am going to open a new one. I will miss certain aspects of working life but I will enjoy the new aspects of being retired and I wont look back. This is all part of what I suppose is acceptance. My cancer diagnosis, subsequent NHS fuck ups and my somewhat precarious health condition today is what it is. I cannot change it. I can only do the best with it. If I wallow in it my time will be wasted. Today I recognise that. A year ago I could not have contemplated retiring. It would have seemed too final, too much like the cancer had taken my life. It has not, not yet. It has instead put me on a different path.
I will now, thanks to the SPPS and other finances put in place by me, have an income, which while by no means extravagant, will afford me a decent life. In this crazy busy life that we lead, not everyone thinks about bad news being bestowed upon them. It's no surprise, it's a bloody depressing thought. However with cancer on the increase and affecting younger people it is perhaps advisable that we do take stock of potential health problems both cancer and otherwise. Life is hard when you are terminally or chronically ill and finances should not add further to this. My advice is for people to ensure that should they become unwell, they have some financial cover in place. I took out policies many years ago on the advise of others, that as a single parent I would be best placed to have financial cover should anything happen. The difference in monthly outgoings was minimal. I wisely acted accordingly. This, thankfully has helped me through these unforeseen circumstances and allows me to retire and live a different life to the one I imagined, it allows me to accept what is going on. Money is a vital part of our wellbeing both mentally and physically. The philosophy of "it will never happen to me" is a good one and probably the only way to keep sane and actually live life. However, when it comes to protecting yourself should it happen to you, it's not a bad plan. At the risk of sounding like an advert for Aviva (that's who I was insured with), I would strongly recommend that people think about safeguarding themselves in times of illness. Over the years I would contemplate cancelling policies, with a why am I wasting money attitude. Thankfully I never did and I look back now and realise that the money I would have saved would have been spent on irrelevant things. I am aware that not everyone can afford to insure themselves as much as they would like but I would say that it is worth investigating. MacMillan research has shown that the people worst affected by cancer are those in full time employment. Government benefit agencies are not very compassionate to those diagnosed with cancer. Just in the last 2 years changes have been made to Disability Living Allowance, in that cancer patients are far less likely to be eligible for it. This, sadly will only get worse. It's not so dissimilar to my warnings about the NHS, take action, look after yourself. I can accept my life today and make the best of a bit of a bad hand, that would be harder to do if I had my life turned upside down through financial hardship. No one wants to think that they will get cancer, and hopefully you won't but there's no harm in dipping your toe in the murky water, protecting yourself and then carrying on with living life as happily as you can. So instead of buying the scratch card or the "winning" ticket every Saturday, perhaps it's wiser to invest in the most unpredictable lottery of them all... the one that we call life.
Spike Milligan
I received official confirmation that I will be given an early pension based on ill health. How does it feel? Where to begin? An old friend from Israel (who clearly hadn't been following my blogs, hmm) asked if I had won the lottery. Well here's the thing...
Life is a lottery, it really is. Not one of us knows what is going to happen, for good or bad. I didn't think that I would be giving up work for good at the age of 42. Had someone told me this may happen it would have been incomprehensible. Obviously my circumstances are adverse but can we really take good from bad? Again, I would not necessarily have believed so just a short time ago. However the saying that life is what you make it, is the truth. Without adopting a new perspective I would not have been able to cope very well with what is my life today. Olivia asked me the other day if I would still be here this Christmas. I was able to reassure her that I would, because I will, as far as I know, unless something happens outwith my control between now and then. This is the case for all of us. However when she then asked me about the following Christmas I was less confident of my reply. Instead of giving a yes or no answer I told her that as it was a long time away let's not think too much about it, but instead focus on the here and now. She seemed pretty happy with that answer, oh the wonder of being ten.
This is the problem we lose ourselves as we leave childhood. As adults in modern society we are often not living in the present, but instead projecting and thinking of what we will do next. Now, being in the position that I am in is a bit like being a child again. Every day is lived without giving too much time to thinking about the next one. It's very healthy and very liberating. Having confirmation that I will not be returning to work enhances that freedom. I am about to close one chapter of my life but at the same time I am going to open a new one. I will miss certain aspects of working life but I will enjoy the new aspects of being retired and I wont look back. This is all part of what I suppose is acceptance. My cancer diagnosis, subsequent NHS fuck ups and my somewhat precarious health condition today is what it is. I cannot change it. I can only do the best with it. If I wallow in it my time will be wasted. Today I recognise that. A year ago I could not have contemplated retiring. It would have seemed too final, too much like the cancer had taken my life. It has not, not yet. It has instead put me on a different path.
I will now, thanks to the SPPS and other finances put in place by me, have an income, which while by no means extravagant, will afford me a decent life. In this crazy busy life that we lead, not everyone thinks about bad news being bestowed upon them. It's no surprise, it's a bloody depressing thought. However with cancer on the increase and affecting younger people it is perhaps advisable that we do take stock of potential health problems both cancer and otherwise. Life is hard when you are terminally or chronically ill and finances should not add further to this. My advice is for people to ensure that should they become unwell, they have some financial cover in place. I took out policies many years ago on the advise of others, that as a single parent I would be best placed to have financial cover should anything happen. The difference in monthly outgoings was minimal. I wisely acted accordingly. This, thankfully has helped me through these unforeseen circumstances and allows me to retire and live a different life to the one I imagined, it allows me to accept what is going on. Money is a vital part of our wellbeing both mentally and physically. The philosophy of "it will never happen to me" is a good one and probably the only way to keep sane and actually live life. However, when it comes to protecting yourself should it happen to you, it's not a bad plan. At the risk of sounding like an advert for Aviva (that's who I was insured with), I would strongly recommend that people think about safeguarding themselves in times of illness. Over the years I would contemplate cancelling policies, with a why am I wasting money attitude. Thankfully I never did and I look back now and realise that the money I would have saved would have been spent on irrelevant things. I am aware that not everyone can afford to insure themselves as much as they would like but I would say that it is worth investigating. MacMillan research has shown that the people worst affected by cancer are those in full time employment. Government benefit agencies are not very compassionate to those diagnosed with cancer. Just in the last 2 years changes have been made to Disability Living Allowance, in that cancer patients are far less likely to be eligible for it. This, sadly will only get worse. It's not so dissimilar to my warnings about the NHS, take action, look after yourself. I can accept my life today and make the best of a bit of a bad hand, that would be harder to do if I had my life turned upside down through financial hardship. No one wants to think that they will get cancer, and hopefully you won't but there's no harm in dipping your toe in the murky water, protecting yourself and then carrying on with living life as happily as you can. So instead of buying the scratch card or the "winning" ticket every Saturday, perhaps it's wiser to invest in the most unpredictable lottery of them all... the one that we call life.
Wednesday 6 November 2013
Please sir can I have some more...
"Every man's disease is his personal property"
Alonzo Clark
"Knowledge is power"
Francis Bacon
Having written about my concerns over Pink October last week, I have been thinking more generally about our healthcare system and the part that we play in it. Obviously in my case, having breast cancer, I look at the role that the Pinkness of BC awareness plays in the potential for us to undermine the dangers of it. However, I am also aware that my journey through breast cancer and my current situation has also been partly due to the way in which we interact with our health care on all levels.
I guess I have to conclude that we are still a pretty deferential bunch when it comes to dealing with doctors and other health care professionals. I believe that I went into my diagnosis with a mixture of pink blind optimism and hard to shake old school deference. I have learned the hard way, but perhaps others could learn through my painful experience, the easier way.
Lesson one that I think is important to take heed of is this, our NHS is overstretched and it is managed by mainly non medical people. As a result of this the system is organised in such a way that its main aim is to be cost effective. It is run as a business, that is a reality and has been for a very long time. As a business it works on averages and statistics. It is not run on looking at each patient as an individual. That is simply not good business. Therefore the reality is that you have to look after yourself within this system. It is essentially your responsibility to get the best deal. You have to broker your own medical attention. To contextualise this here is my situation in brief. I was diagnosed with breast cancer and told that the proposed procedure was a lumpectomy followed by possibly/probably radiotherapy. Now this was on the premise that my cancer was grade 1 (maybe 2) and non aggressive. This was based on statistics showing that more breast cancer was likely to be grade 1 or 2. My cancer was grade 3, aggressive and triple negative (less researched and therefore less easy to treat with already developed drugs). I subsequently needed chemo. I have since been quoted this: "there is not a significantly higher rate of recurrence in women who have a lumpectomy versus a mastectomy". Now the key word here is "significantly". I (too late) have researched this and found that indeed there is a higher chance of recurrence for women ( I realise that men suffer from breast cancer too but it is mainly women) who have a lumpectomy. I have no interest in the word "significant" or indeed statistics. I am ME and I wish to be treated as such. I had a local recurrence which meant that it was the same cancer in the same area. Again this is my belief but none of it was discussed properly with me, if I remember correctly (but I was hysterical at the time) the original surgeon said to me "we may not have got all of it first time around". Hmm, they missed a bit. Now my point is this, a mastectomy would have ensured that this was not the case. For many a recurrence means that the cancer is in the chest wall. A lumpectomy versus mastectomy as far I know would not make a difference in such a scenario. This backs ups the theory of them both having pretty much the same outcome. However, this wasn't the case for ME. To date scans are still showing that I have no cancer in the chest wall, my recurrence was contained within the breast, without a breast I would NOT have had recurrence which then metastasised and would not be living with terminal cancer today. And so back to my whole message. I don't want to be treated based on averages, I want to be consulted, thoroughly on MY best plan of action. The one that will help to keep Lesley Graham alive. I wasn't! I would have liked to have been given all of the facts and then presented with my options. The facts that I have uncovered for myself today would, I believe, have led me to opt for a mastectomy 2 and a half years ago
Then there is the reality of this. Our system doesn't stretch to such luxuries. The breast clinic is a busy place. The waiting room is always full and there are only so many doctors there to deal with us. There isn't time to consult thoroughly with everyone. Bottom line, resources are finite. I understand this more than most having been a teacher for many years. I was frustrated at the shortcomings of the system (30 pupils ranging massively in ability all in one class, is not a recipe for a sound education for everyone), my hands like every other teacher were tied. I wasn't enabled by the system to do my job to the best of my abilities. I have no doubt that this is the same for doctors. They are working to business plans, created by people who are trying to save money. But the key to preserving your own health, no matter what the condition, is to be less deferential and more in control of your illness. Ask for more information about your illness and your future. Don't be afraid to take up more time with doctors, this is your life at stake. This is not easy, when given a diagnosis of cancer or another life threatening illness, you have enough to deal with, but it is essential I would say, and I think I am the proof.
Thursday 31 October 2013
Less pink...more think
Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity.
Martin Luther King
A couple of things have happened to provoke some thought that I felt I should put down. Firstly its Pink October and as we reach the end of this somewhat controversial breast cancer awareness month it has got me thinking. A friend of mine sent me an excellent link (and well worth a read) which is a blog by a woman who like me and my friend is terminally ill with metastatic breast cancer. Her blog is called "But doctor I hate pink". It is an honest look at the realities of breast cancer and it challenges the notion of breast cancer being the "curable" one. I have mentioned before that I am uncomfortable with general public perceptions of breast cancer and I feel strongly about the way in which the media, to my mind, trivialises it. Through various campaigns we have been drip fed the notion that catch it early enough and it's all ok. REALLY! I caught mine early and I am definitely not ok. This cancer will kill me.
I was further forced to think about all of this when at chemo clinic this week I met a woman who has recently been diagnosed with bone mets and is undergoing treatment. She was diagnosed 17 years ago with breast cancer and had a double mastectomy. In the intervening years as she put it she "fell under the radar". Her cancer is advanced and she is troubled by the fact that she didn't look into her health problems sooner. As a woman with no breasts she didn't attend for yearly mammograms and so the spread of her cancer went undetected until now. She seemed to blame herself. I too blame myself that I didn't demand to be seen sooner when I was experiencing problems due to recurrence after treatment. I wonder if I would be cancer free today had I known the right questions to ask. Had I demanded a mastectomy in the first instance would I have a different outcome. Who knows, maybe, probably, who knows. What I do know is that women die of breast cancer and I will be one of them. Another thing that I think I know is that Pink October has a tendency to brush such realities under the carpet.
To my mind the very pinkness of breast cancer awareness is in itself a from of trivialising it. I remember buying my first red( I much prefer red it connotes danger doesn't it) ribbon for AIDS awareness. It didn't feel like I was adorning a playful little cute ribbon. It felt like a real, grown up statement. Now this of course was a very big political issue due to the stigma attached to it and I have always felt that it was very worthwhile to raise awareness of it. More than 20 years later things have changed. The breakthroughs in medical advancements are incredible and the shift in public perceptions pretty amazing ( not everywhere I am well aware). So why is pink October so different? Many people have commented on the hijacking of the campaign. The glamorising of it even. Does it make people feel good whilst actually being able to indulge in consumerism. Probably. Without doing any research I am just thinking of what Pink October said to me over the years. I cant honestly think of much. That's how seriously it gets the message across about the reality of this disease. When I think about it my mind conjures up images of parties and rose wine and high heeled shoes. Good god, how frightening. My point in all of this is that if this is the medium for the message then as in the words of Marshall McLuhan does the medium become the message? If so then is it any wonder that we don't take our diagnosis quite as seriously as we might?
I mentioned that October 13th was Secondary Breast Cancer awareness day (note DAY). It came and it went and for those of us not living with this condition it passed with very little awareness. Some argue that we are the ones who the public would rather not know about. We will not survive. We are not the happy ending. I am inclined to agree. we don't present as a positive outcome so therefore don't fall into the fluffy feel good category. Having Pink parties would perhaps seem a little crass in the face of us who are dying. I could write forever about this stuff, BUT my point really is this Whatever it is that desensitises us to the realities of breast cancer we have to address it for what it is. We have to recognise the dangers and take our heads out of the pink clouds.
Martin Luther King
A couple of things have happened to provoke some thought that I felt I should put down. Firstly its Pink October and as we reach the end of this somewhat controversial breast cancer awareness month it has got me thinking. A friend of mine sent me an excellent link (and well worth a read) which is a blog by a woman who like me and my friend is terminally ill with metastatic breast cancer. Her blog is called "But doctor I hate pink". It is an honest look at the realities of breast cancer and it challenges the notion of breast cancer being the "curable" one. I have mentioned before that I am uncomfortable with general public perceptions of breast cancer and I feel strongly about the way in which the media, to my mind, trivialises it. Through various campaigns we have been drip fed the notion that catch it early enough and it's all ok. REALLY! I caught mine early and I am definitely not ok. This cancer will kill me.
I was further forced to think about all of this when at chemo clinic this week I met a woman who has recently been diagnosed with bone mets and is undergoing treatment. She was diagnosed 17 years ago with breast cancer and had a double mastectomy. In the intervening years as she put it she "fell under the radar". Her cancer is advanced and she is troubled by the fact that she didn't look into her health problems sooner. As a woman with no breasts she didn't attend for yearly mammograms and so the spread of her cancer went undetected until now. She seemed to blame herself. I too blame myself that I didn't demand to be seen sooner when I was experiencing problems due to recurrence after treatment. I wonder if I would be cancer free today had I known the right questions to ask. Had I demanded a mastectomy in the first instance would I have a different outcome. Who knows, maybe, probably, who knows. What I do know is that women die of breast cancer and I will be one of them. Another thing that I think I know is that Pink October has a tendency to brush such realities under the carpet.
To my mind the very pinkness of breast cancer awareness is in itself a from of trivialising it. I remember buying my first red( I much prefer red it connotes danger doesn't it) ribbon for AIDS awareness. It didn't feel like I was adorning a playful little cute ribbon. It felt like a real, grown up statement. Now this of course was a very big political issue due to the stigma attached to it and I have always felt that it was very worthwhile to raise awareness of it. More than 20 years later things have changed. The breakthroughs in medical advancements are incredible and the shift in public perceptions pretty amazing ( not everywhere I am well aware). So why is pink October so different? Many people have commented on the hijacking of the campaign. The glamorising of it even. Does it make people feel good whilst actually being able to indulge in consumerism. Probably. Without doing any research I am just thinking of what Pink October said to me over the years. I cant honestly think of much. That's how seriously it gets the message across about the reality of this disease. When I think about it my mind conjures up images of parties and rose wine and high heeled shoes. Good god, how frightening. My point in all of this is that if this is the medium for the message then as in the words of Marshall McLuhan does the medium become the message? If so then is it any wonder that we don't take our diagnosis quite as seriously as we might?
I mentioned that October 13th was Secondary Breast Cancer awareness day (note DAY). It came and it went and for those of us not living with this condition it passed with very little awareness. Some argue that we are the ones who the public would rather not know about. We will not survive. We are not the happy ending. I am inclined to agree. we don't present as a positive outcome so therefore don't fall into the fluffy feel good category. Having Pink parties would perhaps seem a little crass in the face of us who are dying. I could write forever about this stuff, BUT my point really is this Whatever it is that desensitises us to the realities of breast cancer we have to address it for what it is. We have to recognise the dangers and take our heads out of the pink clouds.
Tuesday 22 October 2013
It's a new day
Why do so many of us not give ourselves permission to be alive until we are absolutely assured that we will die? ...If we are not in [this present millisecond of life and conscious experience], we are not alive; we are merely thinking our lives. Yet we have seen so many die, looking back over their shoulders at their lives, shaking their heads and muttering in bewilderment, "What was that all about?"
Stephen Levine
I have managed to get through what was a very tough week. Every day last week I woke up with a sinking feeling that made me want to stay in bed with the covers over my head. I didn't want to face not only the day ahead but my life in general. I got through this by reminding myself that I must live in the day and accept how I am feeling. I have talked a lot in this blog about taking one day at a time and the virtues of it. I had lost sight of this philosophy temporarily and it unnerved me. I had to keep reminding myself of it and despite struggling mentally (and subsequently physically) continuing to remind myself, did eventually bring me back to some feeling of equilibrium. My mind is powerful. It has the power to change my entire existence. Last week I sank into a depression. I couldn't stop thinking about my future and the limitations of it. I was no longer focusing on my recent positive news. I was projecting and homing in on the bad stuff. This is damaging and it crippled me. I believe that when your mind is in a dark place it manifests itself in your physical wellbeing. I have written about this before and I actually re read some of my own blogs for inspiration. My body aches at the moment, that is a fact. I have undergone a full regime of chemo and the after effects are evident. In particular arthritic symptoms are wearing me down. Every joint hurts, even my toes. However this morning I got out of bed, still with the same pain, but with a different mind set and the pain is much more manageable. I have a full day planned and I am feeling good. I have tricked my body into feeling better through positive thinking. I have gradually built my self up over the last few days to a better place through tackling small things and interacting with more uplifting experiences. Just spending a couple of hours on Sunday evening looking at new research into my type of cancer helped me. We can't change the past, we can't predict the future but we can enjoy the moment. Today is a much better day thanks to remembering to take one day at a time.
Stephen Levine
I have managed to get through what was a very tough week. Every day last week I woke up with a sinking feeling that made me want to stay in bed with the covers over my head. I didn't want to face not only the day ahead but my life in general. I got through this by reminding myself that I must live in the day and accept how I am feeling. I have talked a lot in this blog about taking one day at a time and the virtues of it. I had lost sight of this philosophy temporarily and it unnerved me. I had to keep reminding myself of it and despite struggling mentally (and subsequently physically) continuing to remind myself, did eventually bring me back to some feeling of equilibrium. My mind is powerful. It has the power to change my entire existence. Last week I sank into a depression. I couldn't stop thinking about my future and the limitations of it. I was no longer focusing on my recent positive news. I was projecting and homing in on the bad stuff. This is damaging and it crippled me. I believe that when your mind is in a dark place it manifests itself in your physical wellbeing. I have written about this before and I actually re read some of my own blogs for inspiration. My body aches at the moment, that is a fact. I have undergone a full regime of chemo and the after effects are evident. In particular arthritic symptoms are wearing me down. Every joint hurts, even my toes. However this morning I got out of bed, still with the same pain, but with a different mind set and the pain is much more manageable. I have a full day planned and I am feeling good. I have tricked my body into feeling better through positive thinking. I have gradually built my self up over the last few days to a better place through tackling small things and interacting with more uplifting experiences. Just spending a couple of hours on Sunday evening looking at new research into my type of cancer helped me. We can't change the past, we can't predict the future but we can enjoy the moment. Today is a much better day thanks to remembering to take one day at a time.
Sunday 13 October 2013
Awareness
The 13th October is Secondary Breast Cancer Awareness Day, a day dedicated to spreading the word about the incurable side of the disease, the side where there are no survivors.
I returned from holiday yesterday and my mood has been ridiculously low ever since. In normal circumstances I suppose this would be attributed to the weather, however I don't live in normal circumstances I live with secondary and incurable breast cancer and my mood changes are somewhat complex.
Today is Secondary Breast Cancer Awareness Day. I have just read a really good article written by someone living with this and it made me emotional or should I say more emotional. She talks about the fact that there isn't that much awareness and people focus on the success stories and for many breast cancer is the "curable" one. Not for us who are living with secondary breast cancer. It was an emotional roller coaster this past week. I was lucky enough to get the chance to spend a week in the sun during my chemo break, but I feel I have paid a high price for this. Firstly, reading the article about the NHS incompetence I have faced was a challenge. This article talked about the things I try not to think about. Namely dying. It talked about my daughter being left without a mum. While I hope that this article can act as a warning to other women who may face similar issues, it left me very unsettled and my usual optimism was depleted. I hope that it returns soon but for the moment I am struggling. Reading this article while I was away was made more difficult because I wasn't on my own territory. This is difficult to explain but it meant that I couldn't combat negativity through my usual means, which are varied but tend to work. The holiday also reminded me of how much the chemo interferes with simple things, just everyday things. It affects my joints and climbing the stairs to my hotel room was more difficult than it should have been. Having very little hair meant more thought had to go into sitting by the pool, i.e I had to be careful to protect my head. I don't know, maybe these sound like trivial things but they left me with a sense of dissatisfaction that I don't normally feel. I spent my week away with my best friend of 25 years and we laughed a lot. We had an alcohol free holiday with chocolate instead and we talked endless nonsense. It reminded me of our time together as teenagers living in Israel. It made me nostalgic and I guess that this has added to my sadness as it reminds me that my life will not take the path that I expected aged 18. Today I have felt more low than perhaps any other time in my cancer journey. I am working hard to come through this and I am confident that I will. My low mood coincides with Secondary Breast Cancer Awareness Day and so perhaps all is as it should be for today because I am very aware of my secondary breast cancer.
I returned from holiday yesterday and my mood has been ridiculously low ever since. In normal circumstances I suppose this would be attributed to the weather, however I don't live in normal circumstances I live with secondary and incurable breast cancer and my mood changes are somewhat complex.
Today is Secondary Breast Cancer Awareness Day. I have just read a really good article written by someone living with this and it made me emotional or should I say more emotional. She talks about the fact that there isn't that much awareness and people focus on the success stories and for many breast cancer is the "curable" one. Not for us who are living with secondary breast cancer. It was an emotional roller coaster this past week. I was lucky enough to get the chance to spend a week in the sun during my chemo break, but I feel I have paid a high price for this. Firstly, reading the article about the NHS incompetence I have faced was a challenge. This article talked about the things I try not to think about. Namely dying. It talked about my daughter being left without a mum. While I hope that this article can act as a warning to other women who may face similar issues, it left me very unsettled and my usual optimism was depleted. I hope that it returns soon but for the moment I am struggling. Reading this article while I was away was made more difficult because I wasn't on my own territory. This is difficult to explain but it meant that I couldn't combat negativity through my usual means, which are varied but tend to work. The holiday also reminded me of how much the chemo interferes with simple things, just everyday things. It affects my joints and climbing the stairs to my hotel room was more difficult than it should have been. Having very little hair meant more thought had to go into sitting by the pool, i.e I had to be careful to protect my head. I don't know, maybe these sound like trivial things but they left me with a sense of dissatisfaction that I don't normally feel. I spent my week away with my best friend of 25 years and we laughed a lot. We had an alcohol free holiday with chocolate instead and we talked endless nonsense. It reminded me of our time together as teenagers living in Israel. It made me nostalgic and I guess that this has added to my sadness as it reminds me that my life will not take the path that I expected aged 18. Today I have felt more low than perhaps any other time in my cancer journey. I am working hard to come through this and I am confident that I will. My low mood coincides with Secondary Breast Cancer Awareness Day and so perhaps all is as it should be for today because I am very aware of my secondary breast cancer.
Tuesday 1 October 2013
Positivity
"If you don't like something change it; if you can't change it, change the way you think about it"
Mary Engelbreit
Well I didn't have an appointment at chemo clinic today and it was strange. The thing that struck me was the freedom it offered. This freedom was much more than not having to attend the hospital. I realised that my weeks have been spent curtailed not only by physically being there for the day every Tuesday but actually by the days both leading up to the appointment and following it. It goes a bit like this; Tuesday night is steroid madness so not much sleep is to be had. On a Wednesday I am tired but still bizarrely wired. Thursday is not too bad and I manage to generally get on with things. Friday I am tired and often find myself in bed at 8 o'clock that evening. Saturday and Sunday I am pretty tired and again often in bed early. Monday I find I have more energy but then I am preparing for the next day which is chemo again. I only really thought about how limiting this pattern is today. Don't get me wrong this has been progressive. The chemo has an accumulative effect and as the weeks have worn on this pattern has become more the norm than in the beginning. From this point of view I realise that it is a real relief to have this 3 week break and I am also glad that I will attend every fortnight from now on. Having said all of this, I am grateful that the chemo is working and I will pretty much put up with anything to stay alive. And alive I am.
I wondered what to do with myself today. I chose to do all of the things which have been niggling me, administrative tasks. I managed to tick off the jobs on the list. The biggest thing that I completed today was my application for early retirement. Yes I have decided to take the on-going pension. I think I knew that this would be the ultimate decision. I am determined to survive after all. Still it was quite a difficult thing to do. No one expects to be retiring at 42. I have such a mixture of emotions regarding this. On the one hand I feel cheated and hard done by that my illness has meant that I am no longer fit to work. On the other hand I feel liberated and privileged to be in the position to not have to go to work. Financially there are of course implications, however these are not as far reaching as they could be, due to my diligence in money matters, but changes still have to be made. As with everything else in this predicament I have to take the positive from it. I have to embrace the changes that cancer has brought to my life. By taking an early pension based on ill health the condition is that I can never work again. I have no idea whether or not I will ever feel able to work again, there is a good chance that I will not. However it still feels odd to be in this situation. For all the stress and strain that many of our jobs bring, it is still an integral part of our life. It can give us a sense of who we are. We also have friends at work and basically it's where we are used to going 5 days a week. I have been off work for the best part of 2 years. I only returned last May to then be re-diagnosed in the August. On Friday last week it was exactly a year ago that I stopped work for the second time. I have to say that this year has been different from my first absence. Firstly I have been undergoing treatment in one way or another for this entire time. Secondly I have a different perspective. In my first lot of treatment I was very ill and this didn't help matters, however I also had a different mind set. I have mentioned before that I became pretty depressed after my first lot of treatment as the reality of my situation hit home. I felt isolated and lacked motivation. My second lot of treatment admittedly has left me with much more energy which is a massive help, but it is definitely more than that. Being told that I have incurable cancer has made me appreciate everything more. One of these things is the freedom of not working five days a week. I outlined 20 positive things about my life recently and I have to say that a lot of them were derivative of not going to work. Ultimately, I have no choice in all of this, I have cancer which needs to be treated with chemotherapy regularly in order to keep me alive. This is a fact. What I choose to do with this fact is entirely up to me. I can wallow in self pity and bitch about it or I can take the good from it. I miss certain things about my job but I can also realistically remember the many things not to miss. This is my healthy perspective today. We really don't know what life is going to throw at us but it is in our hands how to deal with it.
Mary Engelbreit
Well I didn't have an appointment at chemo clinic today and it was strange. The thing that struck me was the freedom it offered. This freedom was much more than not having to attend the hospital. I realised that my weeks have been spent curtailed not only by physically being there for the day every Tuesday but actually by the days both leading up to the appointment and following it. It goes a bit like this; Tuesday night is steroid madness so not much sleep is to be had. On a Wednesday I am tired but still bizarrely wired. Thursday is not too bad and I manage to generally get on with things. Friday I am tired and often find myself in bed at 8 o'clock that evening. Saturday and Sunday I am pretty tired and again often in bed early. Monday I find I have more energy but then I am preparing for the next day which is chemo again. I only really thought about how limiting this pattern is today. Don't get me wrong this has been progressive. The chemo has an accumulative effect and as the weeks have worn on this pattern has become more the norm than in the beginning. From this point of view I realise that it is a real relief to have this 3 week break and I am also glad that I will attend every fortnight from now on. Having said all of this, I am grateful that the chemo is working and I will pretty much put up with anything to stay alive. And alive I am.
I wondered what to do with myself today. I chose to do all of the things which have been niggling me, administrative tasks. I managed to tick off the jobs on the list. The biggest thing that I completed today was my application for early retirement. Yes I have decided to take the on-going pension. I think I knew that this would be the ultimate decision. I am determined to survive after all. Still it was quite a difficult thing to do. No one expects to be retiring at 42. I have such a mixture of emotions regarding this. On the one hand I feel cheated and hard done by that my illness has meant that I am no longer fit to work. On the other hand I feel liberated and privileged to be in the position to not have to go to work. Financially there are of course implications, however these are not as far reaching as they could be, due to my diligence in money matters, but changes still have to be made. As with everything else in this predicament I have to take the positive from it. I have to embrace the changes that cancer has brought to my life. By taking an early pension based on ill health the condition is that I can never work again. I have no idea whether or not I will ever feel able to work again, there is a good chance that I will not. However it still feels odd to be in this situation. For all the stress and strain that many of our jobs bring, it is still an integral part of our life. It can give us a sense of who we are. We also have friends at work and basically it's where we are used to going 5 days a week. I have been off work for the best part of 2 years. I only returned last May to then be re-diagnosed in the August. On Friday last week it was exactly a year ago that I stopped work for the second time. I have to say that this year has been different from my first absence. Firstly I have been undergoing treatment in one way or another for this entire time. Secondly I have a different perspective. In my first lot of treatment I was very ill and this didn't help matters, however I also had a different mind set. I have mentioned before that I became pretty depressed after my first lot of treatment as the reality of my situation hit home. I felt isolated and lacked motivation. My second lot of treatment admittedly has left me with much more energy which is a massive help, but it is definitely more than that. Being told that I have incurable cancer has made me appreciate everything more. One of these things is the freedom of not working five days a week. I outlined 20 positive things about my life recently and I have to say that a lot of them were derivative of not going to work. Ultimately, I have no choice in all of this, I have cancer which needs to be treated with chemotherapy regularly in order to keep me alive. This is a fact. What I choose to do with this fact is entirely up to me. I can wallow in self pity and bitch about it or I can take the good from it. I miss certain things about my job but I can also realistically remember the many things not to miss. This is my healthy perspective today. We really don't know what life is going to throw at us but it is in our hands how to deal with it.
Saturday 28 September 2013
The beauty of sharing...
Often, we are too slow to recognize how much and in what ways we can assist each other through sharing knowledge.
Owen Arthur
I have a few things I want to say in this post. Firstly, I had wonderful news at the clinic last week. I knew that my tumours had shrunk and I previously blogged about it. However it was even better news when my consultant told me that the tumours were now so small that it would be difficult to give an accurate size of them. What a feeling. I am currently on a 3 week break and then I will return to clinic for fortnightly chemo. I am very grateful to my doctor for her attention to individual care. This is not a standard procedure but it is one that she thinks will benefit me and so she is willing to try it. She is the kind of person that we hope they all are, this sadly is not the case.
On that note I would also like to talk a little bit about my care over the past 2 and a bit years. I have already highlighted my negative experiences with the hope of alerting others to incompetence and I blogged about my response to my formal complaint. The response was quite simply inadequate and lets be honest an insult at that. I therefore decided to take it further. I telephoned a number of weeks ago to say that I was not satisfied with the response and could they tell me how to go about taking this to the Ombudsman. Interestingly at this point I was offered an opportunity to meet with someone to sit down and discuss my concerns. I will happily do so. The appointment should be in the next few weeks. In the meantime I have been given the chance to share my story more widely through a national newspaper, and hopefully help others going through or potentially going through this illness. This will basically highlight NHS incompetence and like this blog, it will pass on information for others who may not end up with incurable cancer as a result. I am delighted by this. Speaking at length about my journey for this article was in some ways a bit difficult. We of course talked in practical terms about my life expectancy etc. and in these moments I am reminded of my illness and what I am living with. I generally don't give in to that but of course the fact remains that my life will be cut short. I feel that I live within 2 minds. One sees my situation as manageable and filled with many positive aspects. It is this mind which doesn't believe in statistics, nor give in to them. It lives one day at a time and tries hard to enjoy each one of them. The other prepares for the worst and organises a will and worries about Olivia. Thankfully I tend to spend most of my time in mind number 1, but I have my moments.
On a really positive note I am going for a week of sunshine next weekend as I have a break from chemo. I am truly looking forward to this. In particular I am keen to get some sun as my joints are sore just now. The chemo attacks joints and cold or damp weather affects this further. Living in Scotland and being on lifelong chemo aren't such a great combination.. But hey, my tumours cannot be measured, a bit like my optimism some days, so I won't complain.
Owen Arthur
I have a few things I want to say in this post. Firstly, I had wonderful news at the clinic last week. I knew that my tumours had shrunk and I previously blogged about it. However it was even better news when my consultant told me that the tumours were now so small that it would be difficult to give an accurate size of them. What a feeling. I am currently on a 3 week break and then I will return to clinic for fortnightly chemo. I am very grateful to my doctor for her attention to individual care. This is not a standard procedure but it is one that she thinks will benefit me and so she is willing to try it. She is the kind of person that we hope they all are, this sadly is not the case.
On that note I would also like to talk a little bit about my care over the past 2 and a bit years. I have already highlighted my negative experiences with the hope of alerting others to incompetence and I blogged about my response to my formal complaint. The response was quite simply inadequate and lets be honest an insult at that. I therefore decided to take it further. I telephoned a number of weeks ago to say that I was not satisfied with the response and could they tell me how to go about taking this to the Ombudsman. Interestingly at this point I was offered an opportunity to meet with someone to sit down and discuss my concerns. I will happily do so. The appointment should be in the next few weeks. In the meantime I have been given the chance to share my story more widely through a national newspaper, and hopefully help others going through or potentially going through this illness. This will basically highlight NHS incompetence and like this blog, it will pass on information for others who may not end up with incurable cancer as a result. I am delighted by this. Speaking at length about my journey for this article was in some ways a bit difficult. We of course talked in practical terms about my life expectancy etc. and in these moments I am reminded of my illness and what I am living with. I generally don't give in to that but of course the fact remains that my life will be cut short. I feel that I live within 2 minds. One sees my situation as manageable and filled with many positive aspects. It is this mind which doesn't believe in statistics, nor give in to them. It lives one day at a time and tries hard to enjoy each one of them. The other prepares for the worst and organises a will and worries about Olivia. Thankfully I tend to spend most of my time in mind number 1, but I have my moments.
On a really positive note I am going for a week of sunshine next weekend as I have a break from chemo. I am truly looking forward to this. In particular I am keen to get some sun as my joints are sore just now. The chemo attacks joints and cold or damp weather affects this further. Living in Scotland and being on lifelong chemo aren't such a great combination.. But hey, my tumours cannot be measured, a bit like my optimism some days, so I won't complain.
Friday 27 September 2013
Keeping on, keeping on...
We can evade reality, but we cannot evade the consequences of evading reality
Ayn Rand
I normally write about my day at chemo clinic with positive energy. I don't feel like doing this tonight. I'm not in a great place, I had my scan this morning and while this process is nothing particularly noteworthy the outcome is difficult. I also had a tough day watching my lovely friend Carla suffering. She had come to clinic and was due liver scan results. Her most recent one had been good and she had asked about a new treatment called ablation therapy. This targets the tumour through key hole surgery. We had discussed it over coffee last week. We decided that it was a win win situation as if her liver had remained stable it was great news and if there was some growth the hopefully she would be put forward for this new therapy. Out of the blue she was told that her tumours had increased greatly. She was been put straight onto a new chemo. I am praying that it works. She is one of the strongest people I have met on my journey and an inspiration to me. She is 37 and has everything to live for. If anyone can keep fighting it is her. These are the moments that I am reminded of how precarious this life with cancer is. It is changeable and always unknown. It is with this that I will go into my scan result on Tuesday. I guess I am truly living as an optimistic pessimist, hmm does that make me a realist, many a debate surrounding this. Whatever it makes me it gets me through these challenging times. The day that I was re-diagnosed last August my world fell apart. I knew that I could never afford for that to happen again. As I have said before it is no bad thing to be prepared for the worst but still have hope for the best.
I also had another reality check moment. When having a scan it is standard procedure to be asked when your last period was in case of pregnancy. For the umpteenth time I explained that I was in menopause. The nurse said "oh you're very young for that". I explained that I was on my third lot of chemo. She was embarrassed and apologised that she hadn't read my notes. It was yet another reminder of my predicament as well as the less than perfect care service on offer. But hey, it is what it is. I could go on forever about incompetence but I will save it for the moment.
Ayn Rand
I normally write about my day at chemo clinic with positive energy. I don't feel like doing this tonight. I'm not in a great place, I had my scan this morning and while this process is nothing particularly noteworthy the outcome is difficult. I also had a tough day watching my lovely friend Carla suffering. She had come to clinic and was due liver scan results. Her most recent one had been good and she had asked about a new treatment called ablation therapy. This targets the tumour through key hole surgery. We had discussed it over coffee last week. We decided that it was a win win situation as if her liver had remained stable it was great news and if there was some growth the hopefully she would be put forward for this new therapy. Out of the blue she was told that her tumours had increased greatly. She was been put straight onto a new chemo. I am praying that it works. She is one of the strongest people I have met on my journey and an inspiration to me. She is 37 and has everything to live for. If anyone can keep fighting it is her. These are the moments that I am reminded of how precarious this life with cancer is. It is changeable and always unknown. It is with this that I will go into my scan result on Tuesday. I guess I am truly living as an optimistic pessimist, hmm does that make me a realist, many a debate surrounding this. Whatever it makes me it gets me through these challenging times. The day that I was re-diagnosed last August my world fell apart. I knew that I could never afford for that to happen again. As I have said before it is no bad thing to be prepared for the worst but still have hope for the best.
I also had another reality check moment. When having a scan it is standard procedure to be asked when your last period was in case of pregnancy. For the umpteenth time I explained that I was in menopause. The nurse said "oh you're very young for that". I explained that I was on my third lot of chemo. She was embarrassed and apologised that she hadn't read my notes. It was yet another reminder of my predicament as well as the less than perfect care service on offer. But hey, it is what it is. I could go on forever about incompetence but I will save it for the moment.
Money matters...
“Money often costs too much”
Ralph Waldo Emerson
I am having a bad day. I am in the process of applying for early retirement. I could possibly just end with that and most people would understand why I am having a bad day. I am 42! However, to end there would only be a small part of the story. I am facing a real dilemma. It is one that no one can help with. It is one which relies on me and me alone. I have to decide whether I settle for realism or make a leap of faith and continue with optimism.
I have 2 choices available to me. The first is to commute my retirement package and take a large lump sum based on me not being around for all that long. The other is to take a much smaller lump sum and a reasonable pension for as long as I live. Fuck what a quandary. So you see why I can be realistic or optimistic. The difference in capital is about 7 years of me surviving this shit. I pretty much know that asking for a professional opinion would only bring me news that I don't want to hear. It would be news based on statistics and I'm just not willing to be that or indeed fulfil the prophecy. It's all down to me and how I choose to view my situation. I have been going over this for the last few days and it has seriously dragged me down. I felt myself starting to give up. Part of me feels that to take the lump sum is to sign my own death warrant, mentally. I normally wake up and feel good and plan the day but the last 2 days I have had a feeling of being very unsettled when getting out of bed. I suppose my forthcoming scan also plays a part. Overall though I am feeling anxious about this decision. Lets face it, it's no surprise and it's not a decision that anyone wants to be dealing with.
Trying to rationalise finances in the face of terminal cancer is a real pain. In an ideal world finances wouldn't come into such a situation, but they do. It has been shown that women diagnosed with breast cancer who have a full time job face more financial hardship than those who don't work. Some people lose their home, it's awful. McMillan are excellent in their advice and monetary help. Not everyone takes advantage of this and they should. In such times it is also worthwhile applying for Disability Living Allowance, it is your entitlement. Again many people don't do this, especially those who are not familiar with the world of benefits. I applied for DLA during my first diagnosis, I was unsurprisingly refused. I investigated and found that the majority of cancer patients are turned away initially. There is an appeal system, again most people don't bother applying. Often feeling ashamed at asking for help. On principle I did appeal. I was more than happy to go before a panel and state my case. Life was unfair enough. It took 9 months from first applying and ironically I was only days away from my second diagnosis but I won my case and I was given what I was due. As a result I am still receiving a weekly amount, it all helps in times when I am no longer able to earn a wage. These are the things that no one tells you. Life becomes unrecognisable in so many different ways when diagnosed with cancer. Taking practical steps isn't always easy but it is definitely worth it. And so here I am taking more practical steps but struggling with my decision. The bottom line is that I don't want to give in to this illness. I want to be here for as long as possible. However, real life dictates more realistic choices. Life is good right now and it allows me to put off thinking too much about my future and how long I've got. Taking my pension changes that and forces me to look at the facts more closely. I am thinking that I will make my final decision after my scan result. Maybe I'm just burying my head in the sand a while longer. Hey right now I feel that's my prerogative.
Ralph Waldo Emerson
I am having a bad day. I am in the process of applying for early retirement. I could possibly just end with that and most people would understand why I am having a bad day. I am 42! However, to end there would only be a small part of the story. I am facing a real dilemma. It is one that no one can help with. It is one which relies on me and me alone. I have to decide whether I settle for realism or make a leap of faith and continue with optimism.
I have 2 choices available to me. The first is to commute my retirement package and take a large lump sum based on me not being around for all that long. The other is to take a much smaller lump sum and a reasonable pension for as long as I live. Fuck what a quandary. So you see why I can be realistic or optimistic. The difference in capital is about 7 years of me surviving this shit. I pretty much know that asking for a professional opinion would only bring me news that I don't want to hear. It would be news based on statistics and I'm just not willing to be that or indeed fulfil the prophecy. It's all down to me and how I choose to view my situation. I have been going over this for the last few days and it has seriously dragged me down. I felt myself starting to give up. Part of me feels that to take the lump sum is to sign my own death warrant, mentally. I normally wake up and feel good and plan the day but the last 2 days I have had a feeling of being very unsettled when getting out of bed. I suppose my forthcoming scan also plays a part. Overall though I am feeling anxious about this decision. Lets face it, it's no surprise and it's not a decision that anyone wants to be dealing with.
Trying to rationalise finances in the face of terminal cancer is a real pain. In an ideal world finances wouldn't come into such a situation, but they do. It has been shown that women diagnosed with breast cancer who have a full time job face more financial hardship than those who don't work. Some people lose their home, it's awful. McMillan are excellent in their advice and monetary help. Not everyone takes advantage of this and they should. In such times it is also worthwhile applying for Disability Living Allowance, it is your entitlement. Again many people don't do this, especially those who are not familiar with the world of benefits. I applied for DLA during my first diagnosis, I was unsurprisingly refused. I investigated and found that the majority of cancer patients are turned away initially. There is an appeal system, again most people don't bother applying. Often feeling ashamed at asking for help. On principle I did appeal. I was more than happy to go before a panel and state my case. Life was unfair enough. It took 9 months from first applying and ironically I was only days away from my second diagnosis but I won my case and I was given what I was due. As a result I am still receiving a weekly amount, it all helps in times when I am no longer able to earn a wage. These are the things that no one tells you. Life becomes unrecognisable in so many different ways when diagnosed with cancer. Taking practical steps isn't always easy but it is definitely worth it. And so here I am taking more practical steps but struggling with my decision. The bottom line is that I don't want to give in to this illness. I want to be here for as long as possible. However, real life dictates more realistic choices. Life is good right now and it allows me to put off thinking too much about my future and how long I've got. Taking my pension changes that and forces me to look at the facts more closely. I am thinking that I will make my final decision after my scan result. Maybe I'm just burying my head in the sand a while longer. Hey right now I feel that's my prerogative.
The never ending story of scan fear
In the case of news, we should always wait for the sacrament of confirmation.
Voltaire
Well the letter arrived today, I always recognise the envelopes unfortunately. I have a scan on Tuesday the 17th September. Its very quick. I am assuming that my Oncologist wants to see what's happening in my lung as she will have to justify her decision to keep me on this chemo. I am praying that she finds such justification.
My biggest fear, as always is that I go into the room of doom for the results and am told that they have now found other tumours elsewhere. Metastatic cancer tends to be alphabetic in its commonly found spread areas; bone, brain, liver, lung. I guess the odds are bone then. Let's hope not. Of course it's no big surprise that my currently diagnosed and only spread is last on the list, I hope to keep it that way. I am going to have to really focus on practising this living in the day philosophy. I cannot afford to spend the next 13 days in a state of fear, it doesn't change the outcome but instead robs me of time, time which I need to make the most of. For this reason I am going to make a plan for every day. Whether it is banal stuff like the shopping or more exciting things like booking a holiday for my 3 week chemo break. I must do this. I must have something to keep me occupied. You would think that the scans would get easier, but the reality is that they don't. Thus it is crucial to find little tricks to keep you sane. My friend is finishing work for a while in a couple of days and we are going to look into doing some yoga. This is now even more important to do over the next couple of weeks. I have a class in mind so I will make it happen. That's all I can do, keep busy and try not to imagine the worst. I cannot give in to my crazy mind conjuring up all kinds of awful outcomes. Whatever will be will be. Please let it be good.
Voltaire
Well the letter arrived today, I always recognise the envelopes unfortunately. I have a scan on Tuesday the 17th September. Its very quick. I am assuming that my Oncologist wants to see what's happening in my lung as she will have to justify her decision to keep me on this chemo. I am praying that she finds such justification.
My biggest fear, as always is that I go into the room of doom for the results and am told that they have now found other tumours elsewhere. Metastatic cancer tends to be alphabetic in its commonly found spread areas; bone, brain, liver, lung. I guess the odds are bone then. Let's hope not. Of course it's no big surprise that my currently diagnosed and only spread is last on the list, I hope to keep it that way. I am going to have to really focus on practising this living in the day philosophy. I cannot afford to spend the next 13 days in a state of fear, it doesn't change the outcome but instead robs me of time, time which I need to make the most of. For this reason I am going to make a plan for every day. Whether it is banal stuff like the shopping or more exciting things like booking a holiday for my 3 week chemo break. I must do this. I must have something to keep me occupied. You would think that the scans would get easier, but the reality is that they don't. Thus it is crucial to find little tricks to keep you sane. My friend is finishing work for a while in a couple of days and we are going to look into doing some yoga. This is now even more important to do over the next couple of weeks. I have a class in mind so I will make it happen. That's all I can do, keep busy and try not to imagine the worst. I cannot give in to my crazy mind conjuring up all kinds of awful outcomes. Whatever will be will be. Please let it be good.
One day at a time...
"There are lies, damned lies and statistics"
Mark Twain (thought to derive from Benjamin Disraeli)
Well it was chemo clinic today and as always it was eventful. Firstly my nurse asked me if I wanted to have a chat with my oncologist regarding my complaint about my care following my initial treatment. I already outlined my response to this complaint and suffice to say that I was not satisfied with it (polite way of putting it). I have subsequently contacted the complaints department and stated that I would like to take my case further. The complaints department therefore formally offered me an appointment to sit down and discuss my concerns with someone. They also let my oncologist know about this, I assume, hence her invitation to talk to her. I will say again that my oncologist has been nothing but professional these last 2 years and my issues lie elsewhere. I have decided to take up the offer of meeting with someone at the complaints department as this is hopefully another step in the direction of addressing my concerns head on and hopefully preventing someone else from going through my experience. I will update the blog accordingly.
This incident once again coincided with another happening today. Someone told me that my friend Janette had appeared upset after her meeting downstairs with the Oncologist. I was concerned for her. When I saw her she told me that the doctor had said to her that it was likely that when she finished chemo the cancer would return(or start growing again) within six months to a year. Janette is in exactly the same boat ( a very fucking leaky one) as me, she is triple negative with metastatic tumours. I therefore felt her devastation. I have not personally had those words spoken to me but perhaps they have been said in other ways. It certainly goes a long way to explaining why they are keeping me on it. I wasn't shocked lets say that, but as Janette pointed out hearing these words out loud is hard to take. The chemo leaves most people wrecked and praying for the end of the 18 week regime. To be told that it has such a short window of remission is to say the least disheartening. This is the harsh reality of triple negative breast cancer and it also reinforces the notion that women should get all of the facts about their cancer and demand to be heard when they feel that something is not right. Therefore coming straight on the back of my chat with my nurse it strengthened my determination to keep going with my complaint, things happen for a reason it would seem. So I came home today and after my initial chemo induced coma, I got straight online looking to arm myself with a little power through knowledge. I found a mixture of information. The one that stood out was on an information website on this type of cancer and the prognosis. It stated that "the median life expectancy for women with triple negative metastatic breast cancer is one year". Well I have outlived this statistic already. I choose not to believe statistics as I am an individual. I am me. I have a very positive attitude these days and my journey will be as individual as I am. As a Modern Studies teacher I spent many a lesson explaining to my pupils to be very wary of statistics. I am practising what I preached. I wanted to post some statements from women on various forums who are aboard the seemingly sinking ship.
" I feel as though I am living on borrowed time"
" I hate this evil, clever cancer"
"Every time I look up anything on triple negative cancer it fills me with gloom about how aggressive and difficult to treat it is"
"The trip neg is a stinker...sneaky, unknown, and criminal.
"On July 24, 2007 I was declared NED. On Aug 15 (my 41st b-day) I had a local recurrence...on Aug 24, I was told the cancer has spread to my bones and liver.I really can't understand how all this could happen in a month...total elation, to total devastation."
"I am triple negative and I have no intention of only living for 12 months"
I choose to go with the last statement. Statistics shamistics. I also looked up various sites on new developments on TNBC. There are many. It is encouraging and it gives me hope. Every day is a new day in the cancer research world and this particular type of cancer has been recognised recently for what it is; deadly and hard to understand and under researched. For this reason I believe that new research will overcome this. I am hopeful that Janette and I will share many more chats at clinic when the time comes for us to go onto a new chemo. In the meantime I have to live in the day. One day at a time and all that. Here's to that Janette.
Mark Twain (thought to derive from Benjamin Disraeli)
Well it was chemo clinic today and as always it was eventful. Firstly my nurse asked me if I wanted to have a chat with my oncologist regarding my complaint about my care following my initial treatment. I already outlined my response to this complaint and suffice to say that I was not satisfied with it (polite way of putting it). I have subsequently contacted the complaints department and stated that I would like to take my case further. The complaints department therefore formally offered me an appointment to sit down and discuss my concerns with someone. They also let my oncologist know about this, I assume, hence her invitation to talk to her. I will say again that my oncologist has been nothing but professional these last 2 years and my issues lie elsewhere. I have decided to take up the offer of meeting with someone at the complaints department as this is hopefully another step in the direction of addressing my concerns head on and hopefully preventing someone else from going through my experience. I will update the blog accordingly.
This incident once again coincided with another happening today. Someone told me that my friend Janette had appeared upset after her meeting downstairs with the Oncologist. I was concerned for her. When I saw her she told me that the doctor had said to her that it was likely that when she finished chemo the cancer would return(or start growing again) within six months to a year. Janette is in exactly the same boat ( a very fucking leaky one) as me, she is triple negative with metastatic tumours. I therefore felt her devastation. I have not personally had those words spoken to me but perhaps they have been said in other ways. It certainly goes a long way to explaining why they are keeping me on it. I wasn't shocked lets say that, but as Janette pointed out hearing these words out loud is hard to take. The chemo leaves most people wrecked and praying for the end of the 18 week regime. To be told that it has such a short window of remission is to say the least disheartening. This is the harsh reality of triple negative breast cancer and it also reinforces the notion that women should get all of the facts about their cancer and demand to be heard when they feel that something is not right. Therefore coming straight on the back of my chat with my nurse it strengthened my determination to keep going with my complaint, things happen for a reason it would seem. So I came home today and after my initial chemo induced coma, I got straight online looking to arm myself with a little power through knowledge. I found a mixture of information. The one that stood out was on an information website on this type of cancer and the prognosis. It stated that "the median life expectancy for women with triple negative metastatic breast cancer is one year". Well I have outlived this statistic already. I choose not to believe statistics as I am an individual. I am me. I have a very positive attitude these days and my journey will be as individual as I am. As a Modern Studies teacher I spent many a lesson explaining to my pupils to be very wary of statistics. I am practising what I preached. I wanted to post some statements from women on various forums who are aboard the seemingly sinking ship.
" I feel as though I am living on borrowed time"
" I hate this evil, clever cancer"
"Every time I look up anything on triple negative cancer it fills me with gloom about how aggressive and difficult to treat it is"
"The trip neg is a stinker...sneaky, unknown, and criminal.
"On July 24, 2007 I was declared NED. On Aug 15 (my 41st b-day) I had a local recurrence...on Aug 24, I was told the cancer has spread to my bones and liver.I really can't understand how all this could happen in a month...total elation, to total devastation."
"I am triple negative and I have no intention of only living for 12 months"
I choose to go with the last statement. Statistics shamistics. I also looked up various sites on new developments on TNBC. There are many. It is encouraging and it gives me hope. Every day is a new day in the cancer research world and this particular type of cancer has been recognised recently for what it is; deadly and hard to understand and under researched. For this reason I believe that new research will overcome this. I am hopeful that Janette and I will share many more chats at clinic when the time comes for us to go onto a new chemo. In the meantime I have to live in the day. One day at a time and all that. Here's to that Janette.
Giving in to it...
"Fill what's empty, empty what's full, and have a scratch for every itch"
Alice Roosevelt Longworth
After my emotional day/evening I was glad to go to sleep last night. I was therefore annoyed to be wakened during the night with an insatiable itch around my mastectomy scar. It was an itch which came from the inside and just couldn't be scratched. I ended up getting out of bed and going downstairs for a while. This left me pretty tired this morning but it got me thinking.
My emotions yesterday were an itch which needed to be scratched, but like my scar tissue they were hard to access. I realised that we all need to cry sometimes. It is naturally healing and it soothes. I haven't done too much crying of late. I quit alcohol completely some time ago. This has given me wonderful health benefits of that there is no doubt. However I suppose like for many, alcohol loosened my inhibitions and sometimes allowed me to cry. To be fair it was making me cry far too much in the end but it had been a release at times. I needed a little cry today. I have listened to some of my favourite songs both happy and a bit sad and I have shed a few tears. It felt good. It was a release. I didn't wallow or get carried away with it. I just allowed some of my emotions to be released through tears. I scratched the itch. We cant change what is happening to us when living with cancer and sometimes we wont feel like smiling through it. It's ok to give in to this, in fact it's necessary. I'm now ready for a walk in the park with Oscar. Its a gorgeous day and I'm looking forward to basking in what remains of the summer sunshine without worrying too much about its imminent departure.
Alice Roosevelt Longworth
After my emotional day/evening I was glad to go to sleep last night. I was therefore annoyed to be wakened during the night with an insatiable itch around my mastectomy scar. It was an itch which came from the inside and just couldn't be scratched. I ended up getting out of bed and going downstairs for a while. This left me pretty tired this morning but it got me thinking.
My emotions yesterday were an itch which needed to be scratched, but like my scar tissue they were hard to access. I realised that we all need to cry sometimes. It is naturally healing and it soothes. I haven't done too much crying of late. I quit alcohol completely some time ago. This has given me wonderful health benefits of that there is no doubt. However I suppose like for many, alcohol loosened my inhibitions and sometimes allowed me to cry. To be fair it was making me cry far too much in the end but it had been a release at times. I needed a little cry today. I have listened to some of my favourite songs both happy and a bit sad and I have shed a few tears. It felt good. It was a release. I didn't wallow or get carried away with it. I just allowed some of my emotions to be released through tears. I scratched the itch. We cant change what is happening to us when living with cancer and sometimes we wont feel like smiling through it. It's ok to give in to this, in fact it's necessary. I'm now ready for a walk in the park with Oscar. Its a gorgeous day and I'm looking forward to basking in what remains of the summer sunshine without worrying too much about its imminent departure.
Some days are better than others
Some days you wake up with her complaining,
some sunny days you wish it was raining,
some days are sulky, some days have a grin
And some days have bouncers and won't let you in
U2 - Some Days Are Better Than Others
Moods are a funny thing and can change like the weather. I had a very upbeat day yesterday and I came up with lots of reasons to be happy. I meant every one of them. Yet, today I woke up with an unsettling and unshakeable feeling of ennui. I have rationalised it, I think. As the day wore on and the sun broke through the clouds my mood became increasingly restless and a little bit sad. I believe that this was due to having spent some of my day yesterday discussing what I didn't ever think I would be discussing at the age of 42; how best to keep me alive. Todays latter glorious weather I believe made me sad because as it is late summer I was acutely aware of the fact that these sunny afternoons were coming to an end. I love summer and the sun. In late summer I always sit out whenever possible. I do this with a hint of melancholy at the best of times, but normally I tell myself that it's OK as summer will be here again. I think this is where I stumbled today. I asked myself if summer really would be here again for me. I tried not to enter into this dangerous zone but I did. I let my mind go the dark side for a while. I found myself thinking ridiculous thoughts like, what will I do with all of my lovely summer clothes if I don't live until next summer. It's good to know that I can still be shallow in profound moments! I also let my mind wander into the awful "how will I cope on my death bed" scenario. None of it good. I was humbled today and reminded that living with incurable cancer is not easy and it's wholly unpredictable. It takes a lot sometimes to stand up to it and not be beaten by it. My blogs are mainly positive and this is an honest account at all times, but today I gave in to a wee bit of sadness and I thought that I would share it. Tomorrow is another day.
some sunny days you wish it was raining,
some days are sulky, some days have a grin
And some days have bouncers and won't let you in
U2 - Some Days Are Better Than Others
Moods are a funny thing and can change like the weather. I had a very upbeat day yesterday and I came up with lots of reasons to be happy. I meant every one of them. Yet, today I woke up with an unsettling and unshakeable feeling of ennui. I have rationalised it, I think. As the day wore on and the sun broke through the clouds my mood became increasingly restless and a little bit sad. I believe that this was due to having spent some of my day yesterday discussing what I didn't ever think I would be discussing at the age of 42; how best to keep me alive. Todays latter glorious weather I believe made me sad because as it is late summer I was acutely aware of the fact that these sunny afternoons were coming to an end. I love summer and the sun. In late summer I always sit out whenever possible. I do this with a hint of melancholy at the best of times, but normally I tell myself that it's OK as summer will be here again. I think this is where I stumbled today. I asked myself if summer really would be here again for me. I tried not to enter into this dangerous zone but I did. I let my mind go the dark side for a while. I found myself thinking ridiculous thoughts like, what will I do with all of my lovely summer clothes if I don't live until next summer. It's good to know that I can still be shallow in profound moments! I also let my mind wander into the awful "how will I cope on my death bed" scenario. None of it good. I was humbled today and reminded that living with incurable cancer is not easy and it's wholly unpredictable. It takes a lot sometimes to stand up to it and not be beaten by it. My blogs are mainly positive and this is an honest account at all times, but today I gave in to a wee bit of sadness and I thought that I would share it. Tomorrow is another day.
Let's talk
"A child seldom needs a good talking to, as a good listening to"
Robert Brault
I visited the Hospice yesterday with Olivia. She goes once a week to speak with a child psychologist about her feelings surrounding my illness and indeed anything else that she wants to talk about. Another huge learning curve for me has been to recognise the effect that cancer has on your loved ones. Family and friends are not spared the ups and downs of the journey, in fact sometimes I fear that it may actually be worse for them. I have recognised how important it is for them to have an outlet. They need to share how they feel about it. They have anger, sadness, hope and despair just the same as the person who has actually been diagnosed. There is a lot of help and support out there for these people and I would strongly recommend that it be accessed. When I was first diagnosed I viewed my situation very much as a transient one. I was not hanging around in this cancer club, I was definitely a flying visitor. As a result I didn't take advantage of all of the help that is available. With hindsight I probably should have. When I was diagnosed with incurable cancer it changed everything and I now see the importance of speaking about your feelings. I now have spoken to qualified people and it has helped. More importantly Olivia has somewhere to speak freely. The Prince and Princess Hospice is a wonderful place and provides all kinds of help and support. For anyone looking to guide their children through the minefield of cancer I would say that it is worth contacting outside agencies. Maggie's have a lot of information on this and MacMillan are excellent for advice. I think that the Hospice is only for terminal patients but I am not sure and so would say to look into it.
The hardest part of diagnosis is the prospect of leaving a child or children behind. I have worried more about that than anything else. I have also come to recognise that children are very adept at covering things up. They don't always let on how they feel. It can appear that they are coping well but inside they are harbouring all sorts of concerns. In my experience they are best speaking to someone on the outside. Having said this Olivia presents a very balanced front. I truly don't know whether or not she is coping really well or not. I think that she is. I again am not sure if this is partly due to denial. I don't think so.When I was given the news about my lung cancer she asked me where she would live if I died. When I gave her the possibilities she found reasons as to why this would be a problem (practical ones). I assured her that she would be loved and have a good life if I wasn't around. Her answer was that she didn't want to live, full stop, if I wasn't around. This was hard to hear. My way of dealing with the situation was to point out that for the moment I wasn't going anywhere and I would be treated and we would take it one day at a time. As a child she perhaps found this one day at a time philosophy easier to deal with than me. She seemed to accept this and that is how we live. She is a typical 10 year old. She doesn't tread carefully around me or behave in any way different to any other child. She infuriates me and drives me as nuts as any other child does any other parent.Sometimes I am immature and think "how selfish". Really. I have to remind myself that this is good, this is living in the day. Yesterday she announced that she feels ok at the moment and would rather play with her friends after school than attend the hospice. This is what we are going to do and the door is open whenever she may feel the need for it. Maybe the last few months have been enough of a help. I don't know. All I do know is that there is help and support there if it is needed and I personally would recommend that any one in a similar situation to me look into it.
Robert Brault
I visited the Hospice yesterday with Olivia. She goes once a week to speak with a child psychologist about her feelings surrounding my illness and indeed anything else that she wants to talk about. Another huge learning curve for me has been to recognise the effect that cancer has on your loved ones. Family and friends are not spared the ups and downs of the journey, in fact sometimes I fear that it may actually be worse for them. I have recognised how important it is for them to have an outlet. They need to share how they feel about it. They have anger, sadness, hope and despair just the same as the person who has actually been diagnosed. There is a lot of help and support out there for these people and I would strongly recommend that it be accessed. When I was first diagnosed I viewed my situation very much as a transient one. I was not hanging around in this cancer club, I was definitely a flying visitor. As a result I didn't take advantage of all of the help that is available. With hindsight I probably should have. When I was diagnosed with incurable cancer it changed everything and I now see the importance of speaking about your feelings. I now have spoken to qualified people and it has helped. More importantly Olivia has somewhere to speak freely. The Prince and Princess Hospice is a wonderful place and provides all kinds of help and support. For anyone looking to guide their children through the minefield of cancer I would say that it is worth contacting outside agencies. Maggie's have a lot of information on this and MacMillan are excellent for advice. I think that the Hospice is only for terminal patients but I am not sure and so would say to look into it.
The hardest part of diagnosis is the prospect of leaving a child or children behind. I have worried more about that than anything else. I have also come to recognise that children are very adept at covering things up. They don't always let on how they feel. It can appear that they are coping well but inside they are harbouring all sorts of concerns. In my experience they are best speaking to someone on the outside. Having said this Olivia presents a very balanced front. I truly don't know whether or not she is coping really well or not. I think that she is. I again am not sure if this is partly due to denial. I don't think so.When I was given the news about my lung cancer she asked me where she would live if I died. When I gave her the possibilities she found reasons as to why this would be a problem (practical ones). I assured her that she would be loved and have a good life if I wasn't around. Her answer was that she didn't want to live, full stop, if I wasn't around. This was hard to hear. My way of dealing with the situation was to point out that for the moment I wasn't going anywhere and I would be treated and we would take it one day at a time. As a child she perhaps found this one day at a time philosophy easier to deal with than me. She seemed to accept this and that is how we live. She is a typical 10 year old. She doesn't tread carefully around me or behave in any way different to any other child. She infuriates me and drives me as nuts as any other child does any other parent.Sometimes I am immature and think "how selfish". Really. I have to remind myself that this is good, this is living in the day. Yesterday she announced that she feels ok at the moment and would rather play with her friends after school than attend the hospice. This is what we are going to do and the door is open whenever she may feel the need for it. Maybe the last few months have been enough of a help. I don't know. All I do know is that there is help and support there if it is needed and I personally would recommend that any one in a similar situation to me look into it.
Living...
“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”
Douglas Adams
It was confirmed today that I will remain on this chemo indefinitely. This, of course, is dependent upon a "committee" agreeing to this. Now it's not supposed to be about money, (yeah right) but the good news is that this chemo is relatively cheap so I'm hopeful, if not cynically so, that they will agree to my consultants recommendation. Oh and I'm sure that they will note that it is keeping me alive with very few harmful side effects.
I have a mixture of feelings about this decision. Firstly, I am happy and truly grateful that a chemo is doing the job and leaving me with a healthy quality of life. Apart from hair loss and some fatigue, I am living a full life. I walk the dog, I make the dinner, I meet friends for coffee and I'm feeling good most of the time. On the other hand, I had been looking forward to the end of my 18 week sessions. The 24th of September was earmarked. I suppose I was glad to be coming off a drug that is systematically wearing my bone marrow down. I was also told today that I have a delicate bone marrow anyway! Of course I do! I was also looking forward to looking normal again, I have now lost my eyebrows and most of my eyelashes. I do have some hair regrowth on my head but not much. However, it is a small price to pay to be alive. I am embracing my new philosophy of living in the day and taking it one day at a time. I have therefore come up with a list of all of the good things in my life right now, I thought I would share them. Maybe I need to strengthen my own belief. My goal is 20.
Douglas Adams
It was confirmed today that I will remain on this chemo indefinitely. This, of course, is dependent upon a "committee" agreeing to this. Now it's not supposed to be about money, (yeah right) but the good news is that this chemo is relatively cheap so I'm hopeful, if not cynically so, that they will agree to my consultants recommendation. Oh and I'm sure that they will note that it is keeping me alive with very few harmful side effects.
I have a mixture of feelings about this decision. Firstly, I am happy and truly grateful that a chemo is doing the job and leaving me with a healthy quality of life. Apart from hair loss and some fatigue, I am living a full life. I walk the dog, I make the dinner, I meet friends for coffee and I'm feeling good most of the time. On the other hand, I had been looking forward to the end of my 18 week sessions. The 24th of September was earmarked. I suppose I was glad to be coming off a drug that is systematically wearing my bone marrow down. I was also told today that I have a delicate bone marrow anyway! Of course I do! I was also looking forward to looking normal again, I have now lost my eyebrows and most of my eyelashes. I do have some hair regrowth on my head but not much. However, it is a small price to pay to be alive. I am embracing my new philosophy of living in the day and taking it one day at a time. I have therefore come up with a list of all of the good things in my life right now, I thought I would share them. Maybe I need to strengthen my own belief. My goal is 20.
- As I no longer go to work I don't get up at stupid o'clock.
- When I do get up I enjoy my morning coffee free from mentally planning my inevitably stressful day.
- I walk the dog once I have dropped O at school. I love the dog walking life and have met some new friends. Autumn is coming and I love this season. I am looking forward to park walks in the leaves.
- I get to plan my days the way that I want to apart from Tuesdays which is chemo clinic, but I enjoy my socialising there.
- As I have the time, I enjoy dinner time more and actually get to sit down with my daughter and share the evening meal.
- I have recently been in touch with several old friends. We have met for coffee and it has been lovely. I would never have done this had I still been living my old life.
- I generally see much more of my friends as I am no longer slotting them in to the holiday periods.
- Weekends are not spent recovering from the stressful week. They are spent doing the things that I want to do.
- I read more.
- My house is tidier (sometimes)
- I speak to my mum more.
- I have gone back to listening to music more regularly. I have a re kindled love for my ipod.
- I plan on re reading some of my favourite books.
- I have patience to do homework with O.
- I get to go to O's school things, most recent being a Titanic showcase, it was good.
- I go food shopping without resentment as I am not rushing to slot it into my working day, therefore saving money as I no longer just pick things up and throw them in the trolley.
- I am looking into doing some courses that I have been talking about doing for years, and I mean YEARS.
- I actually water my plants regularly.
- I choose to do things which enhance my mood, I am proactive not reactive.
- I write THIS.
Smile...
Hey, I've got nothing to do today but smile.
Paul Simon, "Only Living Boy in New York"
It's Tuesday again and I am wide awake as always. I love it, I have thoroughly tidied my house and that sets me up for the week. I have a few things to say tonight about smiling.
Firstly, I am smiling, because yet again I had a nice day at the chemo clinic. I got to share a coffee with my lovely, energetic friend Carla, who has been battling this horrible disease all of her thirties, she is still only 37 and has been through so much. She is a pleasure to know. I also got to see my other chemo clinic friends. I had a chat with my wonderful nurse today and we talked about me staying on my current chemo for longer. This chemo is WORKING, not only is it shrinking my tumours, but more importantly it's working for me and my life. I have very few side effects and I am living a very normal life. I am not bed ridden, I am free to do the things that I want to do and enjoy my life. This is a stark contrast to my first chemo and it is a big improvement on my second. That's the thing about chemo, it works so differently for everyone, and there is no predicting it. I am happy to say that right now I have a chemo regime which is doing all the right things. For this reason it is likely that I will continue with it but on a less regular basis. I will discuss the details with my consultant next week, but she is happy to do this because of my tolerance to it. Sadly I spoke to a woman today for whom this is not the case. She has had a terrible experience on it and she told me that she is going to stop treatment. She wont live long. She is only a few years older than me. I was devastated to hear her say that she wants to stop. However this is her choice, I don't know how she feels and I respect her decision. It is sad to hear nonetheless. I don't know what I would do if I were experiencing this. I'm not sure how bad it would have to be for me to stop. My consultant talks to me regularly about not wanting to impact upon my quality of life through harsh treatment. I have to say that as a mother I am more concerned with quantity of life. If I am bed ridden and feeling lousy, I can still be there to talk with Olivia and give her support if not much else. That, to my mind is a lot better than not being here at all, but like I said I don't know how I will feel if (or when) that day comes. But for today things are going well and I am smiling.
Another reason I am smiling is that for a couple of days I was not, literally. Chemo has another little surprise gift. It damages your teeth. The chemo itself is detrimental to them through high levels of sugar etc and also the fact that the chemo tends to dry out your mouth means that lack of saliva production leads to your teeth decaying more easily. My first chemo had a terrible effect on my teeth and I was at the dentist constantly having fillings. Several of my front teeth broke and had to be repaired. On Saturday I suffered a broken front tooth which had been damaged originally. I did not feel like smiling. I had to wait until yesterday to have it fixed. It reminded me of the anger I felt during my first treatment. I had asked my dentist about having veneers fitted as I had heard that other chemo patients had had this done. It would cost me approximately £200 per tooth as opposed to £500 done privately. Not cheap but my teeth were falling apart (again literally). She said that she would look into it for me. She came back to me and told me that the NHS were becoming much stricter about their policy on this and that they weren't keen to allow chemo patients this luxury, or necessity depending upon your viewpoint. I was disappointed once more. I was receiving a treatment for a devastating illness which was systematically ruining many parts of my body and the NHS were turning their back. I had spent a fortune having repair after repair and this was not deemed worthy of what they called cosmetic dentistry. Another insult to injury. When my tooth broke again this weekend I decided to re examine my possibilities. I intend to ask for veneers again ( I am now going to be on chemo for the rest of my life) and I fully plan on fighting my case with all that it may take. Who knows if I will win but I am going to try. I would say to anyone who ever has to go through chemo to be aware of this and to fight their corner. I will let you know my outcome. In the meantime I will keep smiling despite my somewhat less than perfect one.
Paul Simon, "Only Living Boy in New York"
It's Tuesday again and I am wide awake as always. I love it, I have thoroughly tidied my house and that sets me up for the week. I have a few things to say tonight about smiling.
Firstly, I am smiling, because yet again I had a nice day at the chemo clinic. I got to share a coffee with my lovely, energetic friend Carla, who has been battling this horrible disease all of her thirties, she is still only 37 and has been through so much. She is a pleasure to know. I also got to see my other chemo clinic friends. I had a chat with my wonderful nurse today and we talked about me staying on my current chemo for longer. This chemo is WORKING, not only is it shrinking my tumours, but more importantly it's working for me and my life. I have very few side effects and I am living a very normal life. I am not bed ridden, I am free to do the things that I want to do and enjoy my life. This is a stark contrast to my first chemo and it is a big improvement on my second. That's the thing about chemo, it works so differently for everyone, and there is no predicting it. I am happy to say that right now I have a chemo regime which is doing all the right things. For this reason it is likely that I will continue with it but on a less regular basis. I will discuss the details with my consultant next week, but she is happy to do this because of my tolerance to it. Sadly I spoke to a woman today for whom this is not the case. She has had a terrible experience on it and she told me that she is going to stop treatment. She wont live long. She is only a few years older than me. I was devastated to hear her say that she wants to stop. However this is her choice, I don't know how she feels and I respect her decision. It is sad to hear nonetheless. I don't know what I would do if I were experiencing this. I'm not sure how bad it would have to be for me to stop. My consultant talks to me regularly about not wanting to impact upon my quality of life through harsh treatment. I have to say that as a mother I am more concerned with quantity of life. If I am bed ridden and feeling lousy, I can still be there to talk with Olivia and give her support if not much else. That, to my mind is a lot better than not being here at all, but like I said I don't know how I will feel if (or when) that day comes. But for today things are going well and I am smiling.
Another reason I am smiling is that for a couple of days I was not, literally. Chemo has another little surprise gift. It damages your teeth. The chemo itself is detrimental to them through high levels of sugar etc and also the fact that the chemo tends to dry out your mouth means that lack of saliva production leads to your teeth decaying more easily. My first chemo had a terrible effect on my teeth and I was at the dentist constantly having fillings. Several of my front teeth broke and had to be repaired. On Saturday I suffered a broken front tooth which had been damaged originally. I did not feel like smiling. I had to wait until yesterday to have it fixed. It reminded me of the anger I felt during my first treatment. I had asked my dentist about having veneers fitted as I had heard that other chemo patients had had this done. It would cost me approximately £200 per tooth as opposed to £500 done privately. Not cheap but my teeth were falling apart (again literally). She said that she would look into it for me. She came back to me and told me that the NHS were becoming much stricter about their policy on this and that they weren't keen to allow chemo patients this luxury, or necessity depending upon your viewpoint. I was disappointed once more. I was receiving a treatment for a devastating illness which was systematically ruining many parts of my body and the NHS were turning their back. I had spent a fortune having repair after repair and this was not deemed worthy of what they called cosmetic dentistry. Another insult to injury. When my tooth broke again this weekend I decided to re examine my possibilities. I intend to ask for veneers again ( I am now going to be on chemo for the rest of my life) and I fully plan on fighting my case with all that it may take. Who knows if I will win but I am going to try. I would say to anyone who ever has to go through chemo to be aware of this and to fight their corner. I will let you know my outcome. In the meantime I will keep smiling despite my somewhat less than perfect one.
Tuesday thoughts...
We are continually faced with great opportunities which are cleverly disguised as unsolvable problems.
Margaret Mead
It's Tuesday and so it was chemo clinic today. As always I got more than intravenous drugs from it. Firstly we all had our usual chat while waiting to see the nurse/doctor for bloods to be taken etc. We are all getting closer to the end of our treatment and we agreed that we would miss our Tuesdays, truly. They have become part of our routine from chatting to the nurses who are great, and who very often are able to offer practical advice, to having laughs with Liz who serves coffee and lunch. I hope that we all meet up again outwith the clinic and I think that we will. We heard about Yvonne's daughters wedding on Saturday, and how the sun come out after much rain. Norma talked about her struggle to climb the stairs to her flat and we advised her to speak to someone at MacMillan who can advise and help her fight her case to be rehoused. We were also able to offer her some tips on how to do her shopping online as she is struggling with the physical demands of getting to the shops lately. Janette talked about how she had been feeling emotionally and we all listened. This and many other little chats are what makes chemo clinic much more than bearable. I also got the opportunity to learn more about the lovely woman I mentioned in another post, who liked my bid for freedom in the wig/scarf department. When I met her that day I found that she held an attraction, there was something about her. A very dignified woman with a lovely aura. Today I know why I thought this. She was keen for me to know that she has been living with secondary breast cancer for 20 years. Wow. She was my hope today. I am looking forward to talking more to her and finding out more about her journey. These are the things that keep us going.
I also exercised my new philosophy of taking full responsibility for my care today. I have been having quite a lot of pain at the site of my surgery recently. Now it is probably just the aftermath of a fairly big operation and possibly some of the numbness is wearing off and therefore I am feeling things more. However, I can't afford to be complacent this time around and so I asked to be examined. I also ensured that this was put into my notes so that each time that I see someone, the documentation is there and followed up. It's what we need to do unfortunately. It's also really good to be open and honest with experiences with others you meet as these experiences can help. I guess we go back again to my big point in all of this that knowledge is power. I am feeling good tonight, I have a more powerful belief in my future. This whole cancer crap really has enriched my life in the strangest of ways.
Margaret Mead
It's Tuesday and so it was chemo clinic today. As always I got more than intravenous drugs from it. Firstly we all had our usual chat while waiting to see the nurse/doctor for bloods to be taken etc. We are all getting closer to the end of our treatment and we agreed that we would miss our Tuesdays, truly. They have become part of our routine from chatting to the nurses who are great, and who very often are able to offer practical advice, to having laughs with Liz who serves coffee and lunch. I hope that we all meet up again outwith the clinic and I think that we will. We heard about Yvonne's daughters wedding on Saturday, and how the sun come out after much rain. Norma talked about her struggle to climb the stairs to her flat and we advised her to speak to someone at MacMillan who can advise and help her fight her case to be rehoused. We were also able to offer her some tips on how to do her shopping online as she is struggling with the physical demands of getting to the shops lately. Janette talked about how she had been feeling emotionally and we all listened. This and many other little chats are what makes chemo clinic much more than bearable. I also got the opportunity to learn more about the lovely woman I mentioned in another post, who liked my bid for freedom in the wig/scarf department. When I met her that day I found that she held an attraction, there was something about her. A very dignified woman with a lovely aura. Today I know why I thought this. She was keen for me to know that she has been living with secondary breast cancer for 20 years. Wow. She was my hope today. I am looking forward to talking more to her and finding out more about her journey. These are the things that keep us going.
I also exercised my new philosophy of taking full responsibility for my care today. I have been having quite a lot of pain at the site of my surgery recently. Now it is probably just the aftermath of a fairly big operation and possibly some of the numbness is wearing off and therefore I am feeling things more. However, I can't afford to be complacent this time around and so I asked to be examined. I also ensured that this was put into my notes so that each time that I see someone, the documentation is there and followed up. It's what we need to do unfortunately. It's also really good to be open and honest with experiences with others you meet as these experiences can help. I guess we go back again to my big point in all of this that knowledge is power. I am feeling good tonight, I have a more powerful belief in my future. This whole cancer crap really has enriched my life in the strangest of ways.
More wrinkles please...
In youth we learn; in age we understand.
I turned 42 today. I felt I should give it a wee mention. In 2011 I was awaiting my 40th birthday with a strange feeling. I remember being quite fixated on the idea of it. I discussed it with my friend who had turned 40 the previous year. We pondered the whole notion of what we decided was the year that you realised that statistically you had lived half of your life (well statistically depending upon where you live, the life expectancy post code lottery and all that). I wasn't sure whether or not I was buying into a culture obsessed with age or if I was just feeling more mortal, having lived half my life. Either way, I look back on it and laugh, kind of. How arrogantly, beautifully, optimistic to expect to live to 80 or thereabout. Today I celebrate my birthday with a very different perspective. I now WANT to be old. I want wrinkles (more wrinkles), I want all of the things that modern society dread and do anything to avoid. More importantly I want to see my daughter become an adult, I want to see grandchildren and everything else that we take for granted. The reality is that I most probably won't. Despite this I get to enjoy turning 42. I'm not burdened anymore with the anxiety that age brings to many. It's great. Each birthday that I have from now in will be a blessing, a bonus. I shared a post on facebook earlier which many will be familiar with about people wanting things (more money etc) when a cancer patient wants basically not to have cancer. I believe in the sentiment behind it and thus shared it, however I also believe that everything is relative. Just because you don't have cancer doesn't mean your worries and issues aren't a big deal to you. On the other hand wishing our lives away wanting material gain and striving for the perfect body or whatever it may be, does now strike me as a bit of a waste of time. Being caught up in the fear of ageing is to my mind the biggest waste of time. Age is experience, it's wisdom, it's empathy, it's compassion it's "getting it". Without people around us who have aged where would we be, who would guide us? I would love to be able to guide others and in particular my own child, for many years to come. If this means lines and sags and bags then fine. I will embrace them because every one of those lines will be testament to having lived. I really want to live.
In youth we learn; in age we understand.
Marie von Ebner-Eschenbach
I turned 42 today. I felt I should give it a wee mention. In 2011 I was awaiting my 40th birthday with a strange feeling. I remember being quite fixated on the idea of it. I discussed it with my friend who had turned 40 the previous year. We pondered the whole notion of what we decided was the year that you realised that statistically you had lived half of your life (well statistically depending upon where you live, the life expectancy post code lottery and all that). I wasn't sure whether or not I was buying into a culture obsessed with age or if I was just feeling more mortal, having lived half my life. Either way, I look back on it and laugh, kind of. How arrogantly, beautifully, optimistic to expect to live to 80 or thereabout. Today I celebrate my birthday with a very different perspective. I now WANT to be old. I want wrinkles (more wrinkles), I want all of the things that modern society dread and do anything to avoid. More importantly I want to see my daughter become an adult, I want to see grandchildren and everything else that we take for granted. The reality is that I most probably won't. Despite this I get to enjoy turning 42. I'm not burdened anymore with the anxiety that age brings to many. It's great. Each birthday that I have from now in will be a blessing, a bonus. I shared a post on facebook earlier which many will be familiar with about people wanting things (more money etc) when a cancer patient wants basically not to have cancer. I believe in the sentiment behind it and thus shared it, however I also believe that everything is relative. Just because you don't have cancer doesn't mean your worries and issues aren't a big deal to you. On the other hand wishing our lives away wanting material gain and striving for the perfect body or whatever it may be, does now strike me as a bit of a waste of time. Being caught up in the fear of ageing is to my mind the biggest waste of time. Age is experience, it's wisdom, it's empathy, it's compassion it's "getting it". Without people around us who have aged where would we be, who would guide us? I would love to be able to guide others and in particular my own child, for many years to come. If this means lines and sags and bags then fine. I will embrace them because every one of those lines will be testament to having lived. I really want to live.
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