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.
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