“These woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.”
Robert Frost, Stopping by Woods on a Snowy Evening
It has been a strange day and one that has brought me to this page. A wonderful young friend of mine tragically died recently and I attended the funeral parlour today to pay my respects and to give support to both of his parents who are also dear friends. It was, as expected, an emotional experience. His funeral will be held tomorrow and I, like many others, will say goodbye and grieve for the loss of a young life. I then came home to an unexpected and very welcome message from one of my old pupils. It really lifted my day. She got in touch to say that she had read my blog and wished me and Olivia well and that she thought that my blog could benefit others. It came at an incredibly appropriate moment (thank you Emma). It reminded me to be grateful. Grateful that I am alive, that I can still be a mum, a daughter,a sister a friend, a help to parents who are burying their son. I can also be of use to others who may learn something useful from my experience with breast cancer. Today reminded me that I started my blog with the view to passing on information as well as it being cathartic for me. I haven't been writing lately, and while this is no bad thing, as it essentially means that I am living my life and by no means dwelling on having cancer, nonetheless I was reminded that I shouldn't forget about this. Lately I have been able to live normally and put my disease to the back of my mind (most of the time). It's been three months since my last scan and I feel (in the main) healthy. This is great and long may it continue but I must remember to share anything of value here. As I have been doing well I haven't really been researching like a fiend as I often do, but I'm sure that will come again. My next scan, which is due soon, may or may not indicate if my using LDN is proving beneficial. I will report accordingly. For the moment I am reflecting on how valuable living with a positive mind set can be and how by doing so we can enrich not just our own lives but those of the people around us. Life is too short to be angry, or resentful or even just caught up in ourselves in a general way. We really must be the best that we can on a daily basis because as I was reminded of this afternoon, in the company of friends, we really only have today. I am not going to think too much about the forthcoming scan nor the results, I am simply going to try to live my life while I still can and as best I can.
Monday, 28 April 2014
Wednesday, 19 March 2014
The naked truth
The only thing we have to fear is fear itself.
Franklin D. Roosevelt
So today people are showing their support for breast cancer by posting photos of themselves free from make up, naked and exposed, very appropriate as its exactly what being diagnosed with this disease feels like. On the positive side of that though, there is a certain liberation in such exposure. My breast cancer has made me look at who I am and I have faced up to a lifetime of insecurities and fears. Fear is what keeps us from happiness, it stunts us and blocks our emotional well being and balance. A good friend of mine quoted a wonderful AA saying FEAR can stand for Fuck Everything And Run or it can mean Face Everything And Recover. I am happy to report that I'm trying very hard to live in the second camp. In a strange way being diagnosed with secondary cancer allows you to do this. Maybe it's because you've already faced the thing that was always the biggest one. I read recently that the most feared word in the English language is cancer, not death but cancer. Not that surprising really. So perhaps when this has been faced down the rest becomes small stuff. This amongst other things has opened up the door for me to face up to the multitude of other fears that we all live with on a daily basis and this has changed my life and enriched the lives of those around me. It was facing fear that got me to the Jubilee hospital yesterday without concern. I was seeing the thoracic surgeon about my future in terms of surgery. I didn't have a sleepless night on Monday and I didn't let my mind race or project I simply went to my meeting with an open mind. This meant being prepared for him to tell me that he couldn't operate, that my condition was hopeless in this respect. He didn't. He was an amazingly open and straight talking doctor and I instantly liked him, and felt very comfortable with the thought of his hand at some point poking around in my lung! The upshot of the meeting is that he is willing to perform surgery to remove my tumours at some point but at the moment he feels that my disease is so "low level" that he would rather wait until further down the line. As I am only 14 months away from my surgery to eradicate my primary tumour it would be naïve to conclude that there is no disease elsewhere on the lung, it is too early for that. However that also doesn't mean that there is. So I am going to continue with my current chemo and keep being scanned regularly. I will meet with him again and we will review the situation. It's good, it gives me hope and we all know what happens when we don't have hope. It was also uplifting to be sat with a doctor telling me that my disease was low level, those were definitely words I liked hearing. I couldn't help but think that should my LDN work then the whole thing may only ever be theoretical. Let's hope so. All I do know for sure is that I continue to be optimistic, positive and most importantly I am happy today to face my fears, god knows I've had lots of practice
Wednesday, 12 March 2014
Sunny disposition...
Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.
Voltaire
I'm feeling good today, the sun is shining. I love summer and today fills me with hope that it is imminent. I haven't blogged for a while, not for any particular reason, just not that much to say I suppose. I'm still on my chemo and yesterday I had number 29. It's nothing short of remarkable in my opinion. From being told that I most probably wouldn't cope well with the 18 weekly cycle to this, we are truly individual. I also have an appointment next week to see the thoracic surgeon. It's 18 months since my secondary diagnosis and I still have no new disease, this is such good news and I am keeping an open mind to what my future holds. I try not too get too excited as I don't want to get too disappointed but on a sunny day like today I feel pleasantly optimistic. I am also continuing to take my LDN and just my faith in that keeps me feeling brighter each day, time will tell if this faith is merited, in the meantime it can do me no harm. I've actually been thinking a lot about taking responsibility for my own treatment and find it hard to understand why more people don't. I met a woman recently who has a similar diagnosis to myself. Her disease is under control just now but we were chatting about how uncertain life is living with secondary cancer. I told her about the LDN with great enthusiasm and was certain that she would be as excited as me by this potential wonder drug. The reality was that she wasn't. She listened to me and I insisted on writing things down for her but I was left with a certain knowing that she most likely wouldn't follow up. Each to their own, that is indisputable but it does make me wonder. When you're told that you will die from your cancer why not try everything, that's my philosophy anyway and it helps me in lots of ways. It is empowerment I guess and that means a lot to me. I refuse to be passive in anything in my life and I will not give up fighting this disease. I would also take this opportunity to ask anyone who reads this to look into LDN as it really does have amazing properties for all sorts of illnesses particularly auto immune conditions. Anyway, today is a good day and I am very conscious of being thankful for the life that I have and indeed the determination that I have to keep it.
Voltaire
I'm feeling good today, the sun is shining. I love summer and today fills me with hope that it is imminent. I haven't blogged for a while, not for any particular reason, just not that much to say I suppose. I'm still on my chemo and yesterday I had number 29. It's nothing short of remarkable in my opinion. From being told that I most probably wouldn't cope well with the 18 weekly cycle to this, we are truly individual. I also have an appointment next week to see the thoracic surgeon. It's 18 months since my secondary diagnosis and I still have no new disease, this is such good news and I am keeping an open mind to what my future holds. I try not too get too excited as I don't want to get too disappointed but on a sunny day like today I feel pleasantly optimistic. I am also continuing to take my LDN and just my faith in that keeps me feeling brighter each day, time will tell if this faith is merited, in the meantime it can do me no harm. I've actually been thinking a lot about taking responsibility for my own treatment and find it hard to understand why more people don't. I met a woman recently who has a similar diagnosis to myself. Her disease is under control just now but we were chatting about how uncertain life is living with secondary cancer. I told her about the LDN with great enthusiasm and was certain that she would be as excited as me by this potential wonder drug. The reality was that she wasn't. She listened to me and I insisted on writing things down for her but I was left with a certain knowing that she most likely wouldn't follow up. Each to their own, that is indisputable but it does make me wonder. When you're told that you will die from your cancer why not try everything, that's my philosophy anyway and it helps me in lots of ways. It is empowerment I guess and that means a lot to me. I refuse to be passive in anything in my life and I will not give up fighting this disease. I would also take this opportunity to ask anyone who reads this to look into LDN as it really does have amazing properties for all sorts of illnesses particularly auto immune conditions. Anyway, today is a good day and I am very conscious of being thankful for the life that I have and indeed the determination that I have to keep it.
Friday, 7 February 2014
Exploring new options
Remember always that you not only have the right to be an individual, you have an obligation to be one
Eleanor Roosevelt
I had a very encouraging meeting with my oncologist on Tuesday. She went over the scan results in more detail and they were more positive than first appeared. One of the tumours they are pretty sure is necrotic. This means that the tumour rapidly outgrows its blood supply, resulting in tumour cell death. This is good and bad as far as I can gather. Its good in the sense that what appears to be the tumour growing on the scan is more likely the dead cells. It's bad in the sense that it is very aggressive cancers which result in tumour necrosis. I am currently going with the good. The other tumour has grown by 2 mm which my oncologist says is negligible and the other tumours are still responding to chemo. I think that's a pretty good result all in all. I am therefore going to continue with my current chemo regime and I will be meeting with a thoracic surgeon in the next few weeks to look at possible lung surgery to remove sections where the tumours are. It is a fairly big operation and I will keep an open mind as to what the doctor has to say. If it gives me a chance to stay alive longer I will of course gladly sign up. I am also going to be meeting with the doctor who will advise me on Radiofrequency Ablation. This is keyhole surgery and would therefore be my preferred option. To have these potential surgeries open to me is amazing and I am feeling positive. In 16 months there has been no new evidence of disease, this is encouraging and leaves me hopeful. It reminds me of why I started this blog. We must not be defeated by statistics. We must find strength to fight for our own lives and we absolutely must always see ourselves as individuals. Only then will we believe we can overcome anything.
Eleanor Roosevelt
I had a very encouraging meeting with my oncologist on Tuesday. She went over the scan results in more detail and they were more positive than first appeared. One of the tumours they are pretty sure is necrotic. This means that the tumour rapidly outgrows its blood supply, resulting in tumour cell death. This is good and bad as far as I can gather. Its good in the sense that what appears to be the tumour growing on the scan is more likely the dead cells. It's bad in the sense that it is very aggressive cancers which result in tumour necrosis. I am currently going with the good. The other tumour has grown by 2 mm which my oncologist says is negligible and the other tumours are still responding to chemo. I think that's a pretty good result all in all. I am therefore going to continue with my current chemo regime and I will be meeting with a thoracic surgeon in the next few weeks to look at possible lung surgery to remove sections where the tumours are. It is a fairly big operation and I will keep an open mind as to what the doctor has to say. If it gives me a chance to stay alive longer I will of course gladly sign up. I am also going to be meeting with the doctor who will advise me on Radiofrequency Ablation. This is keyhole surgery and would therefore be my preferred option. To have these potential surgeries open to me is amazing and I am feeling positive. In 16 months there has been no new evidence of disease, this is encouraging and leaves me hopeful. It reminds me of why I started this blog. We must not be defeated by statistics. We must find strength to fight for our own lives and we absolutely must always see ourselves as individuals. Only then will we believe we can overcome anything.
Tuesday, 4 February 2014
A new challenge
If you don't get everything you want, think of the things you don't get that you don't want.
Oscar Wilde
Well I got my results of the scan. I had prepared for the worst and was still hoping for the best. I got something in between. The great news is that I have no new signs of disease, so it has not spread to other parts of my body. The not so great news is that unfortunately my chemo doesn't appear to be doing the job that it was doing anymore. 2 of my tumours are starting to grow again. It's assumed that these are the tumours which were originally found 16 months ago as it makes sense that the older (wiser) ones have learned to fight against the chemo. They are still small but for how long? I am disappointed as I was hoping to continue with my existing regime and essentially eek out more time on one of my lifelines. The list of drugs which can be used is by no means endless and it feels a bit like ticking one off and taking a step closer to death. However, I am determined not to get too down about this as it also potentially opens up other doors. I was told back in October that because my tumours were so small that it would probably be difficult to have radio frequency ablation. So in a way you could say that this little growth spurt now enables me to become a candidate for this treatment. So maybe I should be thankful for it (every cloud...). I have also started the LDN and within just a few days I have a noticeable difference in my joint and bone pain, wow I am hoping it is having the same effect on these bastard tumours, who knows. All I know is that I am merely going to view this is a new chapter in my life with cancer. I am seeing my consultant today and we will discuss the next steps. The road is still (fairly) long I think. All I can do is travel that road one day at a time.
Oscar Wilde
Well I got my results of the scan. I had prepared for the worst and was still hoping for the best. I got something in between. The great news is that I have no new signs of disease, so it has not spread to other parts of my body. The not so great news is that unfortunately my chemo doesn't appear to be doing the job that it was doing anymore. 2 of my tumours are starting to grow again. It's assumed that these are the tumours which were originally found 16 months ago as it makes sense that the older (wiser) ones have learned to fight against the chemo. They are still small but for how long? I am disappointed as I was hoping to continue with my existing regime and essentially eek out more time on one of my lifelines. The list of drugs which can be used is by no means endless and it feels a bit like ticking one off and taking a step closer to death. However, I am determined not to get too down about this as it also potentially opens up other doors. I was told back in October that because my tumours were so small that it would probably be difficult to have radio frequency ablation. So in a way you could say that this little growth spurt now enables me to become a candidate for this treatment. So maybe I should be thankful for it (every cloud...). I have also started the LDN and within just a few days I have a noticeable difference in my joint and bone pain, wow I am hoping it is having the same effect on these bastard tumours, who knows. All I know is that I am merely going to view this is a new chapter in my life with cancer. I am seeing my consultant today and we will discuss the next steps. The road is still (fairly) long I think. All I can do is travel that road one day at a time.
Monday, 27 January 2014
Other options
"Try and fail, but don't fail to try"
Stephen Kaggwa
.I haven't written for a while and the reason is basically that I haven't been feeling as positive as I would like. My mood has been low and I am filled with fear as I approach my next scan. That day is tomorrow and I will probably have my results by the end of the week. I am, in all honesty, terrified of what it will show. On a good day I think of a positive outcome and brace myself for a less than positive one with the attitude that I will just go on to a new chemotherapy and that will be that. On a bad day I can barely get out of bed and I want to hide away from the reality of my world. I think that for most of us the thought or idea of waiting to be given news concerning cancer and a possibly bad prognosis is high up there on the list of the events that we don't want to experience. When we see it on tv or in a film its a kind of uncomfortable moment of hoping we are never placed in that position. That's my experience anyway. So it's no surprise that I am struggling psychologically with going through this for the eighth time. I'm exhausted, mentally and emotionally. Last week I couldn't see the point to living like this. I think I said to my counsellor I can't go on waiting to be told I'm going to die. That was truly how I felt. Having been in a very dark place lately, which culminated in me voicing thoughts on ending my own life, I had to take action. I cant live with cancer without hope, I simply can't. I have, therefore reinvested myself in finding hope. I have been doing a lot of research for months on my type of cancer and I have found several routes to be examined. One of particular interest to me is a drug called Low Dose Naltrexone. I read about this in relation to my specific type of cancer in a medical journal a while back. On closer inspection of an abundance of data, I found that this drug has been used off license to treat all types of cancer. It has very strong anecdotal evidence to support its use but has never been clinically tried for cancer, as some would argue there is no financial gain for the pharmaceutical companies (the drug has long since been patented). It has also been successfully used to treat other conditions including MS and HIV. My GP has agreed to prescribe it for me (its also cheap) and I will start it this week. I am not putting all of my eggs in one basket with this drug and I shall continue to follow the advice of my oncologist and no doubt continue with chemotherapy, however I am making a leap of faith and giving something else a go. I am essentially refusing to give up on myself. I have started this blog with a view to sharing with others the idea that they should not rely solely on the NHS, we all have to be vigilant of our own health care. It's up to me to live by this as much as I possibly can, its my duty to take action. I start my new drug tomorrow, I'm hopeful and I will update accordingly.
Stephen Kaggwa
.I haven't written for a while and the reason is basically that I haven't been feeling as positive as I would like. My mood has been low and I am filled with fear as I approach my next scan. That day is tomorrow and I will probably have my results by the end of the week. I am, in all honesty, terrified of what it will show. On a good day I think of a positive outcome and brace myself for a less than positive one with the attitude that I will just go on to a new chemotherapy and that will be that. On a bad day I can barely get out of bed and I want to hide away from the reality of my world. I think that for most of us the thought or idea of waiting to be given news concerning cancer and a possibly bad prognosis is high up there on the list of the events that we don't want to experience. When we see it on tv or in a film its a kind of uncomfortable moment of hoping we are never placed in that position. That's my experience anyway. So it's no surprise that I am struggling psychologically with going through this for the eighth time. I'm exhausted, mentally and emotionally. Last week I couldn't see the point to living like this. I think I said to my counsellor I can't go on waiting to be told I'm going to die. That was truly how I felt. Having been in a very dark place lately, which culminated in me voicing thoughts on ending my own life, I had to take action. I cant live with cancer without hope, I simply can't. I have, therefore reinvested myself in finding hope. I have been doing a lot of research for months on my type of cancer and I have found several routes to be examined. One of particular interest to me is a drug called Low Dose Naltrexone. I read about this in relation to my specific type of cancer in a medical journal a while back. On closer inspection of an abundance of data, I found that this drug has been used off license to treat all types of cancer. It has very strong anecdotal evidence to support its use but has never been clinically tried for cancer, as some would argue there is no financial gain for the pharmaceutical companies (the drug has long since been patented). It has also been successfully used to treat other conditions including MS and HIV. My GP has agreed to prescribe it for me (its also cheap) and I will start it this week. I am not putting all of my eggs in one basket with this drug and I shall continue to follow the advice of my oncologist and no doubt continue with chemotherapy, however I am making a leap of faith and giving something else a go. I am essentially refusing to give up on myself. I have started this blog with a view to sharing with others the idea that they should not rely solely on the NHS, we all have to be vigilant of our own health care. It's up to me to live by this as much as I possibly can, its my duty to take action. I start my new drug tomorrow, I'm hopeful and I will update accordingly.
Tuesday, 31 December 2013
A New Year...
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.
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.
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