After waiting three months for a confirmed decision on a transplant, I finally saw my surgeon last Friday. Although, following my previous appointment with him, he was keen to carry out the surgery, I had to wait for approval from an International Board of Surgeons, I needed their 'go-ahead' before the transplant could take place. So last Friday, I waited nervously outside the Surgeon's office to find out what the decision was. I waited for almost three hours until it was my turn to be seen, and I could feel my heart pound as the nurse finally called my name.
My lovely family came to support me, and as we filed into the consultation room and each took a seat, the doctor wasted no time telling me what the outcome of his meetings with the Board was. He explained that they were reluctant to agree to the procedure, giving the reason that the Immunosupressants I would need to to take after could cause me problems.
Immunosupressants are drugs which suppress your immune system in order to reduce the risk of your body rejecting the new donated liver. He went on to explain that if I had any tiny, undetectable cells anywhere else in my body which my immune system was currently keeping under control, by taking the body's defences away the cancer cells could quickly grow and multiply thus forming tumours elsewhere in my body. If that were to happen, I'd be really stuck! If a tumour appeared soon after I had a transplant, my body would be too weak to handle chemotherapy or any other drugs that they might otherwise be able to give me. It would be disastrous.
As the Surgeon continued speaking, I felt my heart sink further and further towards my stomach. I saw my chance of fighting this again slipping through my fingers. 'It's finally got me' I thought to myself. I was expecting the Surgeon to suggest the 'back up operation' he suggested before, which would see him removing most of the liver, as a half hearted attempt to get rid of this relentless disease. And his attention did turn to this alternative operation, but as he began speaking about it his eyes lit up.
He took out a picture of my latest scans, and put them up on his computer screen so we could all have a look. He explained what my consultant had already told me, that the tumours hadn't grown since the previous scans, taken six months before hand, but he also pointed out the colour of the tumours. They looked much darker in these latest scans, and although he could not be sure, he thought it might be an indication that the tumours had in fact died. He looked at me with immense happiness, but I couldn't take in what he was telling me, I didn't even know that tumours could 'die' like this.
He went on to explain that a transplant could have proven unnecessary, and that simply cutting the affected liver out would actually now be a much more sensible option. Using the metaphor 'like killing a fly with a canon ball' he explained that a transplant could end up doing more damage than was needed and just removing the tumours and the affected bit of liver would be sufficient at this stage. If the tumours returned in the liver in the future, however, he assured me that a transplant could still be an option for me, depending on whether I had remained clear throughout the rest of my body in the mean time.
We finished the consultation by arranging some more scans in a few weeks, to ensure that the tumours are definitely not growing, or at the very least growing extremely slowly. If this is the case, I can book the operation to have them removed as soon as I am ready. If the scans show otherwise, however, and the tumours are much larger, or the disease has spread elsewhere, then it's back to the drawing board to weigh up the options I have left.
I left the hospital in a daze. It was potentially the best news I could have hoped for, but I didn't even realise it was a possibility. From being given such a negative prognosis all those months ago by my Oncologist, to this, it was almost a complete turn around.
But then I remembered all the research I carried out after that awful day in March. Having been told there wasn't much that could be done to help me, other than the slim chance of being granted a transplant, I researched alternative treatments. I learned that you can 'starve' cancer cells, and therefore prevent them from growing, or developing and spreading. You can do this through your diet, and vitamins.
Now I'm starting to tread on dodgy ground, and am sure I will upset many medics, but it seems to have worked for me, so I feel I need to put it out there.
While I was waiting such a long time for feedback about the transplant - between March and September, I researched the types of food you should eat plenty of, and food you should avoid if you have cancer, and in particular, cancer in the liver. Now, I would never refuse conventional medicine, but I thought, if I could help myself in any way I can while the doctors were considering my case, what harm could it do?
I learned that with cancer in my liver, and a damaged kidney, I should be eating leafy veg, such as spinach, broccoli, and wheat grass. I also found out that cocoa is very good at reducing the risk of getting cancer, and also actually attacking cancer cells as well. However, it is not enough to be stuffing your face with Bounty bars all day, the chocolate you consume needs to have over 70% cocao content - the higher the percent, the better. Cancer cells crave sugar, so the less you give them, the more likely you are to be able to starve them. It is also suggested that you avoid red meat, although I reckon that's almost impossible!!
But the one piece of advice that kept cropping up everywhere, was the importance of Vitamin C. Vitamin C is vital in combating illnesses in the body, all animals, except humans, produce their own Vitamin C, and is released whenever they are feeling low or rundown. This doesn't happen in humans, so it is important that we take supplements. However, I also read that Vitamin C is the most natural form of chemotherapy - without any of the awful side effects, other than giving you a dodgy stomach if you get a little carried away!
So I tried all the advice, after all what harm could it do? And it made good sense. So I improved my diet, ate lots of green leafy veg, cut down on the red meat, and only ate chocolate that had over 70% cocao content. I exercised a lot more, as this is also thought to improve the chances of overcoming Cancer - as a Macmillan Study recently confirmed, and I took as much Vitamin C as my stomach could handle.
And then I had those latest scans...
In a world so quick to prescribe a drug for every ailment, should we in fact be taking a step back and listening to nature? I guess only time will tell, and it will be interesting to see what my next set of scans show. But something has worked, something seems to have dramatically slowed down the growth of my tumours, if not killed them.
'A pill for every ill'?... perhaps not.
Saturday, 10 September 2011
Sunday, 21 August 2011
A Liver To Live
Today I received an email from a lovely young mum, and she told me about how, just a few months ago, she saved her little boy.
I have read all the NHS information, Liver Transplant packs and all the Statistics I can get my hands on, but none of them compare to talking to someone who has experienced what I'm about to go through. Having someone to tell you how they felt, what obstacles they came across, and how they overcame their hurdles is invaluable, and one of the reasons I write about my own experiences. It's so important to be given the benefit of a human account rather than figures and explanations churned out by the Government, so I tracked down someone who had been through a transplant themselves, and I asked her to tell me her story.
Not long ago her little boy was dying, his liver function was deteriorating so rapidly, he had only a matter of days to live. The doctors told her and her husband that a transplant was the only way of saving him, but they had to be quick. There was no time to wait for a liver from a deceased donor, so they made arrangements for the family to be tested to see if there was a match amongst them for the little boy, so that a 'live transplant' (meaning both patient and donor are alive), could be carried out. The doctors would need to take about 25% of the liver from the donor to transplant into her son and she sat and prayed for a match to be found as, one by one, members of the little one's immediate family were tested. She grew increasingly desperate for her baby as each test come back negative, until it was her turn to give a blood sample. She had hoped another member of the family would be a match, allowing her to look after her little boy and help him recover, but as the possibilities of donors dwindled in front of her, she began to have the tests done herself and as the results were rushed through, to her unimaginable relief, they showed she was a match. The next day surgeons performed the operation; it took them 5 hours to remove part of her liver to be donated, while her son was on the operating table for twice as long as they replaced his failing organ. Her act of selflessness and pure love had saved him, she gave him a liver to live.
Now mum and son are recovering really well, and as she told me how much stronger he gets day by day, a flood of admiration overwhelmed me. She described what her little boy had to go through during and after the operation, the tubes he had inserted, down his throat and inside his nose. She listed the medication he needed during the procedure and the medication he'll be on for the rest of his life, and the check ups and hospital visits he'll never be free from. But nowhere in her email was there a hint of negativity, or exhaustion, -only joy. He has been given a second chance, and not only that, she has given him that second chance. Now they'll share a bond like no other, a bond that no one could ever break.
How do we lose sight of such appreciation for life?
I have read all the NHS information, Liver Transplant packs and all the Statistics I can get my hands on, but none of them compare to talking to someone who has experienced what I'm about to go through. Having someone to tell you how they felt, what obstacles they came across, and how they overcame their hurdles is invaluable, and one of the reasons I write about my own experiences. It's so important to be given the benefit of a human account rather than figures and explanations churned out by the Government, so I tracked down someone who had been through a transplant themselves, and I asked her to tell me her story.
Not long ago her little boy was dying, his liver function was deteriorating so rapidly, he had only a matter of days to live. The doctors told her and her husband that a transplant was the only way of saving him, but they had to be quick. There was no time to wait for a liver from a deceased donor, so they made arrangements for the family to be tested to see if there was a match amongst them for the little boy, so that a 'live transplant' (meaning both patient and donor are alive), could be carried out. The doctors would need to take about 25% of the liver from the donor to transplant into her son and she sat and prayed for a match to be found as, one by one, members of the little one's immediate family were tested. She grew increasingly desperate for her baby as each test come back negative, until it was her turn to give a blood sample. She had hoped another member of the family would be a match, allowing her to look after her little boy and help him recover, but as the possibilities of donors dwindled in front of her, she began to have the tests done herself and as the results were rushed through, to her unimaginable relief, they showed she was a match. The next day surgeons performed the operation; it took them 5 hours to remove part of her liver to be donated, while her son was on the operating table for twice as long as they replaced his failing organ. Her act of selflessness and pure love had saved him, she gave him a liver to live.
Now mum and son are recovering really well, and as she told me how much stronger he gets day by day, a flood of admiration overwhelmed me. She described what her little boy had to go through during and after the operation, the tubes he had inserted, down his throat and inside his nose. She listed the medication he needed during the procedure and the medication he'll be on for the rest of his life, and the check ups and hospital visits he'll never be free from. But nowhere in her email was there a hint of negativity, or exhaustion, -only joy. He has been given a second chance, and not only that, she has given him that second chance. Now they'll share a bond like no other, a bond that no one could ever break.
How do we lose sight of such appreciation for life?
Monday, 8 August 2011
Treading Water...
When you live with Cancer some days are much harder than others. It is much harder to get up in the morning, much harder to stay positive, much harder to even make conversation with people you love. Some days you just want to stay in bed with the covers up over your head, wishing it would all go away. Some days it's hard to keep going. The past week has been full of days like these.
It's bad enough being in remission, the low days are hard, however, they're often few and far between. But knowing that this poison is inside me, growing everyday, threatening to strangle the life from my rose bud often makes it difficult to concentrate on anything else.
Although my latest scans have been encouraging, indicating that the disease isn't spreading, and is growing extremely slowly, I still get very frustrated at the amount of time I have been kept waiting by the hospital. My doctors are still on holiday, still keeping me hanging on for a decision on a transplant, and I feel I have been left to tread water, trying to keep my head above the surface until they are ready to throw me a float.
But this is juxtaposed with a longing to maintain a normal lifestyle, to continue going to work, seeing my friends, swimming, dancing - living. I don't want to be restricted by surgery, transplants, and medication. And this is what brings me down, this confusion as to whether I want the doctors to hurry up and make a decision, or to leave me alone altogether.
And so, still, I wait. But I'm strong, and I know that for every tough day I have, there are many more brighter ones. I know how lucky I am to even have the chance to fight this, so many others are robbed of the chance to do so too young, too soon.
Today was much harder than others, but tomorrow might be a little brighter.
It's bad enough being in remission, the low days are hard, however, they're often few and far between. But knowing that this poison is inside me, growing everyday, threatening to strangle the life from my rose bud often makes it difficult to concentrate on anything else.
Although my latest scans have been encouraging, indicating that the disease isn't spreading, and is growing extremely slowly, I still get very frustrated at the amount of time I have been kept waiting by the hospital. My doctors are still on holiday, still keeping me hanging on for a decision on a transplant, and I feel I have been left to tread water, trying to keep my head above the surface until they are ready to throw me a float.
But this is juxtaposed with a longing to maintain a normal lifestyle, to continue going to work, seeing my friends, swimming, dancing - living. I don't want to be restricted by surgery, transplants, and medication. And this is what brings me down, this confusion as to whether I want the doctors to hurry up and make a decision, or to leave me alone altogether.
And so, still, I wait. But I'm strong, and I know that for every tough day I have, there are many more brighter ones. I know how lucky I am to even have the chance to fight this, so many others are robbed of the chance to do so too young, too soon.
Today was much harder than others, but tomorrow might be a little brighter.
Monday, 1 August 2011
The Launch Party
Hope you enjoy the little film we have put together with footage and interviews from the launch party!
Saturday, 30 July 2011
'Kiss From A Rose' - The Launch
I'm still waiting for the decision on a transplant from the National Board of Surgeons. It's holiday time now, so I have to wait for them each to return from their city trips and tropical adventures before they come to any conclusions on my case. My Consultant goes away this week too, so it'll be a while before I get any confirmation on the possibility of a transplant. But my last set of scans were encouraging, the tumours in my liver haven't grown, and the disease hasn't spread, I can afford to wait a little while.
So I have kept myself busy by organsing and hosting a book launch for 'Kiss From A Rose, I will put up a film of the event over the next couple of days, but for now, I hope you enjoy the photos!
So I have kept myself busy by organsing and hosting a book launch for 'Kiss From A Rose, I will put up a film of the event over the next couple of days, but for now, I hope you enjoy the photos!
Sunday, 10 July 2011
Kissed By The Rose
I woke up on Friday morning feeling very low. I had received a phone call from my Consultant the previous evening saying my scan results were not yet available and that there was no point attending my Consultation in the morning. But he quickly picked me up by saying he would call as soon as they came in and I tried to stay positive as I hoped for the news that the Cancer hadn't spread. However as the day went by, and there was still no phone call, it was difficult to maintain an optimistic mentality - I just wanted to know what the scans showed.
It was getting later and later, and I still hadn't heard from the Consultant, soon it hit 5pm and I was resigned to the fact I'd now have to wait until Monday to hear the results. The thought of them playing on my mind over the whole weekend frustrated me, so I decided to go shopping to take my mind off the hospital, and cheer myself up a little! As soon as I got into the car, ready to drive to Bluewater my mobile rang, it was a blocked number and I knew immediately that it was my Consultant. As I sat in the car I froze for a second and stared at the phone. A mixture of emotions surged through me and, for a second, I even contemplated ignoring the call. I wanted so much for him to tell me the rest of the scans were clear, that I didn't want to give him the chance to tell me anything different. But instinct kicked in, and I watched my thumb hit the 'answer' key, and I raised the phone to my ear as he spoke.
"I'm going to tell you what I know, which I know is never enough for you, Natasha" he started. And I smiled as he went on to say that there was absolutely no changes to the scans when he compared them to the last set of images I'd had taken back in December. The Cancer hadn't spread, it hadn't even grown in my liver; nothing has changed.
I cannot put into words the delight and relief and emotion that poured out of me in that moment, it was the best news I could have hoped for. My consultant went on to explain that the Transplant Surgeon had still not heard back from the Board of Surgeons on their decision to back his support for my transplant, but I told him I could wait a few days for that! I had the news I wanted, even if the Board said no to a transplant, now at least I knew the 'back-up' operation that the Transplant Surgeon had discussed with me was possible, because the rest of my scans were clear.
My consultant also explained that he has asked two independent Oncologists to put together a report for the board, advocating my case for a transplant. In the report there would be evidence of how rare my specific case is due to the fact the cancer has not spread, and I have been clear else where for seven years now... I should find out early next week what the Board's decision is.
So there you have it, another of life's blessings, another Kiss from the Rose...
It was getting later and later, and I still hadn't heard from the Consultant, soon it hit 5pm and I was resigned to the fact I'd now have to wait until Monday to hear the results. The thought of them playing on my mind over the whole weekend frustrated me, so I decided to go shopping to take my mind off the hospital, and cheer myself up a little! As soon as I got into the car, ready to drive to Bluewater my mobile rang, it was a blocked number and I knew immediately that it was my Consultant. As I sat in the car I froze for a second and stared at the phone. A mixture of emotions surged through me and, for a second, I even contemplated ignoring the call. I wanted so much for him to tell me the rest of the scans were clear, that I didn't want to give him the chance to tell me anything different. But instinct kicked in, and I watched my thumb hit the 'answer' key, and I raised the phone to my ear as he spoke.
"I'm going to tell you what I know, which I know is never enough for you, Natasha" he started. And I smiled as he went on to say that there was absolutely no changes to the scans when he compared them to the last set of images I'd had taken back in December. The Cancer hadn't spread, it hadn't even grown in my liver; nothing has changed.
I cannot put into words the delight and relief and emotion that poured out of me in that moment, it was the best news I could have hoped for. My consultant went on to explain that the Transplant Surgeon had still not heard back from the Board of Surgeons on their decision to back his support for my transplant, but I told him I could wait a few days for that! I had the news I wanted, even if the Board said no to a transplant, now at least I knew the 'back-up' operation that the Transplant Surgeon had discussed with me was possible, because the rest of my scans were clear.
My consultant also explained that he has asked two independent Oncologists to put together a report for the board, advocating my case for a transplant. In the report there would be evidence of how rare my specific case is due to the fact the cancer has not spread, and I have been clear else where for seven years now... I should find out early next week what the Board's decision is.
So there you have it, another of life's blessings, another Kiss from the Rose...
Tuesday, 5 July 2011
Out Of The Frying Pan... Now Where Do I Go?
Straight into the fire it seems.
Last Friday I had the scans which will determine whether a transplant with prove fruitful or not. I get the results this Friday, and if they show the cancer is still contained in my liver, I will go on a transplant waiting list for a deceased donor, while the hospital test my family to see if I can have a partial transplant from one of them. But if the scans show the cancer is spread, then I have no choice but to try my luck with Chemo in the hope it buys me some time.
So in an optimistic attempt to educate myself about the procedure that has the potential to cure me of this forever, I took a look at the NHS website http://www.nhs.uk/conditions/liver-transplant/pages/introduction.aspx, I also wanted to find out how I can look after myself before and after the transplant operation. But in the process of researching the operation, I have frightened myself beyond belief. Of course I realised the seriousness of the situation I'm in before opening up the web page, but I always try to remain positive, so seeing the risks and side effects of my 'get out of jail card' staring back at me in black and white has terrified me.
I read that in order to avoid the chance of my body rejecting the new liver, whether it's from a living or deceased donor, I will have to take drugs known as Immunosuppressants for the rest of my life. The hospital prescribes a very high dose initially and gradually reduces the level you need as time goes on. Manageable, so far. But as I read on I learnt how these drugs in turn carry their own risks and devastating side effects. With conditions such as hair loss, hallucinations, diabetes and cataracts listed as some, I started to wonder if it was all worth it? Of course they can reduce the level of immunosuppressants you are taking if the side effects become unbearable, but they must ensure the immune system remains suppressed enough to avoid the chance of your system rejecting the new organ. It's a kind of balancing act which can only be monitored according to how your body reacts to the level of drugs you take.
And so I get rid of one disease to be confronted by a list of others. But I must remember that I'm strong and healthy otherwise. I would much prefer to be aware of the possible side effects going into the operation, rather than discover them as they are happening, at least now I will be prepared for them. If I went in with my eyes closed and found I was hallucinating, losing my hair, or even worse, losing my sight, as well as suffering with the pain from the operation, that would be far more frightening.
But I know having this transplant holds the best chance for me at beating this disease. I need to look beyond the effects of the immunosuppressants and know that they can at least, to some extent, be controlled. The same cannot be said of Cancer. So I'm ready for those scan results, I'm ready for them to show that I'm clear everywhere else, and I'm ready for the operation. This week is National Transplant Week... I think that's a good sign!
Last Friday I had the scans which will determine whether a transplant with prove fruitful or not. I get the results this Friday, and if they show the cancer is still contained in my liver, I will go on a transplant waiting list for a deceased donor, while the hospital test my family to see if I can have a partial transplant from one of them. But if the scans show the cancer is spread, then I have no choice but to try my luck with Chemo in the hope it buys me some time.
So in an optimistic attempt to educate myself about the procedure that has the potential to cure me of this forever, I took a look at the NHS website http://www.nhs.uk/conditions/liver-transplant/pages/introduction.aspx, I also wanted to find out how I can look after myself before and after the transplant operation. But in the process of researching the operation, I have frightened myself beyond belief. Of course I realised the seriousness of the situation I'm in before opening up the web page, but I always try to remain positive, so seeing the risks and side effects of my 'get out of jail card' staring back at me in black and white has terrified me.
I read that in order to avoid the chance of my body rejecting the new liver, whether it's from a living or deceased donor, I will have to take drugs known as Immunosuppressants for the rest of my life. The hospital prescribes a very high dose initially and gradually reduces the level you need as time goes on. Manageable, so far. But as I read on I learnt how these drugs in turn carry their own risks and devastating side effects. With conditions such as hair loss, hallucinations, diabetes and cataracts listed as some, I started to wonder if it was all worth it? Of course they can reduce the level of immunosuppressants you are taking if the side effects become unbearable, but they must ensure the immune system remains suppressed enough to avoid the chance of your system rejecting the new organ. It's a kind of balancing act which can only be monitored according to how your body reacts to the level of drugs you take.
And so I get rid of one disease to be confronted by a list of others. But I must remember that I'm strong and healthy otherwise. I would much prefer to be aware of the possible side effects going into the operation, rather than discover them as they are happening, at least now I will be prepared for them. If I went in with my eyes closed and found I was hallucinating, losing my hair, or even worse, losing my sight, as well as suffering with the pain from the operation, that would be far more frightening.
But I know having this transplant holds the best chance for me at beating this disease. I need to look beyond the effects of the immunosuppressants and know that they can at least, to some extent, be controlled. The same cannot be said of Cancer. So I'm ready for those scan results, I'm ready for them to show that I'm clear everywhere else, and I'm ready for the operation. This week is National Transplant Week... I think that's a good sign!
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