'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!

 

 

 

 

 

 

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...

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!