For a while now, I have wanted to write a post on the future for us living with my myeloma. I’ve put it off because it really is a hard one to write, especially when I have lots of friends with myeloma, all of whom are at totally different stages to me. What is one person’s hope, is another’s regret and the last thing I want to do is to make anyone sad or angry with what I write.
But recently I have been made to re-evaluate my thoughts on how we, as a family, focus our life moving onwards, on the future, and also on how I want to focus my fundraising efforts. I am giving up work temporarily, we are considering moving house/ extending our existing house and both of these things have meant that we have had to review where to live and what is needed. Only two years ago, I was adamant I needed a downstairs bathroom/bedroom available to me for as and when I relapse and my treatment/body gets in the way of the stairs! For the first time, I have stopped thinking like that……for the first time, I have begun to feel like I could still be standing strong for many years….maybe even so far as to see the children leaving home. So all those decisions that have, for the last 5 years revolved around my myeloma, are thankfully being reviewed and adapted. My myeloma is no longer the focus….we are…..and I can’t begin to tell you how refreshing that is.
When I was diagnosed in July 2009, our whole life turned upside down. I had been told I had a cancer that was not only incurable, but that only had an average life expectancy of 2-5 years assuming you believed everything that you read on google. I wouldn’t see Rebecca and Sam go to secondary school, wouldn’t see them through those dreaded teenage years (!) and I possibly wouldn’t reach my 10 year wedding anniversary with Nick. It was awful and a total shock. I genuinely didn’t believe that I would be here today writing this blog, despite talking to people who had lived longer and were doing ok. I wasn’t going to be that lucky.
But then I started my fundraising. I couldn’t just sink with the knowledge that I had suddenly been faced with…and I needed to do something else. And in the early days, my fundraising was very much focused on the ‘woe is me’ story that I honestly believed. I would make sure people understood that I was only 34, that I had two young children in primary school, that my life expectancy was short….and I would hope that they would support my fundraising efforts to help make me feel better. And they did….and I apologise to all of you whose emotions I played on…despite the fact I didn’t realize that was what I was doing at the time. I honestly believed every word that I said. And to an extent, I suppose I wasn’t lying as for some people who have a more aggressive form of myeloma than me, all of that could well have been true. I have been amazingly lucky.
I am so pleased that things have changed now. Don’t get me wrong. Myeloma patients are NOT out of the woods. It is STILL incurable. Much research is STILL needed. But 5 years down the line, I am still alive and I am still in remission nearly 3 years after my Stem Cell Transplant. I know how lucky I am. Had I been diagnosed with myeloma even 10 years ago, my future might not have been so bright. I have friends who are dealing with their second and third relapse and desperately hoping that research will bring out new options that will, to be blunt, keep them alive. But I am lucky in that, if I can stay in remission for a couple more years, there are things ahead that are very, very positive. For the first time, the last 6 months have truly made me believe that there could be a future ahead of me….and that is exciting. I am not sure exactly what this new research means, and I need to find out more….I’m still not sure that the idea that I will still be alive at 60 is a realistic or optimistic one – but given that I hadn’t expected to make my 40th birthday in 2015, I think I’m allowed to pretty chirpy! And maybe in 10 years time, I’ll be writing about how I’m looking forward to being 70!
So what is it that is giving me hope. Every year, new drugs come out that can help myeloma patients, whether through a trial or through NICE having approved them. Each time a drug is researched, trialled and successful, it opens up new ‘menus’ of drug regimes for patients which means that one option stops working, a different drug can be tried, or a different concoction of drugs can be put together. From what I understand, where 10 years ago, there were only 3 or 4 main drugs used, now there are far more available to many MM patients.
But as genetic studies continue there are much more exciting things that are coming to the forefront. I think that although a cure still isn’t on the immediate horizon (a recent infoday suggested perhaps a 10 year timeline), whilst DNA testing continues successfully, there are still things coming up. Things that hopefully could change the life of myeloma patients. ‘Monoclonal antibodies’ are one of these things. I really hope that I am not getting my hopes up incorrectly. As I have said many times, I’m not great on the science side of things. BUT, that said, these antibodies really do sound interesting. My understanding is that the drug attaches itself to the myeloma cells, and then almost shouts out to the immune system to attack the cell. And that this could see a totally different way of attacking myeloma cells and bringing a different conclusion for people like me.
This has been a hard post to write. I suppose I’m trying to convey a hope that things have changed dramatically since when I was diagnosed 5 years ago. And a real belief that this is the case. I desperately hope I’m right.
It would not only give me peace for me and other patients, but also for our families beneath us. So, as a famous telephonic company has as their strapline….I truly believe that ‘the future is bright and the future is orange’…thank you Myeloma UK and all those researchers out there aiming to ‘make myeloma history’.
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text ‘DEBG99 £X’ to 70070 e.g ‘DEBG99 £40′ if you want to donate £40