Haha…I love the phrase ‘crap on a crutch’….apparently one of Homer Simpsons’s, but I picked it up in the first two pages of a book by Kate Carr that was recommended to me after my second to last post. It’s how she described living with cancer. None of this….’it makes me a better person’, or ‘my life is whole again’ or ‘it is the best thing that happened to me’. Yes, most of us who have to go through this, make the best we can out of a bloody rubbish situation, but it can’t be said that had I been given the choice of living with myeloma (and getting the small benefit of having reassessed my life), or not living with it, that I would have chosen the former. And to be honest, anyone who says that they would, I am sure, is living in some form of denial. But that’s just my view 🙂
The book I have read is called ‘It’s not like that, actually’ and is the most poignant book I have read on cancer. Nearly everything she wrote about, made me nod in agreement. It makes no attempt to tell you how you should live your life, doesn’t suggest that if you don’t juice everything you see that grows in the ground you will die earlier, and definitely goes against the whole concept that I have brought it on myself through my busy life, stressful existence, smoking when I was younger etc. Kate Carr talks about people’s attitude to you when they know you have cancer, and yes, every single one of the things she has had suggested to her as to WHY she got cancer, have been suggested to me in some way or another….even if the people doing it were trying to do it subtly. It’s amazing how people don’t realise that it’s totally unhelpful. What would I gain even if I did know what had caused the myeloma? Hmmm, let me see, a big feeling of guilt. And I can tell you this now, I feel guilty enough about the fact my husband and two children won’t have the life ahead of them that they had expected. I don’t need other people making that worse.
Anyway, the book was great for me in that I came away from it feeling less alone. I’m not sure if it was good or bad that I spent the whole time reading it, sobbing my eyes out. And it certainly wasn’t good when I was reading it at the hospital and blubbing in front of everyone! lol! I think there is a definite time and place for a book like this. I still feel pretty isolated at the moment. I don’t really know how to change that. It’s so hard to know whether to live life thinking I’ve got years ahead of me, or whether if I do that and the cancer comes back next year, whether I’ll regret my choice.
But one thing I have realised is that I have allowed myeloma to consume most of my life. And I need to change that. It hasn’t done it in a wholly negative way, and I have gained loads from doing the fundraising that I have done, and am doing, and from supporting new myeloma patients for Myeloma UK. But I have realised this week that perhaps by doing all of that, I can never quite step away from it.
So I have made quite a big decision this week. I have decided that up until the ball on the 10th November, I will throw everything into fundraising and doing whatever I can for MUK. But once the ball has finished and I have wrapped it up (Christmas?), that will be it. I will pull away from it all for a couple of years and find other ways of keeping myself busy. I’m thinking of maybe trying to do charity fundraising outside of cancer charities. I can’t imagine being able to get a job that easily that is paid but that fits around the kids. And that is really important to me.
So to all of you who aren’t sure about supporting the ball as it’s just another fundraising initiative from me, please see it as the last time I will ask you to help in such an outright way. Obviously I’d love it if you continued to support MUK, but I won’t be doing things that mean I’m constantly asking for money.
The other major decision I have made this week is that I think we need some support. It’s amazing how hard it is to find that. I spoke to Macmillan today because I can’t get a GP appointment till the middle of next week. But Macmillan can’t really help either. It seems a bit harsh that not only do we have all the general costs associated with living with cancer (petrol to the hospital, parking, food, and that’s all on a good day!), but then if you want any help, it is made difficult to get it unless you are prepared to pay for it. I know not everything can be free…..we are lucky to get the NHS treatment we get….maybe I should stop moaning! But I think that as a family we need some support in knowing how to move forwards with living under the umbrella of a cancer diagnosis. At the moment, I just seem to be making everybody around me sad and I don’t want to do that.