Crap on a Crutch!!

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.

 

 

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About Deb Gascoyne

I am wife of one, mother of two and a person in my own right :-) I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
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4 Responses to Crap on a Crutch!!

  1. Tom Lappin says:

    Hi Deb, Now this post made me weep ;-(
    I understand your feelings about ” It’s so hard to know whether to live life thinking I’ve got years ahead of me, or ?” for me Deb I go with the former ” I’ve got years ahead of me” as no one knows when 😦

    As for your decision I feel like that leaving MMUK and going cold turkey?? but I need that and am sure we have members needing Us? (am sure they will let us know lol)

    Am sure you would do a great Job “In Government” fighting the Cancer cause not just MM but for all Cancer suffers that need the help that is not freely available.

    And did i say great read 🙂
    Love Tom “Onwards and Upwards” xxx

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  2. I’m so glad you got so much from reading Kate’s book. I did too and had that same sense of not being alone and thankful not to be judged either or find sticks to beat myself with. Well, I was never gonna go there, but you don’t need to read that kind of thing, do you?

    I’m so sorry to hear you’re still going through a hard time emotionally, but this will pass, I’m sure. And maybe going through it will give you some sense of clarity or direction for the future. But it’s damn tough while you’re in it.

    It may be worth asking your specialist nurse for some counselling help? They have a psychologist here in Nottingham – maybe they have one at the Marsden, or try other local, smaller cancer charities? Otherwise, check out Maggie’s Centres: http://www.maggiescentres.org/centres/ukmap.html. They have one in London and a service in Oxford. Shame there’s nothing closer, but if it means some free counselling support – it may be worth it. Sounds like you need someone to talk it all through.

    As for stepping away from fundraising, I think that’s a brilliant idea. There are other people out there who can and are able to do that and the effort you’re putting into the ball is amazing and more than ENOUGH!

    You’re also welcome to contact me by email, FB or phone if you want a moan from someone who’ll listen and understand and who won’t try and tell you what to do… I hope! 🙂

    Big hugs
    Jet x

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  3. P.S. In case you didn’t get it from my blog, I’m doing the opposite of what Tom says above – I am living a bit like there’s almost no tomorrow, spending time with people I want to see, getting closer to my family, avoiding those who don’t provide what I need or bring me down or ask stupid questions, eating good food, making my home nice and taking up any opportunities that appeal to me.

    As you know, I mostly steer clear of MMUK, just because it depresses me to hear about people being ill and dying and I don’t need any help in that area. I contribute and ask for help when I can/need, but there are enough others on there who want to be there and that’s a fine choice for them. To be honest, I think the people who need you are Nick and the children – but you already know that.

    This is in no way disrespecting other people’s choices – just make sure whatever you choose is the right one for you. x

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  4. There are no ‘rights’ or ‘wrongs’ in my opinion in the ways that any person with either chronic or terminal health issues choses to deal/manage them. And as a caregiver, I do my level best to avoid offering up ideas or suggestions that have any color of blame for what has happened. It’s not f***’in’ fair that is has happened, and it grieves me deeply to think my SIL and daughter are facing a different life than they planned/hoped/wished for, so I can relate to all you are saying. I guess what I do is offer up intentions to you, to other MM folks/caregivers with the idea that believing and visualizing the highest good does improve the situation and I want that for you, for my family, for anyone struggling with health issues.

    Jetblackliving makes a very good point… making sure you are choosing what seems right for you and your family… and I align with your intentions for a job that is working with your needs, a medical team that supports your objectives and continuing improving health, for the highest and best good of all concerned, so be it and so it is! Whoooooo!

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