Post 33 – For those who are forgotten

I read a post a month or so ago by another myeloma patient about caregivers (god I hate that word though!) for myeloma patients. It made me stop and reflect a on the situation we live with in our house and the relentless care and support I get from my family and friends….but so much more than them, what Nick does for me on a daily basis.

Cancer is pretty terrible. There is no debating that, and, no matter how much as patients, we might look to everyone else that we are coping, that life is ok (when we are lucky enough to be able to say that) and that it doesn’t get us down, and no matter how much that may be true sometimes, living with cancer of any nature is hard work. There isn’t a day that goes by, where something doesn’t remind you of your cancer, of the treatment that you’ve had, or of what might come. At least that is the case for me.

But for all of that, and no matter how hard it is for me, I think that it is even harder for Nick. Yet he is my absolute rock and my strength whenever the going gets tough. He is the one that holds us together as a family when I’m ill or sad. He is the one that has to be strong for me and the children when I’ve lost the ability to be strong myself. And with all of it, he is the one, that should things turn for the worse one day, has to live with the contemplation that he might be left without me in his life anymore.

Please don’t get me wrong. We’re in a very strong position with my health at the moment. There is nothing to suggest a relapse is on the cards – I am well, my blood results are good, I’ve just had an MRI that shows no signs of any myeloma in my bones. But as I live with my fears, and address them on a daily basis as we make decisions (where to live, whether to work, how to bring up the kids), the burden that places on me often gets pushed onto him.

As many of you know, I am pretty engrossed with my fundraising too. Now Nick supports me 100% with this and has always encouraged me to do it. He can see the positivity that it allows me to place on our situation. I think that we both believe that it has given me a real purpose. However, the downside is that it means that he also never gets a break from the myeloma. As I write this, I realise that perhaps I have been very selfish over the past four years. I have always asked him about my fundraising exploits first but I’m not sure I have truly ever allowed him to think that saying ‘no’ to them is an option. Even now, as I draw to a close with my 40 Challenges B440, he knows I’m already wondering how I can get the last £15k raised that would take us to the £100,000 fundraising total. And I don’t know how to stop.

But I am genuinely worried that I am expecting too much of him. He works so hard to support me and the kids, often working 13 hour days at the moment. And on top of that he then comes home and finds he needs to help with the ironing, the clearing, kids activities etc. Recently he has also taken on more than his fair share in helping me to deal with the death of my mum. He does it all without a complaint. Not many men would. I don’t think I take it for granted but I do wonder if there needs to be more thought on my part about what he has had to give up to support me so fully.

I often joke about Nick not being much of a social animal, but as I write this, I wonder if part of that is because living and caring for a cancer patient ( and the family) and living with the whole ‘what if’ scenario is just absolutely exhausting. And living with someone like me who sometimes forgets the right priorities and becomes too focussed on things like fundraising, must make it especially hard.

I needed to write this post. I needed to remind myself of just how amazingly lucky I am to have Nick beside me. He is the best (even if I’m rotten at showing that to him at times)- the best support , the best dad, the best husband I could wish for, and most importantly, the best friend I could wish for to laugh and confide in.

And I needed everyone else to know just quite how much I love him….He is amazingly special.

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) 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 is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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1 Response to Post 33 – For those who are forgotten

  1. A lovely post Deb, beautifully expressed. I am always aware of the awful often hidden strain that carers are going through, and this is often missed by concern over the person with the illness, so I try my best to be inclusive of them when meeting fellow sufferers. In the so short time I nursed my wife I tried so hard to express my love for her, I just hope she realised it. I’m sure Nick knows how much you love him, and understands your need to fight Myeloma in your own individual way. keep it up, Nick will be there to support you and the children – so hard for them, I always think they know and understand more than we think. Thinking of you, Jeff


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