Well I missed out day 5 as I’d been helping to organise a school ball and didn’t manage to find the time. So today, I ought to catch up although my banging head doesn’t help much!
I thought on that basis, I’d write a little about how myeloma tends to impact your life. It’s a hard one to write as myeloma is such an individual cancer and impacts everyone so differently. I feel like it has, for the main part, actually had quite a positive impact for me and for the family. That’s a strange thing to comprehend I think and I still feel a little strange saying it. I’m definitely not saying I’m glad I have myeloma or that if I could change our future that I wouldn’t get it out of the equation, but it has made parts of our life better.
I am probably one of the luckier myeloma patients. Because they diagnosed me so early, I haven’t suffered from bone damage or kidney failure to date. And that has meant that, whilst the period that I went through chemo and my stem cell transplant was difficult, draining and the biggest challenge I have faced, I have been pretty healthy ever since. The worst that I have to deal with, tends to be getting ill when I do too much and staying ill for longer. And perhaps the issue with my bones breaking slightly more readily when I’ve played sport!
So why has our life got better from a diagnosis of an incurable cancer? I think that it has made us rethink how to live it. That doesn’t mean that we do whatever we want…we still have bills to pay, children to educate and the same every day quandaries that other people face. But it has made us think about whether I should work if it makes me more prone to getting ill, whether Nick is doing the right job, whether we spend too much time keeping other people happy and not enough thinking about the four of us. We definitely prioritise us first now and that is important for most families I would imagine. And that choice, has meant that we do more fun things as a family and I love that!
But myeloma does impact lives…even for those of us who are relatively well. You don’t always see the impact so it is hard for people to ‘get’ it. Despite being 95% well these days, I do get tired more easily and like I’ve already said, if I overdo it, I can end up in bed for a week. I take tablets morning and night that are the size of horse tranquillisers…and if I don’t, that’s me taking up the bathroom for an hour (Sorry if that’s too much info!). I have mild chemo tablets as a maintenance treatment which, whilst they don’t impact me too much, do cause the other issues above, and mean that getting things like travel insurance is made much more difficult….and far more expensive! While I’m on it being a very invisible cancer…..those of you that get cross seeing people in disabled bays but without wheelchairs etc, please stop and think. When I was on chemo, it was all I could do to get to the shops for 20 minutes, let alone have to park miles away etc. I don’t need or have a blue badge anymore, but know lots of myeloma patients who do, and who desperately need them DESPITE being able to walk without aids!
All in all though, I try to let the myeloma impact my life as little as I can. But if I say no to going out despite having nothing else on, or can’t fit a visit in to see you, please don’t take it personally. We’re dealing with something that many of you can’t and I hope you never will need to, begin to imagine. And for those of you living with myeloma yourselves, or supporting someone else….keep your chins up 🙂
As many people know, I am hoping to spend the next 9 months fundraising again. To date, with the help of family and friends, I have raised over £90,000. I am hoping to reach £100,000 through holding a cheese and wine event and undertaking other activities.
If my posts make you stop and think, perhaps you would like to sponsor me with my #finalcountdown, to support Myeloma UK and help make myeloma history. To do this, please either;
go to my just giving page
text ‘GASC75 £x’ to 70070
e.g ‘DEBG99 £5′ if you want to donate £5
Get in touch and let me know how you would like to help. If you fancy doing an event, you can set up a just giving page and then link to my team page to contribute!