Firstly, I just wanted to say that things are a little better. Thank you to so many people who (even though it wasn’t asked for!), sent me a message to say that they were thinking of me.
After my last post, I took some time to try to think a bit about what was going on in my head. I was really honest with my boss too and she was amazing at letting me have some space to just consider what I needed to do differently and what was making me feel so sad. So, as Christmas got closer, I was definitely in a much better place than before – I think that upping my antidepressants probably helped too!
But as 2023 begins, I’m still not looking at it as a year to look forward to, no matter how miserable that makes me sound. I’m pretty much convinced that at some point this year things will move on with my myeloma and that I will need to change my treatment…..and that un-nerves me as I honestly do (most of the time!) really like what is going on in my life at the moment. I hope that I’m wrong, I really do!
I’m not really sure what to do for the best. I admitted to Nick the other evening that I am just fed up of being on treatment. When you think about it, I have been on some kind of drugs, even if only maintenance therapy, for the last 13 years of my life. Sometimes just 5 or 6 pills a day, other times far more, and all alongside hospital treatments and therapies. At the moment, I go in to the hospital twice a month. Once to do a covid test and my bloods, and once to have my daratumumab infusion (an immunotherapy injection). So twice a week, I have to take time out of work to do that, and then make that time up.
More than that though is the way it makes me feel. For around 5-6 days every month, I feel wiped out, sick, high as a kite, cross and generally fed up. That’s nearly a quarter of the year when you think about it longer term. It’s no wonder I’ve had enough. I’m seriously considering a conversation with my consultant about what the dara is actually doing for me and whether it is genuinely likely to be keeping me in a longer remission. Because if not, why am I doing it. Why not just come off treatment and hope for the best? When time is likely to be limited anyway, wouldn’t it make more sense to be able to enjoy it fully?
But I know that Nick doesn’t want me to make that choice. He’s nervous that it would shorten my remission and mean that I ended up on treatment sooner. And he’s probably correct to be worried. In my heart, I know that is a major risk. I also know that when I have to change my treatment at some stage, that it could be for something stronger and more aggressive that gives me even less quality time or that makes me feel even sicker. And I know that I don’t want that either.
I think this is probably why I’ve been so fed up recently. Having that all going round in your head all the time can sometimes make life difficult to embrace.
All that said though, I am trying. I finally got out on my bike for the first time today in nearly a month and whilst it was tough (it’s unbelievable how fast you can lose your fitness!), it was great to be out again and made me realise how important it is for my wellbeing too. Nick and I are going to try to book a week away (perhaps Venice and Italy?) so that we have something to look forward to. I’m going to try to cut back a little at work and not feel like I have to do so much.
So here’s to the best 2023 that we can all have, no matter what life throws at us. Thank you for family and friendship in 2022 and much love to everyone. xxx
Very best wishes to you and your family for the New Year. I have been reading your messages for some time and really admire your achievements! The most frustrating thing for me is feeling dog tired so much of the time (and I have my dog, Tilly, to compare myself with, so I know I am sometimes even more than dog tired). I’m meant to be taking about 20 tablets each day and it drives me crazy, especially as some can’t be taken with others, or need between one and three hours space from taking anything else. It’s like a full time job. Sometimes I just take those I deem to be most important, sshh (I never miss my chemotherapy, in case anyone from the Royal Marsden is reading this 😇). Like you I try to enjoy life and look on the bright side, but having the C sword hanging over us can be a scary prospect. So I think we have a right to have a wobble now and then. Take care and may this year be really kind to you. x
Glad you are feeling a wee bit brighter Deb. And super glad you got back on your bike yesterday 🙂 Exercise is always a winner for me and living by the sea has been a tremendous meditation….. I’ve a whole load of appointments coming up this month. My consultant lets me go 2 months now before all the bloods and infusions. I’m pretty sick of it all like yourself but feel very fortunate to have access to a crumbling, money starved NHS. We’d be bankrupt if we lived in America! My whole family are nurses and I hear first hand about the current NHS situation. It is a service on its knees for sure 🙁
I often have the same conversation with my husband Dave about giving up treatment – is the Lenalidomide helping keeping me in remission?? Is it worth all the side effects? I don’t know Deb – for now I’ll carry on and cross my fingers for 2023. Just know that you are not alone. I’ve only had 3 years of treatment which seems mild compared to your mammoth 13 years, so what am I moaning about eh
Much love and healing vibes
Deb Marteau X