Holidays, Treatment plans and celebrations

I thought I’d make the most of my hospital day to update my blog.

It’s been a while since I wrote, and that’s been for good reasons – whilst we didn’t manage to get away for a nice hot relaxing holiday (too expensive at half term!), we did manage to get away for a week to Scotland. Sounds straightforward, but I did have to get agreement to put my treatment on hold for a week.

I have to say, that was the best thing ever. It sounds ridiculous, but whilst I knew that a lot of how I was feeling was due to the drugs, you do start to question whether a lot of it is an excuse….was I making it easy for myself to be grumpy by blaming the drugs? But it became clear on my week off, just how much it was the drugs impacting me. I was so much calmer, much less ‘tetchy’ and much more happy to let things lie. I felt good too. Not so tired and my taste came back.

It was absolutely lovely and we certainly made the most of it. We started off at a forest cabin in Strathyre…..walking, cycling, eating and drinking! A hot tub was a welcome chance to have quality chats with the kids and really get back to the basics. We even found time for a game of Monopoly and a bit of scrabble! We then went on to Edinburgh (with a small distillery detour for Nick!) where we traumatised Rebecca with the ‘Rocky Horror Show’ (bad parents – had forgotten how risque it was!), did the Camera Obscura, a tour under the City, and walked up Arthur’s Seat (well the footstool next to it 😉 ) By the end of it, when we left, I was definitely ready to come home for a rest. But it was a fabulous few days away that had been much needed for us all.

The other thing that we did while we were in Edinburgh was to go and visit the Myeloma UK offices and meet the teams! I’ve been fundraising for them for nearly 10 years now and never been up to see them so it was the perfect opportunity. I was going to go on my own, but then our son, Sam said he wanted to come too. So all four of us went along. It was great to see them and speak about all the work that they’re doing! What was really amazing though was that Sam was totally inspired by the visit and has decided to do his own fundraiser towards my #50KB450 – he’s now chosen to do his own #15B415 where he is doing 15 challenges to raise awareness and money for Myeloma UK. Within 24 hours he’d blown away his initial target, so he’s really happy already! If anyone can help him with any challenges, please do! Even if it’s just to help tweet about it that would be great! Feeling super proud of what he’s doing as he’s doing it with very limited input from me!

While we were at the offices, we were also able to talk about an award that I’d been nominated for….and for which, I’m excited to say, that I won as ‘Helpline Volunteer of the Year’ for my work with Myeloma UK. I didn’t go to the ceremony, partially because I am trying to limit how much I do with my tiredness, but also, if I’m honest, because I really didn’t expect that I had a chance of winning it! I was totally gobsmacked when they told me, but very proud! If you’re interested in knowing more, there’s a link here: https://www.myeloma.org.uk/news/helplines-partnership-award-success-for-myeloma-uk/

What was also great was that just before we went to Scotland, I had seen my consultant for my monthly catch up. My numbers are continuing to reduce….now 11.3 so a nice steady decrease. They’ll be looking for that to go down to as close to zero as we can do but it’s halved now and I reckon I’m around half way through the initial chemotherapy treatment. The other news my consultant gave me was about those timings. Apparently once I get to the end of January, I’ll come off the velcade and the dexamethasone part of the DVD. Since those are the drugs that I ‘think’ are giving me the worst side effects, I’m over the moon that there is an end in sight for those. I’ll keep going with the darathumamib infusions (once a month), but I’ll basically come off everything else.

This will give my body a chance to recover for a couple of months before, drum roll, I have my Stem Cell Transplant (No.2). I’m so relieved to have an idea of when this might happen now. I know things can still change but not knowing when it might happen was really frustrating me and my control freak tendancies. At least now I can plan how life might look for the next 6 months, even if I have to change it down the line. Strange really. Most people want to put off these things but I just want to get through the transplant with the hope that life WILL go back to normal in the months afterwards. I’m trying not to wish time away now – Nick is right that we should be enjoying and making the most of it – but I do want to get past the transplant as I know how awful that will be.

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When sleep is like a Facebook timeline!

Last night was a Dex night. I often don’t get to sleep till 3am on the first night, but now I’ve added sertraline back into my concoction of drugs, I thought I’d go to bed at a relatively normal time.

I actually got to sleep pretty fast! But after that it was such a surreal night and genuinely felt like I was working my way through my Facebook / LinkedIn timelines!! It was all I could do to stop myself getting up and doing the things I was having go through my head.

What was weirdest was that it wasn’t really a dream either.

I’m thinking I need a break! Hopefully by the end of this month I’ll have cut down my work quite significantly which will mean that I can take a bit of time out. I might even come off Facebook for a few weeks if I can set up my work to run without me!

In the meantime, I’m grateful for a semi normal nights sleep on a Monday!

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The Reality of Myeloma – the incurable bloody cancer

This last week has been a really hard one for me. And probably for the whole family. And it has made me face into a few things about myeloma that I think I have managed to bury over the last few years. Things that have meant that I’ve sobbed, and shouted and sobbed some more. It is the biggest bastard disease in the world and I don’t really like what I’ve had to realise this week.

In my previous posts, I’ve said a lot about dex and the impact that this awful steroid can have on life. This week has been such a tough one and I’ve spent far too much time just feeling really sad and low and on the verge of tears. Or ready to snap for no reason whatsoever. It’s been harder still as Nick is in a new role at the moment and is away more than normal – something I totally support and understand, but something that makes it hard…..for both of us…..when I’m in such a fragile state. I miss his support, his advice and his companionship when he’s away. And with what’s going on, it doesn’t take him being away for long for us to lose that connection which is our strength together. Talking over the phone just isn’t the same when you know someone can’t do anything or that you make them feel worse.

Luckily, because he is the most caring and ‘in-touch’ man I can think of, he is just amazing at pulling us back together as soon as he is home. So Friday night we just talked and talked. About how sad and low I was. How hard I was finding the treatment. Our difference in how we view whether we want my transplant sooner or later. Why we have those differences. God, just so much.

I’ve been very much focused on just wanting to get through my treatment, my transplant and getting out the other side. With the view that if I can keep well and survive (yes it is still about survival), the chemo and the SCT, that then I will get my life back to normal like last time, and that we can have another 5-8 years of remission by which time Car-T therapy will be in place, there’ll be a cure for myeloma and I’ll be able to live into old age with Nick. Easy as.

How on earth could it be any different to that?

I think I’ve been living in dreamland though. It might be the downside of Nick now working with Car-T (not for myeloma). He really understands it now, and understands myeloma in a way that perhaps we didn’t before. Although, that said, I think that he perhaps hadn’t buried his head like me over the past 6 years. Funny isn’t it….I never thought I was burying my head, I thought I was being positive and upbeat….and maybe it’s the only way you can live with this bastard disease. I think Nick was constantly living with the reality in his head – the fear that he will be lucky to have me in the years of retirement. And I genuinely, (fool that I am), had thought that all the advances in myeloma treatment, meant I would be there with him. How different could two peoples thinking be?!

So what is the reality? Well, Car-T is still a way off for myeloma patients….at least a couple of years probably. And it sounds like it perhaps isn’t quite as straightforward in its use as with other blood cancers. Something to do with how difficult it is to deal with the plasma cells I think but don’t hold me to that. And it sounds like ‘THE CURE’ isn’t quite the cure that I had in my head. Like with anything, they won’t know about cures until time takes its course.

From what I can understand, after this set of treatment, assuming it all works well for me (which we can’t take for granted), once I relapsed for a second time, assuming Car-T was even available to me, I would go through that if I was eligible. But at the moment, whilst it works well for 50% of patients, it doesn’t for 50%. That’s tough. So then, you’re onto fourth line treatment and by this stage you have less options as you’ve already gone through loads on the journey to here. And your body is weaker anyway. And the myeloma has often gained strength. And if I was to get lucky with that Car-T and be one of the people that do well on it….well we still don’t know how long it will work for, whether the myeloma will find a way of surviving it or mutating.

In reality, I can’t get that far ahead. We don’t know how I’ll respond to this treatment and that is the first step. We can only hope that I get something close to what I got last time in remission…but we know we can’t take that for granted. Then we’ll just have to wait and see. See what new treatments come up. See how Car-T develops. There’s no point second guessing, but I suppose what I’m trying to say is that my positive thinking might have been ever so slightly on the ‘unrealistic’ scale – and I’m not saying this to be negative, but to help people understand why this disease messes with my head so much! And why I struggle so much at times.

It’s all quite complicated. I don’t really understand it all. But I understand the fact now that perhaps I shouldn’t be taking my current health for granted. Yes I’m shattered. Yes I feel rubbish about 85% of the time. But, I’m not in hospital, I’m not having negative reactions to the drugs that lay me up, and I’m not bed-ridden. I’m doing really well in comparison to so many people going through this treatment.

I need to find a way of enjoying this next 6 months, even if it is on a slightly less energetic level. We’re looking into counselling and mindfulness, but Nick also reminded me that I made the slightly strange decision to come off my anti-depressants just before I started treatment. I’d done this based on the fact I thought one of my other drugs was handling this aspect of my care, but I think I was wrong. It was like a lightbulb went on when he suggested I go back on them. What on earth had I been thinking? I’m such an advocate of using them when needed and not being too proud, yet there I was taking myself off them! So, back on the sertraline as of yesterday and we’ll see how that goes this week.

Today is a good day. Yesterday was a good day too. I don’t think it was the sertraline – it’s too soon. I think it’s because Nick and I had those BIG conversations that were hard but necessary. We talked again about things we’ve only skirted over for the past five years. We were really honest with each other. And as hard as some of those conversations were, it has allowed us to acknowledge what we both need, and what we’re both dealing with in our heads. Our strength has always been our communication and our honesty and I think we’re stronger again now we’ve faced into, and talked through what the future might look like.

I’m not sure what that means for me. I’m not sure whether it’ll make it all harder for me being open to all of the above. Or whether it will make it easier to grab moments, live positively and make the most of the next 6 months. But I’m going to try. For the sake of Nick and the kids….and for me. Being sad and unhappy is sooooo draining and somehow I need to find a way to manage it all better….but I know I’m one step towards that with Nick holding my hand.

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