The Aftermath – Feeling Bipolar

So I’ve been out of hospital for two months now (tomorrow!) and all in all, I can’t complain about how things have gone. I am doing so well in terms of general fitness and whilst I’m definitely not doing as much as ‘pre-transplant’, I am doing much more than I’d expected at this stage. I regularly do a 40min-1 hour dog walk, cook, potter around the house doing chores etc and today, I did my first indoor bike ride! I am so proud that I managed to do 40 minutes, even if it wasn’t as fast or hard as I had been doing before. It makes me hope that I might manage to do that London to Paris in May for Myeloma UK…even if it is on an e-bike! (And assuming Covid doesn’t stop me 😦 )

We’re also well ahead for Christmas preparations with the Christmas cake made (didn’t quite get onto the mince pies – whoops), Christmas calendars put together, stocking fillers ordered and wrapped and a number of presents bought (If I’ve asked you for ideas and you haven’t given them to me, please do!!!). And don’t be cross that we’re ahead. If I don’t do this slowly but surely, we know from experience that I end up stressing and rushing and end up ill over Christmas. So Nick and I decided to start early so that we could reduce that level of stress. He’s even nearly finished the infamous Christmas newsletter!

But despite all of that and knowing how well we are/ I am doing, I feel really low at the moment and like I could just snap. In fact I am doing with the kids and most of the time they’re just being kids. And they’re bloody amazing kids too. But somehow I still manage to get cross about stupid stuff like exams and xboxes. In the grand scheme of things who really cares. Well me, obviously.

I keep feeling really teary and sad and I don’t really know why. Things are good. I couldn’t have asked to be in a better place, healthwise, at this moment in time. I’m trying to remember if the same happened last time round. I do remember feeling strangely low about things being ok again and I think that might be when I started on anti-depressants. But I’m already on those.

The only thing I wonder about is whether I’m just over-tired and therefore much more emotional. I don’t get to sleep well, and even then, only with the help of sleeping tablets. I have horribly aching calves at night and restless leg and arm syndrome (I think) and it means that everything aches/ hurts/ keeps me awake! Even during the day I’m finding my calves are painful but I can keep going through that as it’s generally when I’m still. So I probably get about 7-8 hours sleep a night when I could do with a lot more in my recovery phase – I reckon I need 8-9 hours when I’m 100% well.

I think there is also a bit of a case of ‘falling off the cliff’. I’ve been doing so well and been so positive for the last month, that perhaps it’s too much to keep up. I know that sounds silly but maybe I’m fooling myself a little bit about how hard this journey has been and still is. Maybe I’m just shattered mentally as well as physically.

Oh well. Hopefully writing this all down will help me a bit. It often does. Hopefully tomorrow I’ll wake up positive again – I really hope so.

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Moving forwards

So it’s been a really good couple of weeks! I’ve been able to get out on longer dog walks (up to an hour!), am cooking most meals, ironing and generally able, mentally, to do most of the things I was doing pre-transplant. And whilst it can wipe me out a lot and mean I’m quite tired in the evening, it feels really good to be properly up and about, just two months after my transplant. I even did 2 hours of ‘leaf clearing’ yesterday! I love contributing properly again. Nothing better for the mental health.

I also spoke with my consultant last week and he has told me that my bloods are looking good and within the ‘normal’ range. A real relief in this time of covid. It doesn’t mean I’m not at risk, but does mean that I might stand a chance if I was to get it – always good to know!

I’ve also made the decision to go ahead with daratumumab as a maintenance therapy. Now that I’m feeling a lot better, it feels like it’s not really up for debate. If I was to relapse and I hadn’t gone ahead with it, I think I would always wonder if I’d caused the issue. I’ve also got the option to extend the period between treatments if I do find it harder post-SCT. So we’ll see how I do this week (I’m in hospital as I write this waiting for treatment), and if I find it really hard going I’ll ask to go to every 6 weeks.

So generally, life is pretty good going. I’m definitely doing better than I did first time round, and hopefully if I can continue to listen to my body and not overdo things around the house, it will continue to improve and I’ll continue to get stronger.

And whilst this may go down like a lead balloon, although other people are dreading another lockdown, for me, from a selfish perspective, I’m quite relieved. It keeps me that bit safer and nothing really changes for us. We’ve not been out (other than dog walks and hospital) for nearly 10 months now, not been to a restaurant, not properly socialised. I know it’s very inward looking, but that was starting to get hard, and now I don’t feel like we’re missing out on quite so much.

Christmas is going to be strange this year for everyone I think. I’m convinced we’ll still be in lockdown but Nick and I are determined to make this a period of positives. We’ve started planning for Christmas already, secret Santa Christmas outfits for the family, entertainment, food…we’re on it! Thankfully he’s really good at coming up with ideas and they really made me smile at a time I was a little bit miserable. I’m even going to make the Christmas cake and first mince pies this week ✅. We’ve been so lucky (and worked hard) to keep safe and I think we want to see this next couple of months as a time to try and celebrate that, even in lockdown. And hopefully to catch up virtually with all those people who have helped us.

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Stupidity rules!

So after a good few days, last week I took a total dip. I kept feeling lightheaded and dizzy and it totally threw me and got me really down. I was meant to be getting stronger not weaker. Nick and I talked and decided perhaps it was to do with a change in my antiemetics and that I would ask my consultant last Thursday. The consultant agreed that they could cause diZziness and suggested I started to decrease them slowly.

Because that’s the sensible thing to do with any drug change isn’t it. You certainly wouldn’t come straight off anything unless that was advised would you?! So you can imagine what both Nick and I thought yesterday when we realised that somehow, I hadn’t put my antidepressants in my pill box…and I hadn’t therefore had any for nearly a week…the time that I’d pretty much felt awful for!

Unsurprisingly, today I am a new person! I feel almost normal again (just the exhaustion and quick to tire still there ) my sickness etc seems to have decreased massively and I am so happy to be feeling like I actually want to take part in what the family is doing.

I can’t believe how stupid I was to have missed that tablet. Out of all of the ones I could have missed it was probably the most serious one. Also explains why I sobbed myself to sleep on Thursday night! But I’m just relieved that I worked it out. Lesson learnt most definitely.

Oh and the other good news is no more consultant calls for two weeks! Will go in for bloods then and assuming things are good still, we’ll have to make the decision whether I’ll go back into daratumumab or make the decision for a treatment free period (very appealing). I think I’ll probably end up back on the dara – mainly because I’ll feel guilty if I relapse quickly and I haven’t done what was offered. But the good news is that if I do go back on it, I can probably do it slightly less frequently which might be a nice compromise.

The other thing that happened this week to make us very grateful was that we heard on the news that the ward I was on at the QE Birmingham had, worryingly, had 3 cases of covid-19, coming from asymptomatic nurses. Given I’d only been out a couple of weeks, it made us feel very lucky for our timing. We always knew that we had a window of opportunity but didn’t expect it to be such a small one. Thankfully I think those affected are ok but it’s very scary for those still on the ward, especially since it has been closed to new patients. To those who think covid is a conspiracy, think again.

So I’m hoping for a nice family weekend where perhaps am a bit more with it. I’ve already prepped and made a guacamole for dinner and I’m not on the floor! Didn’t manage to go to say happy birthday to my niece, but to be fair that was about not being out in the cold for any length of time. Back to the jigsaws and some games … who knows, maybe I’ll even stay up late enough to have a film night with them 🥰🥰

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