Deb Gascoyne

Take two – we’re off again!

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So, eleven years after my initial diagnosis, and 9 years since my first transplant, we’ve now been told that it’s time to harvest my stem cells in preparation for my second Stem Cell Transplant. The date for harvest (not transplant), will be the 15th July.

I have to say, whilst I’m naturally a bit nervous, I’m also really pleased that we’re moving forwards with the process give that I’d expected to have had my actual transplant by this point in time. Bloody covid-19! Whilst the QE in Birmingham still isn’t open for Stem Cell Transplants as they’re being super cautious, this means that once they do open up, hopefully I’ll be in a position to go in once it’s my turn on the waiting list. We’re quietly hoping for August/September.

So, what is a stem cell harvest? Basically, it is where, in this instance, they will take out my stem cells, in order that when I go in for my transplant and they give me a mega high dose of chemotherapy, that they can give those same stem cells back to me, to help me recover. The chemo puts my immunity at zero – without the stem cells it would be almost impossible for me to recover.

In order to harvest my stem cells, they’ve given me what are called GCS-F injections which I have to self inject for the 4 days before I go in. 3 injections every evening (my own fault for putting so much weight on!!). This should be fairly simple, although it is quite likely that for these few days, I’ll have a lot of bone pain, and possibly feel quite flu like.

I’ll then go in on the 15th July and they will test my blood to see whether my stem cell count looks high enough. If it does, I’ll be hooked up to a machine and all going well, they’ll pump the stem cells out and then let me home about 5 hours later! It wasn’t quite that straightforward back in 2011, so keep your fingers crossed for me as it’s one of the few processes I’m petrified of!

We’re hoping that a) my blood count is high enough and b) that they get enough stem cells on day 1. But if my count isn’t high enough, I’ll be given an injection that evening to help stimulate my cells further and will then go back the next day. I can have up to 3 of those injections I believe. I’m lucky in that I do already have some stem cells from the Royal Marsden when I had my first transplant so hopefully this won’t be a massive deal.

All in all this is good news. My general paraprotein level is staying stable thank goodness, so there is no rush for the transplant. But that said, it would be much better for me to have it over the summer, than in the winter when a pandemic repeat is a possibility, along with all the other winter bugs that float around!

Just want to say thank you again to all of you who put up with my rants and moans on here and who help support us through all of this….one day I might even shut up!

A little bit of happiness

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I thought I really ought to write to update after my last, fairly down, post.

Life is a little bit cheerier now. Not perfect, but then again, whose is? But I’ve increased my antidepressants and that has helped me to be able to pull myself out of that dark spot that was there. I’m so touched by the people who got in touch and who helped me during this spell too. Good friends are said to be hard to come by but I seem to be blessed to have lots surrounding us. And it goes without saying, that Nick was there supporting me fully throughout.

I’m definitely in a better place now, although I’m quite nervous about the easing of lockdown. It’s interesting to see on the news and on Facebook how many people are just quickly moving towards the old ‘normality’. We on the otherhand, are pretty nervous about the whole situation. At the end of the day Covid-19 is still there and just because the government tell us that we don’t have to shield anymore, doesn’t mean that we feel it is safe to stop everything that we’ve been doing for the past 4 months. After all, if we stop and one of us gets ill after all this time, how will we feel about it? Just for a bit of freedom.

I have to say, I have no wish to go clothes shopping, to go to the cinema or even to go to the pub. Not while we have to socially distance. If things are that worrying, there is no point in us risking those things. But I still miss catching up with friends and family, popping to the shops when we run short, playing netball and having the kids out and about. Oh, and the cleaner (as spoilt as that makes me sound!).

I would harp on about it, but I’d imagine the people reading this are linked to us or myeloma anyway and probably aren’t the people going to the beach or holding parties. But if you are, all I’d ask, is please be careful. Otherwise everything that we (and especially our teenage children) have given up, is almost pointless if we end up back where we were in March when lockdown started. Now isn’t the time to have drinks parties in the back garden just because no-one can see, or to stop thinking about the fact that even if you don’t get ill, you can pass coronavirus on to those that could get seriously ill.

Anyway, this wasn’t meant to be a rant about that, but more to say that things are a little happier in this household. Still bloody hard, but a little easier than they were! I’m back to hospital tomorrow for the next round of Dara…hopefully it will keep me on the straight and narrow until my Stem Cell Transplant is back on the cards.

Depression, Covid and the search for happiness

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I’ve deliberated over the past week about whether to write this post and still am not sure if I’ll actually post it.

Depression is something that I have had to deal with in my family since I was old enough to remember, and something that I have personally suffered from since I was 20. For many years, I fought it, hid it and didn’t really talk to anyone apart from Nick about it. Now it is something I possibly share too readily, but I make no excuses for that as mental health can literally be life or death for some people.

When I was 20 and at University I hit a real low. I still to this day don’t know why, but I spent days and days going to lectures and work, and then getting home and hiding away in my room, refusing to talk to any of my housemates. It took Nick, on the eve of my 21st birthday to begin to pull me out of it. We weren’t together at the time, but he was the only person I was able to talk to….and he is still amazing at getting me to open up when I don’t really want to. It didn’t go away overnight, and it wasn’t the happiest 21st, but I didn’t feel alone. The black void had turned slightly greyer and felt like it was something I could start to manage.

Photo by Eduardo Vázquez on Unsplash

My next major depression was after I went back to work for the bank after I’d had Sam. I tried to go back 3 days, but Sam was quite poorly on a regular basis and if I’m honest the bank wasn’t good at dealing with that. On top of that, they were quite untrusting that I’d make up work, even though I always did. I fell into another depressive period then, and ended up, at the time, much to my disgust, on antidepressants and signed off work for 2 weeks. I felt like a total failure. I can’t believe it now, but I think I’d been brought up to think that depression was an attention seeking behaviour and that drugs were just a cop out. And people who went off sick, (good god I was working in an HR department), well that really was just taking the mick out of the company and couldn’t truly be real….could it?

To this day, I think that the way I was handled over that period may have been the factor that kicked my myeloma into play (I eventually handed in my notice when they said they couldn’t give me 2 days…although they found a way to get me back on 2 days on an auxilliary contract straight after…without the life insurance that might have helped me with my myeloma diagnoisis).

Since my diagnosis of multiple myeloma back in 2009, I have struggled quite a lot with depression, on and off. Not often with really black holes, but definitely lots of grey ones. I’ve had counselling on and off which has helped although my best counsellor is often Nick. I’m permanently on antidepressants, and whilst I occasionally try to reduce them, to feed that ingrained fear of failure, I know in reality that I am on them for life. I think that all my hormonal changes from early menopause from myeloma treatment probably impact on that and so in reality I know it doesn’t matter that I’m on them. They help me so much, to the point Nick always knows when I try to reduce them as he can tell, literally within a couple of days, that my mood has changed.

So, what about this moment? I said that this post was about depression and covid. I’m definitely struggling at the moment and finding it very hard to be positive about most things at the moment. I know that I have it very easy in comparison to many, but this is my journey and my feelings. And I’m hoping that by writing this it helps me to validate my feelings. So what is it that is getting me down? There’s a few things I think:

  • Coronavirus – obviously everything that is going on at the moment is impossibly hard for lots of people at the moment. Especially those with no support, those who are extremely vulnerable like me, those in cramped spaces or those who are losing their livelihoods. We’ve been shielding (and at times isolating) and it’s been hard. Hard not to pop to shops, not to see people until recently, and even now, not being able to see larger groups yet. With some people criticising us for even going out for walks (before the recent change in guidance) that has played on my mind and I constantly find myself trying to justify our behaviour, our ‘flouting’ of guidance (hmm, yes having more than one person socially distancing in our garden!) and when we allow the children to have one friend over at a distance. But I think the fear of how long this will go on for, and how long we will have to shield for, is the biggest concern.
  • Link between Coronavirus & Treatment As much as I trust my consultant implicitly, I am finding the fact that my treatment is on hold really hard. I am worried about so many aspects of that. Whether it will mean that my numbers start to rise (bad), whether that might mean I need a new, challenging form of treatment, whether I might relapse altogether, whether I might not be allowed my Stem Cell Transplant and when any or all of this treatment is going to actually happen. Should I try and go for it all now while things are so difficult anyway, and take that risk that I’ll be more at risk of coronavirus when I come out of the hospital? Or should I wait and risk all the things I mentioned before? I have written to my consultant and he’s looking at timelines for me to try and remove a little of the uncertainty but I’m not sure how much of it is in his hands.
  • Impact on Children – This is one of the areas that I find the hardest to get my head around. I am so proud of both of our children. They have lived with my myeloma in such an amazing and proactive way. Despite the fact that they are often, understandably worried about me, they are such independent and strong minded kids. They don’t moan about what life with myeloma means for them or the limitations it imposes on them…and I can promise you now that there are many. Even now, having shielded for 13 weeks, being taken out of school early, and now, Rebecca not being able to go back despite being in Year 10…they haven’t complained once and are really matter of fact about it all. I worry though about what September looks like as they can’t be kept off past then. So how we keep safe with them back at school is beyond me. I don’t feel that they will be going back to school anything like it was before either. What about clubs? Do we stop them from those too? And then not only will they be behind in their social and educational progress, (something I know I can’t do anything about), but there is then the chance that I’ll disappear off for a transplant causing even more disruption in their life. In the meantime, are they really meant to go 6 months without really seeing their friends.
  • Impact on Nick – I mention Nick after the kids but I probably should put him first. But he is so practical that whilst I have no doubt that he struggles in his own ways with everything he is trying to hold together in the family, he somehow manages to deal with things (most of the time!). But I do worry about how it impacts his decisions on his work, and how he spends his own time. He often ends up having to pick up the pieces that I leave behind when I am ill/ tired/ depressed. He does it without complaint but it must have an impact on him. I so love him for it but wish it could be different
  • Injuries/ Pains/ Side Effects – I think at the moment things are even harder because of all the injuries and issues I’m trying to manage. One broken foot, one painful foot (possibly hairline fracture – self diagnosed!), a knee that keeps clicking out of place and stopping me moving for half an hour, painful wrists, regular bowel issues, eyes with cysts on them and a fat body!!! And that’s all I can remember for now!
  • Work – I don’t know whether I should get back to working or not….if my transplant is months away, perhaps I should – I hate not contributing financially. But then if it might be sooner, there is no point and I’d only let clients down. I keep wondering about doing online training but training big groups isn’t my strength and I’m scared of failing – another historical scar!!
  • House DIY – This is the least of my worries, but is still there. We started lots of work on Rebecca’s room and Nick’s study before lockdown and it all came to a standstill, unsurprisingly. We’ve moved on with work outside which is great, but the work on this house is never ending and one job seems to lead to another. There is so much outside painting to get on with, and with my boot I can’t even get up to reach many areas! And I’m also worried about the indoor work being outstanding – I won’t be surprised if we end up in another lockdown and then will it ever get finished? Finishing it would also give us an isolation room for the kids if needed.
  • Bloody politics – I don’t trust any of the politicians at the moment to be doing what is best for us as a country. They’re all in it for themselves and that is super scary.

So now that I’ve written that all out, perhaps it’s not surprising that I’m finding life quite difficult. I’m not quite in that rut that I’ve been in at my most depressed, but I’m certainly not in a happy place. I can only imagine how many other people out there are having similar feelings too. That lack of control, worry about the future and concern about what life is going to look like after 2020. Part of me now thinks we should give up trying…what is the worst that can happen? I probably shouldn’t admit this feeling, but part of me genuinely wonders whether if I did end up in that ‘not to be talked about’ position, that wouldn’t it allow everyone in my family to lead a more normal life moving forwards. No more trying to wrap me up in a bubble.

I think it is that thought in particular that makes me realise that I have a real issue at the moment. I think I might look at increasing my antidepressants. I hate having depression. I hate feeling that I shouldn’t have it. I’m lucky – I have an amazing family, and great friends. But that doesn’t seem to stop anyone from having it.

So, if you’re struggling, I understand. I’m not sure right now I can help, but I’ll always try. And even if I can’t now, I promise I’ll remember when I’m feeling better. Be kind, support friends and try to understand even if you don’t fully know how to.

And for those of my friends I haven’t been there for recently, I truly am sorry. I just don’t think I’d be much company. Please don’t feel the need to message after this post. This isn’t attention seeking….I just wanted to share that depression is real….and that it’s really difficult.

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What’s going on?

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I am so fed up today.

Don’t really know why but just cross with everyone and wish I could get spirited away somewhere on my own just for a few days.

I suppose if I try and work it out, it could just be to do with lockdown and being fed up of how it is affecting us all. And my foot is still so painful…probably because I’m doing so much around the house and garden in an attempt to not go mad!

We still don’t know how long this is for. I appreciate no-one does at the moment. But with talk of the ‘extremely vulnerable’ having to stay isolated till the end of August, at the moment there is no real end in sight.

I think I’m quite stressed despite trying not to be. I’m worried about my treatment and when that will happen. Will it be too early? Too late? Will it impact my ongoing heath? I’m worried about what to do with the kids when it’s time for them to go back to school. The decision not to send Rebecca back in June wasn’t too bad but god knows what we should do in September. I’m worried about the kids in general and them not really being able to join in with friends over the summer. And those are just the things that I can share on here.

And then I feel guilty as people are going through much worse things and I’m just whining….again

Maybe I’m just tired. I’m not sleeping brilliantly because of my foot and my wrist. But in reality I think I need to get out. I think I need variety in life and the one thing I haven’t had in the past three months of lockdown is variety!! (I know….nor has anyone else!). But I think that’s what’s getting me down.

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Daratumumab: results, side effects and the impact of Covid

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I’ve been thinking quite a lot about my treatment in the last few days for a few different reasons so I thought I’d get it all down in a blog post.

I was back at hospital last Monday for my latest dara infusion. Slightly less worrying than the previous visits as the hospital seemed totally on top of everything covid related….and I suppose after my visits to two other hospitals for my broken foot, I’ve had to relax a little about it all (please see previous post if this means nothing….for some reason, I don’t think it posted properly). Anyway, I got my results on bank holiday Friday, and they were at 7.2. So up a tiny bit but pretty much stable for now. A lovely start to the weekend and another excuse for a glass of wine (hmmm, who actually needs an excuse in lockdown??)

Stability has to be a good thing while the world is such a precarious place, but with cancer treatment opening up now that the initial crisis has calmed a little, it is probably sensible that I keep on top of what my options are and the questions I should be asking of my consultant next time I am in touch with him. It seems unlikely now that my numbers are going to go down dramatically now so I need to find out:

  1. Are my numbers low enough that they would consider harvesting my stem cells without further treatment, and if so, would they be prepared to do that now? As far as I remember, and because the QE don’t give me chemo for this process (unlike when I had the process at the Marsden), the process wouldn’t lower my immune system and so doing it while covid is around, might not be an issue. It is a day treatment too.
  2. If my numbers aren’t low enough, what will be the next treatment that I am put onto and would that change depending on how covid-19 is impacting on life? I don’t think they would now put me on the DT-Pace that I was so worried about originally because it impacts the immune system too much and there are other options that are being allowed due to coronovirus. So, if they think I need to have additional treatment, I think I would rather have it now while Nick is at home and the kids are off school, than have it later down the line when they might decide DT-Pace is the answer after all! I’m also potentially having more side effects from the dara than before which I’ll mention later.
  3. Are Stem Cell Transplants on the agenda to come back? For a while, transplants have been seen as less favourable as ongoing treatment regimes due to the fact they are hugely intensive, make patients very ill for around 2 months, and can’t be guaranteed to work for everyone. Last time I had mine though I was lucky enough to get 8 years remission (for many, two is considered good!), and effectively be treatment free – whilst I had maintenance therapy, after the first year, it didn’t impact my life at all! So I’m interested to be clear that they will be used again. I’ll be absolutely gutted if this takes them off the table as I don’t want to be on chemo indefinitely.

The other main reason I’ve been thinking about my treatment is because I’ve had a lot of wrist pain for the last 6-8 weeks. At first I just thought that I’d been doing too much and that it would ease off. Unfortunately, that hasn’t happened and not only has it got worse, but my other wrist has also started to show symptoms too. It could be something like tendonitis or carpel tunnel syndrome, but when I looked up the side effects of dara, joint pain is one of them. And when I asked the myeloma forum that I’m on, a number of people who are at the same stage as me for the treatment, are having a similar issue. It’s pretty painful when it does hurt, so if I am going to be asked to change treatment, I’m wondering if now wouldn’t be a good time with the hope that this side effect might diminish. Along with my eye cysts. Bowel Issues. Bone weakness. And all the other things that can really get you down on a bad day!!!

As I said to Nick this morning, I try really hard to be positive most of the time and see things as being good at the moment where my treatment is concerned. But it can be really hard when I look in the mirror and see a fat, broken lady with cysts on my eyes and a feeling that there is little I can do about any of it. I think my eyes really depress me as they were the only thing I actually used to like about my appearance anyway. Anyway, I’m not too miserable at the moment but really need to sort out these side effects!

I can’t see them making any final decisions on anything until they have my next lot of results, but we’ve asked for the opportunity to talk through the questions above and see where we stand. In the meantime, I’ll keep busy doing work on the house and homeschooling (if that’s what you can call it!) the kids.

Thankfully Nick working at home means he can help with the numerous things I now have to bow out of with a broken foot and painful hands – he’s a gem as always. We actually celebrated our 18th Wedding Anniversary the other day which was lovely. We cooked together, sent the kids to the other room and had some quality time just the two of us which was fab. Oooh….and there might have been a bit of champagne and fine wine involved too – thought I’d share a couple of pics!

Broken Again

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Last time I wrote I was 7 days into an isolation period. One that we’d chosen to take to try to keep Nick and the children safe from the risk of corona virus, after I’d been to hospital for treatment. I was feeling pretty low at the time, but thankfully managed to pull myself out of that and get myself together for when I came out of isolation on day 12 – last Saturday. How nice was that….lots of hugs and family time!

A consequence of the steroids I take, being in isolation, and being under ‘lockdown’….and a total lack of willpower when it comes to being stuck inside with cupboards containing anything edible, have meant that I have put on a HUGE amount of weight since July when I started my chemo. So last week, I had decided to start running with my son…to help him with his #15B415 challenge of running 15km in 2 days, and also to help with a challenge I’ve set up to get friends and family to walk/run 50,000km by the end of the year.

And it was great. He was so motivating when we ran and was really trying to help me improve as he knew how important it was to me. But unfortunately, on Monday while I was running, there was a sudden crack and my foot went. Those of you who have known me for a while, know this isn’t a sound that is unknown to me as I think I’ve broken my foot five times now in the past seven years! This was the second time I’ve broken my fifth metatarsal though and it seems to hurt far more than every other time.

It’s been a strange decision as to what to do though. With Covid-19 on the scene, and the fact we’ve been isolating so carefully for the past 7 weeks now, it wasn’t an automatic decision to go to hospital. In fact, if I’d had to go to A&E I wouldn’t have risked it. In the end Nick took me to the minor injuries fully masked and gloved, and with hand gel.

We also made the decision that we would NOT isolate this time round. It would have involved 3 weeks and, with Nick having to take me to hospital three times in one week, felt like it wouldn’t have made sense. I’ve also been finding things emotionally hard in the past few days (not helped by watching series 2 of After Life – brilliantly funny but also terribly sad and too close to home for me on many levels). The idea of spending 3 weeks pretty much on my own, filled me with dread, so I was really pleased when Nick (and the kids) agreed that they didn’t want me to go into isolation again. So keep your fingers crossed that I don’t pick anything up!

So for the time being, I am sat here with my foot up and making the most of children being around to make cups of tea (inbetween home schooling of course!). However, I’d like to stress I’m also trying to keep doing things as much as I can – even made a fruit crumble cake today! Hopefully six weeks will fly by and my foot will heal quickly!!

Broken again

Day 8 but losing the will

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I’ve now been in isolation from the family for nearly 8 days. Until tonight it hasn’t felt too bad, but then I started to see posts on a myeloma forum talking about the lockdown for myeloma patients.

The first that got me disillusioned (and slightly angry if I’m honest), was a post that suggested that as people in the highly vulnerable category were as bad as those going into parks during lockdown, if they went for a walk. For starters, I have never had my letter detailing what I should and shouldn’t do, but even if I had, going for a 30 minute walk, in a rural area where I don’t come within 2 metres of someone, is not the same as walking down a main road or stairway where I might have to get close to someone, or may have to touch something that is contaminated. The thought of people judging me, whilst I’m in the middle of giving up most of my life at the moment, just makes me so angry. I genuinely believe that whilst we should all be following the rules to protect the NHS, that I am sensible enough to only do what is safe.

The second post got me even more disillusioned and sad. Someone was asking whether they had been right in hearing that as the highly vulnerable category, we might have to stay in isolation until next year. Yes that’s right. 2021.

I. just. can’t. do. it.

I really strongly feel that the reason that I have gone through treatment and everything else over the years, was so that I could live a normal life for as long as possible. It is why I risked a transplant once, and why I am going to risk it a second time. Because it gives me drug free time that I can be myself as much as possible. What is the point of me putting myself through all of that, if at the end of it all, I have to stay in my house and am not allowed out. Don’t get me wrong, I love our home and I love our garden, but at no point did I ever think that would be my life.

Even more than that, with two youngish children, we can’t limit contact within the house indefinitely. So, what does that mean? That I have to send the kids to school, and Nick to work, and just not go within 2 metres of any of them for the next eight plus months? Being away from them all this last 8 days has been super hard and I’ve missed their affection and love. I can’t, for one minute, imagine not being able to be near them for months at a time once they go back to work and school. And they can’t stay at home for an unlimited period – it would send them insane and impact their growth, academically, socially and possibly physically. But I think my mental health will go to rock bottom if I can’t be with them.

Up until now, I’d been so good at not worrying until we knew the facts but for some reason, tonight it has really got to me. I am so worried that after everything that we have been through, this damned coronavirus is going to bloody ruin everything. I find it hard enough being limited by my myeloma, but the idea that in conjunction with covid-19, I might end up housebound, or worse still, dead, just doesn’t bear thought….hmmm, the irony given that I can’t stop thinking about it.

Hopefully tomorrow will be a new day, but I know that there is likely to be news in the next few days about an extended lockdown. And realistically, I know that us vulnerable ones, are likely to be in lockdown for an extra 4+ weeks. I can cope with that. I could probably even do a bit more than that if I had to, I’m just not sure about months more. And I probably sound like a petulant little pipsqueak (as my dad used to call me!) moaning, but unless you have walked in shoes like mine, you’ll never understand.

And talking of my dad, that’s another thing. When will I ever get to see him again? Will I ever get to see him again? The home he is in won’t even reply to my emails asking to try to facetime him, and whilst I know they will be run off their feet, I worry that he will be feeling lonely and wondering where we all are. And I miss him, dementia and all. I miss his lovely smiley face when you can see him suddenly work out that we’re someone he loves. And I miss my friends too 😦

So yes. Tonight I am feeling really sad and fed up. And really worried about what the future holds. More than any treatment I was facing into…at least that had an end point.

F*cking covid. I really hate it at the moment.

Myeloma and Covid-19 – this strange world

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So a few weeks ago I wrote a post in a time that felt so surreal. Nothing has changed, if anything it all gets weirder. Covid-19 is changing the world by the day and I honestly don’t think much will go back to the old ‘normal’.

For us as a family, once the rest of the UK went into lockdown, things have stayed largely the same as they are for others. Until today.

I have to say, that whilst I found the first two weeks really, really hard, the last two have become easier. I think I was so scared about how myeloma and coronavirus would mix, whereas now I have learnt to let that go….most of the time. Perhaps it got easier when it wasn’t just us doing the isolation piece – is that really selfish?

We are lucky that we have a spacious house and garden that has meant that our 3.5 weeks of isolation hasn’t felt cooped up. The children have home schooled well and we’re trying to help them to mix it up with dog walks, cycle rides, card games, and other things…anything to keep their mental health stronger…and ours! The same goes for us. We’re trying to make the most of our time with the kids, with each other and in the house. Lots of gardening (it has never looked so good!), decorating (lockdown hit before we could get the decorator in!), walking and cycling. Two meals a day all together, family boxsets and more facetiming than ever before. Oh, and courtesy of Nick, Sam is now sporting this wonderful haircut….he’ll never be allowed it again….and to be fair, he only did it to try and add to his fundraising total for Myeloma UK (pls sponsor if you haven’t – even a pound would be great!)

This week things are changing again though. I am currently writing this whilst I’m sat in hospital waiting for my monthly dartumumab infusion.

Mask, gloves and glasses all in place to try and reduce the risk of picking anything up while I’m in. I can’t believe when you’ve isolated for nearly a month, how scary it has felt having to come somewhere public again. Especially when I knew that staff on the team have had the virus! I’m just pleased I’m here this week and not last week, when apparently, staff weren’t wearing masks or anything. I’d even brought in masks for them, (thanks to my sister kindly donating them!), but thank god they weren’t needed. I didn’t want to look fussy asking them to wear them, even though I knew it was a fair request. Despite my fear of being out and about, there is an element of relief at seeing people. Of a gladness for human interaction, face to face. Even the car journey to the hospital felt like a blessing of some kind. It’s another reason to hope that we will all find something to be grateful for at the end of this viral pandemic.

So the downside of my hospital visit…We’ve decided that I will self-isolate at at the end of this. I don’t think I could forgive myself if I took anything home and the kids got ill. Not when I have a choice unlike so many of the amazing people out there who are still working to keep the country running. So, I will be going straight to my room when I get back – do not touch anything, do not pass go. I had big hugs with Nick and the kids as I left for hospital, and they will be the last ones for 12 days. I’m not quite sure how hard this will be. I think I’ll get lonely but imagine there’ll be lots of facetime and zoom catch ups with friends and family. I’ve got a couple of jigsaws, lots of books lined up, and we’ve moved the TV to our bedroom! I actually think it might be harder for Nick who is now not only working fulltime, but having to manage the kids over the Easter holidays, cook, clean and keep on top of everything! I’m very lucky to have such a capable and lovely husband (and yes he reads this blog 😉 )

But this period of time is affecting so many people. I have family (and friends) who are about to have a baby, others who have businesses that are up in the air at such a tough time, and others who have been separated from their families. And others who choose to put themselves out there to try to resolve this strange and terrifying virus – nurses, teachers, civil service staff plus many more. The whole world is worried – we are no exception. This blog feels slightly self-indulgent as I get further through writing it. But perhaps one day I will look back and it will be a record that will help.

To everyone, please stay safe….and stay at home. With much love.

xxxx

And change……

by

So unsurprisingly the Coronavirus has meant a total change in our life. Where to begin?

Well yesterday I was back to see the consultant. After my numbers going down the week before last, last week they went back up to 9.2. I’m sure there must be a better word than rollercoaster! Basically it means the graph shows my numbers as roughly staying the same. Which is definitely better than them rising. Before this week, I think they would have been considering hitting me with DT-Pace but because this blasts your immune system and would put me at greater risk of contracting Coronavirus, we’ve been told that both this, and Stem Cell Transplants have, unsurprisingly, all been cancelled for the foreseeable future.

So of course our next question was, what does this mean for me. The consultant is now happy, given the current climate, to see if the daratumumab can keep them at the current level till things blow over. Great. If it does. But what if not? Whilst the previous two options are now off the table for the time being, apparently if my numbers rise, the next option would be a drug called pomalidomide. This is in tablet form and in the same family as revlimid which kept me in remission for a long time. I tolerated that well although it is likely that my neutrophils will decrease which means I will still have lower immunity- so isolation again will be key.

I have to say I’m quite relieved. With everything that has been happening, we thought it was unlikely they’d still do transplants but I was concerned that there would be no alternatives and that they’d have to leave my numbers to just increase, risking bone damage and/or kidney damage. So I’m really relieved that this isn’t the case even if it does mean the whole situation has changed again. Better a different course of treatment than no treatment, or a treatment that would put me at major risk.

Last week Nick and I also started to talk seriously about what the virus might mean for our lifestyle and whether we were happy to wait to be told what to do or whether we should think ahead. We decided that we were getting more and more concerned about the risk that we were facing especially with the kids being at school and clubs every day.

Nick’s company had already contacted him at the beginning of the week to say he had been put on the ‘at risk’ list due to my myeloma and the treatment I’m on. This meant that he didn’t have to go to the same meetings, hospital visits etc that might normally have been part of his role, nor travel to London for unimportant meetings. So if he stayed off work, but we kept the kids at school, it felt like we were doing things in a very half arsed way!

By the following day things had moved on and most of his company was being told to work from home where possible and so we talked again and decided that we were going to email the school to tell them we’d be withdrawing them.

The kids haven’t loved the decision if I’m honest because they can’t see their friends but they have understood why we’ve done it. I’m not sure they particularly love our commitment to home schooling them – lol. We’ve been so lucky as the school has been amazing in their support in terms of a) agreeing they would support the decision and b) agreeing to get teachers to send work home each lesson. We’re ever so proud of how the kids are doing though – they’ve been following lesson plans each day and doing their homework. It’s not easy when you don’t get to see your friends at all at that age (or at my age!). I’m sort of hoping that schools close soon for their sake – they won’t feel so separate then. At least now most clubs have finished so they aren’t worried about missing out there.

At the same time as withdrawing them, Nick and I made the decision to self-isolate. Me totally and Nick as far as he can do whilst supporting us. We’re now 4 days in and I can promise you it isn’t easy so I can understand why the government wanted to wait to ask people to do it!! It’s amazing how many things you forget that you ‘pop out’ to do. Birthday cards, loaf of bread etc.

It’s also amazing how many things come into your home that have been touched. Most of us have probably seen the change in behaviour of amazon and Royal Mail but have you thought about wiping down packages when they come in. And what about your online food shop that so sensibly keeps you in isolation? Should every packet be wiped down? Or kept separate for 12 hours to and sure any viruses have died? Have I just become paranoid? All mad when you start thinking about it, but think about it we all should. This is really serious.

So yesterday most British people heard Boris Johnson and his team tell us that people like me, with myeloma, should isolate ourselves for 12 weeks. We got there first! But it’s going to be hard. Very hard. Especially once other groups get added to this, which I’m convinced they will be.

I can’t totally isolate as I have to go to hospital once a month for my treatment. But it sounds like that’ll be ask quick and careful as possible and I’ll be set back home to get results via the phone and not face to face. That suits me now that they aren’t planning to change much or move forward with the SCT. To be honest I think I’ll need that trip to stay anywhere near sane!!

I’m sure there’s more but my brain has gone for now so I’ll stop boring folk!