Getting ready…

Today I’m back at the QE for lung and heart tests. They always do these before a transplant to check you’re healthy enough – keeping my fingers crossed there’s nothing to worry about! Sure there won’t be.

I’m feeling pretty healthy at the moment, if a little bit fat! I’ve signed up to the London to Paris virtual bike ride for Myeloma UK – you get a month to ride the 508km to Paris! I’m feeling slightly proud of myself as I started it 2 days after my stem cell harvest, and after 5 days have done 60% of it! I’d really like to finish the last 170km today and tomorrow!!

I’m not actually trying to fundraise on this one as I’d really like to do the real thing in May next year and I’ll need to ask everyone then so that I can raise the £1,500 sponsorship target. That’s on top of the £1000 I’ll pay out of my own pocket to take part! But if anyone does feel the desire to donate, they can do so here.

I’m also hoping to find a bike company who might donate/ help with the cost of a bike/ equipment so if anyone can help please let me know! I’m happy to advertise them on social media and the local press if so!! Currently trying to decide between a normal bike and an ebike- I’m likely to only be 4-6 months post transplant and far from full fitness so an electric bike might have to be the answer.

I’ll decide after I’ve had the transplant whether to go ahead or not – I think I have till Christmas to register. So we’ll have to see whether there are any complications and how well I am before I commit.

In the meantime, I’m trying to look into whether there are any benefits in doing my transplant privately. I’d get the same treatment I think, and at the same hospital, but possibly sooner and even more importantly, I think I’d be guaranteed a private room. I was lucky at the Marsden last time. Because we had young children they were able to give me a single room from day one (I also suffered from sickness and diarrhoea from day 1 so would have been put in a single room anyway). But that isn’t guaranteed a second time round and it does worry me. It’s not nice sharing private intimate details with strangers (other than on a blog of course 😂). So I’ve asked my consultant if it’s something worth looking into and we’ll go from there.

Happy 9 Year Birthday

Just dawned on me it is my 9 year birthday today – 9 years since I had the stem cells back that gave me everything I’ve had since – so lucky 💕💕

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The Stem Cell Harvest v2 – Day 2 (post plerixafor)

So after Wednesday’s disappointment, I went back that evening to receive plerixafor, a £5000 injection that helps move the stem cells from the bone marrow back to the blood for harvest (so so grateful that we have the NHS in this country – worth every penny of tax that Nick and I have ever paid!).

As I mentioned, I’d been warned about sickness and diarrhoea, but luckily only felt a little queasy and poorly. Unfortunately it also causes insomnia like the G-CSF injections and that seemed to be the one downside. Another night of no sleep (not helped by a fox deciding to get randy for an hour at 2am!) meant a tough start to the day.

That said, the day itself went fairly well. I’d been so nervous after the harvest I had back in 2011 when they’d had to go in my groin (and hit a nerve in the process!), that I have nothing but the utmost praise for the staff at the QE in Birmingham.

They put me straight onto the machine when I arrived at 8am and had managed to find veins with limited issues. We did start to have the same problems as in 2011 but they were great at slowing down the machine so that it wasn’t an issue.

As you can see from the photos, basically what happens is that they put a canular into one arm, and a large needle into the other and turn the machine on!!! The process isn’t at all painful which is good but it did cause what feels like a vibration through your whole body, and tingling and numbness in my hands and feet. This was due to my calcium levels dropping (all part of the process) and they just keep giving you tablets to help. (Luckily, it wasn’t as bad as 2011 when I’d ended up on a calcium drip and shaking.) I think the only other issue was when the big needle came out of my arm – you’re meant to keep your arm in one position for the whole 8 hours and without even realising it, I moved it at one stage so there was a slight panic trying to reset everything in opposite arms! But thankfully, the amazing team got it all started and the machine back working.

Throughout this, they’d done the same CD34 test at the day before to try to make sure that the plerixafor had worked and whether they were likely to get the stem cells. Around 1pm, they got the results which said that I’d only doubled my count and not quadrupled like we needed, so there was a bit of a concern about how many stem cells they’d actually get out.

Thankfully, the calculation the actual machine said was right and we managed nearly 1.5 million – I only needed 0.5 million to add to those that had been harvested back in 2011. So come 6pm last night, Nick finally got me home where I managed to get a much better nights sleep. That will be the last stem cell harvest I ever have to do as you’re only ever given 2 autologus transplants.

So now it’s another waiting game. I go in next week for lung and heart tests, and assuming that all is good there then I have to wait for the QE to start doing transplants again. We get the feeling that this won’t be before mid-August, but other than that don’t know when. The hope is that it will be before the winter when there is of course more risk from illnesses, a second wave of covid, etc.

I’d like to say thank you to everyone for all your lovely messages of love and support. I can’t begin to say how much it means at a time like this. It was 11 years ago today that I first got diagnosed with multiple myeloma, and never once have I felt alone with it. From Nick’s unwavering love and kindness through to all of our family and friends. I am so lucky to have you all around me. Thank you

The Stem Cell Harvest v2

8am: So five days ago I started prepping for my stem cell harvest which is taking place today. It involved 4 days of G-CSF injections which stimulate the production of stem cells so that there are enough of them for today’s harvest.

I think I’ve been quite lucky. The pain hasn’t been too bad, helped I think by the fact I’m already on pregablin, a treatment which blocks pain by interfering with nerve signals. It also helps deal with anxiety so I’d imagine it’s been great in reducing issues. It’s not been totally problem free, and I have had throbbing pain in my back and the base of my skull at times….I can only liken it a bit to labour pains? But since I’ve put that to the back of my mind, I couldn’t even swear on that. Last night was the worst but perhaps there was a level of anxiety in there about today that made it worse? I ended up getting up at 5am and watching The Blacklist as I couldn’t get back to sleep.

It’s all been much better than what I remember last time, so fingers crossed this will continue throughout today. I’m now sat in the Apheresis ward where they have just taken my blood. They will do what is called a CD34 blood test which will check the predicted level of stem cells. I’ll have to wait for a couple of hours for the results of that, but they’re assuming that I’ll be ok given I only need half a million cells (To put that into some sort of perspective, first time round at the Marsden, I got 4 million cells. You generally need 2.5 million per transplant). We’re expecting it all to be fine to go ahead today given how few I need so hopefully that will be the case!

10.15am: Gutted. Just found out that my count is only 8 and that it really needs to be 25+ to be worth them putting me on the machine. So that means that I now have to go home and then come back this evening when they’ll give me a drug called Plerixofor. From what I understand this is a pretty expensive drug, but it is meant to quadruple the count so I should be ok to come back tomorrow. It does cause sickness and diarrhoea so I’ve got that to look forward, alongside more bone pain I imagine.

It gives us an added complication as Rebecca is going off on her DofE expedition tomorrow too (isolating on return we think!). Poor Nick will have to drop me here at the hospital at 8am again, and then drive down to Hereford. Bloody covid means that no-one can help us with this one either.

Oh well. Hopefully tomorrow they’ll get enough stem cells in one go and I won’t have to come back on Friday too.

And so it begins…

Over a year since I relapsed and we’re now on route to my transplant.

Today I started on my G-CSF injections. These are used to stimulate my stem cells and I have to take three, every evening for 4 days. I actually don’t mind the injections as I’m lucky enough not to have a fear of needles. I’m not sure about the rest. Like with childbirth, I have parked my previous experiences 10 years ago, well in my internal being. Somewhere not to be revisited unless I read back on my blog (hmmm, why did I decide that was a good idea?!?!)

So, there is a chance of some side effects…bone pain and flu like symptoms the most common….the rest too scary (and hopefully too unlikely to even bother mentioning!!). So I took the first ones tonight and then followed them with a couple of G&T’s….didn’t read whether alcohol was recommended with them …. oops!

So, off to bed now and hoping for a decent nights sleep. I haven’t been sleeping well recently. Lots of dreams. Possibly anxiety related although I don’t feel particularly anxious. Might succumb to another sleeping tablet to help though. Why fight it.

Take two – we’re off again!

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

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

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?

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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