It’s been a strange couple of days for me after my monthly treatment on Monday. I think perhaps I have been putting everything to the back of my mind and trying to forget that I’m not 100% yet…and certainly not free from myeloma.
Don’t get me wrong. Nothing major has happened. But I just found myself mentally crashing yesterday, for the first time in a while. I felt really strange, tearful and just not myself. It made me cross at the same time and all my patience disappeared. I had to take myself off to bed before I said something I regretted to someone in the house who didn’t deserve it! I then slept really badly and whilst I woke up ok today, have found keeping on top of things super stressful.
Some people might say that I was anxious about today’s consultant appointment too, but I genuinely don’t think I’ve had time this week to even consider it, let alone worry about it. On that note, we have a similar story to normal. My paraprotein has gone back up to 7.7- hmmmh didn’t have long to celebrate it being lower 🤣. That said, I’m relieved it hasn’t gone up. As my consultant said, he’s given up trying to find adjectives to describe my ‘yo-yo’ ing results. It baffles them. And even I don’t worry now – well not knowingly anyway. I’ll wait until there’s any sort of pattern before getting stressed out.
He also talked to me about vaccinations. I’ll be tested for antibodies for all those childhood conditions that were vaccinated against – MMR etc. Basically, when I had my transplant, it was as if they reset my body so they have to check if I have any immunity. If I don’t, I’ll get re-vaccinated. If I do, all is good. He also reiterated that I shouldn’t read too much into my antibody testing that I talked about last time. He firmly believes no one knows yet how to interpret the results and that whilst it’s good that I’m showing antibodies, that I shouldn’t relax and take my foot off the pedal.
That’s actually the bit of news I’m least happy with even if it doesn’t surprise me. We’d just started to relax a bit with how we’ve been managing our ‘covid lifestyle’ and I’d been looking forward to easing even further. (We even had a lovely evening round with friends last weekend!) Now I’m not quite sure what I should do. I have promised Rebecca that I’ll take her shopping tomorrow for a prom dress. I let her down last Sunday when I double booked by mistake. I can’t let her down again. But I wonder if I’m being stupid going into a shopping centre. We’ll just have to be super careful while we’re in there. And then I won’t do it again.
I also think it probably means that we won’t want to go to big gatherings where we don’t know that people are vaccinated. Even though I want to. Argh so flipping frustrating to not quite know what the right thing is to do and in reality no-one can help with that yet.
So I’ll just have to keep trying to be busy cycling and working and doing house renovations. Can’t say that there isn’t enough there to fill 2 weeks for every one that I actually have! I’ve just taken on a bit of extra work which is going to really challenge me even though it’s only a few hours – might even have to do some extra online social media learning!! I’m hoping it’s not one thing too far, as it seems to have coincided with my slight downward spiral! But it’ll be nice to be able to financially contribute a tiny bit to all the renovations we need to do this summer. Even if it is only tiny in comparison to what Nick brings in!
Anyway, another early night for me tonight, in the hope that I wake up in a slightly better frame of mind again tomorrow.
Debs' Journey with Myeloma 
Dear Deb
I dont think you’re alone in feeling frustrated and disappointed at being told to continue to be cautious after all these months of shielding. I remember being so upset at the start when it began to dawn on me that I was expected to stay in the house for a whole twelve weeks! More like twelve months and still counting.
I remember the feeling of relief when the vaccines arrived. Im thinking that the more people are vaccinated around us then the safer we must surely be?
What a world we’re in when something as exciting as going shopping for a prom dress is tinged with worry . That feeling of “have I got away with it?” or have I made a mistake? Plus I notice with covid that people instantly ask “where did they catch it.” or “what were they doing?” There’s blame attached that isnt there with other illnesses!
Im contemplating not attending my aunties funeral in a few weeks time because suddenly its ok for me to be in a gathering inside of 30 people who have just travelled from all over the country plus someone flying in from abroad!
As for large gatherings well the thought of being excluded from concerts and theatres makes me despair. Will we just chance it in the end? The real problem with myeloma is that we dont want to waste a moment of hard won remission and it feels like that time has been stolen.
Hope you and your daughter have a lovely and successful shopping trip. Oh to be that age again!!
Take care love Sue
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Hi Susan. You’ve really hit the nail on the head. I don’t want to waste my time being stuck inside. If I relapse I don’t want to look back and go ‘if only I’d ….’. That’s not how I’ve handled this whole diagnosis and I don’t really want to start now.
I’m so sorry to hear about your auntie and I hope you can find a way of feeling right about whichever decision you make. Neither is wrong!
Yes Rebecca is sooooo excited about buying a prom dress!! She’s not even one for partying but it’s just something very different for her…helps that her dad has said we’ll pay 🤣🤣
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Hi Deb. Hope you a feeling a bit better. I watch your progress with some interest even though I no longer have to deal with myeloma myself. I can’t imagine how challenging it is with a young family.
Quick question on behalf of a colleague whose husband hasnlymphoma – where did you get your private spike test done? Like you she’s fretting about whether her husband is sufficiently immune now he has been vaccinated. I said i would ask you as you’ve been through this
I do hope the other tests reveal the childhood vaccinations are still working. No one raised this after John had his transplant!
Take care and enjoy yourself as much as you can.
Alexis
Sent from my iPad
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https://www.testingforall.org/product/covid-19-immunity-tracker/
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Hi Alexis. Thanks for your message. I used a company called ‘Testing for All’. It was all very efficient and quick. The only thing I would say is that my consultant has said not to relax too much despite having such good results. I think we will anyway as we need to live our live, not just survive it.
Re the childhood vaccines, the Royal Marsden never did anything with these. I wasn’t even tested. But I know lots of places do. I do find it a little frustrating that everywhere is so different. I haven’t had a bone marrow biopsy for nine years now (basically since I finished my first transplant!). Yet other people have them/ scans regularly. Can’t say I’m disappointed given how painful I find them, but it is slightly worrying that someone might miss something!
Take care
Deb
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Gosh just one bone marrow. John had a lot over the years the first being done with no form of anaesthetic at all! They are hideous. Thank you for the information though which I will pass on to my colleague. I think you’re right about enjoying life as much as possible. Myeloma hangs over you like a sword of Damocles and John and I made sure we tried to have lots of fun. We spent far too much money but I don’t regret it one bit as I have wonderful memories and we had terrific fun (one or two scary moments not withstanding ! 😆) xx
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