It’s a little bit funny, this feeling inside….

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.

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So much to be Positive about

I often tend to write on here when things aren’t going so well or there are complications with my treatment, so I thought I should take the time to write today as it’s been a week of lots of good news and I’m feeling pretty good about life 😊.

My last post covered off the fact that there was discussion about the possibility that patients like me with a blood cancer, might not be covered by the vaccines that we were getting. I decided I needed to know more than what was a ‘possibility’ and so I decided that I would pay to privately have a spike protein test, to see whether the first vaccine had given me any immunity. And the brilliant news is that it seems like it has. In fact, not only has it given me some immunity, it seems to have given me a pretty good level of it. I’m waiting for that to be confirmed by an NHS test that I’ve had since, but it was great to see the results. They were so good that we had to double check them as we thought there was a mistake at first! Not only that, but since then, I have also had my second vaccine so I should be well protected now, for a while at least. The next thing I assume is for them to work out how long these vaccines last for, but for the time being, it has meant that I feel a lot safer than I did two weeks ago.

What is great too, is that most of my family have now had their vaccines now too….certainly my dad, all my siblings, my inlaws etc have had at least their first vaccine as have a number of local friends. Some have even had two now. I know that we still have to be super careful and follow the rules, but it makes me feel that for the first time in 13 months, I can actually follow the rules that everyone else is following, rather than feeling that we have to create safer rules that isolate us all from friends and family.

The next lovely news, is that because of all of these vaccinations, and the change in government rules, I can hopefully see my dad very very soon. I haven’t seen him since last summer, and with his dementia, it has really upset us all as a family that he’s been on his own. But now, with two members being allowed to visit, and others being allowed outdoor visits, it looks like from next week, I can go and see him, and hold his hand. I know he won’t know who I am, but I am convinced that touch and love will help him feel more secure and that it will make him happier even if he isn’t able to show it. One of my siblings saw him last week and took a picture, and it was just lovely to see him looking like our old dad. The hard thing with dementia is that we had even had to stop zoom calls as they distressed him too much so we had all felt very distant from him.

And my final good news that made me smile today when my consultant emailed me (he never stops working bless him!), is that my paraprotein has yoyo’d again and reduced to 5.1 from over 8! We know that it doesn’t mean much, but I will take all the good news that I can, and be happy while I can be. Hopefully it will continue to stay stable and all will stay good.

What else is there to say? I’ve calmed my London to Paris training a little as I think I had forgotten that it was only 6 months ago, I was laid up crucially ill in hospital after my Stem Cell Transplant. I did my first 40 miler on the bike, and two days later did a 17 miler. But then ended up on the sofa for the next five days, absolutely in bits! So this week, I’ve limited it to 30 miles and I’m going to try to stick at a couple of those and a 20 miler each week…for a couple more weeks anyway. I will need to build it up, but I’ve accepted that I need to do it sensibly as there is no point in doing it if it makes me ill. Even I have to admit that fundraising isn’t worth that! But I’m pretty pleased that I’m doing 70 miles a week at the moment – not bad, even if it is on an e-bike (which I LOVE!)

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Covid Trial Results

So today there’s been some news on the BBC about Covid trials for the Pfizer vaccine, initially suggesting that it isn’t as effective in cancer patients, and specifically in blood cancer patients. It particularly suggests that the long gap between first and second vaccines puts those of us with blood cancer at a greater risk as its protection reduced from 13% at 3 weeks (rubbish!) to only 8% at 5 weeks (even more rubbish!). It was effectively saying, that the fact that I’ve already been 6 weeks since my first vaccine, could result in no greater protection from my second jab. And that I may only have an 8% chance of protection.

Now, I’m very clear that this is only a very small study, meaning that not only were there not many people involved, there weren’t that many with cancer, and even less with blood cancer. I’m also clear that this study was regarding Pfizer and not the Astra-Zenica vaccine which I had. However, it is a worrying outcome that leaves many of us blood cancer patients concerned about how the future looks.

I have already been in touch with my GP, local covid centre and consultant to try and get fast tracked for that second dose, but in reality, that could be a false use of time and energy if it doesn’t improve the rate of protection. What blood cancer patients really need now, post first vaccines, is access to the antibody tests by someone that they can trust to give them the results. I need to know whether I am lucky enough to be in that 8% and therefore more able to get out into the world for the first time in 12 months, or whether I’m in the 92% that isn’t protected.

But it doesn’t really stop there does it? If I’m in the 8%, what is the plan. There is no way that we can realistically continue to shield me from life, especially with 2 children at secondary school, in the middle of their GCSE’s. They have given up huge amounts in the past 12 months, without complaint (most of the time 😳). They have missed out on seeing friends, going to school clubs and socialising, when their peers have been able to. They have missed out on us having people over, or socialising in the ways others have, because we’ve had to be super careful about everything. But there was always an end point. And we had always hoped that when everyone else was safe, we would be too.

There is no way, whatever the outcome of these results, that we can/ will continue to shield like we have. As I say, we wouldn’t feel it was fair or healthy for our children to take that view – they need to be able to be teenagers. They need their lives back. And if I’m honest, it’s not just them. I can’t keep doing this for much longer either. I love seeing people and I miss it so much. I made the decision near the beginning that I needed to find a way to deal with that so that I wasn’t miserable (and I hope I was successful most of the time), but I honestly think it would have a massive effect on my mental health if I couldn’t get out there this summer while everyone else was returning to some form of normality. Just imagine how you would feel if you were only able live in your home and garden (and we’re lucky to have a garden) while others were socialising, going to the pub, meeting around you for UK holidays and get togethers. It’s been hard enough when it’s been for short times in and around lockdowns, but it’ll be even harder if and when that lockdown is over.

I want to go on our short break that we have booked in August. I want to do my London to Paris bike ride in September. I want to be able to eat in a pub garden (nope, I don’t want to go inside yet!). I want to be able to visit a garden centre without worrying. I want to pop to the shops without having to ask someone else. And to be honest, I need to do most of those things too, if I’m going to stay sane.

But it goes further than me and the kids. What do we do about Nick’s work? He will be expected back in London in the next few months which means the train & tube and the high chance of transmission there. If I’m not protected, do we just take that chance? In which case, there’s no point in being careful about anything, and we might as well have not shielded for the last year. Or does he have to reconsider a role that he has to travel for, albeit it only 2 days a week. He so deserves the promotion that he has just received and it would be terrible to have to reconsider that. And I don’t think I’d let him.

So what is the answer? I really don’t know. I think that antibody tests being available (even if they’re charged at cost), is the starting point. But if it’s true what they say about the vaccine not being effective for those of us with blood cancer, then we need one to be developed, and fast. Because my life is as important as anyone else’s. Because I do have a role to play in society. Because I do contribute.

I’m sick of the people who say we aren’t as valuable. I look after my children making it possible for my husband to work in the job he does (and contribute to taxes), I work myself (I will be looking to return to community fundraising as soon as my L2P is over), I fundraise large amounts for charity, and I contribute to local groups like my netball club. But even if I didn’t, my life is important I hope, not just to me, but to my family and friends.

I would also call out to everyone I know to have the vaccine if you can. While people like me aren’t safe despite our best intentions, if everyone around us has the vaccine, the chances of transmission become lower and lower. I know you might worry about the side effects, or you might worry about drugs in your body. I know you might not trust that it’s a necessary process. But please, if any of this has made you think, I’d ask you to reconsider your decision.

I’ve ranted far more than I planned to in this post. Perhaps unsurprisingly it means more to me than I first thought. I hope desperately that we’ll get some clarification about this study very soon and that it will allow us a little bit more hope. Today, it feels to me like the rug has been pulled from under my feet at the last moment.

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