Tag Archives: maintenance

Confused, Down and unsure…

So things are a bit up in the air at the moment….and anyone who knows me will know that I hate it when life is like that. I am a control freak and there is no doubt about that. I like to know what is going to happen from one week to the next. Hmmm, things couldn’t really be any more different than that nowadays and I’m struggling a bit at the moment. 

Where do I start? I suppose the feeling of slight depression began when I went to hospital a couple of weeks ago. My main readings are great! My paraprotein levels have dropped down from 2 to 1…..originally pre-transplant, they had risen to 50! So there is nothing to be concerned about there…the paraprotein basically is a good indicator of whether or not my myeloma is active, and when it starts to rise again, the consultant will begin to worry! For the first time in months, I wasn’t neutropenic either so I was feeling pretty positive (When you are neutropenic, you aren’t ill, but you are at risk of catching infections). But then came the news that my consultant didn’t want me to continue self-injecting the G-CSF injections that I’d been having to raise my white blood count and prevent neutropenia. This was partially because they’re not great for you in the long run, but also because they made me achy and fluey for 24 hours after I’d had them. But if I just stopped taking the injections, it was strongly believed that I would become neutropenic again as a result of the maintenance therapy that I’m on at the moment, a drug called Revlimid (Lenalidomide).

I’m really lucky to receive revlimid as maintenance therapy as most patients ‘off-trial’ don’t get it, but I got randomised to have it through the Myeloma XI trial that I’m on. And to me it feels very much like a life-line….like without it I might relapse…and relapsing is my worst nightmare and one that I have pretty much banished from my thoughts while everything has been ticking along nicely. So what does my consultant want to do….well she’s now reduced my revlimid to being 10mg two weeks out of four…it used to be three weeks out of four. I have to get my bloods done half way through this cycle at our local hospital, and assuming that they are fine, we carry on with that protocol. But if I’m neutropenic yet again, they will revisit my drug levels again and probably reduce the revlimid even further. Don’t get me wrong…I’m not stupid and I know that the revlimid may not be the reason that I am still in remission. However, I really don’t like the idea of changing anything that is working. So all my fingers and toes are crossed that next week when I get my bloods done, that things will look nicely positive and I can stay on revlimid as it is now.

But my drug situation isn’t the only thing that I am finding hard at the moment. Work is posing a massive challenge. I absolutely love working for the charity I’m working for. They do a brilliant job, are on an exciting journey forward and are a brilliant team of people. But I’m really struggling with the level of flexibility that the role requires and the hours that I need to put in to do the job justice. And with a charity job, especially for a charity as wonderful as this one, you really can’t do a half-hearted attempt at working. The problem for me, is that the work is making me exhausted and stressed…..and I know that stress is a bad thing for myeloma and is more likely to make me relapse. Which ironically makes me more stressed as what happens if I ignore how I feel and get ill! 

I’m talking to them as we speak so they know how I’m feeling and hopefully we’ll come up with a resolution in the next couple of weeks. But I know deep down that I can’t keep things up as they stand at the moment. Fingers crossed we can make it work…..I love working and I love working for them, but the last thing I would want, would be to be a burden to a charity that uses its fundraising for such a good cause. I don’t feel I can expect anything from them, as it takes away from the people that we fundraise for…..sort of defeats the objective!

So watch this space to see what happens moving forwards….I can’t bear the idea of being out of work again as I’ve loved the independence of working and bringing in some money to the house…we’re off to Morocco in August and who know’s if we’d have afforded that without me working. But it isn’t worth getting ill for….

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So busy, don’t have time to wipe my…….

I’ve had a gentle nudge recently about the fact that I haven’t updated my blog for so long! And they’re right….there’s no point having one if you never write in it. 

There are a couple of reasons that I haven’t updated it. The first is work, and I’ll update you on that in a moment. The second is that I’ve been struggling a little with why I write my blog, whether it is worth writing it, and whether it looks very self-indulgent. I think this has been exacerbated recently having been following a different blog which, to me, whilst very well written, seems remarkably self-centred and theatrical – I have stopped reading it due to the frustration that it caused me to feel. But it made me worry a little that people may feel the same about me and my blog and the thought of that made me positively flinch! So I’ve spent the last month or so considering whether I should continue with it. But in the last couple of days, I have reminded myself that I started this blog for me and not for anyone else – on that basis, it doesn’t really matter what anyone else thinks. Now, any of you who know me well, will know that last statement is a bit of a joke really as it always matters to me what other people think. But, what has happened this week is that I had a really lovely email from someone who got in touch with me 2 years ago and who follows my blog. They thanked me for the support it gave them and the help it provided while they went through their SCT – and it made me cry that I had managed to help even one person through writing it. To me, that is what makes it worthwhile.

So, I will continue to update it, although quite possibly it is going to get limited to the holiday period when I have a little bit time now that I’m working! Working…..how good does that feel 🙂 I am so pleased to be back using my little brain and earning some money towards holidays etc! I have just had my first full pay check and god, did it put a smile on my face. It won’t change the world, but being back at work, makes me feel like I know what I am about again and that is a great feeling. The job is hard work…..but totally worthwhile as I am 100% committed to the organisation. I just need to work out my work-life balance, and stay well at the same time, and it will be absolutely perfect! As Nick says, we are still in the early days, so it is no wonder I am exhausted at the end of the week. And perhaps I will never be quite 100% as fit as I was before I had the transplant….but I’m definitely at 95% and that feels great. But to all of my friends, here is an upfront apology if I am a tad rubbish at staying in touch – it isn’t anything personal, just me getting used to work and drugs at the same time 🙂

I’m also not sure whether I should mention this next thing….someone in the charity sector recently said that they thought it was brash to brag about achievements in fundraising etc.Image However, I am going to mention it….not purely because of my involvement but because so many of you, my friends and my family helped me to achieve it. Recently the chair of Myeloma UK asked me to meet her for lunch and she presented me with a beautiful engraved photoframe celebrating the £70,000 that we have raised over the past 3 years. And it really isn’t just me….so many people have helped me to raise that money and to spread the work about Myeloma UK and the work that they do. So whilst it is nice to be personally recognised, it really has been a massive team effort. And an especially big thank you should go to Nick, my Glitz and Glamour team (and their partners who put up with them helping me) and also my lovely 80 year old parents who have raised thousands of that total by doing fundraising with their church – it just goes to show that you are never too old (sorry mum and dad, I know you don’t think you’re old at all!)

So, what other news is there….not much really. Healthwise things are fairly stable. I seem to have a permanently low white blood count these days and I believe that this is to do with the 10mg revlimid that I take as maintenance therapy. However, the hospital is now working on a preventative basis and I receive G-CSF injections each week to try to boost my immunity and stop me from becoming chronically neutropenic. This seems to be working fairly well and stops me from being ill, although the slight downside is that it does cause me to feel fluey and achey the day after I inject. Still, it is far better to be well most of the time and at least this way, I know what is coming and can plan not to be socialising etc. I am not sure if it means that I am coming to the end of my time on revlimid….I really do hope not as it feels like my lifeline. I am sure I am wrong there and that my remission would have existed no matter what, but once you are on something like this, it is hard to think that it isn’t your miracle cure!

Finally, and because I am totally mean and want everyone else to cry like I did, I want to share a link to a podcast that I found inspirational and that really sums up how I feel about much of my life now that I have to share it with myeloma. This guy was given a terminal diagnosis so was in a worse place than me, but much of what he says rings very true…the patient guilt of having cancer etc. However, before you shut off, he is a very funny guy and the interview is uplifting and honest. Take a look at Steve Evans on the 16th May – it is available for another 19 days – I wish I could save it some way! He is pretty remarkable.http://www.bbc.co.uk/podcasts/series/dailybacon

 

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