Quick update

I’ve realised I never updated on what happened at our last appointment.

So my numbers went down ever so slightly…good news although unfortunately it doesn’t really change anything.

My consultant has said that he still expects me to start treatment, and probably within 2-3 months. The only thing that has changed is that NICE have now approved a drug called Daratumumab via the Cancer Drugs Fund. And that seems to make my consultant very happy!! He believes it will be much better than the Myeloma XII for me so that’s good news. I’ll still be having a transplant at the end, and would continue on Daratumumab afterwards too (assuming it continued to have the right impact)

I’ve had a couple of weeks not having to think about blood tests or results though which has been lovely. I’m back this week for the next tests though and am already getting twitchy! Stupid! But it has been nice given the knowledge it’s going to be a large part of my life moving forwards!

In the meantime, and until we start, we’re trying to do some bits to the house to make it more hospitable. All a bit of a race against the clock but hopefully we can get the main couple of bits done and that’ll help.

We still haven’t said anything to the kids about it being definite and will wait until we know. The longer they can be relaxed the better. Rebecca has just been accepted on an international experience with her Guiding unit and has just taken up her DofE so has so much on, along with GCSE’s that I don’t want her worried. And Sam is emotional like me so better to keep it back as long as possible!!

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Back on the Rollercoaster

It has definitely been yet another rollercoaster over the past couple of months! After my last results showed an increase of 2, my February results were stable…..brilliant news of course, although I can’t really explain rationally why there was a small part of me was frustrated at the lack of pattern and the fact that my head seemed incapable of keeping up with the change of direction.

So I spent the next few weeks, trying to get my head around the fact that perhaps the rise of 2 was just a blip and that, yet again, I’d told too many close friends about it, when there was nothing wrong with me. Such an attention seeker. Such a fraud.

And then last month, my bloods came back having risen by 4. And I could tell from the tone of the email, that my consultant felt that this wasn’t good news…that and the fact he asked me to come back for bloods to check if it was an anomaly or whether we are dealing with a clear relapse. So yesterday I went back to have them redone and next Thursday, Nick and I will head back to find out more. That said, I can’t wait till then so have already asked to be told the results asap….and since 11am yesterday morning have therefore been watching my phone non-stop….argh!

I’m back to reading myeloma articles and starting to look into treatment options. There’s been some great news this week about a new drug being approved by NICE for first time relapse patients like me. So, I’m imagining that I’ll be deciding between that and going on the Myeloma XII trial …the first would be ongoing treatment, whilst the second would hopefully push me into remission again….who knows, maybe for another 8 years – but would make me severely ill for a while too.

I’m a bit all over the place if I’m honest. I just want to know if I’ve got to front into treatment and a new Stem Cell Transplant, or whether we can get on with things like normal. I can’t believe I’m back here. Back thinking about funeral songs, back thinking about what I can’t do if I’m back on treatment, back wondering about my ‘Bucket List’. It’s totally crap if I’m honest. I thought I’d got past all that negative thinking when I realised that I’d done so well with 8 years in remission. But now I’m back here, I realise it never fully goes away. The fears, the paranoia, the sadness.

Somehow I will get back to being my positive self. I think I need to get an element of control back to myself – that’s the worst bit about myeloma…you seem to lose all control. I don’t quite how I’ll do this….I’d like to get back into fundraising but I’m not sure how healthy I’ll be to do that, or exactly what I could do. If anyone reading this has any great ideas, I’d love to hear them. It really helps me take my mind off what is happening, but I need something that isn’t too stressful or too demanding if the chemo starts.

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Happy Birthday to Me!

So tomorrow is my birthday and I’ll be 44!! Who would have guessed I’d get this far along the line – certainly not me when I was diagnosed nearly ten years ago.

And honestly I am so, so grateful to have got this far with relatively few problems or setbacks. But I can’t help but be slightly saddened this year and the pessimistic part of me (that I don’t often allow out with my myeloma!) is worrying that it could be my last healthy birthday. Totally ridiculous and without substance as I have as much chance of a good response to any treatment , as I do of anything else.

But at the same time, I’ve had 2 myeloma friends die in the past week and another, just tonight, has let people know that his body is nearing the end. I know that myeloma sometimes does a u turn in now it responds for people. Just because you’ve responded well in the past, doesn’t mean you’ll respond well in the future. It’s all a bit of pot luck!

So, I’m going to try and have a great birthday – a day out with Nick in Ludlow tomorrow (looking for old furniture for our renovated living area) and then a weekend away with my old school friends and our families. Hopefully lots of good food and good wine!

And for a few days, I’m going to try to put my insecurities behind me!!

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