When your week doesn’t get any better!

Well this isn’t so much a myeloma based post as a ‘What a week!’ post. I thought I’d try and get it down as I think it’s another example of how we’ve got stronger as a family and so able to cope with most things.

So we’ve just finished possibly the worst Easter break we’ve had! It all started off with a visit to my father who is struggling with dementia. And as anyone out there will know who has family members in the same position, it isn’t an easy scenario. One minute he is happy about the decisions that we make with him, and the next he thinks we’re interfering and trying to make his life harder. I’ve been on the ‘Dementia Friends’ course which I found really useful, so I now know how I should be responding….but actually managing to be the grown up in it all is posing more of a difficulty for me, and I’m finding myself arguing with him more than ever.

I think it is partially because that was how I grew up with him….lots of arguments and truth telling between us, and partially because of everything else that is going on in our life which means I’m pretty tired, grumpy and a little anxious at the moment!

Anyway, after some tears, shouting and frustration, with the kids and Marley (our dog) giving me lots of love and support, we sorted things out a bit. But just before I left, I had realised that dad had been sick the week before but not told anyone and it needed clearing. Not a problem. On went the gloves and it was sorted and the children and I left. I had a visit to make before we were due to go and visit old friends in High Wycombe where we used to live.

So, off we went to Wantage, down the road from my dad. I went for my appointment and left the kids in the car looking after the dog. Surprise, surprise, as all kids seem to have the knack of doing even at 14, suddenly they were both in the building for a toilet break. Ok. Well it would have been if on their way out, Rebecca hadn’t decided to try hurdling a tall iron railing fence, getting her foot caught in it and not being able to get it out! 20 minutes later, the fire engine arrived when we couldn’t remove it, she ended up high on gas and air and we had to get her to hospital! No visit to Wycombe. Luckily Nick had just flown in from Dublin as I had to drive Bex home from Oxford as the hospital wouldn’t see her for 3 hours and I couldn’t leave Sam in the car with the dog for that length of time. So West Midlands it was and Nick met us to take Sam and the dog home.

So after having arrived home just before midnight on the Tuesday, with her in a boot with a supposed broken ankle (now turns out to just be a nasty sprain), we spent the day recovering – Nick had gone to London for work. But around 5pm Sam started telling me he felt ill.

Around this time, I also got an email from my consultant saying that my figures had gone up again and that it was definitely time to admit I was out of remission and to discuss starting treatment. So a bottle of wine got opened and a couple of glasses drunk.

Bad mother who had been accusing Sam of eating too much chocolate then realised how bad she was when he projectile vomited down the toilet! Oh god. And then on the carpet! And within 20 minutes of this, I was also feeling bad – not long after I was joining him with the vomiting and we proceeded to take it in turns all night long. It turns out sickness can be quite a bonding experience (!) By the middle of the night, I was texting Nick saying he needed to get the first train back to us as I couldn’t cope (I’m not sure he’s heard me admit that before). And a good job too, as by 9am, Rebecca was also throwing up!

If you’re still with me at this stage, you’ll be pleased to hear this is pretty much where it all ends. I don’t think you could have written this. It was all so gutting as we’d planned visitors for the Thursday, Good Friday celebrations with Nicks family, and it was my Brother in Law’s 60th on the Saturday, all of which we had to miss as we were too poorly to get there. Luckily we made it down for my niece’s 21st on the Sunday although the kids still weren’t on great form!

So much for making ‘good’ memories – although there’s no doubting that we’ve definitely made memories this Easter!

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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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