So Monday is D-Day as we had expected.
Today was the day that I finally got the details of how my treatment was going to look moving on. I’m not sure I 100% believe them as it keeps changing, but hopefully I now know exactly what will happen as I go into the QE in Birmingham on Monday.
It felt a bit strange today when I went in. It still all feels terribly unreal which is so bizarre considering we have been expecting this since November, and talking about it as a reality since February! I think that it is because I am so well in most ways….even the nurse who did my pre-treatment bloods/assessment today said that I was probably fitter and healthier than her! If it wasn’t for my bad back, I wouldn’t have a clue that I had myeloma.
So that was the first thing that I covered with my consultant. Apparently my myeloma is in my pelvis, ribs, spine and breast bone….but potentially no worse than it was last time, it’s just been measured in a different way (a PET-CT scan rather than a bone marrow biopsy). The pain in my shoulders and armpits doesn’t seem to be myeloma related, and luckily, he confirmed the scan would have shown up any other cancers – I’d been panicking that it might be breast related. He seems to think that the discomfort is more about frozen shoulders!
He doesn’t know why I’m experiencing pain in my back this time, but I think it’s fair to say that is likely to be due to the myeloma ‘mutating’ this time round. That’s the bit that worries me. The feeling that if my myeloma has changed, will my treatment work as well as last time. Or will I follow the route of others, where it doesn’t work and suddenly they’re thrown into 3rd and 4th line treatment.
I was writing to a ‘myeloma friend’ today though and it made me realise that what I need to do this time is to make sure that I don’t spend time worrying about the ‘what if’s’. I did that so much back when I was diagnosed and whilst I understand it was part of the process of dealing with it, I look back and think how much time I wasted being sad about stuff. Sad about whether I’d see the kids get to secondary school (they’ll both be doing GCSE’s in September!), sad about whether Nick and I would grow old together, sad about the things we’d all miss out on. All of which have been irrelevant for 10 years! So, this time, I’m trying really hard to stay positive and not get sucked into that way of thinking – no funeral plans at the moment!
The good news from the appointment, apart from the fact I only have one very small lesion, is that I’ll also only have to go in once a week for the day, and not twice a week like we thought. That is great news as it means that we can work around that with the kids, and might have time to try and get away somewhere in the UK over the summer. I think having time, just the four of us, will be so important to us keeping our sanity, but also to us keeping the communication really open with the kids.
So, in the spirit of not panicking about Monday, this weekend will be looking at decorating the toilet (!), doing some gardening (if the rain ever stops) and spending time the four of us.