So I haven’t written for a little while and that’s for good and less good reasons.
I had a rotten time after my last post and spent 3 days not really even getting out of bed and feeling rotten with nausea, vomiting and diarrhoea..oh and exhaustion of course. So much for one day good, one day bad. I found it particularly hard because it was our daughters 16th birthday on the Sunday and I managed to watch her open our presents but nothing else. Admittedly I’d never have done a lot more due to keeping our distance, but I’d have liked to engage with her a little more. Luckily she’s mature beyond her years and didn’t mind…helped by the fact she got a tv in her room and so was quite happy to test that out!!
So that was the bad, but luckily since Monday it’s been a bit more positive! I’m a little exhausted this afternoon but the last few days have seen me go for walks around the block (without Marley!), have cuddles (with Marley), spend a bit of time in my study downstairs, and eat reasonably well. I still have the nausea etc but it’s not quite so bad thank goodness and the exhaustion hasn’t been so intense.
Tomorrow we’ll be speaking with my consultant again about how I’m doing. I’ve already seen most of my blood results and to an untrained eye they look ok to me, perhaps with my neutrophils dropping slightly more than would be ideal. But I don’t think they’ll be worried as they’re borderline. We already know that he wants us to continue to be careful in terms of shielding but it’ll be interesting to see what he means by that in terms of my contact with the kids and nick. At the moment they don’t come within 2 metres of me without wearing a mask, and there’s no physical contact between me and the children. It’s hard. Even with nick I only get a cuddle every few days and that is always masked! I miss them and have to use Marley as my surrogate….not quite the same hugging a dog! (Nick’ll be pleased to hear that 😂).
We think that the consultant wants us to shield within the house until Christmas….but are hoping that he will say that a bit of communal time is ok. Just to be able to eat with the family would be nice now that I have a bit more energy. (Although I think they’d rather I stayed in my room as I’ve already started on the kids about revision for mocks etc!! Nick says you can tell I feel a bit better)
The other thing on my mind at the moment is that I’m due back on my daratumumab treatment in just under 4 weeks. If I don’t have it within that time I can’t go back to it as a maintenance therapy as it would have been too long since the last treatment and so the Cancer Drug Fund would refuse to finance it as they are doing at the moment. I’m really not sure if I want to have it though. I don’t want anything to slow my recovery down or make me feel more rotten. At this moment in time I’m not sure I ever want any more treatment – I just feel so exhausted from it all. I’m so relieved that a 3rd transplant isn’t even an option. I’m just thinking that perhaps it’s about quality of life rather than quantity. Nick thinks I’ll feel differently if I’m still doing well in a year and maybe he’s right. I wish I didn’t have to make the decision about dara so soon – it’s probably a conversation for tomorrow’s meeting…maybe the Prof can tell me how other people have handled it post transplant.
Right, that’s me done for today.