It’s been a while

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.

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
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2 Responses to It’s been a while

  1. Margaret Jackson says:

    Thinking of you!! I’m feeling a bit exhausted this week as I start to choose what items to keep and what to ditch before I move into my flat.. there’s so much to do and I get exhausted very quickly, not helped by the bad shoulder which has gone on for 6 weeks or so. I’m having an MRI a week on Saturday and then the surgeon will decide what treatment he will do – probably a deep cortisone injection which everyone says will hurt like hell but that the result should be positive! Now my back is coming out in sympathy so I don’t get a good night’s sleep – a couple of hours at best before I have to move to the recliner in the lounge and then the cat decides it’s time for her breakfast at 5.30 a.m… I love her dearly but…..!!

    Don’t envy you the decision about the drugs – I am on a new drug for the rheumatoid arthritis and must have blood tests every 2 weeks to decide whether my liver is tolerating it… as I come off the steroids.

    ‘Courage mon enfant’ – just know we are all rooting for you!!

    Much love as always

    M xx

    Liked by 1 person

    • Deb Gascoyne says:

      Aw thank you Margaret. It must be hard to make that decision – I remember help you unpack when you moved in to there so I can picture all your stuff!!!
      I’m sorry you’re in so much pain and not sleeping. Lack of sleep is the worst. Hmm or maybe that’s pain. Both are pretty hard!
      Lots of love to you too and perhaps in a week or so I’ll have the strength to FaceTime you. Xxx

      Like

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