Day 22 – A Dose of Reality

Ok, so I’m not wonderwoman after all.

Yesterday was day 6 at home, day 21 after the transplant, and I thought I could do anything. So out went the washing (twice) and I decided that while my sister took the kids to the farm, that I would walk into our village, buy some cards, and get her to pick me up on her way home. All good. Apart from I got into the village and felt pretty ropey. It was only a 10 minute slow walk in, so I felt pretty pathetic. Anyway, I sat down to wait for her but felt worse as I did so and as all normal people would do, decided to walk back instead of waiting. Bad mistake. I was washed out, and rather than being able to go and watch Sam ride his bike (something he has learnt to do while I’ve been in hospital!), I had to go to bed 😦 A lesson well learnt.

It didn’t help that Nick and I then had to drive down to one of my other sisters in Surrey as I had a hospital appointment today and we thought two journeys in one day could be too much. Anyway, we got down there ok, only for me to realise that I’d left my sleeping tablets behind… gutting. So it was a really bad nights sleep too before going into the hospital today for my ‘week out’ check. We turned up at 10.30 as the appointment said, but had to wait till 11.30 before I actually got to give my blood (a fiasco in itself with them unable to get a vein the first time!) which meant that it was nearly 12.30 before we got to see the doctor – they have to wait for the results of the bloods to get back. But the appointment itself was the one thing today that was good. He was really pleased with my progress in the past week, and said that all of my figures had gone up to where they would hope they would be. I am now allowed out so long as it isn’t busy places (hmmm, didn’t tell him about yesterdays brief visit out!) and as long as people aren’t ill. Nice to hear even if my energy levels today prohibit any ideas of going out anywhere!!!

He was also really keen to reiterate that it could take 1-3 months to get up to about a 75 – 80% energy level, and anywhere up to a year to get back to 100%. That was tough to hear. I know people keep saying to give myself lots of time, but there’s something different hearing it from a doctor….and hearing that it could be 3 months seems impossible with 2 young kids – there’s only so many favours you can ask from friends. And him telling me not to overdo it just made me so sad as I don’t know how to get that bit right. It’s just not me at all. But I AM trying to be sensible and yesterday was a good learning curve for me….tomorrow will be  a day of nothing.

Anyway, today is my last evening with my lovely sister Chris staying with us. I have said it before, but I’ll say it again, I cannot believe how we could have managed this last few weeks without her. Her energy levels with the kids has been unbelievable – they’ve been swimming, to the farm, to the park nearly every day, to see friends, to clubs, made biscuits, read stories, played games and done so so much with her. I can’t imagine many people they would have been so happy with, and more than that, with whom they would have remained so well grounded. I was worried they would get spoilt with me away, and while they have been in terms of what they have done, they are so the same as when I left if a little sadder and aware of my illness. And them being so happy is totally down to how Chris (and Nick) have managed with them in my absence, and even while I have been there. So Chris, if you read this, you are an absolute star and I love you and thank you to pieces. I will miss you so much when you return to Beijing, but hope we can have some quality time in November when you come back. Thank you, thank you, thank you.

In terms of the kids being sad, it is becoming apparent that they are very aware of me being poorly – I suppose the reality has kicked in now that I am home and they see me lying down all the time, and not doing all the stuff I used to do with them/ for them. Rebecca said to me today that she wished that I wasn’t feeling poorly and that she wished I had never had to be poorly in the beginning…..funny how kids just say what we all think isn’t it. It is so sad to think our children will grow up with cancer being a word that is a reality for them, and not just a word that affects everyone else. I pray so much that this transplant will give me a good number of years before I relapse….it is so not fair for young kids to have to go through this and to have to worry about their parents at such a young age. I can’t begin to imagine how I will feel if I relapse sooner rather than later….anything less than 2 years and I am sure I will feel well and truly cheated in life. I have so much I want to do with the kids, so much I want to see them achieve and so much I hope that the four of us will share together. I don’t think thoughout this illness, that I have really felt it was unfair to me….more to the kids and to Nick…..I suppose it is the unfairness for my family that I find the hardest to come to terms with. I don’t think like that often…no point….but sometimes it does cross my mind…..


About Deb Gascoyne

I am wife of one, mother of two 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 is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
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2 Responses to Day 22 – A Dose of Reality

  1. feresaknit says:

    I occasionally feel the need to apologise to Bernard – like last Friday. I mean you know it’s not your fault but somehow you sometimes feel responsible for how it affects family/friends.

    After my SCT I would feel fine (well fine-ish), fine, fine, need to sleep NOW but I think you found that out. ;D


  2. Scott Haigh says:

    If I could say anything it would be…..don’t even think relapse, think remission and stay there.

    I’m on about day 70, I’m 43 yrs old and it took a good two or three weeks of being at home before I started to feel stronger. Really, take it easy, do use all those people that offer help, try not to feel guilty and in good time you really will be up and about.


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