A Few More Weeks Down the Line

Hi All,

I’m home a few weeks now so decided I would give a quick update. I’m still attending the hospital each second day really but have started to get weekends off which makes such a difference and they are now hoping in the next few weeks to have me in less and less.

I can’t get over how tired I feel all the time. I tend to be ok in the morning but for the last week I’ve slept from the late afternoon to night-time every day. The doctors said it’s to be expected especially after the full body radiation (TBI). I had that in St Lukes the morning of the transplant and it went everywhere on my body including my brain. I’m also coming off a huge amount of steroids so that can make you very tired. I just can’t believe how doing such little activity results in me having to sleep for ages after. And it’s not a normal sleepy tiredness it’s like my body physically can’t move because it has no energy whatsoever.

Being home is still a bit weird sometimes. This is the longest I’ve been at home now since I was diagnosed, I only got a few days between cycles. I’ve been petrified I’m going to have to go back in but I need to cop on a bit and just take each day as it comes because I was just upsetting myself thinking of everything. I don’t even know when things will begin to sink in. I think the whole family are in shock still. I sat down with my mom and we spoke about the day they told us and I’ve no Idea how I coped. All I remember is my Aunty Dee saying I could do it because I had to and there was no other choice and that’s something that stayed with me and make me stay strong for as long as I could. I should also mention Dee was in with me every second day throughout this whole thing and she was official room decorator including outside my window which she decorated with windmills!

I’m hoping my strength will continue to grow as the weeks go on and I’ll be able to do more but I can’t be around crowds so that leaves a lot out especially coming up to Christmas but even just visiting people or having people come to visit so long as they haven’t been ill would be great.

Well that’s about it other than I think about my hair a lot, I miss it so much and can’t wait for it to grow. It’s so difficult trying to look somewhat normal and I just don’t feel like myself.

Thanks again for all your support,
Love
Mairéad