This is going to be one of those posts where I throw a load of my thoughts on to the screen, in the hope that I can make some sense of them. So, if that’s not your thing – click away now!
As you all know, I was meant to be travelling to Russia on 16th March for HSCT (Haematopoietic Stem Cell Transplant) … hours of research, numerous discussions with family and friends and huge fundraising efforts had led to this point. Provisions were purchased, the house was disinfected, visas were obtained, plans put in place for my return, flights were booked and I was all ready to go. Then along came COVID 19 and everything changed. With just 4 days to go, my trip to Russia was cancelled and ten days after that, the UK began lockdown.
Before COVID, I was feeling incredibly positive, full of determination and confident in my decision. Four months on, I am struggling to connect to those feelings and now find the thought of doing this really frightening.
Initially, I was keen to get my treatment back on track as soon as possible, but as the full impact of the pandemic unfolded, my thoughts on this began to change. There was talk of the clinic reopening in July and this has now been put back to at least September, but I wouldn’t feel at all safe going that soon. The Russian borders remain closed and their COVID infection rate is rumoured to be high.
If things had gone ahead as planned, I would be 3 months post transplant now … past the most dangerous, low immune system, phase, hopefully starting to recover, reconnecting with friends, getting back to work and seeing my hair beginning to return. I was so ready to take this on … but now totally dread that this is all still ahead of me.
Like all of us, I have spent the last few months in lockdown and have experienced a mixture of emotions. I’m a sociable person, so have struggled without daily contact with others and with not see my friends and family. I’ve also been unwell during this time, so it’s been quite a challenge. Maybe this was a glimpse of how life might be in the first weeks and months after HSCT? Would I want to put myself through that again? Maybe I feel that way because we’re not out of it yet and I’m still missing my old life? ??♀️
Before COVID I also felt confident about keeping my house clean and sanitised and about all the extra measures needed to keep infection risk to a minimum during the early weeks and months after treatment, whilst the new immune system is developing. Now I am super anxious about germs everywhere!
In my mind, my treatment has been put back until COVID has gone and who knows when that might be?!
In the meantime, all the other worries that keep me awake at night continue to haunt me … Can I really manage to carry on working? If only I could afford to reduce my hours. Should I move house? Will my steep stairs kill me?!
These are issues I planned to think about after HSCT, but with the delay, I’m being forced to think about them now
I always feel it’s a bad idea to make important decisions while you have “stuff” going on. With the COVID pandemic, we all have stuff going on and we are likely to be in this situation for quite some time. How can I decide what to do??
I’ve been having some counselling (by telephone) over the last few weeks and through that I have realised that I’ve never really come to terms with my diagnosis and carry a lot of shame and guilt associated with it. Counselling has been really helpful and I am grateful that my employer has funded this for me. I am now back at work (from home) on a phased return, something I felt was impossible just a few weeks ago.
So dear friends, if you have any words of wisdom to help me deal with the whirring thoughts in my head , do let me know!
I don’t want anyone to be too concerned about this post full of doom, gloom and confusion … I’m feeling ok day to day and have found some real positives in lockdown (maybe I’ll write about those in a later post). I continue to be so very grateful to family and friends for all your support. I also want to apologise to loved ones I haven’t had much contact with (that includes you Melanie and Auntie Ann) … I’ve had to keep my world very small recently to cope with the madness … I promise I’ll be in touch soon xx
Stay safe everyone ❤️