Me and my Buttercup brain tumour
I’ve let this week play out without any expectations apart from giving myself permission and space to feel anything and everything. What happened was an honouring to all parts. The first day honouring the fight and exhaustion of 5 long years. Another day I woke up needing to grieve for but after an intense emotional […]
It’s not quite here yet, one week to go, but after years of envisaging, daring to dream of this momentous date, it actually feels like it’s suddenly creeped up and it’s far heavier than the pure celebrations I imagined it would be. 5 years ago. How everything can change in a split second. EVERYTHING. One […]
Fear. Of dying. Of losing more functions Of not knowing how long I’ll be unable to do anything myself. Is everything set up in case someone else needs to do it for me? My will, passwords, authorisations, funeral wishes, letters, videos, dear Lolita… Ensuring there’s time to make a few last memories, have some joy […]
On the face of it yesterday (Thursday 17th Aug) should have been upsetting. I was told after a further review that unlike previously thought, my tumour has mildly progressed since my last scan 6 weeks ago. It’s obviously not what I was hoping to hear but given the increase in my symptoms I wasn’t surprised […]
I got some preliminary scan results yesterday. It hasn’t been reviewed by all the experts yet but my oncologist doesn’t think from a first look that there’s been any progression since the scan 6 weeks ago. This is obviously hopeful but not clear cut. I have to wait for the complete review and report and […]
How is it just one month? I can’t even say it without a deep sense of mourning for a time when I wasn’t dealing with it all. Just one month ago. To reflect on what’s happened in that time is both tragic and beautiful. Life has once again changed dramatically, more than any other point […]
CORDELIA EDIT 4v3 So here we are. Again. Facing the heart-breaking reality that treatment options within standard of care, in particular for brain cancer, are exceedingly limited. I’m currently limited to palliative chemo to try and hold back any further growth and been told point blank by NHS doctors, there’s no point in even exploring […]
That’s all I can do at the moment. Keep believing. For me, for Loli, for all of us. In the week since I got the news that my cancer is back with a new highly aggressive inoperable tumour that was non-existence only 3 mths ago, I’ve been ‘living’ in a half world of unknowns, terror, […]
It’s official. On my 41st birthday I can confirm that the personalised immunotherapy vaccine I started in Germany back in 2019 did indeed work in combination with the low dose chemo to completely eliminate the pesky new tumour that appeared in September last year. The bloodwork investigations I went through in March revealed that despite […]
It’s gone. Again. It might say something about everything else I’m dealing with to understand why it’s taken me this long to put it out there but on 1st February I found out that the new tumour which appeared on my scans back in September has now completely disappeared. It’s absolutely extraordinary. Just 4 cycles […]