Cost, worth and climbing?!

Sunday, August 11, 2019





So I thought my last post was the end of that chapter but sadly it wasn’t. I’ll sum it up as quickly as possible but if you read my last post you’ll know that I ended in a pretty bad headspace, was at the end of cancer checks without specific ‘clear results’ but without having actually found a definite tumour or problem either. I was having a final CT scan purely to check on a piece of bowel. However after having many reassurances that the scan was fine, it turned out that unfortunately the lymph nodes in my stomach (where my original tumour was) have enlarged since the previous scan. It could be a sign of relapse and the whole team had a multi disciplinary meeting to discus if chemo would need to be restarted. It was decided that there wasn’t enough evidence to declare it a relapse but that I would be checked again in September, a watch and wait to see if there’s a change, eg visible tumour, lymph nodes getting bigger or shrinking, blood markers elevating further.

In all honesty it’s been difficult but I did really need a few weeks break. The constant uncertainty and fear, as well as the physical toll of the frequent visits to the hospital meant that physically and mentally I couldn’t sustain it. I had an appointment at Harefield and my consultant of 8 years was really concerned for both mum and myself saying she’d never seen us look so broken. I’ve been having sessions with my psychologist who had encouraged me to let the hospitals know how I was feeling and to fight for a bit more support. I wrote a letter to my consultants requesting that appointments be justified and if there was any potential for phone consultations in between necessary visits which made a tangible difference and also gave me a feeling of power when I felt I’d lost any say in my own life. My Transplant consultant adjusted my anti depressants, scheduled more frequent psych sessions for me (on the phone) and was genuinely caring and compassionate. Just knowing that everything I felt was valid made a huge difference. 

 So I’ve had a few weeks with more support and less hospitals. I am still in a bit of a mess but getting there. I’ve been having bouts of bad stomach pain, general pain, upset stomachs and fatigue which as you can imagine doesn’t do a lot for feeling like you’re having a medical break or a great atmosphere for healing. I’ve made some difficult decisions that were for the best even if they weren’t what I wanted. I have stepped down from my post as a tissue donation ambassador, which I was sad to leave but weren’t able to give it my attention and energy that I wanted. I also decided I couldn’t attend my best friends wedding to be her bridesmaid. She was absolutely amazing about it but I was so gutted. The wedding was in Scotland and what with the travel there and back, the all day activity of the wedding day and the fact that I would be suffering a lot from the exertion and mum would be left to sort me out in a foreign city, it was just impossible.

It is still incredibly hard, one day last week I had such a happy day a few days later I couldn’t stop crying and was so desperately unhappy that I couldn’t bear waking up to feel the same way the next day. I am trying though. Despite the wedding and ambassador roles having to be given up, I knew it was for the first time, me thinking what was best for me rather than pushing through and not enjoying it plus being even iller for an indeterminate time. Cost and worth is something that I’m having to consider more and more but I feel I am making some progress however hard and slow. 




I’m also trying to do more things that make me happy. It’s hard to remember sometimes for me and health professionals that life and living are different things. Living is being psychically alive, but living is experiencing life in a way that makes you happy and meaningful. It can’t be all one or the other. I’ve been able to take on some cake orders which while it isn’t my dream job, is nice to feel purposeful and be creative. I’m working to declutter and make my environment nicer to be in, and I have had a few days out or with friends, carefully planned where I feel for want of a better phrase ‘like a real boy’ ( Disney’s Pinocchio was a family favourite and we used to joke that one day I’d be a real boy, obviously girl but you know what I mean! Where I’d go out and live and eat properly and not be constantly sick).






I have also done something a bit stupid or brave or potentially both! Again, judging on what I thought would be an accomplishment without being absolutely killer, I am booked to climb the O2 arena. I went past it on the train yesterday and it’s bigger than I remember..... It will be a huge challenge and the payback will be a bitch BUT cost and worth. I want to feel like I’m doing something meaningful and short term this is. I already have a massage booked for the following day! 
I have set up a fundraising page. I have had so much support in the past that I genuinely don’t want people to feel pressure to donate, I’ve made it for those who can and however small or big the donation it will help two amazing charities, Harefield Hospital and The Royal Marsden Cancer Charity, fittingly the people who allowed me to still be here to attempt this. Thank you to anyone able to donate.  https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=TorTremlett&pageUrl=3

I’m hoping to write some more blogs, hopefully a little more generally topic wise, chronic illness and the ways it effects me but also others. If there’s anything you’d like to know about please let me know. I’ll also be updating you on the success of not of the climb. I’ll be honest I’m only doing it for the photo at the top! 


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