A different kind of fighting.

Thursday, November 21, 2019





I wanted to write a little update....without an update! Nothing else to report medically that has (knowingly changed) more how I feel and how I’m coping. 

Honestly, these last couple of weeks I’ve been an utter mess. I can’t even tell you how much has been pounding through my head. All the options in front of me, the repercussions, the potential problems/benefits, the fact that I by no means have all the information that I need, so everything was made even more uncertain. The fact that I need to fight again, the way it feels like the year I spent in treatment was for nothing. Wondering what will happen. Being terrified of dying. On top of the usual suffering physically but now with a hefty dose of anxiety related problems; shortness of breath, dizziness, panic, feeling faint, shaking etc.
Also the feeling of bringing this horrible news down on my loved ones yet again. Knowing I’m hurting them. And as a nice top off, a fair amount of fakeness, misinformation, disappearing acts and general ignorance from certain people close to me. It has been torturous.

So I spoke to my psychologist and told him I was in desperate need of an appointment. He arranged this for me and I am so grateful he did and realise how incredibly lucky I am to get an appointment so quickly when I know many others don’t. Despite wanting to speak to him I also couldn’t think of anything worse than talking to him. I’ve noticed this generally, I don’t want to talk about cancer, yet at the same time cannot stop talking about it. I guess it’s my brain trying to sort out the mess of everything coming at it.

Anyway, we chatted for an hour, I cried. I knew before I answered the phone that he could do absolutely nothing to change my situation. He sadly doesn’t have a magic cancer expelling wand. I couldn’t see how he would help but also was drowning by myself and needed to try anything I could. 

And it did help. Not really in any way I can explain other than him helping my poor brain to separate all the strands so tangled up. When I came off the phone I felt calmer.

He explained that I couldn’t possibly make a decision at the moment as I don’t have all the information needed to make an informed decision. I have very limited options in terms of treatment. 
As I understand it: Due to my transplant, immunotherapy wouldn’t be suitable for me, I have so many other health conditions that I wouldn’t be a suitable candidate for any drug trials either. Radiotherapy I believe isn’t effective with this type of cancer (although it wasn’t discussed fully). Which leaves chemotherapy, the one I used previously, and two others. That’s it. One option would be to take it weekly for 6 months another mentioned being on continuous chemo ie, until it stops working and options run out. 
He also broached the subject that I’d been holding in and too afraid to voice; I am allowed to decide that I don’t want more treatment, whether that’s long term or short term. 

It’s not as simple as I’ve written, I still don’t know statistics for each drug combo. I have to consider side effects like sickness because again it will effect my immunosuppression and not to be crude, dead is dead whether it’s through cancer or rejection. 
During my many conversations surrounding death over the years quality of life over quantity of life has been a big feature. I have always wanted to fight with everything anyone has to keep my life no matter what. That survival drive hasn’t disappeared. I do have a problem though with the many well meaning people telling me I ‘will fight like I always do’. Firstly, why should I have to fight for something that most people take for granted? Second who are you to tell me or expect me to do that? Third, if I stop treatment it is still fighting, just in a different way.

If I am bald (which I don’t care what anyone else says, would understandably devastate me)in bed, or worse in hospital, head in a bowl unable to focus on even a tv program, is that how I should choose to spend my remaining life?  For drugs we don’t even know would work or have a ‘chance’ at working. I would hate my families abiding memory of me to be bald, deathly pale, dying after a long, painful end. Is that fighting?
Or is choosing the lesser aggressive treatments that may not work so well, but let’s face it who knows with me, but gives me happier days, able to do more than be sick or at the hospital less valid? To still be able to do things I enjoy, to be Tor. That’s what I want, I never want to lose my Tor-ness, my love of musicals, love of family, gratitude to be alive, crap tv, dark humored inherent Tor-ness. Especially not to f*****g cancer.
Our conversation let me actually consider the option of stopping treatment without me immediately addressing it as ‘giving up’. In fact it isn’t giving up, it’s knowing what kind of life I want and fighting for it in a different kind of way. 
One last thing that a friend and my mum have also said is that, it has to be my decision, and mine alone. I may choose to not discuss it or get everyone’s opinion and take a twitter poll! But when it comes down to it I need it to feel right for me, and only me.

That’s not to say I’m anywhere near making a decision yet. To make an informed decision you need to be as informed as possible. My first way to do this is to visit my team at Harefield next week to get checked over before things get busier at Marsden and discuss my thoughts with them. Then they can hopefully liaise to make sure current treatment options ar in fact good options and to rule out anything that won’t work from both hospitals points of view. I am also delivering my Christmas treat bags to inpatients on the wards. After that I have a Christmassy city break for a few days which is terrifying but also going to be really amazing. Let’s face it there’s a big chance I might not get much chance for holidays if I start on weekly chemo so I’m making the most of the opportunity.

After that I have my scan right after new year. Then appointments to discuss what has shown up. That’s the time to ask the right questions, come away and take the necessary time to plan what the best way to fight is.  

Life shouldn’t always be a struggle, it should be finding the value in the life you have. If you can’t do anything you enjoy is that living? Whatever I decide I would like to fulfill some of my dreams and pack in as many lovely experiences as I can.

To leave you with one thought. I know it isn’t easy mentally or logistically to get help for your mental health but if you are feeling down or alone or lost please please don’t dismiss talking to a professional and get the help if you can. I could see no way it would help, but it really did. Never feel that you don’t deserve that help.

Xx

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2 comments

  1. As os often - what to comment? I guess you are fed up with "You're so brave!" by now.

    Life is beyond cruel. Life is utter beauty. Enjoy the **** out of the rest of 2019. And then there will be 2020 and we are with you. Please do plan for some O2 thing in 2020.

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