Discover #365

staying alive

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Marton-in-Cleveland, TS8 9ZEUnited Kingdom


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  • gem lee

Evading expiration

Hey, welcome back. Can't promise this blog will always b an easy read. but I can promise it will always be real.

This is weird addressing an audience you're not even sure exist lol.

Following on from the last post.So preceding the news regarding my prognosis I'd had a progress MRI scan following my biopsy, 6 weeks of radiation & chemotherapy. We were told that it looked like we had tumour growth & possibly new areas of cancer which is the exact opposite news than what we were hoping for.

Devastated is an understatement. The full A team had the wind knocked out of them.We were so shocked as physically I was doing so much better. A decision was made to stop the current treatment (it wasn't working remember ) & Try a different chemo drug. The new drug did a number on me I spent the next best part of a week hospitalised with suspected reaction to the new chemo. Horrific.

I was allowed home after lots of tests came back clear thankfully. On the Friday afternoon I was home by Sunday morning I was on the train to London with Graeme to see a neuro-oncologist for a 2 nd opinion. I was not gonna take the prognosis lying down as tired as I was I was determined to keep fighting. I don't like being told what to do never mind when to die!

Before we left for the train I was sitting on the end of my bed being violently sick . Mam was worried about me travelling but I knew I had to get there regardless.

Get there we did. Stayed in a beautiful hotel, did a bit of shopping, rode in a rickshaw......then went to see the consultant. He took a look at all my info & queried wether my new scan was indeed new growth or pseudo progression due to the radiotherapy. We are repeating the scan shortly to get better perspective .

We asked the consultant what were our options & he mentioned a trial that we'd being looking into. ONC 201specifc treatment for my very rare tumour mutation. This is the best chance for me & I'd like to thank my lovely friend Kelly O'Malley for helping us with all the research etc the woman is a saint.

Anyhow this is us to date, Look out for my next blog x

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