Confession

Thursday 24 June 2021 

YES  the bad news knocked me for six.  This time it took me about a week to come out of my doldrums and get on top of things again. Outwardly nobody would be able to see but I had this feeling of doom and gloom and a black cloud hanging over me with an undertow of 'what's the point of anything'. I resorted to watching endless episodes of Silent Witness and reading a book from cover to cover in a day, anything so I did not have to face up to reality. Distraction distraction distraction. The thing is...... the news was not new. I knew this was the process right from my first diagnosis a year ago. They have a number of drugs to try and if one does not work they move onto the next one.  It was more devastating because initially it seemed to be working and I made all these plans which just cruelly evaporated into thin air.

In the process of coming out of my well of self pity I did remember how loved and supported I feel on this journey.  How many extraordinary wonderful creative people I know and have known and worked with in my life. It has been a rich tapestry of experiences. If I don't have that much time left then I cherish and celebrate my life so far and all who I have come across not forgetting the myriads of NHS workers who have guided me through a year of treatments and will be there for this next bit.

Doing Stuff

 

Enjoying a new hairstyle and lip synching to songs recorded for The Voice Project Film. Fabulous photo by Michal Iwanowski. I'm really looking forward to seeing the finished film.

Organising, video editing and recording a soundtrack for the Red Rebel Brigade action in Porthcawl as part of a nation wide Extinction Rebellion demonstration leading up to the June G7 Conference in Cornwall

https://vimeo.com/559689467        the soundtrack alone is available on my bandcamp page 

https://sianedjones.bandcamp.com/track/red-rebel-brigade-porthcawl-2021

The Pearl of Pearl Street grafiti wall visits Aberystwyth in Oriel Lockdown

https://mailchi.mp/1f23489e6c18/oriel-lockdown-aberystwyth-arts-centre

BAD NEWS

 Tuesday 15 June 2021 A bit of a blow Knock me sideways K E R P O W ! ! !

OK so last month everything was going so well. My CA125 was coming down from 400 to 134 NICE ! indicating that the cancer was under control. This month IT'S NOT WORKING !!!

My CA125 has started to go up again and it is at 254.....not good. The reality is that my white blood cells as in neutrophils are 1.1 and they need to be a bit more over 1 to go ahead with treatment. There is what the doctors call a progression of cancer in my liver from 1.5 cm to 2.1 a 6 millimeter increase in size and also its growing in my spleen too but they did not have specific measurements. There is a new cancer on my peritoneal. The good news is that the original site of the cancer remains 'unchanged', is stable inside my pelvis including the ovaries and fallopian tubes.

So this Caelyx drug did work for a while and stabalised the cancer and sent my CA125 downwards but then this last month it has started to grow again. I was ever the optimist and was looking forward to planning my next 3 months of work on a treatment I knew my body could handle pretty well without too many horrible side effects. Now of course it is like I have to start again with a new treatment and I don't know how I am going to react to it. Start Again.....Into the Unknown.....

I have agreed to have a new drug called Gemcitabine. I have it once a week for 3 weeks then I have a week off then start the cycle again for 3 cycles then they will do another scan and see if this drug is working. It takes about an hour for the drug to go through the cannula.

Right I'm off to research Gemcitabine and see what nasties I have in store. Apart from the normal fatigue and nausea with reduced blood counts the only side effect that was mentioned was a kind of fluey achey pains kind of thing.