Another Change of Direction

 

 Saturday 31 July 2021 

One week later and things have not improved. The fluey achey bones and fever symptoms lasted for 3 days but thankfully stopped then. The feeling full, nausea and swollen belly kept on getting worse. On Thursday I rang the help line and described my symptoms and they put me through to the Xray dept. “Have you ever had a drain love?” I was thinking that perhaps I had ascetis and an ultra sound scan would tell me what was going on. Luckily they could fit me in on Thursday morning. Alas and alack I did not have enough fluid to warrant a draining procedure. Whilst on the one hand I was relieved, on the other it meant there was no quick fix, I still had to waddle around with my big belly. These were the original symptoms I had endured a year ago just before my first session of chemo. Such a dispiriting idea that here I was a year on and the cancer was obviously growing once more.

My platelets had gone down to 63 once more.... aaaaah.... all the Papaya I could eat and umpteen bowls of bone broth was no match for the Gemcitabine. My CA125 which was 600 had gone up to 930. So the consultant has decided that my body cannot handle Gemcitabine, even at a lower dose (which she thought would make a difference). There has to be another plan. So now I have to wait for a face to face consultation on Tuesday and find out more about this next drug they want to try me on....Etoposide..... The one good thing is that they can give it to me in pill form. In theory once I get better I am not so constrained to so many appointments in Cardiff every week.

Tricky thing the mind, and handling expectations. I was so convinced that this drug would work and I would get well. It was a wrench to realise it was not working a week later and that my body could not handle the drug regime anyway. I always feel better when there is a plan, a marker in time when I will find things out, even if it is days away and I have to waddle around holding my belly in the meantime. A time line somehow squashes the fear of the unknown:- What is happening? Why is this happening? Is this normal in stage 4 ovarian cancer patients? Is it such a lottery which drugs work and which don't?

Here's hoping my clothes still fit me by Tuesday's meeting. I tell myself take a day at a time and don't think too far ahead.

Gemcitabine 1 Duvet Day

 

Saturday 24 July 2021

One day after treatment.... I feel like I've been run over by a bus. Last night full of aches and pains and fluey and feverish. I even put a wet cloth on my forehead at one point to lower the fever (dramatic I know!) A rain storm pounding the earth after days and days of sunshine. Even as I was writhing around in bed I was thinking yes yes go go Gemcitabine, destroy my cancer, obliterate it from my body. The strangest thoughts pop into your mind at 3am. I am totally wiped out this morning but feeling quite hopeful that I might be able to get back to a life that is not purely about managing symptoms......... so boring. I am desperate to think about something else. To plan for something to happen in the future rather than be in limbo 'waiting'.

Go Go Gemcitabine !!!

Clearing and Circling

 Tuesday 20 July 2021

The third treatment was cancelled as my platelets are not up to it. This plan does not seem to be working very well ha ha. So I chat with consultant and she suggests staying with the same drug but giving me a lower dose as in 60% and hope that my platelets will be able to recover in a week. I discovered that this is one of the side effects of Gemcitibine and happens quite often. So we chat about what can help my platelets recover and she suggested papaya. There is something in it that helps. It is not scientifically proven but she thinks it is a good idea. The draw back was that I still have to wait another week and a half before starting this treatment again as they could not fit me in before my allotted time.

This last week I have been managing my original symptoms again. The bloated stomach, feeling full, the nausea, the back ache. One night was bad enough for me to take pain killers at 2 am but then I did get to sleep. A year on and my cancer is obviously growing again. I am not as bad as I was when it was first discovered but its a sobering thought that we still have not found the one to contain it successfully. So back onto paracetamol to contain the symptoms.

I have spent some time getting rid of papers from files, clearing out the detritus of the last 14 years. How satisfying ripping up and chucking down papers through the attic hatch.

Other than that I am having special times on beaches with special friends I have not seen for a very long time as this sunny spell floats us into summer. Today I am painting my wall, some more inspirational poetry for the residents of Splott to read as they wander past.

Dod yn ôl at fy nghoed (coming back into myself)

  

Friday 25 June 2021

A year to the day since I had my first chemo back in 2020. A sobering thought! First Gemcitabine treatment. No problems going in. They only gave me 80% of the drug. It only took half an hour GREAT..... less time waiting around. Monday after treatment I am aware of huge activity happening around my torso, belly, back later on building up into to fluey achey bones feeling. Distracting myself by doing a recording of a song for someone (more on that later when its realeased officially). I dyed an old cotton scarf bright yellow and then started embroidering around the mended patches. As the days go by the side effects lessen, nausea lessens. More bingeing on tv series.

I am realising that this process is relentless. There is no 'when I finish chemo' story at the moment, not until we find a drug that works on me ha ha. Consultants don't know why the drug starts to work and then stops working. It feels like pot luck what might work and what might not. So my fate is in the lap of the Gods. Which gods might those be I hear you ask?

Friday July 2 2021

Second treatment cancelled as my platelets are not up to sufficient strength. I feel like I've just got out of a school exam and I've suddenly got a free week to do stuff without 'managing' symptoms woo hoo! T'is beautiful and sunny. I was a bit wobbly around the edges getting out of the car when I got home after having my bloods done. I was planning a walk in the woods but then thought better of it. I am coming back into myself a little more each day. Perhaps by next week I might feel normal again. Even a simple appointment can slip away and be elusive in this chemo world.

So my future has shrunk to a weekly event that may or may not happen....... Shrodinger's cat anyone?