New Colour Scheme

 Monday 26 October 2020

A stray few days with no energy since last Wednesday but amusing myself with drawing. A new colour for my chemo container Purple no less!  Things to distract and keep me entertained.  Here are my offerings for you.

 

Bruiser

Thursday 22 October 2020

A side effect of all the various drugs I am putting into my body is that I bruise very easily. At the moment I have a bruise on each hand. One from the Avastin injection I had last Friday (left hand )  and one from the chemotherapy I had on Wednesday (right hand). People might wonder what on earth I have been doing? Perhaps gardening in a strange way? Here's a little movie to mark the moment.

https://vimeo.com/471085429

Good News and Bizarre Dreams

 Wednesday 14 October 2020

Since I last wrote I have been feeling better and better. My breathlessness has got so much less and I can go for walks lasting an hour or so. Feeling my strength coming back in my limbs which have been a bit wobbly all in all. All the tingly fingers, the nausea, the heart doing back flips, the weird achy pains have all gone. I am the closest to 'normal' I have been since before this cancer got me. Woop woop !

I had a conversation with the Thrombosis clinic consultant this morning and he said he was very pleased with my bloods. They are looking just like they want them to look. I felt extremely pleased with myself though I haven't exactly done anything. A bit like a child being told well done at school. Ha ha. I have been on the pills for nearly a month now and have not had any nasty side effects. I have managed to remember to take them twice a day. He will have another conversation with me in February when my 6 months is up. He might stop them then or he might put me on a lower dose for some more time. Time will tell. Elusive time stretching out in a formless way.

I had a conversation with the specialist nurse about my bloods and she said my CA125 level was down to 18 which is classed as 'normal'. Anything at or below 36 is classed as normal. This means my cancer is responding well to the treatment. The tricky thing is that my bone marrow is not recovering fast enough for me to have chemo treatment on Friday. We have made a plan for me to have just the maintenance drug on Friday and to have 2 sorts of chemo on the following Wednesday hoping that my bloods will be up to it. It is my last chemo treatment so they would like to give me the full cocktail but perhaps a lower dose. After that I have plenty of time for my bone marrow to recover.

I have had quite a celebratory time with people socially distancing in my yard with a fire pit to keep us warm and a Gazebo to shelter us from the rain. Delicious chocolate birthday cake cooked by my son for my dear friend and home made croissants brought to my yard and washed down with coffee. All set up and prepared for out door encounters and then Cardiff goes into local lockdown Arrrhhhh!

I've also been prancing in my basement with my medieval fidel making a video for Joglaresa with a bright red wig on all for the delights of Brighton Early Music Festival. Can't wait to see how the lock down edits turn out.

The real question is...... Do I really want to be 'normal'

Bizarre Dreams ! Chemo Dreams?

All performers will be familiar with our various versions of anxiety dreams. For me it is just before a new show opens whether it be a musical gig or a theatre show. These dreams re-surface with the same themes. For any one who has watched the Spinal Tap film you'll know the scenarios of getting lost backstage in a big venue and not being able to find your way to the stage. Other stories are.... oooh I've forgotten how to play the violin, I can't seem to get it out of its case, I am centre stage and I've forgotten the words, I'm in an opera and my voice is definately not operatic, I've forgotten my lines and I'm naked. The only way off stage is to move a mound of really noisy metal chairs all piled up on top of each other, which I try to do whilst a scene carries on on the other side of the stage, I'm on my way to a sound check but I get lost on route and find myself in a chilled out party. I can't seem to find the end of my jack to jack lead and I'm just about to play some music.

Last night in my dream I was supposed to be doing some gymnastics for a friend's film. I had to cartwheel into shot then do a back flip and then land gracefully in a certain position. Anyone who knows me will know that this is an impossible thing for me to do. In fact I've never been a graceful cart wheeler and most definately never done a back flip in my life! As I started my run into shot everything went horribly wrong and into slow motion so my miserable attempts were even worse because time seemed to slow down and I was thinking 'I should never have agreed to do this. Why on earth did they ask me, I'm a musician not a gymnast?' You know that sinking feeling when you want the ground to swallow you up Ahhhhhhhh.

Arc of the Sky

 

A project involving many many voices practising for a live performance suddenly had to shift into another form. The Voice Project have created an extraordinary piece of work during lock down. It is absolutely beautiful and moving and uplifting and joyous and poignant and made me cry and funny (my Larky sqwawks) and serene and stunning. I feel privileged to have been asked to be part of this when the whole world was shape shifting into the unknown.  Enjoy !  https://www.youtube.com/watch?v=Q0uQagXZlMA

 

 

 

 

Chemotherapy Session 5 Ba Boom Ba Boom Ba Boom Ba Ticky Boom

 

Friday 25 September 2020

Chemotherapy Session 5  Ba Boom Ba Boom Ba Boom Ba Ticky Boom

My body is not playing ball. My bloods last Monday were not good enough to withstand a full chemo session. I had another bloods taken in Wednesday morning just in case I made a miraculous recovery. Alas still not quite up to scratch. Then the consultant came up with the brilliant idea of just giving me the 2 drugs that don't demand my bloods to be 100 percent. The Bevacizumab (the maintenance one) and the Carboplatin that takes 30 minutes to go through.

The nurses were a bit concerned because last time I had the maintenance one I had a bit of a memory lapse. We discussed that the memory lapse had happened once before after I had had blood taken. I became light headed and forgot some words. Both times I recovered after a minute or so.

Then there was a chat about my veins ha ha. The first time the nurse had said “Oh what lovely veins”. I brought their attention to a vein in my left arm that was a bit tight. Even though it was much better now it was not quite normal. They said that there is sometimes a case of Phlebitis (an inflamation or damage to walls of the vein) after chemo has passed through it. This is what I had in my left arm. We chose to go with the right arm. After a while of solution going through they noticed a little lump forming just after the needle. They did not like that vein any more and chose another one. Who would have thought my veins could be so fickle?

All set to go. All was well till about half way through I had a bit of a hot flush and my heart started beating faster. I left it for a while to see if it would calm down but in the end I told them my heart was racing. They got the blood pressure machine and temperature gun and then did an ECG on me. All was OK BUT they could tell my heart rhythm was a bit erratic. Calming down but then speeding up again. The doctor said that when my heart was going a bit faster it would sometimes add in an extra beat. They stopped the treatment for about an hour whilst talking to the consultant and deciding what to do. By this time I had calmed down and I was all for carrying on. All those rhythmic syncopations I revel in as a musician weren't doing me any favours!

Luckily it was ok to carry on and I finished my treatment. My heart is obviously struggling to cope with all these chemicals pumping around my body. Blimey last time it was my memory and my lungs and now its my heart! Luckily I have only one more session left. I wonder what part of the body might start complaining next, my left buttock, my right jawbone, my brain? The mind boggles.

The day after chemo I wake at 4.30 am with my whole torso in a dull ache. I get up and take some paracetamol get a hot water bottle, read for a while then drift off to sleep. Spend the day hugging a hot water bottle and taking paracetamol. 2 days after chemo I have rosiy cheeks again but the dull ache has lessened.

The human body is extraordinary. I had totally forgotten what the pain felt like. I'm not even sure it is the same kind of pain I had last time. I know it is different from the original pain that led me to get treatment. It is like a colour that has been smudged and blurred, sometime more intense in one area than another. Perhaps I am so eager to forget the pain once it goes I just erase it from my memory.

Nine Lives

 

Friday 18 September 2020

This last week I have been busy painting my wall. The weather has been perfect. I started a blog The Pearls of Pearl Street a few years ago wanting to give people something inspirational to look at as they passed by. I have had many lovely conversations with neighbours and locals each time I am out there painting. Here's a link to the blog if you'd like to go and have a look.

https://thepearlsofpearlstreet.blog/2020/09/18/the-pearls-of-pearl-street-28/

I had my first conversation with the consultant from the thrombosis clinic. He described my blood clot as one event. The clot moves upwards from the legs and gets into the lungs. As the lungs are like the branches of a tree getting progressively smaller and smaller it may seem that there is more than one blood clot but in actual fact it is only the one that is breaking up into smaller and smaller bits. The blood thinning injections are to stop me creating a new blood clot. The hope is that eventually the body absorbs the clot back into itself over time.

I think the day we found out about this everybody was playing down the seriousness of the event saying things like 'Oh yes it is more likely to happen because of the chemo and because of the cancer.' Perhaps ignorance is bliss. I was not really aware how serious it was until now.  I feel that 2 of my nine lives have evaporated. Perhaps that is not a bad thing.  Living life to the full and treasuring the time I have left.

He did say one interesting thing. Having a blood clot was a major thing and he would not expect me to really recover my energy and banish the breathlessness until at least xmas ! ! ! never mind what the cancer, the chemo and heavy duty drugs are doing to my body. Ha ha a bit of perspective there!

Rosy Cheeks and Treacle

 

Wednesday 9 September 2020 

As per usual the first 3 days after chemo are ok because I imagine the body is still full of steroids of one sort of another. So the energy is ok and no pain. Day 3 was strange because I had incredibly rosy cheeks and my temperature was dropping then going back up again. I did ring the help line and check with the nurse but as I was only 1 degree off I was OK. Later on in the day my body seemed to calm down a bit. I had hot rosy cheeks all day though. There is that thing of waiting to see if some dreadful side effect is going to manifest itself any minute now? The tricky part is coming off steroids back on to no pain killers (which I tried for a day). Yesterday was a strange day where I felt that my breathlessness had started to come back. I had plans to do stuff but in the end spent time reading and sleeping on my bed.

Today bright and bushy tailed I had plans but strangely every time I got up to do something I felt like I was moving through treacle and very breathless. A simple thing like walking down the road seemed like and enormous effort. Wrapped in face mask and scarf covering my bald head I feel completely overdressed and fussy. That whole thing where I have plans to do something but I've just got to realise perhaps today might not be the day to do it. Perhaps tomorrow or the next day even. These kind of thoughts are pretty alien to me. I feel like a petulant 6 year old who wants to do what I want to do....... NOW THIS MINUTE !

So to patience.... give me patience and acceptance.

In attempting to help my son place a bike rack on the wall I lifted up his bike to measure it but then was overcome with giggles because I just could not hold it up or breathe. I walked a few steps away and then had to sit down and recover. The more I sat down the more I giggled and then my son started giggling at my sorry state. Then the both of us were in absolute hysterics, weeping with laughter. I got up to walk back into the house ( all of 10 steps ) then had to sit down again and recover and was overtaken by hysterics again. Every time I got up and walked a few steps I wanted to giggle because I could not breathe ..... hah how strange. We gave up on the bike rack and decided to put the bike somewhere else ha ha.

Each day I have to remind myself that I get just a little better..... my breath will come back!