Bevacizumab treatment No 5 of 18

 

Thursday 17 December 2020

All set to have treatment tomorrow. My bloods are ok to receive the bevacizumab drug. I've just looked up 'normal' blood results and I am definitely getting better, heading into the normal range which is good news. I am still vulnerable to being unable to fight off infection so still shielding like mad in this coronavirus world.

Friday 18 December 2020

The ward was unbelievably busy today. So many whirring drone sounds and manic beeping going off as the machines let the nurses know that one phase of treatment has finished and it is time to hook up another bag of delights for the patient or set off a saline flush through the body. The nurse looking after me was rushing around like mad doing a hundred jobs all at once. It took her nearly an hour to set me up with my drip and set me off. Phew you're OK I'll check back in an hour I can imagine her thinking. I think they are always a bit wary of me because I had 'that memory lapse' and suddenly my heart rate going bananas the first time round with bevacizumab. At 4 o clock I was just finishing and she had still not had her lunch break. God bless the NHS and all who work within the caring profession.

Sunday 20 December

Yesterday was a day of feeling bloated and peculiar with all the drugs whooshing around my body but hey today I'm feeling OK. Last night was the announcement that as of midnight we are in total lock down.  A new aggressive highly infectious strain has appeared. Families can only see each other on xmas day and no more. All non essential businesses to close. We knew it was coming on the 28 ^th but it was a bit of a shock for it to happen Saturday night. Wondering how the next 6 weeks are going to pan out as I am sure it will be 6 weeks to get the virus under control even with the vaccinations beginning to happen. 

So what project can I get on with during this lock down? The summer one was clearing extraneous stuff from the house, painting and tidying the pots in the yard, making a new album. Perhaps I should make another album of songs that have not seen the light of day for many years and never got recorded properly? A new/old album? Of course there is the planning and preparation for my new film as well! 

Time to daydream myself back onto the magical island

Island walking

 

Sunday 6 December 2020

Since the last blog I have been catapulted into editing photos and video clips into a video for the actions of the Red Rebel Brigade Cardiff. I could not be one myself (even though I have the costume and everything). A pleasing activity even though my skills with editing software are extremely limited. I have perhaps made up for my editing limitations with making original music for the videos. One video has part of a track I made way back in the early 2000. A surprising way for the music to appear as it is locked in to my CD stash in my basement that only sees the light of day if I have a live gig. The other is more abstract using drum samples.

My energy is returning steadily and the Bevacizumab treatment does not affect me as much as the chemo therapy did. I can bounce back sooner and get on with 'doing stuff'. I am ever so slightly nauseous and have no appetite but determinedly eat 3 meals a day as I cannot bear to feel physically weak. The bloody nose and the bleeding gums are slightly less now, still a bit erratic when or why it happens. I am aware my muscles and strength need building up as does my confidence and balance after months of feeling wobbly and having no breath. Exciting to feel I am 'on the mend' in many many ways.

I went on a long walk on the cliffs at Trwyn Larnog and over to Ynys Sili yesterday with a good friend, (keeping to the socially distant 2 meter rule of course) who was happy to have lots of rests and ambling along styley motion as well as slipping and sliding in some very muddy fields and tracks. We were given an ever changeing glorious dramatic dark clouds and sunlight display over the sea with occasional hints of turquoise and sky blue. Clouds turning pink at the end of the day. A special day to be alive. 

https://vimeo.com/487171102 

https://vimeo.com/487152793 

Complex Mass

  

Tuesday 24 November 2020

A cautious telephone call about the CT scan and the bloods, with good news but not quite a We Hey moment. Gradual improvement or no change ..... all a bit too level headed to get excited about. The main thing is I have not got worse !!!!!

The “complex mass has reduced”.... ( I can feel a song coming on here ) which was the main tumour apparently encompassing my pelvis, my ovaries, my fallopian tubes and my womb. They cannot really differentiate between them in the scan! At the beginning it was over 100 mm then it went down to 99 millimeters and now it is 77 millimeters Hooray !

My liver was not mentioned in the report so it is classed as normal Yey !

My lungs .... there is a small node on the right lung and a node on the left lung. As it has not changed since last time so that is good news. “The lungs appear otherwise clear.” says the doctor.

Doctor thrombosis man did say it would take till January to recover from blood clots and possibly longer for the body to re-absorb them.

My Red Cells are at 110 a little higher than before

My white cells are 2.4 which is much better than before

My platelets are now at 222 which is much better than before

My neutrophils are now 1.2 which is much better than 0. 2 (I wasn't aware I had any..... A type of white cell that helps to heal damaged tissue and resolve infection / bone marrow)

The CA125 result has not come back yet but last time it was 12 which was well within the normal range.

They can see small lymph nodes in the armpit. “They are of doubtful significance and remain unchanged from the last scan.” How non committal is that? Nobody mentioned them in my last scan. Apparently different radiographers notice different things or choose to mention different things. Because it is unchanged it is good news.”Just because they can see it and then mention it, it does not mean anything bad.” says the doctor. (Whaaaaaaat?)

I have had 4 Avastin maintenance drug treatments and I am allowed 18 in total, still about a year's worth of treatment to go. Now the chemo has stopped will the tumour still shrink? The Avastin can sometimes continue to shrink the tumour but they don't really know. It is completely different for each individual. Because I have responded well to Avastin the best they can say is that they can keep the cancer at bay for a year whilst having treatment. After that, nobody knows how long a respite from chemo I might have.

So this phone call was not quite the definitive dramatic news I was hoping for ( you are cured !!!! the cancer is all gone !!!!!!) Its a case of, little by little we go and hope for the best. I still am to consider myself in the high risk category especially as covid-19 is still around. Apparently about a month after the end of treatment in a sane world your bloods might be back to normal. “But then white cells can take years to recover completely after chemo in some cases”. Says the doctor (Ooooooooh )

So there will probably not be an EUREKA moment where I'm cured completely. It is much more about managing the disease through treatments and positive will and energy. Now I do remember the first time I spoke to a consultant and she emphatically told me they cannot cure a stage 4 cancer this advanced but they can reduce it and manage it with treatments and repeats of chemotherapy if it is needed. The words “palliative care” were mentioned. I conveniently forgot about this and started imagining a different scenario altogether only to be brought back down to earth with phrases like “unchanged” and “reduced” ha ha that will teach me.

Meanwhile here's a video of strange things that have been happening in Splott and down the bay these last few days. Best listened to loud with headphones.

https://vimeo.com/483303124 

 

Crimson and Green

 

Wednesday 4 November 2020

My last bloods on Monday were not too clever. I'm down to 1.06 with my white blood cells where normal is between 4 and 11. Similarily my red cells are down to 1.04 where normal is around 4 to 5  My magnesium is low and my platelets I feel very sorry for as they are down to 76 where as normal is 150 to 400. So that explains the presence of blood when I wipe my nose (it is not an out and out nose bleed just an irritating presence ) and occasional bleeding gums. Such a strong colour, deep crimson, so vital to life, so essential.

So that explains the lack of enthusiasm for doing anything remotely like exercise. Luckily until today I have had the excuse of rainy cold windy weather. The last time I went for a walk after about half an hour of feeling fine I suddenly lost interest and all energy drained out of me and it was a struggle to get back to the car. So many people have told me it is an accumulative journey of fatigue. I was so convinced I would be different Doh ! Ridiculous expectations that once the treatment ended Bing Bang Bosh I would bounce back to charging around Sianed styley getting things done !

I've got to remember that I am still vulnerable Aaaaaaaaiiiiiiiiiiii

Rocking a pirate style today. I have 2 pairs of trousers that still fit me. These are a heavy cotton that disguise my stick thin legs and give me some substance. Its not so much “does my bum look big in this?” as “Where on earth has my bum gone? I knew I had one once.” The layered look is working well I feel ! All my life I have taken my health and energy for granted. Ha Ha that will teach me !

My eyebrows have finally all disappeared but I have still one or two eye lashes on each eye. Down below I am completely smooth. So now is the time to experiment with drawing my features back on. What a bizarre idea! Can I be bothered? Shall I remain bland for a while and see what emerges?

I have been told that my hair will grow back different, curly? blond? White? What surprises await?

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.