Wall Poetry

 

 

Some poetry to brighten your day

Visit

https://thepearlsofpearlstreet.blog/2021/01/25/the-pearls-of-pearl-street-31/ 

for the full works

Exhibit Tendancies

 Tuesday 26 January 2021

A telephone consultation with Dr Quinton. My bloods are back to normal We Hey ! BUT I have a problem with high blood pressure. The thing is, it is a known side effect of the Avastin maintenance drug. The plan is to have a lowering of blood pressure pill given to me on Friday and hopefully that will help the protein in the wee as well (or have I misunderstood that bit?) My kidneys are complaining!

The bad news is that the cancer marker CA125 has started to go up rather than down. 6 weeks ago it was 11 then 3 weeks ago it was 17 and yesterday it was 33. It is still within the normal range but you have to ask why is it going in the wrong direction? I am going to have a CT scan on February 25^th to see what is going on.

A telephone consultation with the thrombosis clinic. They are happy with my bloods and are going to half the dose of apixaban. We talked about my bleeding gums and he is going to put a special mouthwash on the prescription. Must not do it at the same time as brushing teeth as it reacts badly to toothpaste! ! ! ! (green teeth anyone?) Another 6 months of a lower dose

Friday 29 January 2021 

My blood pressure was definitely too high this time and the protein in my urine was no longer a trace but up to level 3 and you can't go higher than that! So I spent some time waiting to see a doctor and then waiting for the doctor to get hold of the consultant and then after a long while I was told to go home. I was given the blood pressure medication which is Amlodipine and told to come back next week to get a 24 hour urine collection bottle so that they can test it in a more sophisticated manner and see how bad my kidneys are.

So what happens if my body cannot handle this drug anymore? Well there are other immunosupressant drugs I can try. So this is not the end of a line, something I was quite pleased about. When I first heard of a year of 3 weekly maintenance drug sessions I was appalled but now I am terrified at the thought if not having something that suppresses my cancer! How time changes everything.

I have now 3 weeks to possibly feel like 'normal' what ever that is. The oxygen in my blood is 100% How cool is that ? Added to that I have been given the first dose of the covid vaccine.

Turmoil

 

Wednesday 20 January 2021

Thrown into a bit of a pickle by finally getting myself a blood pressure machine for home testing. So after having a few emotional and unpredictable days looking after my dad I came home and tried the machine.

Monday afternoon, I was 163 over 104 with a heart rate of 69 Halleliwia ! ! !  stroke or heart attack anyone?  Normal is 134 0ver 84. So after calming down bit I did some reading and realised that actually I am already doing things to prevent high blood pressure. I'm not over weight, I rarely drink alcohol, I eat loads of fruit and veg, don't put extra salt on my food, I exercise regularily and have cut down my caffeine to 1 cup of coffee a day. So the only thing I am not doing is the meditative breathing to slow down my heart rate and enter a calm state. My friend also said yes indeed you can lower your blood pressure by doing breathing exercises.

 So today I did my yoga session and then sat with a timer and did breathing for 5 mins. Well the first reading came out 162 over 108 with a heart rate of 80    EVEN WORSE ! ! ! But then I set the timer for 3 mins breathing and did it again and this time it was better 147 over 96 with a heart rate of 70. So not quite down far enough but showing a good enough drop for me to feel a bit better. I think the first time I did it today I had the cuff too tight. 

So the poison I am imbibing is giving me high blood pressure and therefore my kidneys are complaining lovely!

My plan is to get my blood pressure way down by the time Monday comes around and I go in for blood tests in preparation for my next maintenance drug session.

Today I have had a headache all day. Tonight I have been sporting a hot water bottle on my head or wrapped around my neck. There is a Buster Keaton film where he has a hot water bottle tied to his head  with a scarf. Very striking!         

Five O Clock Shadow

 

 

Sunday 3 January 2021

 

There is definitely some hair on my head now ! ! !  Quite excited to see it is not all white and has some colour to it.  Nine weeks and 4 days after my last chemo.  Will there be curls?

 

Spent the day painting large hearts on my wall. I am waiting for the wall to dry before painting on the words.  Today it is all about spreading the love.  Here's to inspiring poetic thoughts that will give us strength and courage in dark times.

 

 

 

Blwyddyn Newydd Dda Happy New Year 2021

 

 

 

Here's an offering from the Winter Solstice

Enjoy

 

https://vimeo.com/494509430

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