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 

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?