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!

Fourth Chemotherapy Session

Saturday 5 September 2020

My fourth chemo session. A bit apprehensive about this one as I was going to have the first shot of the maintenance drug Bevacizumab. It would add an hour and a half onto the chemo I was already having (that already took 6 hours to do). There was a bit of a mix up about my appointment time. I was given 10.45 and they were expecting me in at 9am without my having been told by anyone. The Velindre wards are really busy now. All the people who were postponed their appointments due to Covid 19 are now coming back in for their treatments. So the ward was extremley busy and full all day.

The first hour and a half went by without incident. As I was being prepared for the next drugs the nurse asked me my routine questions, name, date of birth and my address. I suddenly could not remember the name of my road or the number of my house, although 27 was floating back there somewhere in the recesses of my memory. I was feeling light headed and a bit disconbogulated by this happening to me again. My heart started racing. The nurse took my blood pressure and temperature but I was fine. The address came back to me a minute later and I was much relieved but quite disturbed by the whole experience. The nurse went off to find a doctor to come and have a chat with me and see how I was. He asked me the name of the prime minsiter but I could only answer the 'racist idiot with the blond hair'. I could not remember his name. All his other questions I answered ok :- name of the monarch, count backwards from 20. He went off saying if this happens again let us know. I'm sure it was around a minute of memory loss.

So (after researching the tinternet a bit) I am assuming that this is part of the Chemo brain that happens when people are having treatment and afterwards too. Nothing more sinister. Ha ha ever the optimist. For the next hour or so I repeated to myself my name, my address and date of birth just testing that I was ok!

The rest of the time passed slowly. I buried myself in my new book 'Why I'm No Longer Talking to White People about Race'. Sobering and harrowing reading, (for a white middle class woman) but extremely well written in lay person's language with clear and informative writing. I recommend it to everyone. We white peoples need to educate ourselves to become part of the fight. To be actively and vocally anti-racist in every situation we find ourselves in.

Good News Half Way through

 Thursday September 3 2020

I have just come back from having my bloods checked to see if I am OK to have my chemo treatment. Tomorrow I start with the extra maintenance drug so it will be a long session. My results of the CT scan have been very good though. The cancer mass that was around my ovaries has shrunk by a third. It was an 8cm by 12cm mass that they measure three dimentionaly. Now it is 6cm by 10cm. The one inside my pelvis has shrunk by a third and the mass on the liver has gone from 2.5 cm to 1.5cm. No mention in the report about the Peritoneum and nothing about the Spleen or the Fallopian tubes which I'm told suggests its all getting better. I am responding very well to the treatment. I asked if the fact that I am responding well to treatment might extend my time without cancer after the treatment has finished and the answer was unfortunately No. They have no idea why with some people it takes years to re-appear and with others a matter of months.

 I think the injections are making a difference in that after I walk up stairs I am less out of breath and physically I do feel stronger.

I have a telephone appointment with the thrombosis clinic next week. Who knew there was such a thing? They will look after supplying me with the injections and do a monthly check that my blood is not too thin ! ! ! This is all to do with the blood clots on my lungs. I am such a numpty. I've only just read in the appointment letter, that that is called a thrombosis. I'm not sure which sounds worse a blot clot or a thrombosis. Of course..... that is what happens if you go on a long flight, you have to wear some very unattractive stockings and make sure you walk around every now and then to stop blood clots forming, i.e. Thrombosis.  In the assessement unit as I was waiting for the nurse to take some blood, do blood pressure and do an ECG just for good measure, I overheard the nurse talking about a patient that had a big thrombosis on her lungs. Wow that sounds a bit serious I thought to myself. It did not occur to me that she was talking about me !

I'm in love with the NHS

 Monday August 24 2020

I had my bloods tested by the assessment unit this morning. They say that my red count is kind of OK it was 91 now its 99 so it is creeping up. My white cells are low so I have got to be extra vigilant not to get infection by cuts or bruising and take temperature regularily.

My platelets are low so they want to do bloods again on Friday10.30 ish. The injections have a tendancy to lower my platelets so I'm giving them a double whamy at the moment. If they get too low I might have to stop the injections. Blimey what a delicate balance !

Monday August 31 2020 

I have been thinking about how incredible the National Health Service is.  How fortunate we are to have it in this country.

I have had and continue to have the most wonderful treatment by every person I have come across in my visits to out patients and treatment wards. I had no idea how intricately the different departments and layers of care interweave with each other.

I have visited the Xray department to have an ultrasound scan and then later a CT scan and biopsy. I was in a ward for the day and had porters deliver me to the right place wheeling an enormous bed (which I felt utterly lost in), through umpteen double doors (randomly opening outwards or inwards), in lifts and negotiating around corners and in corridors. A lovely lady gave me a sandwich and a cup of tea which was delicious after not eating or drinking for hours and hours as I sat waiting for them to check that I would not have an adverse reaction to the biopsy. When you have the scan they inject a dye into you to better be able to see what is going on on the screen. A bizarre sensation, a flush of hotness that is a bit like weeing yourself but I was assured by the nurse I would not and did not.

Later on there have been the visits to the different chemotherapy wards with the nurses looking after me for hours and hours. Over the weeks I have had telephone chats with my consultant where she has explained things so clearly and calmly and with patience through out this process. I no longer walk in through the hospital front door with my heart in my mouth terrified out of my wits. I am now an experienced hospital appointment attender!  I have lost count over how many people I have come across that are helping me on my cancer journey. It is an amazing service and organisation and full of people who care and ask you how you are feeling and if they can get anything for you.  Just amazing. Thank you from the bottom of my heart NHS.