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.

Belly Pinch

 

Friday August 21 2020

Bit of a shock today. I went for a routine CT scan and they found some blood clots on my lungs. Some right at the edge of my right lung and some in the middle of my left lung.

They don't know how long they have been there. They were definately not there before I started chemo so they might have started growing after that or maybe after my last chemo. They just don't know.

It is a common thing to happen to people who have cancer and are going through chemo treatment. Both things mess with the blood and make it coagulate more and definately change things in the body. Three people in Velindre had similar results to me today.

Generally the body re-absorbs the blood and the clots go away by themselves. But because I am having treatment, they want to help it disappear by giving me blood thinning medicine. Obviously it is dangerous to have blot clots anywhere at any time. The nurse did say that probably everybody has had a blot clot in their body at some time or other. It is just that mostly we don't know about it. They only found out today because I was half way through my chemo sessions to see how I was doing.

The nurse did say that apart from the blood clots the scan looked good and it was doing the right thing to the cancer. I will find out more details with my phone consultation next week.

I went in without eating anything and did not take anything to read. I thought I would only be there for an hour or so. They sent me to the assessment ward. I was put into a ward with 3 other men who were being assessed. I had a bed and I sat on the chair beside the bed mostly. I had my blood pressure taken and temperature and some bloods taken. Then later the nurse got me to take my bra off and lie down on the bed with my shirt on and gave me an ECG. They put sensors on my legs around my chest, ribs and heart. And then a mobile machine printed out the result. I was doing my best to calm my heartbeat with deep breathing. My heart reading was OK. Just like in the movies... the wiggly wavey line.

After that I just had to wait for the results to come through and for a doctor or nurse to tell me what was going on and give me some blood thinning drugs.

So my scan appointment was 11.20 and the nurse came and had a chat with me around 3.30 - 4 pm.She was fantastic and very clear and calm about everything. It was a lot of information to take in at once. I was expecting her to give me a pill to take or something.

Another shock ...... the treatment is an injection everyday for 6 months ! ! ! If I have trouble with injections they can give me a pill but they feel that the injection is a more tried and tested way of solving the problem. It is important I don't miss a dose. If I do I have to ring them up and confess.

There are no side effects as such but I will become more susceptical to things going wrong because of the drug. If I cut myself I will bleed, I have to be careful with brushing my teeth I might bruise easily, get sore at the injection site and a whole other slew of things that might affect 1 to a 100 or 1 to 1000 people. I will just have to be extra vigilant. Halleliwia ! yet more things to look out for.

I had visions of waiting in for the district nurse to arrive every day for the next 6 months but she said I could do the injections myself. They are into a pinch of fat around the belly so should be straight forward to do. Then I would still have a life. Luckily I am not squeamish about needles. Even so ! ! ! The Idea .... I have to do the injections around the same time every day. So I will have to fix up a system where I know I have done it and don't forget. I choose a different injection site everyday, like an oval pattern across my belly or she said a smile shape. A smiling belly.

I am so naive. It did not occurr to me that unexpected things might crop up and have to be dealt with as this treatment goes on. I really thought I was dealing with it all very well. It is the cancer and the chemo that are doing unexpected (at least to me) things to my body. Well now I know I have to prepare for surprises. Always take a book into Velindre even if it just for taking a blood test you just never know what might happen!

I go to have my bloods done again on Monday. They talked again about possibly giving me a blood transfusion if my results were really low. That would be another long session I guess. Vampire anyone? I told her about my visual migraines that had been happening after having bloods taken. She could not give me an explanation for them. Breathlessness is a sign of not enough oxygenating red cells but also of stuff happening in the lungs. Of course today I am at my lowest ebb 7 days or so after treatment. After this my body starts to recover.

Learning to deal with surprises and learning to have patience as hours slip by in waiting rooms and hospital wards. I shall be a veritable Saint after a few more months of this!

Saturday August 22 2020

I have calmed down after the shocks yesterday. I've been quite domestic and done some cooking. I've done my first injection. It really was not so bad. It did not hurt going in just a bit hot when pushing the plunger and ached a bit for a while afterwards. Really not too bad. 

 

Car Park Crooning

Wednesday 19 August 2020

Almost a week on from my last treatment and I'm feeling OK. It was a slightly lesser dose so I was able to recover quicker I think. A couple of days of feeling fizzy with steroids then a bit of a shift back onto paracetamol. It has been a week of grumbly gripy pains around the ovaries and some random twinges around the back but in comparison to before really nothing to complain about. Before I had classed my pain as a 3 (severe) but this time it is a 1 (mild). R E S U L T ! My plumbing is back to normal too phew what a relief! 

I've had a few days of my heart racing as if I have drunk 10 cups of coffee in one go and the breathlessness carries on. After walking upstairs I need time to recover my breath. Walking any slight incline gets me going. (Perhaps its time to move to East Anglia?)

My son bought a lovely sharp knife for the kitchen (all mine are pretty blunt). Unfortunately the knife fell off the work surface and caught his finger on the way down. We had just returned from a walk in the woods at Nantgarw where in my inner mind I had been bemoaning and whingeing to myself about the fact that I was breathless and would I ever feel strong again and how I hated feeling weak and pathetic and wobbly in the legs. So as my son accidentally started spraying blood liberally around the kitchen and shouting “I need a bandage” I shot up stairs to the bathroom two stairs at a time to get said bandage and plasters to try and stem the flow. We then had a quick peek to see how deep it was and decided yes he needed stitches. In no time at all I was driving my car to A&E department the other side of town. Breathlessness and wimpyness vanquished in a second. Isn't the human body amazing! Nothing like a bit of blood to focus the mind.

After an hour or so of waiting in the car at A&E I remembered a friend had suggested that I should carry on singing, it being a healing and restorative way of breathing and relaxing. My last vocal recording session was in the middle of June and I hadn't done anything since then.  I tentatively tried out a few notes. I couldn't remember a single song though (I blame that on chemo brain). After a while I was in full swing playing with bass lines and doo waps and shoo be doo be doos galore. My son needed 3 stitches, luckily no tendons or muscle had been touched.

I wanted to say a big thank you to friends and family and peoples and to all who have responded thoughtfully and heartfully to this blog. It is not an easy read I know. I am now gathering some positive cancer survival stories too.

Here's a few stories of courage and determination and wonder.

A man was given a diagnosis of terminal cancer so he got hold of all the Marx brother films and sat and watched them. He laughed and laughed. At his next check up the cancer had gone. He had laughed it away.

Of a 90 year old lady who has survived 3 cancers and has been totally cancer free for several years.

Of a lady who was diagnosed with sever stage 4 breast cancer and has been totally cancer free for the last 15 years

Of a lady who has danced in defiance around her various cancers for the past 20 years.

Birthday Lady (Third Chemotherapy Session)

  

 

Thursday 13 August 2020 Third Chemotherapy Session

It was my birthday today and even one of the nurses sang me Penblwydd Hapus and we all had a giggle. I was much more relaxed this time. I knew what was going to happen and also that the dose would be a bit less. It was a long day, daydreaming and reading. Sometimes joining in with randomn conversations in the room, sometimes not. A gentle atmosphere full of intermittent beeping.

A funny moment...... This lady was sitting the other side of the ward and after about 2 hours she was finished and was getting ready to go home. She opened up her handbag on the floor and I could have sworn she had a miniature dog in there. For a split second I was thinking surely they don't allow dogs in hospitals when she reached down, picked it up and put it on her head. I was glad I was wearing a face mask at that point to mask my smiles. I have to say though it was a fabulous wig.

When I got home (the last to leave, and I got lost trying to find my way out!) my son had made a special birthday dinner and dessert which was delicious and we watched the Marvel Antman movie. Perfect end to a very bizarre day.

The consultant has offered me the option to have bevacizumab treatment in addition to what I was already having. This would begin before the end of my 6 cycles and continue afterwards for 18 cycles, essentially a years worth of visits to Velindre Cancer Centre. If it worked for me I would have a treatment every three weeks.

“Bevacizumab is an artificially made antibody which attaches itself to cancer cells and stops them from growing. It works by stopping the cancer from making new blood vessels. This reduces the supply of oxygen and nutrients to the tumor, so it stops growing or shrinks.” (Velindre Cancer Centre)

This can extend life by 6 months if it works but it is a double edged sword. There are some quite serious side effects which I won't go into here but are pretty daunting to consider. As this cancer is expected to come back after a year perhaps this is a way to extend the period without cancer. Its an all or nothing dose. If I cannot handle the side effects then I will just stop and take my chances. I have three weeks to make up my mind whether I'd like to try it.

Explosive and theatrical rumbling thunder and lightening in the night with loud torrential downpours of rain. I didn't manage to sleep all night. After taking my anti sickness pill 8 hours after the end of chemo at 2am I read and then read some more. Perhaps the last time I had treatment I had a level of worried adrenaline going through my body as well as the chemo so when I got home I was exausted and went to sleep ok. Perhaps thoughts of bevacizumab kept me awake?

Hair Falling Out

 

Saturday August 1 2020

A few days ago I cut my hair short again. My home style haircut was growing out more tufty than I'd planned so now I have a No 4 all over. In the middle of the week my gums started to bleed but with lots of brushing and some mouthwash that had cleared up by the weekend. On Sunday I noticed a few stray hairs falling out (“ah so it starts gradually then”). I had a lovely week with a visit to sit on the beach in the sunshine, a walk in a nature reserve, a walk along a river, a walk in a park. A socially distant visit from friends outdoors. The only thing was that my breathlessness was not going away.

Friday August 7 2020

Today I was meant to be having a chemo treatment but apparently I am anaemic. This has nothing to do with iron deficiency but purely with the chemo being a bit too strong. I have to wait another week to give my body time to make more red cells. I immediately went on a spinach with everything binge in the hope I could help but alas not. It is a fine line between wanting to shrink and control the cancer spread and destroying too many good cells in the process. This explains why I am so breathless. The red cells carry oxygen around the body. Ah so there you have it. The good news is that my white cells are perfect but my platelets were a bit low. 

To re cap :- on May 28th my C125 was 1600. On June 23^rd it had gone up to 3005 which was a bit scary. By July 12^th after the first chemo session it had gone down to 1500 and after the second chemo session July 17^th my C125 was now down to 182. This means that the treatment is really working which is fantastic news.

I had a bit of a funny turn after I had my bloods taken on the Monday. Only 4 vials were taken (a minuscule amount relatively speaking) but I decided to take a little stroll by the river afterwards (hah bad idea). I found myself light headed and spaced out. Then I was trying to say something to my son whilst walking gently along and I could not remember the words I needed to use. It was most bizarre. There was a blank where the words should have been. It felt like I was in this peculiar void for ages but it might only have been 30 seconds or less. I also had the migraine flickering visuals I get sometimes. A small patch of my vision starts flickering like a disco ball or xmas decorations under lights. The patch turns into a line and then gets bigger and bigger until it has gone beyond my eyes and my vision then returns to normal.

Gradually the words returned and I began to feel more normal. And my internal panic calmed down. Oxygen ! I just needed more oxygen in my brain. It wasn't a brain tumor ! ! ! I had my bloods taken again on Thursday in the hope that I might be better but I was not sufficiently improved. So now I have another week of feeling ok ahead of me to look forward to.

These last few days my hair has been falling out a lot. A veritable lawn left on my pillow in the morning. I've had some tingling and strange wooshes of heat around my scalp. So today I am going to cut it down to a number 1 and possibly even shave it. It is a strange sensation knowing that if I just brush my hair lightly my hand comes away with what looks like short grass cuttings but they are dark brown. I had not thought my hair would fall out so quickly. Now I'm considering getting a bright colourful wig of some kind for when the weather gets colder? 

So I got my clippers out and asked my son to video me shaving my head over the sink in the bathroom. Remember all those movies where people are on the run from the law and shave their heads? It is quite dramatic though at one point I most unfortunately did look like a Clown, bald on top and tyfty on the sides. It did not take long. My son did the bits I missed. To be brutally honest it did not look good. There were circular bald patches on top. At the back of my head where I lay down on my pillow it was thinning quite a lot. So it had to be shaved. No shaving foam so soap just had to do. Wow it took quite a while. I was just doing it by feel. Then my son checked me over.

 For the rest of the day I had a shock whenever I caught sight of my reflection in the mirror. It took a bit of getting used to even though I have seen myself like this before. I am channelling Michaela Coel, the writer and star of I May Destroy You, a BBC1 and HBO tv series I have just finished watching. A pithy, hard to stomach (from a priveledged white perspective) look at consent, sexual assault and race in Britain today. It was broadcast against the backdrop of the Black Lives Matter movement. So many layers to each episode. It is exciting uplifting to see this kind of work being made. 

 Tuesday 11 August 2020

A few days later and we are in a heatwave. It is far too hot to put anything on my head. Inspired by Michaela Coel I'm walking around bald and brazen to have my bloods done. There is good news in that my bloods are back to normal and I can go ahead with treatment. I've had those flickering/visual migraine's about 5 times since Aug 7 but I've been reassured I've nothing to worry about. It is the body's way of complaining about the extreme substances I'm subjecting it to.