From the dark end of the street, To the bright side of the road…

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Should you prefer, the blog now has an audible version and you can listen here:

https://soundcloud.com/user-211635300/bright-side-of-the-road


HIP HIP HOORAY it’s March. I love March. It falls behind Christmas and June in my calendar top hits, so I guess that makes it my third favourite time of the year. But I still love it. It doesn’t really feel like Spring yet, and there is still a chance that winter (or storm season as it appears to be now known) could bite us in the bum, but I always feel like March is the start of the upward trajectory. It’s not quite as dark and dingy in the morning and there is a hint of a night drawing out. Between the torrential rain and the storm force winds of the last month, there are little glimmers of green appearing in my balcony pots. The bulbs I planted last year are popping up and telling me that the seasons are marching on. When I planted those bulbs I was hanging on to every hope that the chemo would work and that I would be able to see the green shoots of Spring. Hope has enormous power, and so with every peeking bulb, every tweeting bird and every ever so slightly longer day, I breathe a little sigh of relief and exhale a little longer.

Last time I wrote I had come out of chemo 7 straight in to a blood transfusion and I was due chemo 8 the following week. My parents arrived on the Sunday and we had a couple of days of doing nice things and catching up before chemo. I half expected the chemo not to go ahead as I had had such a bad reaction the previous time and the bloods were so bad, despite the dose reduction from chemo 7 onwards. I was becoming more convinced that my body was just not able to recover from chemo in 3 weeks. I spoke to a number of people about whether I was being a bit dramatic and we agreed I should go ahead with 8 and see what happened. I am not, after all, an oncologist or a medical professional. I am though, pretty sure that this body needs at least 4 weeks to recover between doses. In other words, I agreed to go ahead and do it The Profs way and if the same thing happens, then we know the answer.

There are days when I wonder whether I am being a giant wuss and if I shouldn’t just pull myself together when it comes to side effects from treatment. I know I’m far from the only person that has to suffer these drugs, but bloody hell, some of them are so awful. I don’t have any benchmark in my family or friends for how this is supposed to feel. That makes it difficult to figure out whether I am hitting a norm or actually am suffering more than most. It’s not entirely relevant because, I suppose what matters is how I feel, not everybody else. Whilst mulling this over recently I was given some interesting information by one of my chemo nurses. I will share this here because, well I found it interesting and it may help give some perspective.

Firstly; until recently, I was the person at my cancer centre suffering the worst from the specific treatment I am on. That’s quite useful to know in the sense that I now don’t feel like a girl’s blouse and have a sense that my feeling terrible is justified. I’m told another patient has now taken poll position in the lack of tolerance department and can only imagine what that must be like for her.

Secondly, two years ago I was on the targeted therapy Palbociclib. It did a really good job on my tumours for six months then suddenly stopped working. The standard dose is 125mg and most people can tolerate the drug at that dose. My bloods dropped badly on 125 so occasionally treatment was delayed but eventually by crap white cells led The Prof to drop the dose to 100mg. This is not particularly unusual and allows patients to tolerate the drug better, whilst not losing efficacy. With me, same problem, rubbish white cells continued so it was dropped again to 75, which is the lowest dose the drug was trialled on. I just about tolerated that for the period of time before it stopped being effective. I recently found out that I came up in a discussion with the pharma rep because I was the only person in the clinic’s history to have had the dose dropped so low.

I think I’m just trying to cheer myself up about my reaction to drugs. It’s really hard when the drugs are working but your body is trying to tell you to stop. I do everything I can to stay positive, to keep my wellbeing as strong as possible and to be proactive about my mental health. It’s an almighty challenge. I am not feeling sorry for myself. In fact knowing that my body is fighting back is in many ways reassuring. It’s quite good to know that the body’s reaction is entirely out of my hands and that the fact I occasionally feel really quite horrible, is not a figment of my imagination. Wouldn’t it be great though, if the treatment worked and didn’t knock me sideways in the process?

Chemo week arrived again and sure enough, the bloods were not brilliant the day before, but they were just about above the threshold, The Prof was consulted and the response was to get on with it.

This was my parent’s first experience of the chemo cycle and as with anybody who comes with me on the day, they were pleasantly surprised by how non eventful it is. The port I have implanted makes for pretty speedy and not painful (much) administering of the syringes. They were also blown away with how utterly brilliant, kind and caring the nurses are that look after me. It’s reassuring for everyone to know that I am in such careful and capable hands.

The chemo fog descended and I slept for a few days, interrupted only by vegetable soup and green tea deliveries. Before the end of the week I started to improve and we made it out for a few trips and meals before they set off back to Wales at the end of the week. The next week arrived and in my head I was waiting for the bloods to drop and to start to feel bad. I had a quick word with myself and reminded myself that I should get on with it and not expect the worst. I filled my diary up with fun stuff, booked in lunches and looked forward to a good week. The next day I went in to town to have a cuppa with a friend and half way round MnS foodhall realised I was struggling to breath. After the cuppa (because, priorities) I set off to the cancer centre with an overbearing sense of deja vu. Bloods were taken and sure enough, haemoglobin, platelets and white blood cells were all too low. I was prescribed anti-biotics to counter the risk of infection and sent home. The plan was to give it 36 hours, go back for more tests and see if there was any improvement. The next day I tried to do some ironing and nearly passed out. I had been told my platelets were low and that if I bled, I should go straight to A&E. This is such a stressful way to exist.

If you are wondering why this is such a big deal and why I keep banging on about blood counts, I will go in to a little detail here. I have stolen this from the Cancer Research UK website, where there is plenty more information: CRUK

Red cells: Chemotherapy makes the level of red blood cells fall (anaemia). Red blood cells contain haemoglobin, which carries oxygen around the body. When the level of red blood cells is low you have less oxygen going to your cells. This can make you breathless and look pale. You might need a blood transfusion if the level is very low. After a transfusion, you will be less breathless and less pale. You can also feel tired and depressed when your blood count is low and feel better once it is back to normal. The levels can rise and fall during your treatment. So it can feel like you are on an emotional and physical roller coaster.

For me, a low haemoglobin means being light headed and breathless, on exertion it can be really hard to catch my breath. I’m basically not getting enough oxygen. last week my haemoglobin was 92 and it should be between 120 and 150.

White cells: Chemotherapy drugs often stop the bone marrow from making enough white blood cells. White blood cells are part of your defence against infection. When your white blood cells are low, bacteria can quickly increase in the blood. You might not have enough white blood cells to fight the bacteria. So a minor infection can become life threatening within hours.

The shite white cells have been a problem for me from the very beginning. My bone marrow seems to be slow to recover and not forgetting that I have a lot of disease in my bones, which will be impacting the marrow’s ability to do it’s job. Typically my problem has been with low neutrophils which are just one of the types of white cells that provide immunity. Last week my neutrophils were 0.4, they should be between 2 and 7. The overall white blood cell count was 0.9 and they should be over 4.

Platelets: With a drop in platelets you might notice you: bruise more easily, have nosebleeds or have bleeding gums when you brush your teeth. This is due to a drop in the number of platelets that help clot your blood. If your platelets get very low you may have lots of tiny red spots or bruises on your arms or legs.

This is the first type of treatment that has affected my platelets. They have held their own until now. Last week they were 32 and should be between 150 and 410.

That’s probably enough science for now. Suffice to say, my blood’s reaction to chemo is not great. Or as one of the chemo nurses said to me “Abi, your blood has been compromised, very compromised Abi”.

The 36 hours passed, I felt no better but went back to the cancer centre for the blood to be tested again. The haemoglobin was very marginally improved but otherwise the levels were too low. I was booked in for my third blood transfusion the following day. I receive two units and the transfusion takes around 5 hours, so I was at the centre for around 6 hours in total. That time allowed me to stop and think a bit about the chemo again and I made the decision that I would not do the next chemo when it was planned on the third week. I have now done two cycles on a reduced dose which have left me pretty poorly and needing somebody else’s blood. It is too predictable what will happen if we keep repeating that cycle. I have taken the decision this time, without seeking permission or consulting The Prof to push back the next treatment. I’m not prepared to put myself through the inevitable outcome again. Also, it allows me to spend some time with GozFam in March, which would have otherwise been unlikely.

Following the transfusion, I took some quiet time to try to recover and protect myself from germs. I decided to self quarantine in an attempt to not go anywhere busy or anywhere where I was at risk of picking up anything nasty. So really that meant staying at home. Fortunately I am not a person who ever gets bored. There are too many books to read, programmes to watch, old and new music to listen to, puzzles to do and phone calls to be made. I am lucky enough to spend quite a lot of time flower arranging and I have also re-found my love of Lego. Before I knew it the weekend had passed and this week arrived. Whilst I am feeling stronger I still have not inconsiderable anxiety about the state of my neutrophils and therefore my immunity. I am not overly concerned about Corona, but when they talk about it being more serious for the elderly and those with existing health conditions, I know they are looking at me. It didn’t help to wake up to the news one day this week that a healthcare worker at a Hertfordshire cancer centre was one of the people identified as having the virus. This subsequently turned out to be incorrect, as a later test was negative, thankfully, but it felt like it was getting uncomfortably close to home.

For all these reasons, it has been an unusually quiet couple of weeks from a getting out and about perspective. I have though, had a lot of lovely visitors who have helped me stock the fridge as well as kept me entertained and put a smile on my face. They are very special people.

This year, again, I am a judge in the BBC Radio 2 500 words children’s story writing competition. The stories could not have arrived at a better time. It’s something I feel really privileged to do. I get the opportunity to sit in my favourite chair and read the stories of the nation’s budding authors. Be assured, it’s a really insightful pastime and I really appreciate the chance to catch a glimpse in to the minds of the little people. Who knows, will I be the first person to read the next Dickens or Austen?

I have made a few trips to the cinema and watched some really great films. The first I would recommend is Parasite, which is truly worthy of all the reviews and accolades it has received. For me the sign of a good film is that it stays with you, and I have not stopped thinking about it for about three weeks. I also went to see JoJo Rabbit. I wasn’t overly keen to see this film owing to it’s subject matter, having never been a fan of the Nazis, but I went after a few people recommended it and couldn’t be happier that I did. It’s a complex, funny, sweet, happy, tragic film with some truly brilliant performances. It ended with a quote, which I share here.

The quote is by the Austrian poet Rainer Maria Rilke:

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It’s a funny old world right now and sometimes, we just need to be reminded that nothing stays the same for long.

I might also remind you, please, to feel your boobs and bits.

Happy springing, just keep going…

Big Love, AG xx

Bright Side Of The Road : Van Morrison

From the dark end of the street
To the bright side of the road
We’ll be lovers once again
On the bright side of the road
Little darlin’, come with me
Won’t you help me share my load
From the dark end of the street
To the bright side of the road
Into this life we’re born
Baby sometimes, sometimes we don’t know why
And time seems to go by so fast
In the twinkling of an eye
Let’s enjoy it while we can (let’s enjoy it while we can)
Won’t you help me share my load (help me share my load)
From the dark end of the street
To the bright side of the road
Into this life we’re born
Baby sometimes, sometimes we don’t know why
And time seems to go by so fast
In the twinkling of an eye
Let’s enjoy it while we can (let’s enjoy it while we can)
Help me sing my song (help me…

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