My festive plans have taken something of a back seat this week. I am writing this blog in the chemo suite at Elstree Cancer Centre where I am receiving a blood transfusion. Given I will apparently be sitting here for 5 hours, this seems like a good time to reflect on the last few weeks, and maybe even the year.
Last time I wrote, I was still bouncing from the good news that the liver was responding to chemo. The flip side of that being that the bone mets had taken against the plan and where they had been stabilised and behaving, had decided to progress again. The result of that was increased pain in my thoracic and lumbar spine which was definitely not improving my quality of life. The Prof referred me back to the Radiotherapy oncologist and a few weeks ago we met to discuss a treatment plan. We agreed to treat two areas which meant 10 sessions over 5 days. I had three sessions one week and two the following. Radiotherapy is a painless treatment and is mostly just inconvenient as it requires being in the same place at the same time for several days in order to receive the doses. This was my third series of radiotherapy. The first back in 2017 on the boob when I was first diagnosed, and last year I had three sites treated; femur, sternum and neck. So it is starting to feel like groundhog day and I am becoming one of those annoying patients who thinks they know it all. My radio oncologist is in The Prof’s league of patient so he puts up with me very well. The side effects are irritated skin where the rays go in and out and fatigue as the body tries to recover itself. Both of these happen sometime after the therapy has ended as the treatment is cumulative. We will know over the next few weeks whether it has been effective, ie, whether the tumours are stabilised and the pain has improved. At the end of the final session I was asked if I wanted to ring the bell. The cancer bell is usually rung by those celebrating the end of treatment. There is a debate in the community about how inappropriate it is, because those with stage 4 never get to finish treatment. I believe that to be nonsense, and if we are not celebrating the fact that people are getting cured of cancer then something has gone terribly wrong. In my 3 years of treatment I have never rang the bell. So I did it that day to remind myself that every step completed is a milestone, and every milestone keeps me here a little longer, so I rang it loud.
Two days after radio finished I was back at Elstree for the fifth chemotherapy. My dear sister came down the day before to be my chauffeur, carer and cook. She has these new roles down to a fine art now and is just brilliant. The day before we went to see Last Christmas at the cinema. We are lifelong Wham and George fans, as well as huge Christmas lovers, so it was a great opportunity to see the film together. We loved it.
Chemo day went according to plan and the next few days were the usual chemo fog of nausea and fatigue. As time went on I realised that I wasn’t feeling any better and the breathlessness that I have experienced the last few cycles was getting worse. I was due at Elstree for acupuncture, but as soon as I turned up I was sent immediately to the chemo suite for bloods and observations. Apparently I looked that bad, and the fact I was struggling to catch my breath was of some concern. Bloods were taken and once again the white blood cells are rubbish and the haemoglobin had also fallen below acceptable levels. I was booked in for a blood transfusion and despatched for a chest x-ray and to collect some anti biotics.
As I sit and write the IV pump is very slowly filling me up with somebody else’s blood. The plan is that this will make me feel significantly better and get the haemoglobin levels up. I am so grateful that somebody walked in to a blood donation unit a few weeks ago, allowing me to get a couple of bags of the good red stuff. I used to give blood, and sadly am not allowed to anymore. I would encourage and ask anybody that can, to consider doing it on a regular basis.
Somehow in the last few weeks I managed to get my eyebrows microbladed. I had noticed that my usually bushy and inherited from my Dad Dennis Healy type brows had started to fall. Not wishing to lose any more definition from my face, I didn’t want to draw them on so I investigated the possibility of semi permanent makeup. Via my cancer centre I was recommended to an expert. It turns out that the lovely Alicia offers her services and resources free of charge to people in my situation. I have met so many incredible volunteers and angels these last few years that go out of their way to make the lives of other people better. What an incredible, generous and selfless thing to do. I could not be more grateful. The brows will take a few weeks to settle down, but I’m already so pleased I got them done.
I mentioned in the last blog that I was going to try on some wigs. I took one of my best girls with me and we set off on a Saturday morning to investigate the world of wigs. Turns out, it’s quite complex. There are a lot of options, between real, synthetic, how they are made, price (v spendy) and then obviously every colour and style under the sun. How’s a girl to choose?! It took a while and felt pretty strange, but eventually I settled on Willow The Wig. She hasn’t been out much, as we are getting to know each other, but I’m learning to love her.
I also managed to fit in a long weekend to The Cotswolds. Despite fog, persistent rain and heavy grey skies, we had a really lovely time exploring some new places. We enjoyed a couple of fabulous pub meals as well as visits to some delightful cake shops. When the rain got too much we retreated to the log fire in the wonderful lodge we had rented. So blissful.
I began by thinking this would be a good time to reflect, my next blog will be in the new year. What a year it has been. Since I started writing this blog in April last year I have published 32 blogs. If you have read them all, that’s a lot of words! We have over 14,000 views now in over 60 countries. Isn’t that just amazing? I’m proud of this and I’m amazed by how a few hours on my laptop every few weeks has bought me closer to old friends, family and introduced me to new people. It remains the easiest way for me to tell anybody who cares to listen what’s been going on and for me to share some of my deepest and darkest thoughts. Let’s be honest, there have been dark times this year, but there have also been some wonderful memories made. I like to think though we are ending on a high. I tried some psychotherapy this year, it wasn’t really that helpful and I maintain that writing is the best therapy for me. To all those who joined me, and told me I was brave, sent me quiet messages of support, pushed me a long a little bit and reminded me I need to find the normal in this chaos, then helped me to find it, I thank you. We go in to 2020 knowing the chemo is doing it’s job for the time being. I will have the 6th chemo just before New Years Eve and then I will be back in the MRI to see what the status is. In February it will be 3 years since diagnosis and I am going in to the 4th year of living with this disease. That’s a lot of stress on those around me. Angels, the lot of them.
I keep reminding myself to live in the now and not give myself scanxiety for a scan that isn’t even scheduled yet. After the last blog, a lovely relative sent me the following quote, and I couldn’t agree with it more.
Here’s to 2020 and all it may throw at us. I shall use my time.
Wishing you and yours the very merriest of Christmases.
Feel your goddam boobs.
Big Love, AG xx
Do yourself a festive favour and get hold of this, my personal favourite, Christmas Album:
Smith and Burrows / Funny Looking Angels
The Christmas Song:
All through the year we waited
We waited through spring and fall
To hear silver bells ringing and winter time bringing
The happiest season of all
Chestnuts roasting on an open fire
Jack Frost nipping at your nose
Yuletide carols being sung by a choir
And folks dressed up like Eskimos
Everybody knows a turkey and some mistletoe
Will help to make the season bright
Tiny tots with their eyes all aglow
Will find it hard to sleep tonight