5th March 2022
Can’t believe it was January when I last blogged. Or maybe I can! Time flies.
I’m not commenting here in detail on the world situation (I will do that separately) but suffice to say it puts all our problems in perspective. There is always someone a lot worse off in the world than oneself and I send love and light to all involved in the conflict.
So, this is an update and hopefully a watershed moment in the reporting on my health! I started radiotherapy at the start of February and finished it at the beginning of March. Truly a moment to celebrate. I am still having the Phesgo injections every three weeks but these have no side effects and I can forget about them pretty much. It’s five minutes of some discomfort and being careful afterwards with the injection site as it can sometimes feel sore, but that’s it!
The radiotherapy was an ‘interesting’ experience. I had forgotten much about this from the first time I had it back in 2011 and the technology has advanced since then. This was at a specialist cancer hospital in Windsor. I had to go for an appointment beforehand to be measured by cameras. There was no need for tattoo markers which I had last time and which are still used for some patients by the NHS. I still have the old tiny dots from last time.
The site being treated was my left side up to the collar bone and in the armpit around the lymph area. Patients are treated every weekday but weekends are free which is a nice interlude. The treatment itself takes about five minutes or so but there was travelling time of around 40 minutes each way on top and waiting time so it was around two hours or more each day. They organise travel to and from the hospital for all patients so I had interesting chats with a variety of drivers about all manner of topics! I had to travel on the day of Storm Eunice. The roads were very quiet on the whole – we only saw one lorry – but you could feel the car being buffeted in the wind. Inevitably there was a tree down blocking one of the roads on the way back.
Patients who have radiotherapy to the left side have to hold their breath. This is to create a space between the treatment area and the heart. You lie down and they move you about a bit to get you in exactly the right place to match the measurements taken previously. Your arms are held in supports above your head so it feels a bit like being a spatchcock chicken! The one thing that fazed me initially was they put a device above my head which had two lines. One in the middle and one which moved according to the movement of your chest. When you breathe in, the line moves down towards the middle line and the aim is to keep them there. However, for me it was a distraction and I found myself adjusting my chest as the moving line hovered around. It really didn’t work and made me more stressed so the next day I said I would use it for the initial breath in and then close my eyes and focus on holding my chest steady. That worked for me and the nurses were happy with it. I did find towards the end that I found it harder on some days to hold as much breath in. Probably due to being tired.
As seems to have been my experience throughout, this has all been more of a challenge than I was expecting. Chemo was a struggle but I was hoping radiotherapy would be easier. However, I felt very emotional after the first two days of radiotherapy. Thinking about it, it was probably due to the stress of breathing properly, getting there and being driven by people I didn’t know, getting used to a new hospital, etc. I had the weekend to process it all and it was much easier on the Monday as I knew what to expect. From that point on, it was straightforward.
I was scheduled for 25 sessions which equates to five weeks, although I started on a Thursday and finished on a Wednesday. The first 20 sessions covered the whole area and the last five were a “booster” to the site of the original tumour. I had a debate with them about some gel they gave me before the treatment began as, checking the ingredients I saw it contained parabens which are not a good ingredient and something I make every effort to avoid. Alternatives they offered were also not as ‘pure’ as I wanted so I searched for something I could use myself. This complicated matters as they were a bit leery about allowing me to use something they hadn’t approved! I couldn’t use an oil (it might aggravate the radiation effects) and I had to ring Green People about the baby lotion I wanted to use to find out whether it contains any trace elements of metals (which can also affect the radiation). It may contain tiny trace elements of nickel and cobalt found in the soil where some of the plants are grown. I reported this back and was very pleased when the nurse told me I could use it but only after the treatment when I got home and the night before, not the morning before. That was fine by me.
The radiotherapy has caused my skin to go quite red and it became a little itchy in places as time progressed. I gave the area a lot of Reiki which has eased this and the lotion helped too. As I am now getting hints of hayfever coming back I started my daily antihistamines which they suggested as a way of reducing the itchiness. Another side effect is feeling tired. As I was feeling very fatigued with the chemo, this is not something new and is likely to last for up to two weeks after the radiotherapy ended together with the redness and itching. As side effects go, though, this is all manageable.
There was a small waiting area outside the radiotherapy unit and there would often be someone else to say hello or chat to. One woman had checked out a swollen gland below her ear. She had no other symptoms (usually this is accompanied by a sore throat or discomfort) and they had warned her this might be cancer as indeed it was. She is now having radiotherapy to her throat and she told me she would have to have a tube inserted into her stomach as she soon would not be able to swallow food. That’s a tough thing to deal with. Back to the reminder that there is always someone experiencing a tougher time than you.
The hospital also offers complementary therapies and support from a representative of the Penny Brohn Cancer Charity. The latter offers all sorts of useful resources and help. I chose reflexology for my complementary therapy as I love that and I have already had three treatments with one more to go. NHS cancer units usually offer this as well, relying on therapists to donate their time and expertise for free.
The hospital has a gym and provides patients with what they call “exercise medicine” which is a tailored gym programme for about 12 weeks if you sign up to it. The benefits of exercising are well known in supporting recovery and benefiting health and I am enjoying my two sessions a week. My programme focusses on muscle development as it was pretty weak after languishing bed for so long with the chemo! I am now doing leg extensions, leg curls, weights and squats! Never thought I’d become a gym enthusiast!!
Last Wednesday was a special day as it marked my last radiotherapy treatment. In the waiting area near Reception there is a bell and a sign which says
Ring this bell
Three times well
Its toll to clearly say
My treatment’s done
This course is run
And I am on my way!
- Irve le Moyne
The now-widespread tradition of ringing the bell was introduced in 1996 at MD Anderson when U.S. Navy Rear Admiral Irve Le Moyne, a patient with head and neck cancer, installed a brass bell at the main campus Radiation Treatment Center there.
I am pleased to report that I rang that bell! Members of staff gathered round to make it an occasion and one recorded a video on my phone. I removed my hat which I wear most of the time because my head is cold in this weather! My hair is now about 5mm long so still very short but it’s coming along nicely and I don’t mind being seen as I am.
For me, Wednesday marked a real milestone. My main treatment is done and I can now focus on getting back to normal again. I will see my oncologist next month and the surgeon in June but hubby and I can now plan more enjoyable things and on a personal front, I can go back to my volunteering work and plan some courses in the second half of the year when I’ve had a chance to build up my strength and we know how the Covid situation looks.
Meanwhile, my meditation practice continues and the group I am part of is sending as much light as we can to a troubled world. Keep focussing on peace and the positive power of love. It counts, it matters and it makes a difference.
Love and light to you all