29 March 2024. The second dose of radiotherapy today. Graham got us there in record time - no school traffic with it being Easter, little work traffic but we weren't sure how many would be heading to Manchester Airport. Hold-ups coming back on end of M61 and M6 up to M55 though - I guess Windermere would be a touch crowded today.
The session begins - as all the sessions will begin - with an MRI scan. This tells the medical team whether the tumour is still in the same place and roughly its size. The burning sensation I had on day one turned out to be something I can expect more of as the treatment goes on.
I've been working on an oil pastel of a street scene in Bristol from an old postcard view. There will be no progress on the painting today - once I get home I'm yawning so much I'm in danger of swallowing my computer screen...
2 April 2024. Today was radiotherapy day 3 of 8. Thanks Graham Astley once again for doing the driving to and from Christies. Managed to stay awake for the trip home but zonked for the afternoon. A day off tomorrow before going back for the 4th dose on Thursday. The waiting room for the radiotherapy is huge and always full. I'm not sure just how many machines there are (each in their own large room) but it's a lot. I am usually in Radiotherapy Room 4. There are at least 12 machines.
Once you have had your MRI you wait around another 20 minutes before going into the Radiotherapy room. Meanwhile some people will be going home (or back to their ward if they are staying in hospital) and new patients will be arriving. Some sit in the waiting room on their own and some seem to bring their entire families. Some sit there making conversation with whoever they have brought with them. Some sit quite still, looking worried. Some sit or walk about terrified, some in tears, some saying how they can't go on with this or that they don't want to go on with their treatment.
I always felt a huge sorrow for these people. My own experiences told me that it really wasn't that bad. Sometimes I had pain but it was usually just pain that could come at any time not because of the machines. Yes, there is some discomfort during your 20 minutes inside an MRI tube, mainly from your inability to move, to rub an itch, to wipe your nose or eyes, or discomfort from the pauses in breathing, or the placement of aparatus across your abdomen. Even the sheer noise.
Once in the Radiotherapy Room my greatest problem was the cold temperature of the room and sometimes the sudden movement of quite large parts of the machine rotating around you can make you jump. Also once your treatment starts you will be lying in this large room totally alone. The operators will be in touch via speakers if they need to speak to you and will every now and then make sure you are ok. They can see you too even if you cannot see them.
I haven't played guitar since shortly after the cancer diagnosis. It rests just over the liver and could be painful. But try this to the song "Every Little Thing She Does Is Magic" by The Police :-
Every little stab just make me moan
When my side starts burning it is tragic
When there is no loo I want to go-o-o-o-o-oh
The latter is a real problem. I'm ok in the house but anywhere else once you feel the urge to pee it takes only seconds before you are desperate to the point of being in pain and scared of being unable to control yourself. During COVID it was a real problem as many public toilets were closed and even a shouted "I HAVE TO GO! would have no influence over a jobsworth. We did once have to screech to a halt outside an early morning coffee shop so I could dash in as best as I could, doubled over, to head with just a mute pointing to the toilet which was thankfully empty. Plan outings carefully.
4 April 2024. Halfway through! A couple of "incidents" on the motorway - one looked like a "Hullo Sonny, you're nicked!" one with a van surrounded by police cars and vans. Got to Christies again thanks to Graham and got booked in early. Got called in early too which was a surprise.
I usually snooze the afternoon on the sofa but today went up to lie on the bed as my side was quite sore - I'm wondering what next week will be like with 3 treatments over 5 days. But it will leave me with just one final visit. I'm told the dose keeps working for two weeks and then another MRI probably at the 6 weeks point to see what effect it has all had.
8 April 2024. Five down, three to go. Thanks to Janet Astley who took over from Graham today as he had to go to a meeting. Jan and I met at school aged 11. Just a short while ago...
10 April 2024. Yesterday's trip was 6 of 8, the end is in sight. Thanks once again to Graham for doing the driving. Just one more visit this week and then a final visit on Tuesday next week.
12 April 2024. Penultimate treatment at Christies. It was an afternoon appointment and they were busier than we had ever seen them. A little late going in but all went well. Graham was there to drive us and give me a helping hand out of the car and to say gently and patiently, "take your time, stop if you need to," whenever I stumbled or caught a foot on nothing walking down the corridors after the treatment. I have tended to make little of this but the sheer exhaustion cannot be underestimated.
As mentioned above, we have seen a few other people over the weeks on the verge of tears saying "I can't do this anymore..." but today whilst I was lying on the cold bench with what felt like a cricket ball pressed hard into my middle and whirling machines trying to bring out my super powers, Fran saw a chap just burst into heart rending sobs in the waiting room.
It's hard. Probably the hardest thing I've ever had to go through and I wouldn't wish it on anyone. The staff at Christies are awesome, the pressure on them must be enormous and I always try to make them laugh in some way, even if it's only that they shake their heads at each other and say "silly old sod!" when I leave. Most days once we get back after a coffee and perhaps a bite to eat that's me zonked for a couple of hours.
I now have 3 days "off" with my final treatment on Tuesday. Apparently the side effects (in my case the tiredness and burning feeling on my right side where the radiation goes in) will last - or "culminate" is what they actually said which makes me wonder whether it gets worse - for another two weeks after the treatment ends.
Then a gap of four weeks before an MRI to see if it's all been successful. It usually takes another four weeks after an MRI to get results so potentially ten weeks to wait before I get any news. For all and anyone going through similar stuff, you have my respect and my good wishes. You can - and should - do it some more.
Those reserves are deep down inside you and by the end of it you may wonder where they came from, but when you need them, come they will. I still have all my colour in my face, I don't look ill, I don't act ill unless I really, really can't help it, but people saying to my face "No you haven't got cancer - look at you..." you will never know just how angry that makes me even if I don't show it. Don't say it even if you think it.
Roll on Tuesday. Thanks to all those many people who have given me support, hugs both physical and virtual and shown love and help. You are bloody wonderful! I'm especially aware of what a huge worry and burden this has been on family, especially Miss Franny who has herself gone through a different form of cancer in the past.
17 April 2024. Our last visit and treatment for the present went ok yesterday. Thanks go to Mags Cummings for inviting us to her house nearby to rest before driving back, lovely to see you again Mags and thanks for the hospitality. Journey back was fine. Today has been spent asleep or dozing or merely just exhausted. Off to bed again now, life is just too hectic. Night all...
27 April 2024. Typical day in the life at the moment - lots of people complain of sleep breaks, where they can only sleep for short periods. For most of this week I've been having "awake breaks"...
The day goes like this: Wake up, shower, shave, go downstairs to make breakfast. An hour later reminded by Miss Franny to make breakfast. Make breakfast. An hour later realise I've not eaten it yet. Eat it. Half an hour later am woken from doze by Miss Franny to tell me my coffee will be stone cold. Drink stone cold coffee.
Doze until dinner. Have soup and toast or similar for lunch sitting under supervision next to Miss Franny. Woken up to be sent to bed for a couple of hours. Sleep. Woken up in case Grace calls on her way home from school. Sit dazed by rapid progression of videos on her phone of 20-30 year old girls with annoying American accents blowing hundreds of dollars at a time on soft toys.
Once Grace has gone watch "Pointless" to keep brain from going to sleep whilst I have tea. Afterwards ask Miss Franny who won and put on something interesting to watch. Wake up when it is finished and ask Miss Franny what happened... Go to bed. Read until woken up by book hitting my face. Sleep. Repeat...
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