Wednesday, 20 January: I find it quite mind-boggling it is twenty weeks since I started posting these cancer diary updates. That’s almost five months. When I posted the first one it was with the knowledge I would have maybe seven months to live if I chose not to have treatment. Without treatment I’d have maybe a couple of months left – but I don’t know how many more the treatment may have bought me. Cancer and uncertainty go hand in had.
When I posted my update last Monday I had only six more radiotherapy sessions left. Even as I crossed each one off the printed schedule the final session never seemed any closer.
Before heading off for radiotherapy last Tuesday morning, a quick look at my blog post had me in tears at the messages of support and good wishes and love from so many people from all around the world. After my radiation session I had my weekly consultation with the specialist nurse. I thought I’d pulled myself together by then but she immediately picked up on my emotional fragility. I admitted as it became tougher to deal with the side effects, it became harder to ignore the elephant in the room, which was the uncertainty of what result the radiotherapy, and the chemo before it, was going to bring. It’s going to be at least six weeks before I have a scan to see what’s happened – to learn if the treatment has bought a few extra months or a couple of years. Most of the time, I can consciously put that concern on one side with pragmatic me accepting there’s no point in worrying over something I can’t control – that, however, doesn’t stop my subconscious from dwelling on the questions – how much time? Will it be worth it? Will I be fit again or will I be an invalid for whatever amount of time has been bought?
The nurse said: “Because of Covid, I can’t give you the hug you need but I can cry with you.” As you can imagine, that almost did for me entirely but I wiped away the tears and suggested she get on with the checklist of questions about side effects. She said: “It is worse when someone’s nice, isn’t it?” I agreed and proceeded to tell her the pain on swallowing is worse and the tiredness. I showed her the pouch of fluid. She said she’d mention it to the doctor.
Fortunately, before Tuesday became a total soggy weep-fest I had something enjoyable to do in afternoon lined up. Last week, I wrote about the woman who was prompted to have a breast lump checked out after reading my blog. I wasn’t sure if she wished to remain anonymous but she said she didn’t mind so I can call her by her name – Sarah. After we met in Maggie’s last week we arranged to walk in the Botanical Gardens and it really boosted my spirits and, I hope, Sarah’s.
It was a bright, crisp afternoon and I’m sure the gardens looked lovely. I remember we paused to look at a tulip tree and to mutter darkly about the presence of grey squirrels but mostly we talked, sharing family history stories and finding links between two families who are not connected – of course, we find a link – Clydesdale horses. It was so good to spend time with someone non-medical, just doing an ordinary non-cancer, non-Covid (apart from wearing masks and keeping two metres distance) thing. And if Matt Hancock wants to make any snide remarks about socialising rather than exercising I can show him the 14,000 steps I clocked up that day.
On Wednesday I had an unexpected consultation with my oncologist who wanted to check out the fluid pouch. It seems to be a bit of soft tissue inflammation caused by the radiation and not anything particularly worrying – one of those ‘keep an eye on it’ things. She prescribed a different antacid as the one I’ve been taking is no longer available and she also prescribed an oral morphine for the pain. She said she thought I was tolerating the radiotherapy well – my skin showed little redness, my energy levels were good and I’d been managing the swallowing and heartburn. I’m hoping it means I’ve escaped the need for a feeding tube, even if the side effects continue to worsen for a couple of weeks after the end of treatment. Just in case I became too blasé, she reminded me of the risk of inflammation in the lungs four to six weeks after the end of radiotherapy, which can – rarely – be life threatening.
It’s probably no wonder after the emotional tensions of Tuesday and Wednesday plus the long walk in the Gardens I was pretty tired by the end of the week. The DH came to the Village hotel to collect me on Saturday. As I was leaving the receptionist presented me with a lovely pot plant, saying how much she would miss me and our brief chats at reception. Tears again – they seem never to be far away.
I slept most of the weekend and then it was Monday and the day of my last radiotherapy session. We made good time up the road and I was in and out in less than twenty minutes. It felt very strange –none of the expected feeling of jubilation that it was all over – just a very flat feeling. I walked out of the hospital carrying my mask and met the DH in Maggie’s as I wanted to say goodbye to the staff there and thank them for their support.
Back at home, I crawled into bed and was asleep within moments, only waking when the throat pain became too bad and I’d to dose myself with the morphine and the antacid. I’m mostly worried about not drinking enough and becoming dehydrated. Yesterday was spent mostly asleep. When I woke I tried to drink and eat and to cool down the skin on my chest. It looks like I have been sitting for hours in hot sunshine with no protection. A cold flannel feels soothing for a few minutes then the heat from my skin makes it become warm.
This morning when I took the morphine I promptly threw up. When the nurse called to see how I was doing, she wasn’t concerned about my vomiting and said I should try again to take it, maybe after eating something. I did and it stayed down.
I went to the dentist this afternoon and she sorted the dodgy tooth which had lost the temporary filling she put in the evening before I started chemo. She suggested putting the flannel in the freezer (though not to put it directly on my skin) and I tried that and it was wonderfully cooling.
I’ve been awake for longer today – possibly because I have taken less morphine – and I’ve found the energy to write this update, and I ate a big bowl of mashed potato oozing butter and grated cheese, which slipped down smoothly. I know, though, I’m skirting round the issue of whether or not this treatment will have been worthwhile and six weeks is a long time to push it out of my mind.