MarySmith’sPlace ~ End of treatment – Cancer diary #20

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.

Grey Squirrel

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.  

Winter sunshine

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.

Me and Sarah after our walk

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.

My radiotherapy schedule – as I’m the patient, I’m ignoring the need for patient confidentiality!

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.

My mask – planter? art work? lamp? hide it in the attic?

160 thoughts on “MarySmith’sPlace ~ End of treatment – Cancer diary #20

  1. I’m sitting watching the birds sunning themselves on the hawthorn hedge, the sun’s weak yet but it will strengthen as will you as you rest and recover from the battering you’ve just undergone. As everyone’s said six weeks might seem an age but we need time to adjust – there’s still the up ahead to deal with. I suspect team Mary will be with you all the way and if thoughts are prayers you have an abundance. As for the mask, it’s beautiful – a badge of courage to be proud of. x

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    • It has been a sunny day here, too, Steph, which always makes me feel better. I do feel I’ve undergone a battering. The first few treatments seemed so easy but the side effects are cumulative and don’t appear in the early treatments. As I said to Joy in a comment now is the time for me to regroup and rebuild my strength both physically and mentally for whatever I’m going to find out in six weeks. I have become quite fond of my mask 🙂

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  2. A huge soft hug for getting through your treatments, Mary, with such courage and fortitude. Tears are a release and natural for them to flow with displays of kindness. You need an outlet, my lovely. Your walk with Sarah sounds just the ticket and it’s a happy photo. I may be tempted to paint and plant up your mask as a garden ornament, as I am not surprised you feel attached to it. She’s been part of your armour and can be there keeping you company in your garden as you plant new seeds for many years to come. Wrapping you in much love and healing energy. ❤

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  3. I’m grateful that you met Sarah and that the two of you have been able to have some time together enjoying the outdoors. What a wonderful community of friends you have. Keeping you close in prayer and hoping the next six weeks bring a sense of peace and healing.

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  4. It was so nice to see you in your cameo appearance at Pilates the other day. I hope you could hear all the good wishes coming from us all…
    What a lovely thing to do to lift the spirits – walking round the botanical gardens with Sarah:
    Iremember them well – although it was summertime when I visited them – I’m sure there was plenty to see – even more interesting in a way to find out what thrives in January!
    I do hope you begin to feel better soon and can walk locally again.
    The snowdrops are coming out. Cally Gardens will be delightful. Thinking about you.

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    • Thanks, Sue, it was lovely to see people briefly and I’m going to try to make class tomorrow – unless I’ve fallen asleep after breakfast. I told Shona I’m likely to fall asleep any time – my eyes just close! It will be good to get out walking here again. I’m sure the gardens were really interesting but we talked so much I’m not sure we noticed very much 🙂

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  5. Okay, now I’M crying. I find that the older I get, the more emotional I am. I saw that in my dad when he got into his 70s – he always apologized because if we talked about something sweet (like my childhood) or listened to a particular jazz album he really loved, he’d start crying. Which of course made me cry. “I’m sorry,” he’d say, but in my mind, better to feel MORE not less as we age. And I feel such hope and love for you Mary, as you share your “life with cancer treatment” with us. You are a star, a bright loving star, in my mind. Now, get some rest and enjoy everything in your sight now …. even the grey squirrel. 🙂

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  6. It’s been a marathon, Mary and I’m so glad you’re out the other side. Enjoy some down time and wishing you all the very best moving forward. You are in my thoughts. xx

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  7. Mary – you are a trouper. I’d suggest the mask as an internally lit Hallowe’en decoration beside the front or back door ? Six weeks is long enough to feel a bit less ragged and sore, to do the Great Garden Birdwatch, and to read, walk, and eat mashed potato. Or slithery pasta. I loved the way your Edinburgh contacts all had suggestions as to how you could adjust your solutions – flannel in the freezer, kindness a killer in the tears department – and I think I’d suggest an ESSENTIAL potter at Threave, if accessible, as part of your six week inter-regnum. Take nothing but comfort during that time.

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    • Thank you, Jennifer. I’m hoping the soreness and exhaustion will wear off over the next couple of weeks letting me enjoy the few weeks leading up to the scan by keeping occupied. I’m not sure if Threave Gardens are accessible just now but the walk by Threave Castle certainly is and always offers plenty to see. I’m going to have to investigate how to light up the mask internally – but I don’t think I want it to be scary – it is me, after all 🙂

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  8. All the best Mary. This diary – I can’t believe you’ve been posting it for 20 weeks. What a journey – brave, informative, detailed, angry and you managed funny an impressive number of times too. The mask? Auction it? Donate it to a hat shop? Decorate it and hang on the front door? Wear it in Sainsbury’s to ensure social distancing? Take care and I do hope those results come out on your side. Still hoping to visit you in Scotland one day.

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    • Thanks for your kind comments about my cancer diary, Jessica – so glad there have been funny moments along the way. I thought your idea to wear it in the supermarket to ensure social distancing was a good one until I remembered my eyes are shut when I wear it and although I could open them slightly I couldn’t wear my glasses so that idea may not work after all. It would be lovely if you could visit me in Scotland – and that’s possibly Covid rather than cancer permitting 🙂

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      • “possibly Covid rather than cancer permitting” are very optimistic words and its lovely to read them. Excuse delay in response, have had own family business to sort out this week, but Scottish visit not an empty threat as I have cousins in Edinburgh and friends in Stornoway. My grandfather was from Paisley, and I should have been north of the border more, only stopped by the weather. Hope all progressing well for you x

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        • Nearly missed your reply, Jessica. I hope all is well with your own family. I didn’t take the possible Scottish visit as an empty threat – always happy to show people the south west of Scotland has much going for it (if maybe on a lesser scale) than the Highlands.

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  9. I’m so glad Sarah and you met and had that lovely walk together, Mary. It must have helped you both so much. And these 20 weeks seem to have flown by since you broke the news to us all. So pleased the treatment is over.
    Take care. Sending you lots of hugs
    xxx

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    • Yes, it was good to be doing something so ordinary, Hugh. Time is doing strange things at the moment so in some ways the 20 weeks have flown by but it other ways they have taken forever. I suspect the next six weeks until the scan are going to be a similar mixture of speeding up and slowing down – and actually, it’s not the scan, it’s the result I’m in limbo waiting for. At least I can start to recover from the treatment! Thanks for the hugs.
      I was thinking about you the other night when watching ITV’s drama It’s a Sin written by Russell T Davies – it reminded me a little bit about when you posted your memoir about coming out in London.

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      • We binged-watched the first three episodes yesterday, Mary. I love Russel T Davies’ writing. Although the main storyline of ‘It’s A Sin’ is sad, I enjoyed watching it because 1980s London brings back so many happy memories. I particularly liked the welsh character – Gordon (or Gladys as they nicknamed him). He’s so innocent. All I wanted to do was give him a hug. And what incredible feedback from you that the show reminded you of the series I published on my blog a few years back. The thought of Russell T Davies reading your comment and asking for my diaries from that period and making use of them is a thought that crosses my mind.

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        • It would be easy to binge watch it but I’ll going to eke out the pleasure by sticking to the TV schedule 🙂 I really enjoyed the first episode. The writing is brilliant (what else could it be?) and there’s so much life and humour and fun in it although I know we’ll be shedding many tears before the end. I thought you would like the Welsh character 🙂

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