MarySmith’sPlace ~ Cancer Diary #19

LA6 – Linear Accelerator

Monday 11, January 2021: Back in Edinburgh for another set of six radiotherapy treatments. I’m confusing myself by starting my diary update with today’s date and writing it up retrospectively. Right now, I’m easily confused and very, very tired so I’m going to do this update – and probably others – chronologically.

Tuesday 05, January: I had my meeting with the specialist nurse after my treatment today. She went through the check list of symptoms. I admitted some solid foods were more difficult to swallow – especially bread. She checked how much of the antacid with Oxetacaine I’d been prescribed as apparently there’s a problem with supply. We chatted for a while about lockdown and how different it is when stuck in a hotel on your own in a city that’s closed than being stuck at home under lockdown. It wasn’t until I’d left the hospital I remembered the questions I’d written down and forgotten to ask.

Wednesday 06, January: There was a warm Danish pastry in my breakfast bag this morning but as soon as I took a bite I regretted it – swallowing it was so painful but I had no choice but to get it down.

After my treatment I mentioned to one of the radiographers I’d forgotten to ask some questions when I met the nurse – do I need to continue taking folic acid, when is it OK to have dental treatment and could I get clarification on the instruction about leaving one to two hours either side of the antacid with Oxetacaine before taking other medication?

No problem – we’d go and find a nurse to ask. It kind of got complicated after that!

Questions one and two would have to be put to the doctor. OK, no problem. The nurse asked some of her colleagues about the timing of other medications with the Oxetacaine – no one had heard of this. Where had I heard this? I explained it was outlined in the letters the pharmacist had put in with my bottles of medication – one for my GP and one for my community pharmacist. Finally, she asked if I would mind going back to the pharmacist to ask him to clarify things. I have a feeling she thought I’d made it up or was confused.  

Before going to speak to the pharmacist I went to Maggie’s to meet a friend. I mentioned some weeks ago that someone reading my blog was prompted to have a breast lump checked out. Now, she is also attending the Cancer Centre in Edinburgh for radiotherapy. It felt really good to meet up for a coffee and a chat – it felt like bringing a little bit of normality into our lives. Of course, we talked about cancer – our own, in particular – I guess this is our normal for now.

When she went off for her treatment I spoke to the pharmacist about the Oxetacaine. He confirmed there should be the one to two hour gap for any other medications – even paracetamol. I asked if I could take a copy of the letter to GPs to the nurses who prescribe this medication without knowing about the problem of absorbency of other drugs.

One of my oncologist’s registrars phoned later, to say I don’t need to continue with folic acid and as long as my dentist is aware of my medical history and medication it’s fine to undergo dental work. Goodness knows when that can ever happen – I’m only home on Sunday for now. Just hope I don’t wake up one morning to find the tooth has completely crumbled away. I was a bit taken aback that she thought I was still on injections to prevent blood clots when it was changed to oral medication months ago. Maybe she’ll update my notes.

Covid cases and deaths increasing here and riots in the US Capitol Building. It’s been a full on day.

Sculpture of Maggie Jencks outside the Maggie’s Centre, Edinburgh

Thursday 07, January: For some reason my appointment was very early today – 8.30. I did make it on time, but I hadn’t had a shower or brushed my teeth. The radiologist laughed, saying: “It’s OK, we wear masks.”

I took the letter to the nurse – of course, the one I saw yesterday wasn’t there. I did feel a bit reluctant to hand over the letter to someone who probably knew nothing about the discussion so she had to hear me out while I explained and showed her the relevant part of the letter. She said: “This will be useful because we prescribe this medication to a lot of patients.” I don’t know why the information isn’t widely known – but I feel I’ve done my bit.

Swallowing is becoming increasingly painful. Solid food is difficult – who knew I’d be tempted by Pot Noodles? Slide down nicely, once cool enough.

Friday 08, January: After today’s treatment I asked the radiologist how much worse my throat was likely to get. I suppose what I wanted to know was how far away from the feeding tube am I? I just needed a bit of reassurance. She told me stronger pain relief could be prescribed if it becomes worse but not to expect it to go away as soon as the treatment is finished because the radiation carries on working for a few weeks. She suggested I went to Maggie’s instead of going straight back to the hotel. It was a good idea – just to relax and read in lovely surroundings.

Saturday 09, January: I admitted to the radiologists this morning I was beginning to lose confidence in my ability to cope with the treatment and its side effects – the throat pain, the fatigue and now some interesting little pouches of fluid appearing on my neck. They said to keep an eye on the fluid pouch, reassured me, again, stronger pain relief is available and said I should rest as much as possible. I shouldn’t feel guilty if I fall asleep whenever I sit down.

The DH brought me home, made the mushroom soup I had a fancy for and told me he had recorded Holby City, for which I managed to stay awake.

Monday 11, January: Back to where I started this post. I had a lazy Sunday before reluctantly re-packing my suitcasefor Edinburgh. Today’streatment was number 14 – only six more to go. Throat pain still manageable – take the Oxetacaine 15 minutes before eating and two paracetamol an hour later plus dozens of strong mints.

To assist my body in its attempts to recover from the onslaught of radiation I’m going to take a break from social media for a week. I’ll check in to reply to comments. This post has taken me ages to write. I hope it isn’t terribly boring.

103 thoughts on “MarySmith’sPlace ~ Cancer Diary #19

  1. You have such strength in your words and descriptions, Mary. It is admirable. There is something too about the sculpture of Maggie Jencks you show in this post which is very strong, but also weary knowing the path you’re on is an exhausting one. It is reflective of your writing and what you are going through. You write something I think is important, “I admitted to the radiologists this morning I was beginning to lose confidence in my ability to cope with the treatment and its side effects…” from your tales of Afghanistan and your writing over the years, you pride yourself in being strong but there is also a time to share the strain you are under. Wishing you well, and hopefully the pain in your throat will subside quickly. Take care.

    Liked by 1 person

  2. Never boring, Mary. We’re rooting for you the whole way. The details are important and give me an idea of what you are going through, as well as places to hang my prayers. Sending you warm hugs, rest as much as you can. Your body is working hard! ❤

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  3. I can only imagine how tiring and traumatic all this is for you, Mary. It’s wonderful you’ve managed to write so much to keep us all informed about all the complications and how you are. I’m sure no one will mind if you can’t reply. I certainly don’t; you’ve enough on your plate as it is.Just know I’m sending best wishes and strength to you.

    Liked by 1 person

  4. Donna found the radiotheraphy the hardest, Mary…you are doing great so just go with the flow , rest as much as you can knowing we are all rooting for you..No need to answer comments we all understand just look after yourself and rest Hugs xx

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  5. Keep going Mary. Your exhaustion is palpable in your post . Save your strength to get through the treatment. So many people are thinking about you and willing you on and you always get a mention in pilates! I hope you can draw some strength from that. Don’t forget your kick ass boots! 🤗

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  6. Yes Mary you are never boring. Infact you are inspirational to us all. You are going through so much and having to do most of it on your own . We are all willing you on and wishing you well. huge hugs to you 💜💜💜💜💜

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  7. Take care of yourself, rest when you can, and just focus on getting through this uncomfortable treatment as comfortably as possible… we’ll all still be here waiting for you afterwards ❤

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  8. Not boring at all, in fact it must be an enormous help to anyone undergoing treatment and as we all know any one of us might be diagnosed on any day, you must get this into a book – a reference of what to expect and how to react. Lots of virtual hugs (((( ))))

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  9. Hi Mary. I don’t know how you manage to summon the energy to write all this to keep us up to speed on what’s happening but thank you! It’s certainly not boring – it’s a very courageous battle. Scrambled egg is good too!
    Juliet xx

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  10. Boring? Heart-rending, is more like it. Unless a person has undergone treatment for cancer, no one can comprehend what patients must endure. Your blogs have brought us with you on your journey—made all of us more aware and more grateful for the gift of health, which we take for granted. Your words will remain with us and your courage will inspire us. Thank you, Mary. Prayers for healing and hugs for comfort. 🙏🏻💗

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  11. Mary, it’s not boring at all … rather it is compelling as your write with such clarity and heart about your week. I am flabbergasted but not at all surprised that you had to inform the doctors and nurses about the medication reaction with other tablets and how to take them. I feel so for you and the pain and fatigue you are enduring. Thinking of you so much as you head for your last six courses of treatment. hugs xx ❤️

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  12. Hi Mary, thank you for sharing this update about your treatment. I didn’t know much about radiation therapy but it doesn’t sound very nice at all. At least you only have one week left. I am glad that your reader checked out the lump and hopefully caught her cancer early. We caught my mom’s early too, thank goodness, and she’s recovered well. I think about both you and Sue and pray for you both.

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  13. These posts are not boring at all. It is good to hear of your progress but sorry to hear about the difficulty swallowing. Hang in there, you are on the home stretch. WE are all cheering for you. Please don´t respond, save your strength. xo

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  14. Sorry the throat problem is not easing. The travelling makes it so tiring for you, wihout the pressure of the treatment. When/if you get to see the dentist ask if he’ll prescribe Duraphat for you. Another side effect of chemo (that they rarely mention) is crumbling/breaking teeth. The Duraphat has a high fluoride content to try and strengthen the teeth. All the best for this week xx

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  15. You are never boring. The information and the emotion you pack into each word have us gripped… I’m stressing a bit over you and Sue at present, so any comments I make may be totally inappropriate. If I sound hard hearted it’s just my shell closing around me.
    We’re all thinking of you, just never knowing whether it’s getting through.
    Keep taking the soup.
    J and the boys, especially Roscoe ❤

    Liked by 1 person

    • Thanks, Jemima. I’ve never noticed you making any inappropriate comments – or sounding hard hearted 🙂 Believe me, the support from you and everyone else is definitely getting through and appreciated – though I was a bit weepy today reading the lovely comments. Love to you and the boys with a special pat for Roscoe.

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  16. Mary I hope it cheers you up to know that I am currently reading No More Mulberries and loving it. Can’t wait to review it for you when I’m finished. Hang on in there, what a time you are having. Pot noodles hey. That made me feel for you even more. Sending love and light. Marje x

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  17. Mary, I am so sorry you are experiencing such difficult side-effects from your treatments. Your ability to cope amazes me considering all that is happening in the world added on top of your radiation. I have not been able to keep up myself, so for you to adjust your schedule with blogging is probably a very good idea. You continue to be in my prayers – I think of you every day. Focus on taking care of yourself and try not to worry about the rest of the world.

    Liked by 1 person

  18. Thanks for sharing your journey with us Mary. You are far from boring, and from what I read, you may have just saved somebody else’s life. This is why we write – to enlighten others. Yes, rest. Jot down your thoughts in a journal then when you’re up to it, write a post. 🙂 xx

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