MarySmith’sPlace ~ Cancer Diary #16

Monday, December 21: The day after my last post, I received a call from someone – I think a nurse – saying the oncologist had asked her to let me know she had decided to go ahead with the original radiotherapy. I started to protest about having had eight days of wondering and worrying but realised there was no point in shooting the messenger. She also asked if I’ll like a room booked at the hotel – yes please. And would I like a taxi to take me to and back from the hospital – no thanks. It’s a fifteen minute walk.

On Friday, the oncologist called to say she had changed the schedule! I was less reticent about the chopping and changing. She explained it was because she was concerned about the fact I was having double doses of radiation on three of the days and felt there was a safety issue and it could increase the side effects. Understanding the reasoning behind the changes made such a difference to how I felt.

I won’t be having double doses and will have two Saturday sessions and a final one which will mean coming up and returning home on the same day. She said she’d booked the hotel room and made the arrangements for the extra Friday nights. When the DH checked, the hotel hadn’t had any NHS bookings but the very helpful receptionist said she’d contact the booking person. She called back to say it was sorted. I dread to think how I’d have reacted if we arrived to find no room at the inn.

While I had the oncologist on the phone, I used the opportunity to express some of my concerns, not least that there seemed to be no channel of communication between patient and the consultant. I totally understand we can’t have a direct phone number – consultants would never get their work done with patients calling all day with queries. But, I did want to know there was a way of getting any questions to her. She said I could always pass a message via the specialist nurse.

I said I wouldn’t trust her to pass on a message. There was a pause at the other end so I asked her if she ever received the research papers I’d sent. Another silence then, “No, I didn’t.” This, despite the fact the nurse had told me she’d pass them to the oncologist.

“That’s when trust broke down,” I explained, “and it’s not possible to repair things.” I didn’t tell her about the little power games she plays, like withholding my blood results until I ask, and finally, insist on knowing them. I think perhaps I did mention her voice, which oozes sympathy, but no empathy.

“Well,” she said when I finally shut up, “if it’s any consolation to you, she’s leaving after next week. I think her replacement is excellent.”  

Though she probably won’t ever call me again – our conversation took as long as our last face to face consultation – I felt quite buoyed up by the time the call ended. Explanations to make sense of things, communications are wonderful things.

As the day of my first radiotherapy approached, I found it difficult to sleep. Even when I told myself it would be fine, thousands of people have radiotherapy without major problems, friends have shared their stories to reassure me – but my subconscious clearly was not listening. The main worry is that my throat will be so sore I will first need morphine and when that doesn’t work a feeding tube. My oncologist has told me about these side effects so often they are seared into my brain. I told her if I needed a feeding tube it would have to be a peg tube in my stomach as there was no way anyone could get a tube up my nose. Then, I started worrying about how I could have a tube (down my throat) while wearing that mask.  

The DH drove me to Edinburgh. I checked into the hotel. We went to the Cancer Centre. Someone took off for a chat about everything – when I expressed my fears about feeding tubes she said it was not likely I’d need it – I would have a sore throat but they could do something about it before it reached the stage of needing a feeding tube. As for the mask – apparently they cut a hole in it for the tube – so I know it is sometimes necessary, but am trying not to dwell on it. She said I’d be fine for the first week and would be able to eat Christmas dinner without a problem.

Finally, I was called into the room where it all happens. I can’t tell you much because the moment the mask goes over my face my eyes are shut, so although she had explained the bits of machinery moving around she said I’d see, I didn’t. A few minutes of wrestling with the mask, which as tighter even than the last time (is my face getting fatter?), and the radiographers leave the room and there’s just me and the machines.

The actual treatment took only two or three minutes.

It’s the winter solstice and the days will start to lengthen, even if we aren’t aware of the change immediately, so I hope it’s an auspicious day to start the radiotherapy – one down, 19 to go.  

93 thoughts on “MarySmith’sPlace ~ Cancer Diary #16

  1. Yes. The Solstice. And you are over the hump.
    I hope your throat isn’t too sore, and I hope you won’t lie awake worrying about the next one. Just kick that damn lumps arse and think good thoughts. Like Roscoe objecting that he doesn’t spread his kisses around too much, only to important people like you.
    ❤ ❤

    Liked by 2 people

  2. Your story must be helping many people, Mary. It is not just the courage you display, but also how you recount the everyday fears; sleepless nights, feeding tube, holes for masks, etc. You are answering questions that many others must have.
    The nurse who is leaving worries me though. Why would such a person go into the field of health care in the NHS, study for so long to become a specialist in Oncology, and then decide who she will pass on messages for, or who to reassure? She sounds as if she has a serious personality disorder, centred around the fact that she likes the relative ‘power’ of her role.
    As for the solstice, I am saying it’s a GOOD omen!
    (Too cloudy and damp here to see the big star though.)
    Best wishes as always, Pete. x

    Liked by 6 people

    • I’m delighted if my blog posts help others in any way. When the radiologist today asked if I had any questions (don’t think she expected quite so many) she did say very few people knew much about radiotherapy – people tend to have more of an idea about chemo or surgery but radiotherapy remains a mystery. I’d only just discovered how many different kinds of external radiotherapy there are and no one had told me what kind I was having!
      The nurse – well, there are quite a few of her ilk, unfortunately. Power goes to their heads – like traffic wardens. She is the link between the patient and the oncologist and I think she interpreted that as meaning she had to save the oncologist from being bothered by patients’ questions. I forgot to ask the oncologist when I could have dental treatment – the temporary filling put in the day before fist chemo has come out and I need to know if I should have another temporary one or get a proper filling. I asked the nurse who told me to see my dentist and ‘you can run it by me whatever she wants to do and I’ll decide.’ No way am I going to tell my dentist I have to ask a nurse if it’s OK to have the treatment she wants to do.
      The sky is clearing here but there is so much light in Edinburgh it’s not easy to see any stars, never mind ‘the’ one 🙂 I know it’s there, though.

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  3. I´m so glad you got to speak to someone and have someone actually listen. I am impressed at how brave you are. From where I´m standing, you are totally on top of this. Glad you will be able to enjoy your Christmas dinner. Sending Christmas hugs. xo

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  4. Glad you have kept us updated Mary and good to hear the first day is under your belt and your feelings about your specialist nurse are off your chest… particularly as I hope that is she is leaving the consultant might think it worth having a word with her.. but she is unlikely to warn her future employer because of legal issues. Anyway.. hopefully your next nurse will be excellent.. good job on today… and glad they are spacing the treatments out.. have sent you an email…about honey..xxx♥

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  5. Glad the radiotherapy’s underway. As you say, that’s one down and you’ll soon get used to it but I hope your throat isn’t too sore. What a relief that nurse is leaving – her attitude is the last thing you need. Hopefully her replacement will be much more humane

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    • I’m very relieved the first one is over, Katy and I know what to expect for the following ones. It’s not knowing what’s about to happen that is so scary. I’m still worried about the sore throat but the radiographer was quite reassuring about being able to provide things to help – long before a feeding tube might be required! I’m not sure when I’ll meet – or speak on the phone to – the replacement nurse but I’ll be sure to report back 🙂

      Liked by 1 person

  6. Mary, thank you so much for continuing to share your experiences and your feelings with us. You’re answering questions other people may be too shy or scared to ask for themselves or for their loved ones. Very relieved to hear that the awful nurse is leaving and I hope she’s found a job well away from patients such as yourself who deserve all the care, respect and admiration in the world. I hope you enjoy your Christmas lunch. Thinking of you every day.

    Liked by 2 people

    • Wendy, your comments are so kind. I do know some people have found the cancer diary updates helpful and that’s made me feel it’s worth doing them. I should maybe say in the post I’m happy to answer anyone’s questions, privately, if they want. As for the nurse, I think she probably started out as a good, even excellent nurse, but let the power of her ‘specialist’ title go to her head. There are wonderful nurses in the health service and it’s unfortunate the few undermine the work they do. I think I’ll do justice to Christmas lunch – hope you have a happy Christmas, whatever you are doing.

      Liked by 1 person

  7. Re the staff member leaving unfortunately there are many like her – but here’s hoping you get one of the good ones! Yes, the turn of the year. Spring somewhere up ahead. A hopeful thought. xxx

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    • It is unfortunate there are many like her, Janette. The nurses who are good must sometimes despair. Spring is coming and I’ve lots of spring bulbs coming into bloom to look forward to. At one time I questioned the point of planting those bulbs.

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  8. Well done, Mary – for speaking out, voicing your concerns, not just for yourself but for others going through similar situations, and getting someone to listen. Certainly the Solstice and treatment lining up is a good omen. Sending hugs and will be thinking about you on Christmas day..

    Liked by 4 people

    • Thanks, Judith. I have a feeling lots of us keep quiet – don’t want to rock the boat. The oncologist has over 100 patients – far too many to have enough time to listen to each of us. That then leads to all sorts of ethical questions – would it be better to have fewer patients and be able to listen and explain to them? In which case what happens to the others? I don’t have the answers, though I guess good specialist nurses could be a way of partially solving the problem.
      I hope you have a happy Christmas, Judith, whatever your plans.

      Liked by 2 people

      • Putting more money into the NHS would be a good start to getting good specialist nurses trained, Mary. Perhaps completely cancelling a certain new set of train tracks would help. Our daughter in the ambulance service is so stressed, we worry about her and our hands are tied; unable to say anything. So lots of thumbs up to you for speaking out for so many and giving that certain. boat a little rock..We are so lucky that our daughter lives in our flat attached to our house – she’s working all over Christmas so I’m cooking for us, her, her husband and son. We are together if socially distanced. I hope you manage lots of online togetherness with your son. And have a restful time.

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  9. Oh, the joy of venting spleen – so many people are intimidated by the likes of that one, as ever your marching through the turn of the year scattering light, humour and optimism. I’m sorry you won’t be able to see your son for Christmas and praying for the no-tubes route for you. xxx

    Liked by 2 people

    • Thank you, Steph. I wasn’t intimidated by the nurse but I knew I couldn’t say anything critical about her when we were in a consultation with the oncologist because she would be duty bound to defend her nurse – and I didn’t think I’d ever get to speak to the oncologist without the nurse being present. Anyway, I’m relieved she’s going. I wonder if she’ll phone to say goodbye? 🙂 I hope your no-tubes route prayers are answered! Have as happy a Christmas as you can.

      Liked by 1 person

  10. Glad you got to talk to the oncologist and have your concerns addressed. At least the treatments are of short duration. Why does the mask need a hole for a feeding tube? Isn’t it used only during the procedure?

    I hope your throat isn’t sore. I also hope the radiation therapy makes the tumor disappear. It’s Christmas, and I want to believe in miracles!

    Blessings and hugs, Mary.
    Linda

    Liked by 2 people

    • I’d like to believe in miracles, too, Linda 🙂
      The mask is only used during the radiation procedure but if they didn’t have a hole cut in it for the tube it would flatten the tube. It really is a tight fit. The alternative, which terrified me, was that they would remove and replace the tube every day. Not going to think about it – I’ll have nightmares.
      I’m so hoping it won’t come to that. Wishing you a happy Christmas, Linda.

      Liked by 1 person

  11. Thank you for the update on your treatment, Mary. Like most people, I know very little about radiation therapies, even though my mother and my brother both had it. I was very glad to read that you were able to have a frank conversation with your doctor and the power-mad nurse is leaving. It sounds as though other patients complained about her as well. Sending my best healing thoughts your way.

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  12. Well done Mary again your telling it how it is and helping others in the process. I love that you told the oncologist your concerns and got some answers. The “special nurse” is not as uncomon as one might think I have met a few. Keep those boots shining 💜💜💜

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  13. Well done Mary and thank you for keeping us all up to speed on what’s happening. the nurse sounded like a fiend, I’m glad she’s off soon. Good luck with the rest of the treatments.
    Juliet x

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  14. I’m thankful you have a chance to beat this tumor. You have the prayers of so many.

    I just learned about someone today who has been doing yard work for years at workplaces. He seemed to be fine, until he suddenly wasn’t. Ended up he had a huge cancerous tumor in his gut. By the time it was found, all the doctors could do was send him to hospice.

    Liked by 1 person

    • Thank you, Joelle. It’s been humbling to know how many people are rooting for me (and for Sue Vincent).
      Sorry to hear about your friend. It sometimes seems astonishing to me they ever do find cancer in the early stages. I had no symptoms until the blood clots which is when they found the tumour, which was already pretty big.

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  15. Here comes the sun! An auspicious day to begin treatment, I’d say. Thank you for sharing the details, it helps to imagine the process you are going through. Glad that horrid nurse is going, let’s hope the next one has excellent people skills and is on top of his game. Wishing you well, Mary and enjoy the small pleasures of the Christmas holiday, it’s the season of Light in many ways. ❤ _/\_

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    • Thank you, Kim, I’m certainly up for a miracle to eradicate this tumour. At least today the sun is shining which always makes me feel better. Returning the love and best wishes – from Scotland 🙂

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  16. I think you sharing all of this is helping so many people, Mary. Those behind you on this journey will find all of this so helpful.

    I don’t know what it is about people who allow power to go to their heads in thinking that by not communicating information is in some way saying that ‘I’m better than you.’ If only they would think about what it would be like if they were in your position. I’ve witnessed many people playing ‘god’ in my life, and they really need to sort themselves out and start being kind to people.

    I’m so pleased that there was ‘a room at the inn’ for you. It never occurred to me that hospitals reserved hotel rooms for patients. It’s good to know that they do.

    Take care.
    Festive hugs to you
    xx

    Liked by 2 people

    • Hi Hugh, it’s like they operate on their own ‘need to know’ basis and decide they are the ones who need to know – not us.
      The hospital would not normally book a hotel room. It used to operate a hostel next door to the hospital for people like me who live a long way from Edinburgh. They closed the hostel recently because of Covid and concerns about deep cleaning so now they book some rooms in a hotel at a special rate. It must be helpful for the hotel, too, to have occupied rooms.
      All the best for Christmas – and let’s hope for a better 2021 for us all. Hugs.

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  17. Glad you’ve got the first one out of the way Mary, the first is always the worst as you just don’t know what it will be like or how you’ll feel. Even better news that you’ll be rid of your sh*tty nurse. She sounds appalling and shouldn’t be doing the job she is with that attitude. Is she a nurse within the unit, or your allocated MacMillan nurse? The communication chain is pretty rubbish at the best of times, I had no means of contacting my oncologist and if I was in dire need of anything, or had questions thankfully my Macmillan nurse stepped up to the plate and she was lovely. Have the best Christmas you can (sorry you won’t spend it with your son). Here’s to an improved 2021 for us all xx

    Liked by 1 person

    • I do it quite astonishing how we go along with these things – putting our trust in doctors when we don’t know what’s going to happen to us. Rather than Macmillan nurses as a go-between it’s the job of the cancer specialist nurse to pass on messages, forward the questions we have to the oncologist. In my case the nurse seemed to think her job was to protect the oncologist from pesky, time-wasting patients! I suspect she also didn’t bother to inform me that accommodation was available and when we told the oncologist we’d booked a hotel room she asked why we’d not done it through her. If the specialist nurse is a good one, then the system should work well. Macmillan – and Marie Curie – nurses seem to be more for palliative care up here.
      Hope you have a good Christmas and I echo your sentiment about an improved 2021 for us all 🙂

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  18. I suppose when you finish the radiotherapy, you can take up fencing. Epee or sabre rattling perhaps. I imagine the much missed nurse will end up at whatever Oxford hospital is treating Sue; there’s destiny and there are capricious gods after all. Good to know it might just be darkest before the dawning of the lightening days – I hope the turkey actually tastes of turkey and not some variant on burnt throat. I do wonder it your past in having to deal with the Taliban, Mujahidin and the rest has set you up to ask annoying self important irritants the questions they don’t want to answer and then insisting on them answering them. Have as grand a Christmas as these bloody annoying restrictions allow, Mary.

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    • The mask is a bit too inflexible to be used for fencing, Geoff – I think a planter is a better option. Oh, no, don’t wish that nurse on Sue – she has more than enough to cope with with the ones she has, without adding to her woes. We’re having a ham instead of turkey, which I think will be tastier and easier to swallow! They say I’ll still be fine by Christmas.
      Hope you and yours have a good one.

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  19. What a remarkable woman you are Mary and sharing your feelings and treatment will undoubtedly help many others…I wish you well and hope you have few side effects …You rock, Mary know that I and so many others have your back and are willing the treatment to work plus my kick-ass flip flops are on standby if you need some help…Take care, Mary…Merry Christmas Hugs xx

    Liked by 1 person

    • It’s kind of you to say so but I don’t feel remarkable! I am pleased if sharing my feelings and what happens during treatment helps other people. They’ve told me the side effects aren’t likely to affect me until towards the end of the second week – and they will be quick to provide pain relief. Glad to know the kick ass flip flops are ready for action. Have a lovely Christmas xx

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  20. Good to hear you got your questions answered. And also good to know there will be a new nurse (hopefully much more helpful, although that doesn’t sound difficult). From your conversation with the consultant, it sounds as if you were not the only who felt like that about the nurse. Glad you’ve gone over the first treatment now. My dad got used to them pretty quickly, and he coped with them much better than with the chemotherapy, so fingers crossed. Big hugs. Best wishes for the holiday season (I wish you many good moments). ♥

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    • The radiographer I spoke to said I’d done the difficult bit as the chemo was harder to cope with so fingers crossed she’s right. So far so good, three down, 17 to go and after today that will be 16. I’m looking forward to being at home for the next few days. Wishing you all the best for Christmas and, hopefully, a better New Year for us all.

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  21. Your boots are made for walking – and that’s just what you’re doing! (To take a bit from the Nancy Sinatra song.) You are walking your way toward health and a happy new year. Hoping your throat is still not sore, that you’re able to enjoy Christmas dinner leftovers, and that your new nurse is a hundred times better than that mean one. Communication is the KEY to so many things, and between patient and health care professionals, it is essential. I’m communicating a huge hug and love to you, Mary. ❤

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