MarySmith’sPlace ~ Cancer Diary #14 Scan results and what’s next?

Monday, December 07: From last Monday to this, the side effects continued to linger – nothing specific just a general mixture of ‘meh-ness’ and fatigue.  Unfortunately, the breathlessness became worse. We did one of my favourite circular walks between Rockcliffe and Kippford – an area known as The Scottish Riviera. Last April, I blogged about it, calling it a short walk of 3.5 miles. You can read the post and see the pics here.

Last week, on a lovely bright day, I could have cried with frustration at how difficult I found this same walk. I’d have said it was mostly level and yet it suddenly seemed to have grown hills I didn’t even remember. I had to stop to catch my breath and did wonder if I’d have to stay in Kippford while the DH walked back to Rockcliffe for the car. However, I made it.

A couple of days later, we visited Neilson’s Monument on top of Barstobrick Hill near Ringford.

The monument was erected by his son in 1883, in memory of James Beaumont Neilson who invented the hot-blast furnace in 1828, which revolutionised the practice of smelting iron. I’ve always enjoyed the walk there as, though the hill is not high, the views are wonderful on a clear day.

I had to stop a couple of times to get my breath back – I mean I do always puff when climbing any hill but I never used to have to stop on the way to the monument. Although I skipped back down the hill with no problems I came home feeling pretty miserable.

Walking is a huge part of my life – with a walking group (in pre-Covid days), with my sister and her dog, with the DH, on my own – and to feel this is being taken away from me is devastating.

By the weekend, the prospect of today’s meeting with the oncologist to hear the scan result and decide on next steps looming large I was in no mood to attempt a walk. I hardly slept last night and when I did it was to dream of conversations with the oncologist.

I told her I was extremely anxious about the scan result so she agreed to discuss that first – last time we had a medical examination and lots of questions about how I’d been, when all the time I just wanted to know the result. This time, we got to that bit first – and – cheers all round – the tumour has indeed shrunk. Unfortunately they said it was difficult to measure so I don’t know by how much it has shrunk – but the juggernaut has stopped and gone into reverse.

The summary of the report says: “Interval reduction in the volume of the right upper lobe tumour with re-expansion of apical segment of the right upper lobe. Lymphadenopathy is stable. No new lung lesions. Abdominal scan is unremarkable.”

Don’t put away your kick ass boots yet, though, as there’s four weeks of radiotherapy to be gone through try to continue the shrinking process.

The oncologist repeated what she said at the beginning of this horrible journey, she is not expecting the treatment to be curative and, though she said it bring a cure for 1 in 8 patients, it seems clear I’m in the 7 in 8 category who can hope for some extended time. She says at least a year or two.

I’m not sure how I feel – very happy the chemo has done something to shrink the tumour a bit. I’d have been utterly squashed if shoving toxic chemicals into my body with the resulting horrible side effects had done nothing. Very nervous about what’s coming next. Very worried the radiotherapy side effects will make me feel worse than I do now. I guess they have to spell out the worst-case scenarios but really – throat so sore when I swallow I’ll need morphine strength painkillers or even a feeding tube; permanent scarring on my lung causing breathlessness.

As you can imagine, it’s a lot to take in and process. We recorded the discussion and have already listened to parts of it again. Tomorrow – Tuesday – I go to Edinburgh for the planning scan, which does not sound fun – lying completely still with my arms above my head for twenty minutes – and wearing a mask. Not the kind of mask we’re all wearing these days but something over my entire face and neck. I wonder if I’ll have the courage to ask someone to take a photo for the blog.

Please, keep those kick ass boots at the ready. Mine are!

112 thoughts on “MarySmith’sPlace ~ Cancer Diary #14 Scan results and what’s next?

  1. Hooray for the shrinking tumour? Remember Clive James? They said he was on the way out and ten years later he finally left, feeling a little embarrassed. You might do likewise. Or not, who knows? I have a friend who is tested every year along with her brother for pancreatic cancer for family history reasons. Then she got breast cancer! She’s doing fine, but the universe is a very dodgy place, isn’t it?
    Hope you feel well enough to enjoy the good things in life. Now where did I put the gin…….

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    • Thanks, Hilary. Yes, indeed the universe is a very dodgy place. I’m just happy it has started to shrink – and hasn’t spread. I do enjoy a gin or a glass of wine and was very relieved to discover the medics hadn’t banned alcohol while on chemo.

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  2. Gosh it’s strange how despite all the greater things going on I’d be worried about keeping my arms above my head for twenty minutes. Not sure I could do it. Great that the juggernaut has reversed a bit. I wish it would reverse right off the scene altogether but anyway, thankful for any reversing at all. Thinking of you tonight and tomorrow Mary for the next step. I’ve never done that Kippford walk but must some day. xxx

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    • That worries me, too, Janette. When I had the PET scan I told them I’d never be able to do it and they let me have my arms down at my sides saying the important thing was to keep still. Even so, by the time the scan was done I could feel myself getting fidgety. Thanks for your good wishes. And do try the Kippford walk, it’s really lovely – seaside, woods, history – and a lovely cafe in Kippford which does great cakes.

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  3. That is indeed good news that the tumour has shrunk. I am so happy to hear this. Yes, they have to give you the worst-case scenario, but it doesn´t mean it will happen. Love those boots! Sending much love and many hugs.

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  4. Pleased to hear the tumour is at least shrinking. Don’t worry too much about the radiotherapy scan. Mine was far less bother than I thought it would be. I was also scared that the tattooed marks would hurt and I never felt a thing. Radiotherapy can be tiring, just the physical process of having to have it done everyday is a pain. Be kind to yourself and take it easy.

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  5. I understand the trepidation, however, there is still reason to celebrate and wear those kick ass boots! This course of treatment is not easy yet somehow we humans muster the strength if we feel like there is positive progress. I continue to pray for you and I am jumping for joy that you received some positive news. One step at a time. Sending you positive thoughts and lots of love.

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  6. Thanks for the update, Mary. I doubt it is easy to relive all this for your blog, but you will be helping lots of other people by doing so. Well done for that. It all seems to be something of a game of chance. As another comment said, look at Clive James. I’m only thinking positive thoughts!
    Thinking of you as always, Pete. x

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    • Thanks, Pete. I’ve been surprised at much of a game of chance it is. The oncologist has said several times she wishes she had a crystal ball – but they don’t know the outcome and every single patient is different both in presentation of the illness and reaction to the drugs.

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  7. Mary, with boots like that you can do anything!🤗

    Seriously, I can’t imagine what you are going through … an emotional and physical rollercoaster just does not cut it. I feel for you and your walks, to be breathless where a few months ago you charged along must be so dispiriting. I suppose at least you can be out and see some of the glorious landscapes, take heart of the beauty around you and be in fresh air.

    Mary, I’ve been thinkig of you today and I wasn’t sure I dared read your post at first. Like you I would want to know the result of the scan at the start of the conversation. Good news indeed there is a shrinkage and lungs clear. I hope you can have a good night’s rest tonight and good luck tomorrow. One small step at a time … we are all rooting for you.

    hugs xx❤️

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    • It has been dispiriting, Annika. I think, though, after listening to the doctor today I have been trying to do too much too soon and need to be a bit gentler on myself and gradually build up strength and stamina. I was so pleased to hear it had shrunk because last time it hadn’t – though it had stopped growing. I’m hoping the radiotherapy will make it shrink further – and the boots 🙂

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  8. Keep kicking those arses! This has taken a huge toll on your body and you need to recover. You shouldn’t expect to go prancing up hills like nothing has happened. Make a recovery walking plan and don’t do too much. You are allowed to stop and smell the roses all the way up. I might actually be able to keep up with you.
    That said, I think you’re doing a terrific job, and the truth is… it’s shrinking.
    Just keep putting one foot in front of the other. We love you. Roscoe sends a smacker of a kiss for you. (That guinea pig is getting flirty in his old age).

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    • You are right, Jemima. I’ve not been thinking about the toll on my body – apart from when I have a moan about not feeling great. The doctor made me realise today I’ve been expecting it to do too much, as if it had never had all those toxic drugs dripped into it. I will take things more gradually now and make a plan for building up slowly. Yes, it’s shrinking and its not spreading so that’s two pieces of good news.
      Please give Roscoe a kiss back from me x

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  9. Oh Mary, I am so relieved to hear that the tumour has shrunk somewhat but you’re right to keep on kicking it with those boots, (which are very stylish by the way.) Like you I love to walk in nature. Sending hugs and healing vibes your way and hope that the radiotherapy doesn’t leave you too low. Marje x

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  10. I’m glad to hear the tumor has shrunk Mary. For what it’s worth, my dad died from a brain tumor back in 1982 when I was 16. When he was diagnosed doctors gave him 2 months because the tumor was so large and aggressive and he fought for almost 7 months. I’m a firm believe that attitude plays a role so you keep those gorgeous kick-ass boots on! I’m also sending you all the good thoughts and vibes I have.

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    • Thanks, Kim. Sorry to hear you lost your dad when you were only 16 – a big loss. It sounds like he had a positive attitude. I’m trying to stay positive – and yes, I wear those kick ass boots to show the tumour I’m after it 🙂

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  11. Forget about the “odds,” Mary. Your body is your body, and no one knows for sure. You could be that one in eight and surprise your oncologist. I’ve known people at stage 3 and 4 who’ve made remarkable recoveries. That said, I’m sorry to hear the radiation therapy will be so grueling, too. At least the tumor growth is arrested–that’s news worth celebrating. Will keep hoping and praying for the best.

    Great photos, by the way, and dynamite boots!

    Love & hugs,
    Linda

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    • I’ve realised how different every patient is and that there are no hard and fast rules about how tumours behave. At least mine is shrinking so the chemo has been doing its work. I’m hoping the radiotherapy won’t be as gruelling and that the doctor is giving the worst-case scenarios. Glad you like the boots – they’ve helped me keep up my moral whenever I have to go for a medical appointment. Thanks for your support.

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  12. Do something really terrible before Christmas so that Santa brings you coal. That way, you’ll be among those of us who are considered too ornery to die. 🙂

    Seriously, there are a lot of prayers for your healing, and people envisioning that tumor going away forever so that we can alter the path of this construct we call “life.”

    We appreciate your reports — and you know that your experiences will help others, too. As you have stated so well, it is hard to make a decision about which path to take if you don’t know where that path might lead. It’s one thing for the doctor to rattle off side effects. It’s another to know that a simple walk that can’t be completed feels like a part of your life is being cut away.

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    • Mhm, now what terrible thing could I do before Christmas? I’ll have to think about that one – shouldn’t be difficult to come up with something 🙂
      You are right, it does feel like a part of my life is being cut away if I can’t go walking. I think the problem is partly because the doctor doesn’t know me so doesn’t know how much I walk and how much I love/need to do it. So she says, yes to walking thinking I mean a short stroll on a path around the local park, not realising I mean a proper hike. I think it’s partly because I didn’t understand how the chemo has affected my body. I look the same as usual but I clearly am not the same – I’m a bit of a wreck. But, I’ll do as I’m told and take it gradually.

      It’s great if my blog helps others but it also helps me and I do so appreciate the huge support shown by blogging friends from all around the world. That has been amazing.

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  13. I love the kick-ass boots, Mary, it shows your fighting spirit! The good news/bad news must be hard to process and the unknown way you’ll respond to radiation must be esp. hard to deal with. No one likes uncertainty. I’m glad you are writing about this, both for your own processing and to help us understand and support you in spirit. I’m putting my boots on, too!

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    • Thanks, Eliza. It is the uncertainty of everything which is really difficult to cope with – it seems there are no definite answers. Cancer treatment is clearly not the exact science I thought it was! I guess I will find out soon enough how I’m going to respond to the radiation – fingers crossed it won’t be as bad as I fear, Many thanks for your support.

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  14. Good to hear that the tumour has shrunk, Mary. That really is good news. Sending healing and positive thoughts your way as you continue your journey wearing those amazing boots.

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  15. Kickass flip flops at the ready…Let the battle commence…two positives, it stopped and now it is retreating sounds to me like the battle strategy is working…But now’s the time to step back just a tad and look after yourself make some plans for revised walks and if you have to stop twice for cake (that’s) a bonus…Thinking of you for the next part of this journey we know that no one size fits all but they will find a perfect fit for you I am sure…Take care, Mary and remember so many of us have your back…xxx

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    • Now we need to hope the radiotherapy carries on the good work of the chemo. And, yes, I do need to take a bit more rest and not try do things as I did before. I’m learning! Thanks so much for all your kindness and support.

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  16. Posilutely good news, considering where this diary started. Language and statistics do play mindgames at these times. I will happily join in kicking ass in my timberlands. Better than kicking leaves which the big kid in me had me doing yesterday only to find a small but adhesive poo attached to the toe when I finished. That feels like a metaphor: all shit sticks but it can be cleaned away… take care and enjoy the great outdoors even if it’s currently coming in chapters.

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  17. Stopping and even reversing a juggernaut takes some doing. We will all stand in front of it and, if it stops reversing, we will push it. I have some very solid rigger boots for kicking poor ass. Would you like a pair for Christmas? Good luck today. Juliet x
    PS you told us how you were feeling before the scan results and THEN wrote about the scan results – just like the oncologist at your previous meeting. I had to scroll down to your results then go back up to read the rest!

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  18. Such good news – reversing that juggernaut. Hope the scan goes well and you continue to kick ass with those fabby boots!
    Keep walking – it’s such a good boost – just (as so many of your friends have said ) be kind to yourself – maybe don’t expect so much of yourself – even those with long covid are finding it difficult to regain their former fitness . Now where did I put my boots!
    Thinking of you
    Sue

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    • Thanks, Sue. I realise I have been expecting too much – going for walks I did when I was pre-chemo fit maybe wasn’t the best idea. I’ll will learn to take shorter walks and build up gradually. Yeah, you go find your boots – definitely a good strategy.

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  19. I am very happy to hear your tumour is shrinking, Mary. Hopefully your strength will start increasing in a few weeks time. I think the radiation side effects are different to that of the chemo. Maybe you will be able to walk more as a bit of a trade off.

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    • Thanks you, I was pretty happy, too, Robbie when I heard the news. I’m not going to push myself on the walking front – tried that and found it frustrating and disheartening – but will pace myself and work up gradually.

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  20. Hi Mary. My boots are and will continue to kickass very hard for you. Well done on the shrinking tumour! My mom had radiotherapy for an inoperable malignant brain tumour, 27 years ago. The only side effects I can remember her having are that she slept a lot more, especially in the hours following the once weekly treatment, and a bad taste in her mouth for a couple of days afterward. Good Luck with your meeting in Edinburgh. Kim xx

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    • Thanks, Kim. I hope these boots are scaring the tumour into submission 🙂 That’s great news about your mum and thanks for such a reassuring comment. I don’t mind sleeping more – it’s the sore throat which worries me – but all these things do pass eventually and I’m going to go for the treatment.

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  21. Pingback: Riding the rollercoaster… #cancer | Sue Vincent's Daily Echo

  22. I missed the good news (somehow I was convinced I had read your blog last week, but this year all weeks are melting into one), but I’m happy things are looking up. I hope radiotherapy isn’t too bad. My father’s experience was better with radiotherapy than with chemotherapy (that made him really ill), and other than feeling a bit more tired, he was mostly fine, but it is very individual and it depends on all kinds of things (dose, type of tumour, frequency…). I’m keeping my fingers crossed and will wear my boots as well. (Oh, and I love walking, so I understand how you feel. Here is to hoping!) Take care. ♥

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    • I know what you mean about the weeks melting into one, Olga. Time has definitely been warped this year. I’m hoping the oncologist has given me the worst case scenarios because she has to and the side effects might not be as bad as I fear. In fact the radiologist I saw last week said I’d come through the worst bit with the chemo.
      I’m just about to post the weekly update.

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