MarySmith’sPlace~CancerDiary#34

My next scan is coming up soon!

Thursday, May 13: Well, the ‘blip’ proved to be a bit more ‘blippier’ than anticipated. I did all the things everyone advised me to do and rested completely over the Bank Holiday weekend. The weather was pretty awful so it wasn’t too hard to stay inside with a well-stocked kindle. Unfortunately, it didn’t make any difference to the cough.

On May 05, I spoke to the Specialist Nurse (SN) who sounded disappointed about the downturn. We talked about the possible reasons for the breathlessness and the cough. It came back to what I suspected: either scar tissue in my throat from the radiotherapy targeting the lymph nodes above my collarbone or too big a reduction in the steroids. Specialist Nurse said it wouldn’t be problem to increase the dose.

Might not be a problem for SN who isn’t the one with swollen ankles, fluid-filled lumps which can be squished from front to back of my shoulders (when Sue told me her swollen bits moved around her body I wasn’t sure what she meant – now I know), a neck so swollen it would look good on a Galloway bull and puffy eyelids. On Friday when SN called to check on me I said things were much the same so there would be a discussion on Monday between SN and oncologist and SN would call me either on Monday afternoon or Tuesday morning.

See the neck on this very lovely Belted Galloway!

I did briefly think about making the radical suggestion the oncologist could phone me directly.

I reduced my steroids from 15mg a day to 10mg on Friday and felt OK when speaking to the SN. Friends came round later, bringing lunch for us to eat in the sunshine (real proper warm sunshine which had us taking off jackets) in the garden and I still felt fine and so happy to see them.

Saturday, however, was a rubbish day. It’s hard to describe how different everything felt. I spent most of it asleep, occasionally waking up to read for 20 minutes before dozing off again. The DH cooked our evening meal. The DH has done quite a lot of cooking over the last 10 months. It hasn’t improved and after coming home from my last spell in hospital I’ve cooked. I like cooking but on Saturday I couldn’t have boiled an egg.

On Sunday I had a lazy morning, going back to bed after breakfast, dozing rather than falling soundly asleep and in the afternoon the DH and I went to a garden centre. I felt a bit more like myself. I cooked. The next day was a better day and I spent a bit of time in the garden.

Then on Tuesday, SN called to say the oncologist had agreed that I should increase the steroids and review the situation in another week.

We had a brief negotiation session during which I admitted I’d had a really rubbish day on Saturday, the day after my steroid dose reduction, but had rallied on Sunday. I suggested, as I was now over half way through the 10mg week, instead of increasing the dose, I stayed on the same dose for the remainder of the week and for following week. This was deemed acceptable. I suspect I might have gone ahead with this strategy regardless because I really, really don’t want to increase my steroid dose and be on them the drug for any longer than absolutely necessary – wonder drug that it is.

I was starting to feel well enough to spend some time in the garden (pottering rather than full on gardening) and start walking again. Short walks.

Mrs Duck really did not want to be in the same picture as Mr Duck!

The other thing which happened on Tuesday was a telephone consultation with the pulmonary rehab team leader about my breathlessness and coughing issues. This is partly why I didn’t suggest the oncologist phoned me herself because the SN was instrumental in this consultation taking place – though only because I asked.

Top Tip – ask! If there’s anything you need to know or something you feel might be available to help, then ask. I asked so many times over several months about exercises to help my breathing. To start with, I got nowhere. This was partly my fault for not making clear what I was asking for. People heard ‘exercises’ and thought I meant running or cycling or other kinds of physical exercise when I meant breathing exercises and partly the fault of everyone involved in my lung cancer care who didn’t think about the benefit of breathing exercises. I didn’t even know a pulmonary rehabilitation person existed.

Finally, my new SN appeared on the scene, understood what I was asking and talked to the lung physio about it. I was sent an initial handout with some exercises and one, simple, brilliant method to control short of breath breathing. That alone endeared me to both of them! By the end of the phone consultation with the pulmonary rehab person on Tuesday I was convinced I could learn how to control this cough (it might even have become a habitual cough and there are strategies to deal with it) and what is described as ‘dysfunctional breathing’.

Today, I received in the post from my lung physio more handouts with exercises and strategies, a relaxation CD and a follow-up appointment and I’m wondering what happens to lung cancer patients who don’t ask for this kind of help because they don’t know it exists. Why the lack of communication? The lack of joined up thinking?

Also, today I received the appointment letter for my CT scan. This is the one which will tell how effective the cancer treatment has been. It’s at 10.30 on May 27 and I’m practically counting the hours, which is daft because the day of the scan tells me nothing (it does let me don scrubs and feel as though I have a walk on part in Holby City, which is the most fun part of it all) and I won’t know the result until Monday, May 31 when I meet the oncologist.

I’m in a strange space at the moment. There’s no point in crossing fingers and toes because the work of the treatment, both chemotherapy and radiotherapy, is done, so whatever it has achieved (or not) has happened. It’s still hard, though, not to cross fingers and hope.    

Until then, I’m not going to post an update. You’re probably as fed up as I am about the wait for concrete news – though do let me know if you want more information on how to correct a habitual cough (it includes sharp sniffs and effortful swallowing) and dysfunctional breathing.

Our walk this evening – all calm and quiet at the castle
Looking in the other direction and wondering if we’d make it back before those clouds dumped the rain on us. We didn’t! But, hey ho! it has been good to be out and about again.

122 thoughts on “MarySmith’sPlace~CancerDiary#34

  1. “dysfunctional breathing.” – and here’s me thinking all breathing must surely be good for one, Mary. Glad you’re getting out and about somewhat. Take it easy. Wonderful photos Thinking of you often. Never bored with hearing from you. Love from Wales. x

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    • I know what you mean, Judith – surely any kind of breathing is better than not breathing! I am going to follow the instructions and strategies and by the time I do the next update I should be on my way to being a properly functioning breather who has almost overcome a cough habit 🙂 Love from Scotland. x

      Liked by 1 person

  2. A lot of news… I always enjoy reading your posts as I think about you often, so no worries about posting ‘too often.’ 🙂
    Glad you are able to spend time in the garden and be with friends, as well as trips to shop and walks around the area. The more time you spend immersed in the present moment the better.
    Wishing you more good days and zero ‘rubbish’ ones. xo ❤

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    • I am lucky to live in such a beautiful place, Liz. It definitely helped during lockdown to have access to the countryside. I’m pleased to have found someone who seems to know what to do about my cough and my breathing.

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  3. So glad you could walk about, Mary. I, for one, will still keep my fingers crossed (yeah, and a prayer or two) that the CT will show marvelous results. I have asthma and have bad days where I can’t shake the cough. I don’t like to use the rescue inhaler willy nilly. My habitual cough only lasts one day at a time, so I’m not sure the correctional method is necessary. I do know when I have one of those days, I’m looked at as if I have leprosy. Maybe I could try the method if it is not too much trouble. Take care of yourself.

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    • Thank you, John. Sorry about the asthma and the cough it produces. I feel people look at me as if I have Covid! I can scan and send you the handout with the strategies if you want. Basically, they seem to be displacement activities for whenever the cough is about to start – effortful swallowing is one in which you catch the tip of your tongue between your teeth and swallow.

      Liked by 1 person

  4. I’m so very sad to hear the cough continues but will cross fingers that the exercises will help. And thanks for sharing your beautiful photos—I hope those continue in frequency and distance (but perhaps without the soaking!)

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    • I think by the time I’ve done the suggested strategies which include effortful swallowing (see above in reply to John Howell), sharp sniffs and blowing air out as though blowing out a candle, the cough has been shocked into subsiding. I do have to check if I’ve to do all three in sequence every time I feel a cough coming on. And, I think when I’m in public I might just suck a cough sweet.
      I hope to be able to get out more – and maybe blog more often about things other than cancer.

      Liked by 1 person

    • Thank you, Kim. I can’t deny it is an anxious time and, of course, anxiety feeds into the dysfunctional breathing and the cough so we go round in circles. I am feeling stronger, though, so am hoping when the weather improves to spend more time in the garden or walking.

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  5. How lovely that you have been able to get out and about, Mary…Lovely images you certainly live in a beautiful place…Everything crossed that your results are really positive it must be an anxious time for you …Hugs x

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    • Yes, it is lovely round here, Carol, and I know how lucky I am. During lockdown it was so good to be able to walk out into the countryside. It’s strange to think it’s now less than three weeks until I find out what the treatment has actually done – am trying not to think about it but suspect as the time gets nearer all sorts of scenarios will run through my mind. Hugs back x

      Liked by 1 person

  6. It is so good to read your update, Mary. Good for you for asking and insisting your needs be met. Your photos are beautiful as always. I imagine you to be a grand cook – what did you prepare? In the meantime, do what you need to do to take good care of yourself. I am always delighted any time I see your name pop up. I am here cheering you on. ❤️

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  7. Threave is lovely right now, isn’t it? As a chronic cougher with an interesting sideline in choking, I would be interested in any non druggy info. When you feel like as outing, try Glenwhan garden, the rhodos are magnificent right now.

    Liked by 3 people

    • Although it has been so cold it is amazing how everything has burst into life just the same as always. The person who did the telephone consultation with me is at D&G’s Respiratory Physiotherapy Clinic. I don’t know if you have to be referred. The info sent on coughing is produced by the Speech and Language Therapy Service (Adult). If you search on Google I’m sure you find the info.
      Glenwhan garden on my list!

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  8. It’s really great you’re getting out and about Mary. And a good time of year for it with longer days and (hopefully) sunshine and a bit of warmth. xxx

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    • I’m starting again to get out and about, Janette. It seems whenever I start to feel stronger, something happens to take the feet from under me and I have to re-group and get up and start again. I’m hoping this time – this week – with not reducing the steroids I get a bit longer to build up stamina. xx

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  9. Sorry to hear about your setback…but so impressed with your focus and determination. Keep on enjoying those local walks…..and your garden. If the frosts keep away our gardens will soon be a riot of colour to enjoy. Meanwhile the bluebells in Carstramon woods are gorgeous.😍 Good luck with the scan🤞

    Liked by 1 person

    • The bluebells at Threave are out now, too. I’ve emailed you about Senwick. I do feel stronger again after the ‘blip’ and hope to do more walking. Would be nice if the sun came back!

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  10. Thank you for updating us. Sorry to hear that the cough and breathlessness have continued, but good to hear your persistence has resulted in being put in touch with the right people for the appropriate exercises. Keeping everything crossed for your next scan. Sending positive thoughts and hugs.

    Liked by 2 people

    • Wendy, I didn’t even know there was a Respiratory Physiotherapy Clinic at the hospital so I am very glad I kept asking about what could be done to improve my breathing. It was like discovering a well-kept secret though I’m sure they don’t mean to keep it secret! Hugs back.

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    • Yes, we so often have to ask for what we need. I’ve seen several comments here already from people who would like more info on breathing/coughing problems. I think part of the problem is there is still no holistic approach – each consultant works in her/his own field without seeming to recognise others have a valuable contribution to make to the patient’s well-being. For how many years has the expression ‘holistic approach’ been bandied about???

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      • holistic approach only seems to be embraced by people who aren’t into allopathic medicine. There are universities in the USA that have a team of doctors for each person and discuss the best ways to proceed together. I’m near one of those hospitals & clinics — but all your doctor’s have to be in one place.

        It’s not only sad, it is not good for a patient to be without a team that works well together.

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    • Definitely worth looking on Google. The exercises I have to suppress the cough (because she thinks it may have become a habit) have come from the Adult Speech & Language Therapy Services and I’m sure there will be a similar service attached to a hospital near you. I didn’t know they did this kind of work. When Dad had dementia a speech and language person came to visit to help us and him with problems swallowing but I had no idea what other things they did. The hospital in Dumfries has a Respiratory Physiotherapy Clinic – again, might be worth checking at your local hospital. Good luck.

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  11. Nobody is ever bored or fed up to read about your news and updates, Mary. We are all waiting to hear, and hoping for the very best outcome for you. Nice to see you were able to get out, despte getting rained on. We have had some similar clouds over Beetley this past week.
    Best wishes, Pete.

    Liked by 1 person

    • Thanks, Pete, I’ve appreciated your support from the beginning. We took a bit of a gamble yesterday evening as during the day, which started sunny, we had rain, hailstones and thunder & lightning. It cleared up in the evening until we were half way round the walk. Today is just grey!

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  12. Lovely views and I am glad you were able to get out and about, Mary. ❤ Prayers and hope for bright CT scan results and I hope the exercises help with your cough. Share as much as you wish, as we are all here to listen and flow loving support to you. ❤ Xxx

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    • I always feel better when I’m able to get out into the countryside round here, Jane. Even on the short walk I do round the castle there is so much to see and every walk is different – right now, the bluebells are carpeting the ground under the trees. Thanks for you support. xx

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    • Persistence finally paid off, Liz, but if people don’t ask then they don’t get what they need. I guess I could have found exercises on Google but it’s better to know a qualified person has listened and knows what is needed. I’m trying (though not very successfully) to ignore the looming scan result – but at the same time want to find out asap. xx

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  13. I sometimes think it’s a bit like the clash between traditional and quantum physics.
    Whereas in standard physics, something is fixed in time and place whether or not anyone is looking, in the quantum world, nothing is fixed until it is observed.
    Whether Schrodinger’s cat is alive or dead is only determined at the point we look in the box.
    Now while any physicist would tell you that this only actually happens at the minutest of sub-atomic levels, I think in some ways we all sort of believe that the act of observing something does in fact create the outcome.
    So if I wear my lucky socks, or do whatever ritual before (or during) the time I reveal the scratchcard numbers, or watch the football match etc, then I will have influenced the outcome.
    We can’t help but believe that despite the fact the scratchcard was printed months ago, or the football team has been practicing for weeks, these things are pretty much irrelevant. It is the act of watching, and how we watch, that determines the outcome.
    So although on an intellectual level I know it makes no difference, I will still have my fingers crossed for you.
    ((hugs))

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  14. Thanks for the update, Mary. I’ll be patient (alongside you) and wait until the end of the month for the next one. Lamenting the disjointed thinking and practise that compelled you go dig out solutions to your breathing problems. It’s always disappointing to me to see health care fall short of what it might best be. When things, and people, move more freely, I’d like to come up and see you. I can ensconce myself in a convenient B&B or similar, sit in the garden with a trowel, and supply picnic items, as needful. Cyber hugs from the wrong side of the Solway Firth.

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    • At least I doggedly kept asking because I was sure there must be something that could be done to help with my breathing problems. I feel for the people who don’t ask, or who might ask once and not be pointed in the right direction and who just give up, which means they will become an added cost tot he NHS further down the line. The specialist nurse went off and talked to the right person and effected a virtual introduction between us.
      I’d love to see you up here. I think you should be considering making a move to the correct side of the Solway Firth before much longer – you want to be here before independence.
      In the meantime, take care and stay safe. Oh, it will be lovely to hug you!

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  15. Some progress Mary and sorry that the breathlessness and the coughing continues although you sound as if you might have found a balance with the steroids.. they are dreadful for swelling… Thank you for the lovely photos and I understand how you must be on tenterhooks about the scan and the results… judging by the comments there will be many of us having difficulty walking with everything crossed for you..♥

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    • Hi Sally, the last couple of weeks haven’t been great but I’m feeling a bit stronger at the moment so am hoping to have a good week on the same steroid dose as last week. The breathlessness is no worse and I’m trying to get to grips with the strategies to suppress the cough. They aren’t really things I want to do in public – puffing air out like I’m blowing out a candle or sniffing sharply! As for the effortful swallowing, I suspect I look like I’m trying to swallow something vile when in fact I’m just trying to swallow. Sorry about everyone having difficulty walking – and no doubt suffering from horrible cramp – but do appreciate the support from so many people. Hugs. And we may even be able to do so when we have that lunch 🙂

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        • Oh, goodness, I hadn’t heard about the Health Service being hacked. Have you not had any of your vaccinations yet? We’ve been urging David to get tested as he’s living in the postcode area in Glasgow where there is a spike in numbers. I do wonder when we’ll ever come through this.

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          • We have only just become eligible in the late 60’s bracket with no underlying health issues… they have been vaccinating those who have in the local area.. They are saying the appointment process has not been impacted but we shall see… I am registered.. David will wait until I have had mine first and then register just in case of an adverse reaction both of us are not under the weather at the same time.. Ireland partially opens up on Monday so we shall see where that leads!! hugsx

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            • I hope you get vaccinated soon, Sally. David has had his first but is in the postcode area of Glasgow with the highest cases, which is a worry, especially as they are now saying the cases may include the Indian variant. Our town is full of visitors, most of whom don’t seem to think wearing a mask (other than inside shops) is necessary any more. Hugs.

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  16. I´m glad you got the exercises you needed. Not sure why it should take so many requests for something that should be simple. That Belted Galloway cow is gorgeous. I love cows and have never seen one of this breed. Hang in there and enjoy the good days. Sending hugs.

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    • I’m glad, too, Darlene and hope they work. They say things should change within three weeks – so worth sticking at them. The Belted Galloway is native to where I live. There is a Galloway, which is black all over then the Beltie, with the white belt round it’s middle. Hugs back.

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  17. Well, that’s maddening–about the breathing physio, I mean! Just no coordination of care, is there? At least you found out, finally, and can take steps to improve your lung capacity. As for steroids, they may be miracle drugs, but they are rough on the body. So many side effects. I’d have opted for the lower dose, too, no matter what my medical team told me.

    Sorry you had so many crappy days, Mary. I have high hopes for your scan results–for prayers and positive thoughts to translate into good news. Yes, I know “it is what it is” regarding your treatment regimen, but I’m staying optimistic. In the meantime, may you have many good days enjoying the warming weather, light gardening, and gentle strolls through the lovely countryside. Your pictures alone are inspirational!

    Take care, dear friend. Big hugs,
    Linda

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    • It is a bit irritating, Linda, when I was sure there must be something that could be done about my breathing. I think I first asked back in August last year, before I’d even started on any treatment and knew the tumour was growing and my lung was collapsing. Anyway, I’m delighted to have finally found the right department and the right person thanks to the specialist nurse responding to my question. I do wonder how many people like me are totally unaware there is a respiratory physiotherapy clinic?
      I’ll be so glad to finally get off the steroids, possibly in a couple of weeks so everything – scan, meeting with oncologist and coming off steroids will all be happening at the same time. I hope all the prayers and positive thoughts translate into good news but I’m trying not to think about the result. Thanks for your continued support – big hugs back to you.

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  18. Mary, it’s lovely you could go out a bit during an otherwise tough week – and not to mention Saturday. I would say I am flabbergasted how you have to initiate care and conversation with the medical staff but sadly I’m not surprised. Yes, it would be something if the oncologist called you! I hope the lowered steriod dose settles with you. As for the breathing exercises, yes, you’d think that would be offered and not sommething you need to chase up. Fingers crossed these help you with your symptoms. Many years ago I had pleurisy and afterwards struggled to correct my breathing as the pain has been so bad. I was sent for physio for breathing – I had no idea that even existed but it worked wonders.

    Hoping summer warmth and sunlight arrives soon and take care. hugs xx

    Liked by 1 person

    • I did manage to get out and there was some sunshine, though I’m still wearing mostly what I wore all winter. I really wish we could have some proper sunny days as the sunshine definitely makes me (and lots of others) feel better in every way.
      I didn’t know there was a department for respiratory physiotherapy, either, though I suppose it makes sense there should be. It doesn’t make sense that it’s some kind of secret.
      Anyway, I shall do my exercises. As well as the ones to suppress the cough, I’ve been sent some basic Tai Chi moves and a relaxation CD so they really are doing all they can to help.
      I can empathise with your pleurisy. I had it many years ago and the pain was awful and it hurt too much to lie down. Hugs xx

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  19. Pleased to hear you’ve finally got some help with the breathing (& hopefully the cough), but you shouldn’t have had to jump through hoops to get it. Hope the exercises do the trick. Glad you’re able to get out and about – fingers crossed for good weather now so you can enjoy it even more x

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    • Thanks, Jill. I was sure there must be something to help so just kept on asking. I feel for those who don’t ask because they assume the experts will tell them, or give up at the first hurdle. They think the cough may have become habitual and I have a feeling that’s true as I’ve realised if I’m totally absorbed in something I don’t cough as much. Anyway, I’ll persevere with the exercises, including biting my tongue while swallowing – however did someone think that one up! Yeah, I’m hoping for some sunshine so I can sit in the garden and read my new haul of books on my kindle 🙂

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  20. Hi Mary, nothing is every easy, is it? My Michael has been very sick again and was on 60 grams of corizone a day for 5 days (that’s 12 tablets). The ENT also changed his nasal douche to a new and improved one. We spend three days in and out of hospital and he is now scheduled for a lung functioning test on 7 June. I am praying for good news for you on 31 May. Until then, try not to worry to much and I hope you are able to enjoy some good weather and short walks.

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    • You are right, there, Robbie, nothing is ever easy. Poor Michael (and poor you having all the mum worry) I hope he will be on the mend soon and that all goes well for his lung functioning test on 7 June. It would be lovely to have some warm weather. I’m tired of still wearing my winter clothes 🙂
      Give Michael a hug from me and my best wishes,

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  21. Glad you’ve got some breathing and anti-cough exercises, and I’d be interested in them too. Although, come to think of it, I haven’t coughed much today. Haven’t done much, either, though.

    Always happy to hear from you, even if it’s just putting a few pictures of your walks up with nothing else.

    And I came to the conclusion I was not to watch Andy Murray because he won if I left him to it. 🙂

    Roscoe still has a bare patch on his nose where the tick bite was, but I can see the strongest hairs are coming through. Did you know they have two types of hair? Strong ones called ‘guard hairs’ and softer, slightly shorter ones. And he’s looking at me while I’m typing this. He knows, you know. ❤

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    • If I don’t post more often I miss out on Roscoe updates! I didn’t know guinea pigs have two kinds of hair and I’m so glad his strongest ones are coming through and will cover the bare patch. Do give him my best and a kiss.
      The handout from the Adult Speech and Language Therapy Service gives strategies to break a throat clearing cycle (which I don’t think I do) which includes takings sips of water throughout the day. To suppress a cough: keep shoulders still and take a sharp sniff in through the nose; effortful swallow which means holding your tongue between the teeth then swallowing; blow out through the lips like you are blowing out a candle. Then it says repeat until the urge to cough or the coughing stops. I’m going to have to ask if the three techniques should be done one after the other or do we select one which works best? Repeat all three or just one?
      I feel the same about Andy Murray and the Scottish rugby team.

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  22. Gosh, I always love your photos Mary, thanks for so many new ones. I’m sorry for the ups and downs after your treatment, solving breathing issues sounds pretty critical to me. I’m so glad they finally heard you and what you were looking for. I’ve just encountered some issues with my doctor. The bottom line is why do we have to negotiate so much with our medical care? And just so you know, there are many of us who appreciate the details and medical information you share. 🙂

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    • I’m pleased you enjoy the photos, Melanie. And thanks for saying people appreciate the medical information I share. I’m sorry you’ve had issues with your doctor. I don’t know why we have to negotiate so much with our medical care. My dad, who died in 2014, had dementia and we had endless negotiating to do then and nothing has improved. We were delighted then with the service provided by the occupational therapist who offered more than we knew was available – in the same way I’ve now discovered the respiratory physiotherapy service – but that should be the norm, not the exception. All the best x

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  23. Steroids are great and all, helpful and wonderful, but they are also kind of awful. Truly. And long-term…ugh. The breathing exercises sound fantastic and I am so happy your found a person to help you with that. Keep that up! (I will not cross fingers but will sort of cross fingers). 💗

    The photos are lovely and I’m so pleased you got outside and were able to take some (short) walks.

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  24. Everything is so parcelled out and everybody seems to specialise in one little thing that it seems to make everything quite difficult. You’re right. Somebody should have thought about it, and perhaps it might have happened when people actually met and the whole team shared ideas and discussed matters live (before the COVID, I mean). If you are all in the same place, it seems easier to keep joined-up thinking going and coordinate things. But having protocols in place might help as well. Good that you’ve got some help and the medication is coming down slowly, Mary.
    I think that, no matter what, we’ll all keep our fingers crossed for your next CT scan. Sending you all my best. ♥

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    • I do appreciate everyone keeping their fingers crossed for my scan result – just realised it’s only ten days away now. In the meantime, I’m trying to follow the various strategies and techniques to suppress the cough and improve my breathing. Yes, maybe before Covid, help on this might have come sooner. On the other hand I started asking about breathing exercises months ago – and was handed a booklet. Anyway, onwards and upwards 🙂

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  25. Glad you’re out and about and have decided to hang in with the 10mg dose of steroid. They do wreak havoc on the body no doubts. I’ll keep my fingers crossed for your good results 🙂 xx

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