MarySmith’sPlace ~ So much to tell you! Cancer Diary #36

Isle of Lewis

Tuesday, 20 July: When I took my blogging break at the beginning of June I expected it to be for two weeks. Yet, here we are: over six weeks later and I’m only now getting myself together to write an update. It’s a long one, but I’ll put in some nice pics to break it up a bit.

I’d decided to take a break from blogging and social media partly because I was heading off for our first holiday since 2019 with the DH, our son and his partner and partly because for the first time ever, writing wasn’t helping me to process what I was feeling about my cancer and what was happening in my life. Although there was the really good news the cancer was under control for now, I was worried about my cough and breathlessness, which the oncologist seemed to think wasn’t likely to get much better. The research I did about my radiation-induced fibrosis was also pretty disheartening.

We went to the Isle of Lewis and Harris, the main island of the Outer Hebrides. It is stunningly beautiful from moorland to mountain, from lochs to beaches with miles of white sand and the amazing Calanais Standing Stones. Visiting them has been on my must-see list for a long time and was also partly a pilgrimage in Sue’s name as she was there two years before.

Social distancing was not an issue on such beaches
Calanais Stones, Lewis – older even than Stonehenge

I have to say, though, the edge was taken off my enjoyment because of my fears about the fibrosis. At the back of my mind was a constant niggle about how I’ve been left with worse health issues than before I started treatment. Alive, yes, which I wouldn’t have been without treatment, but … It’s hard to explain without sounding totally ungrateful for the treatment which has kept me alive – though it has scarred my lung, left me breathless and unable to enjoy the walking which was so much a part of my life and has even given talking to friends on the phone a nightmarish quality as I have to keep pausing to cough. Getting dressed has me puffing and panting. There are books I want to write, and poems, but my brain isn’t functioning at that level and I fear it might never again. That’s before the weight gain which I hate. It’s taken me less than a year to put on two stone (28 pounds but you’ll have to work out the kilos if that’s your thing) and it will take about two years to lose it again – do I really want to spend that amount of time counting calories and trying to exercise more. Back we come to the breathlessness on exertion.

Got to get a lamb in somehow!

Once back home I continued to try to find out more about pulmonary fibrosis. I asked the specialist nurse to ask the oncologist what, if anything can be done to alleviate the symptoms – because, of course, I can’t ask directly. When I meet the oncologist I always have my list of questions ready but other questions arise depending on the responses and sometimes it’s after the meeting ends I work out what I need to ask.

I had another telephone consultation with the lung physio who previously provided me with various techniques to suppress my cough – though this was before we knew about the fibrosis. She spent time explaining that my fibrosis is not the progressive kind and now that the cause – radiation – has been removed it should not become worse. She also said she’d ask the respiratory consultant to speak to me – which she did the same day in the evening. If only I’d had such detailed explanations earlier I would have enjoyed my holiday so much more.

I find it puzzling how some people in the medical profession are excellent at understanding how the patient feels and at communicating in a clear, understandable way – and, best of all, don’t seem to mind the questions – yet others seem so totally focussed on the treatments they lose sight of the patient’s need to know and understand what’s going on.

The conversations with these two people made me feel much more positive, not least because the consultant explained the tiredness from treatment was likely, in her experience, to continue for about a year and I shouldn’t be despondent about not returning immediately to my past fitness levels.

I was planning to re-join the blogosphere – when the DH went down with Covid. He has been super-cautious since my cancer diagnosis last summer when the oncologist warned me if I contracted Covid it would kill me as the chemotherapy would destroy my immune system. He never left the house without a mask, kept his distance from people and had been double-vaccinated.

I was rather chuffed with my lupins this year – and so grateful I had a garden in which to potter while self-isolating

I received a text telling me to get tested and to self-isolate. This was easy enough when the DH was in hospital but when he was discharged and we have to continue the self-isolation under one roof it was a bit trickier – thank goodness we have a large flat and we have a garden. Anyone thinking it would be a mild dose as he’d been vaccinated should hope they don’t get to find out what a mild dose is really like. I hate to think what it would have been like had he not been vaccinated because his cough was horrific. For a while, it was far worse than mine. He couldn’t even record a message on the answering machine to say he would be off work for a week and not responding to calls or texts without having paroxysms of coughing. It didn’t stop someone leaving a message practically the next day asking him to order equipment but on the whole his clients were patient and supportive.

How I didn’t get it, I don’t know. I can only assume my immune system has bucked up since I finished chemo and radiotherapy and have been eating well and taking a liquid iron supplement and getting out whenever I can.

I could fill several blog posts on the absolute nightmare of trying to find a venue in Dumfries & Galloway where the personnel on duty will actually carry out the Covid test rather than supervise people doing it themselves. I do not believe I am the only person in the region who is too much of a wimp to stick an extra-long cotton bud down to her tonsils and so far up her nose her brain cells start to explode. I can just about cope when a qualified person is carrying out the test as long as I have something to hang on to and twist!  I spent a day online and ringing round and finally a wonderful person on the NHS feedback phone line said she’d see what she could do and turned up trumps by getting me an appointment where a nurse would do the test.

I’ve managed to get out for walks but whereas a couple of months ago this walk round the Threave Castle osprey walk would have taken 40 minutes (if I didn’t stop to talk) I now have to stop a couple of times to rest.
Lovely Belted Galloway cattle – poor sods can hardly pause in their munching because the nutrition levels in this field are practically zero because the farmer isn’t allowed to fertilise the field.

The DH is slowly recovering – his cough is not quite as bad as mine now – and so I thought again about getting back to my blog. Then, I found a strange lump on my neck which I’d not noticed before. The GP thought it might be an enlarged lymph node, took bloods to check for any infection and as there was no sign of any, contacted the oncologist’s secretary. The specialist nurse called to tell me he was going to arrange a CT scan. When I asked where, he said in the local hospital. I said I meant where on me, which bit of me was to be scanned? He said chest and abdomen. I pointed out the lump was on my neck.

Someone called the next day to say I’d been booked in for an ultrasound. If it shows up anything suspicious I’ll have a biopsy done. Specialist nurse had gone to the radiology department to explain the situation (and my comment about the lump being on my neck) and it had been suggested an ultrasound would be a better first step than a CT scan. I’m just so glad I made a point of mentioning the lump is in my neck.

The ultrasound is tomorrow, Wednesday 21 July. I looked at last year’s diary and I had my PET scan on 29 July. I’m hoping it might be nothing more than an indication I have had an infection recently – maybe I was the one who got Covid and recovered! But, I have to be honest and admit I’m very nervous about what might be found. And, it is far too hot here to wear the kick ass boots!   

Anyway, this must be the longest update I’ve written done which I suppose serves me right for not keeping up to date with things.

I want to say a big thank you to everyone who has been checking up on me, whether directly or through mutual friends and bloggers. I truly appreciate your concern and kind thoughts.  

I want to go back to Lewis & Harris

174 thoughts on “MarySmith’sPlace ~ So much to tell you! Cancer Diary #36

  1. That was quite a read. I’ve kind of dived in here, ‘cos I don’t visit blogs as often as I’d like. So I hope I’m not intruding when I say I think you’re amazing for the way you are getting on with all this. And I loved the photos of Lewis and Harris – one day, the Memsahib and I will do an island-hopping tour of the west coast!

    Liked by 2 people

    • Thanks so much for reading and commenting kindly on my blog. I’m pleased you enjoyed the photos of Lewis & Harris and I hope you and the Memsahib will get there one day. I’d like to go back but perhaps I should focus on the islands I haven’t yet visited!

      Liked by 1 person

    • Thank you, Michael – at least I am assuming it is Michael though I didn’t have to moderate your comment before. Is it from a different site? Thanks for your kind comments and for re-blogging. Stay well. I hope you are not near the flooding areas?

      Liked by 1 person

  2. Mary I reblogged your post. I did a search of your name on reader because I am so far behind on my reading. I am grateful your hubby is doing better. I understand your frustration with the medical field not understanding the feelings of the patient. Take your time and do whatever is best for you.
    Love,
    Lauren

    Liked by 1 person

    • Thank you, Lauren. I know how it is to be behind with blog reading. Since taking my break in early June I’ve no chance of catching up and will just have to accept many, many posts will never be read and start again.
      I’m glad the DH is doing better but am worried he’s going to do too much and be exhausted!
      It’s back to waiting for results again and I really hate the wait because my imagination goes into overdrive and I imagine worst case scenarios. Hugs.

      Liked by 1 person

    • Thanks, Fiona, he is recovering from Covid and has less of a cough than I have now. The scan led to a biopsy of the lump so am now waiting for the result of that. I always seem to be waiting for a scan or a test or a result!

      Like

  3. Mary, I did not know about your cancer diagnosis but having walked a similar path I understand your fears, thoughts, frustrations, etc, I love your garden with its beautiful flowers, the landscape, and the animals. Thank you for sharing and please know we are all praying for you.

    Liked by 1 person

    • Thank you, Karen. Quite a few of us have walked that path and though we might have/had different cancers I suspect each of us share the same fears, frustrations and hopes – and the odd moments of humour 🙂 My garden has given me a lot of joy over the last months though I’m a bit of a hit and miss gardener.

      Liked by 1 person

  4. I’m so pleased you took a longer than expected break from blogging, Mary. Your trip away looks amazing, and I’m sorry that it was spoilt a little by that niggle at the back of your mind.
    I’m so sorry to hear that your husband got Covid. It’s strange because I know of another couple where the husband got Covid, but his wife never tested positive for it even though they lived in the same house and shared meals, etc. We may never find out why it happens. Glad to hear your husband is making a recovery.
    I hope all went well with the ultrasound.
    Take care.
    Sending hugs,
    Hugh
    xx

    Liked by 2 people

    • Despite the niggle at the back of my mind, the holiday on Lewis & Harris was really good and I would love to go back – though there are so many other islands still to explore!
      The DH seems to be recovering well and is coughing less than I am now. I think you are right, we’ll never know why some people get it and others in the same household don’t. We’re both still being very careful, wearing masks and keeping our distance when we meet people.
      After the ultrasound, which showed the lump was three small lymph nodes, they did a biopsy and I’m still for the results to come through. Always the agony of waiting!
      Hope all is well with you. Hugs.

      Liked by 1 person

      • I’ve everything crossed that those results will be good ones, Mary. And it’s good to hear that the DH is feeling better. We’re very much still keeping to our small bubble for now. I don’t see that changing for the rest of the year.
        Take care.
        xx

        Liked by 1 person

  5. Great to have you back Mary! Your garden looks almost as beautiful as Harris and Lewis. Glad to hear you’re getting some pleasure in between the scans and the breathlessness. Hope DH is better too, Take care Mary and all the best. Cheers!

    Liked by 1 person

  6. Good gosh. You had so much to catch us up on. I’m surprised this post isn’t longer. I gasped out loud when I read that DH got Covid despite being vaccinated and so careful. I did NOT expect that. I’m glad he’s recovering, and he must take it easy. Tell him I said so! I’ve read the comments now since your post and understand you’re waiting for results from the biopsy. We’re all anxious to hear that all is okay. They must be. And in between all of your health news – you include absolutely gorgeous photos of the Isle and the lupines and the cows. Oh, and the lamb! Thank you.

    Liked by 2 people

    • Good gosh, indeed! The DH did not expect it, either, Pam. He was so shocked when the result came back positive. He is on the mend, coughing less than I am, and finding he has a bit more energy. If what he had were mild symptoms because he’d been double vaccinated, I truly hate to think how bad it would have been if he hadn’t been vaccinated. I’m on a mission to make people understand now is not a time for complacency.
      I’m still waiting for the biopsy result. This waiting game really gets to me. It would be fine if I could forget about it but my imagination won’t let me and loves to present worst case scenarios!
      I’m pleased you liked the photos. I do want to feel I’m not totally defined by health problems and there are other – rather lovely – things to be enjoyed. That was probably the last lamb photo for this year – they’re all grown up now.

      Liked by 1 person

      • For one, we’re writers, a wonderful thing but of course we have large-sized imaginations. So the waiting game is extra hard for “creatives.” For two, yes, we are more than just our bodies or one aspect of ourselves. You do an amazing job sharing your health journey (which I think has helped so many) as well as finding the beauty in Nature/Life around you. Now, let’s hope the results come soon with nothing serious. Praying and thinking of you. And may DH feel stronger every day.

        Liked by 2 people

  7. Sorry, it took me so long to catch up, Mary. I couldn’t help but comment, even if I’m about to read more updates, but I’m sorry about your husband. While I was away several of my aunt’s friends, also with both doses of the vaccine, fell ill with COVID as well, and it seems to be a bit of a lottery. I hope things are improving, and the lump was nothing to worry about. I totally understand what you say about doctors and healthcare staff in general. I’m not sure if there is some specific training now, but there wasn’t when I studied Medicine, and it was a bit down to the individual’s sensitivity, and also to the people they trained under as junior doctors. There are fantastic clinicians who are terrible at dealing with people (not quite as bad as in ‘House’ but…), and sometimes people who might be academically not that outstanding are much better at connecting with their patients. Thanks for the beautiful pictures. I’m off to catch up a bit more. Take care and all the best to you and your husband.

    Liked by 2 people

    • Thanks, Olga. I seem to be working backwards today as I’ve already seen your comment on the more recent blog – think we’ve both caught up now 🙂
      I often wonder about the difference in how some medical people communicate (or don’t) with their patients. I guess sensitivity can’t be taught.
      I’m sorry to hear about your aunt’s friends getting Covid and hope they didn’t have it too severely. The DH, I’m pleased to say is definitely on the mend. xx

      Like

  8. Dear Mary, having the DH ill with Covid must have been another added worry you could do without, but as always you weathered it well. I’m delighted he’s well into the recovery phase now even though it takes quite a time. I’ll never understand somebody’s reluctance to take the vaccine. But still, that’s a subject for another time. I’m sorry another worry has been added to your load with this latest lump of nodes. It’s easy to expect the worst but the rest of us are hoping it’s just a blip that won’t stop your recovery. Sending you my very best wishes and….
    Huge Hugs

    Liked by 1 person

    • The DH is recovering well, thanks, David. The coughing and tiredness were the worse aspects but he’s now able to do a lot more without being exhausted.
      It does feel I’ve just not had a break with one health thing after another. And as you are a post behind the latest addition to the list of health things was a deep vein thrombosis, which, I’m glad to say seems to be dissolving. Thanks for your concern, David.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s