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.
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.
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 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.
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.
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!
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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!
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Reblogged this on NEW OPENED BLOG > https:/BOOKS.ESLARN-NET.DE.
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Thank you for sharing my post, Michael.
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Thank you for the better news, Mary! I am so happy about your better feeling now. You will soon leave this fibrosis and other inconveniences behind you. Congratulations to this wonderful mind opening journey. I wish you all the best, and send blessings too. xx Michael
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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?
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Reblogged this on Anita Dawes & Jaye Marie and commented:
Praying the news is good this time, Mary…
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Thanks so much for sharing, Anita and Jaye – much appreciated.
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How Sue would have enjoyed reading that, Mary! Lovely writing…
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Thank you, Steve. I’ve emailed you – apologies for how long it has taken.
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Thank you, Mary. Just reading it. Will reply on email 😊
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Reblogged this on ❀ Welcome To LSS Attitude of Gratitude❀ and commented:
Mary’s blog was buried in my reader. So good to hear from her. Good and not so good news, but her ever present strength is great to experience.
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Thanks for the reblog, Lauren – and the lovely comment with it.
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So glad I searched for your blog.
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So am I – feels like we’ve had good chat this morning 🙂
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I feel that way too 🙂
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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
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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.
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I get that wait time is worry time. I hope your DH takes it easy and that you get great results on your tests. I too know that I probably never catch up. Taking a break when needed is good.
Sending hugs and prayers.
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Your lupines are gorgeous! Mine never did that well no matter how I tried.
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Thank you! This is the first year they have been successful. And, I’ve even had a second, less showy show since I cut them back as soon as the flower was going over. I’m really pleased – not sure if I can ever repeat this year’s success but at least I have the photo 🙂
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Yes, the photo will tell the truth!
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I’m late as I’ve been away, but glad to hear DH is recovering. I think this counts as ‘going through the mill!’ Keeping fingers crossed the biopsy is nothing to worry about.
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‘Going through the mill’ sums it up perfectly! Hope you had a nice time away.
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Thanks Mary I did!
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Wrapping you and DH in much healing love, always, Mary. Loved the photos of your lupins and Lewis and Harris isles. Much <3, always. Xxx
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Thanks so much, Jane – both for the healing love and for your kind comment on my lupins. I was very pleased with them this year:) And Lewis & Harris is just such a fabulous island.
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Hope the feedback from the scan was ok, Mary, and that your OH is recovering well from Covid xx
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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!
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Welcome back! I missed the notification so only just found this post. Do you have your results? -huge hugs-
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Thank you, I was away longer than I expected. I don’t have the results yet – it may be another week or so of the horrible waiting and trying not to second guess what the result will be. Thanks for still being there, despite my long absence.
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It will be hard but we’re all here for you. -hugs-
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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.
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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.
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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
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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.
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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
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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!
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Aw, cheers, Pete. I’m glad to be back though I’m never going to catch up on the blog posts I missed during my break The DH is doing OK, thanks – he’s coughing less than I am now 🙂 Hope all’s well with you.
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All good mary, thanks. Hope the coughing eases a bit
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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.
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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.
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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.
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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.
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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
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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
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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.
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