MarySmith’sPlace ~ Cancer Diary #26 – all kinds of medical questions; so far without answers

Wednesday, March 03: My appointment with the oncologist was on Monday morning. I felt bad when the receptionist asked if I was coughing or had any other signs of Covid but I wasn’t going to miss the chance of seeing the oncologist so I shook my head.

When I mentioned it to the oncologist, she said they’d do a Covid test just to be sure. I agreed as long as someone carried it out as I know there is no way on earth I could shove an extra-long cotton bud down my throat to meet my tonsils, nor up my nose towards my brain. The specialist nurse said he’d do it. I did wonder if that might be the end of our barely-begun relationship. It was good to meet the person who has so far been a voice on the phone – can’t really say what he looks like because as we (I) were running late this morning, I left the house without my glasses so couldn’t see very much.

My list of questions wasn’t really very long: Is the breathlessness and the cough symptoms of a side effuck such as pneumonitis? If so, what’s the treatment, how long will I have it and what’s the prognosis?

As it was too early to have the scan done, I’d assumed this consultation would be a bit of a formality. Oh, no. The consultant did a thorough examination, including a fair bit of prodding at my neck. My blood pressure was very high and though she did say it was possibly because of seeing her, I should check it over the next few days. Oxygen levels were 100% so then she had me marching me up and down the corridor with her to check the levels of breathlessness and pulse rate.

It was as we were about to go back into the consultation room, she asked me about my friend, Sue – floodgates opened. She was apologetic about the timing of her question but as she said, when I’d stemmed the flow of tears, “There are no words.” Probably the best things she could say.

I explained we were going to meet with a mutual friend, Barb from Arran but currently locked down in Florence, on Zoom that afternoon, so she sent me off to get an X ray done immediately as sometimes there can be a wait and she wanted me to be on time. The specialist nurse did the Covid test (almost painless), and I had an armful of bloods taken.

The oncologist thought she might have felt a swollen lymph node in my neck – but couldn’t say for sure if it was that or if it was inflammation from the radiation. As she doesn’t like not being sure, she has decided bring forward the scan to see what’s going on.

Yesterday, the Covid test came back negative so I asked the specialist nurse what else could be causing the breathlessness and the cough if it’s not Covid and not pneumonitis. Is it, in fact, the tumour tweaking its tail? Is it growing instead of shrinking? Blocking my airways as it did before chemotherapy reduced it? He said there was a possibility of scarring of the lung tissue. That would be permanent. I’d always be breathless.

Today, specialist nurse said the bloods were all good apart from raised C-reactive protein (CRP) and would I mind arranging a urine test. That’s gone off for testing. I do think they should give you the label to attach to the sample container after it has been filled – and dried. Just a thought.

I’m a bit more worried than I was first thing on Monday morning before the consultation. It seems to have been such a medical-focussed couple of days and it seems a lot more things could be not going quite right.

As for the fatigue – “rest, don’t try to do too much” – so the contents of the larder will remain all over the kitchen worktops for now. And she thinks a two-mile walk is a bit ambitious. Better to do shorter walks and not get so tired. Oh, and on top of all that, I’ve been summoned for a mammogram!

I promised more lambs!

And other signs of spring.

117 thoughts on “MarySmith’sPlace ~ Cancer Diary #26 – all kinds of medical questions; so far without answers

  1. It sounds as though they are getting (I hate this saying) their ducks in a row and doing something positive about your condition and I think that’s great.
    Off the subject of the side effucks for a second – in that first lamb picture it looks as though that little guy has a band around his tale. I thought farmers weren’t supposed do that anymore. Except for that – your pictures really are grand.

    Liked by 1 person

    • I hope they can do something, Lynn, I really do. I hate being stuck in this place of no answers.
      I don’t think lamb tail docking has been made illegal. I’m sure it’s still done to prevent fly strike, but
      I’ll check with our farming friend from Crossmichael.

      Liked by 1 person

  2. Gosh so many prods and swabs and emotions and questions and few answers but you’re plodding on and the lambs and bird are hopeful signs of Spring. Keep plodding and hopefully things are sprouting in the garden too. Xxx

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    • Spring is definitely coming and more of my bulbs are coming into bloom in the garden, Janette, so that’s a positive. I hope I don’t have to wait too long for some answers about my health.

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  3. So far, nothing indicating you should worry. (Easier said than done) If you handle breathlessness the right way, it could become an attractive trait. Imagine telling a handsome waiter that you thought his service was breathtaking. 😁 There’s no end to what could be accomplished. Still praying for everything to go well.

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  4. Lambs and birds are good!
    When I was in the London Ambulance Service, friends and relatives would frequently ask me all kinds of questions. Many of those were about why doctors and specialist nurses didn’t seem to be giving them enough information about their condition.
    I had to think hard, before telling them the truth.
    That truth is that the doctors don’t know. They are still clutching at straws, despite the science and innovations. Not unlike magicians and spiritualists in the 19th century most of it is still guesswork.
    Take care, dear Mary.
    Best wishes, Pete. xx

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    • Pleased you like the lambs and bird. I know you are correct about the medical profession not knowing the answers, Pete. And the tests they do so often lead to more tests being done rather than answers! Yet, still, I hope there will be some answers soon – and something to stop me coughing non-stop, which is exhausting!

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  5. Another great hurry-up-and-wait post. Seems like each answer is just more questions. But I absolutely love the lambs and the robin. There’s something about spring this year that seems especially hard-earned.

    I’m picturing huge clouds of my MIL’s pink light around you. XXX

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  6. Hi Mary,

    Interesting post. I trust everything is going well?

    Btw, have they done an MRI or CT Scan of the brain? The reason I’m asking is that my wife, Alexandra, had breast cancer three years ago, and she had the usual mastectomy, radiation, and chemo treatments for nearly a year. Following those, she was pronounced cancer-free. However, a year later, she started to have difficulty walking, headaches, and blurred vision. Only then a CT Scan of her brain was done, and it showed the presence of a large tumor. It was confirmed by a couple of MRIs. The cancer had travelled from her breast (they call it, fancily, metastasized) into her brain. Alexandra did endure an 8-hour brain surgery and radiation, and they said all the tumor had been removed. While she’d healed well, and did feel okay, it was only for another three months. There were some spots of tumor left behind, which grew rapidly, so much so that unable to walk, Alexandra was bed ridden. They did try another round (daily for 5 days) of radiation, but it didn’t help (yes, during radiation she had to wear a mask similar to yours). Following a three-month stay in the hospital, Alexandra passed away last October.

    Hence, I’d strongly suggest to get a CTS/MRI of the brain done, if only for the peace of mind.

    Wishing you all the best,

    Waheed

    Liked by 1 person

    • Oh, Waheed, first my condolences on the death of Alexandra. I am so sorry to hear such sad news. She went through so much and it must have been hard for you to stand by and watch.
      I have had a brain scan to check there is no sign of cancer in the brain and it was clear. Fingers crossed it stay that way. Thank you for your concern. Best wishes.

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  7. Blooming heck…but nice that ur Onc. was considerate with your timing. Think the shorter walks are good advice, It’s so easy to push too hard rather than feel wimpish, but not worth it. Enjoy the sun and spring bursting out – seems a long time since you started these blogs, big hugs. x

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    • I took the advice and had a short 1.5 mile walk with a friend – in the rain – today. The swans on the loch were magnificent and I forgot my camera. It is a long time, Steph. Six months to be precise. x

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  8. This is such a long and arduous, journey, Mary. But as Spring approaches, there is hope. Trite words, but meant well. I hope there were smiles and laughter as well as tears in your zoom meeting with Sue and Barb. x

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    • Yes, lots of smiles and laughter and Sue has put up a lovely post about it now, Judith. It’s grey and wet here today but I’ve had my dose of fresh air so I can snuggle with the cat and read a book.

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  9. I love your spring baby photos Mary but what a roller coaster of stuff going on. The oncologist sounds as if she’s pulling her weight though which is great. I’m sure short walks are better than pushing yourself too far all at once & then being shattered. Please come and have a socially distant short walk round the llama field in the sunshine a
    ny time.
    A wheelbarrowful of love,
    Juliet xx

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    • That’s a lovely offer, Judith. It’s been a bit we this morning and grey but hopefully better weather is on the way and I can visit the llamas. As long as I don’t have to wheel wheelbarrows of muck around – I’m quite fragile 🙂

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    • Thanks, Joelle, I think she is quite special – and she listens. And admits when she doesn’t know something, though I’d rather she knew everything 🙂
      And I was back on time for the meet up with Sue and Barb, which was amazing. We maybe couldn’t hug but we could feel waves of love across the ether.

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  10. I am sorry this is such a rollercoaster of more questions and concerns. I am glad your Covid test was negative. I hope you will take her advice and try shorter walks rather than a longer one.The lambs are so cute. What kind of bird is that? It has the rusty chest like our bluebirds but wings like a finch. Continuing to pray for you, Mary.

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    • They are certainly doing all they can to find out what ails me, Liz (apart from the cancer). It would be wonderful to be free of the persistent cough, which is irritating and exhausting!
      I like the two little posers staring straight to camera 🙂

      Liked by 1 person

      • I also get a kick out of lambs (and other animals) copping an attitude when we humans take their picture. (Yeah, I’m frolicking in this field. You wanna make somethin’ of it?)

        I hope your care team can help ease the cough.

        Liked by 1 person

    • I’ve possibly mentioned I have a thing for lambs! And, yes, it is a chaffinch, which was singing his heart out on that tree.
      The oncologist was very considerate when she knew I had to be home on time to Zoom. She doesn’t know Sue but she knows she matters to me.

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  12. It’s sounds like you had a good appointment, even though the questions still follow each other…

    On Monday, I met a lady sitting on a bench halfway round my walk … she said it was her first time out since before Christmas, and she couldnt believe how tired and breathless she was. I remembered January, when I had to stop and sit on the same bench – now I’m doing two circuits when I have time. My point, my dear, is that we are just lockdowned people not getting our lungs used enough… you have been through hell and are coming out the other side. So, keep doing enough, and maybe a little more, but don’t worry if your lungs aren’t keeping up.

    Lots of hugs xOxOxOx and of course a kiss from Roscoe ❤

    Liked by 1 person

    • Yes, lots of unanswered questions, Jemima, but I feel they are trying to address the issues and find out why I’m so breathless and coughing so much.
      I accept the fatigue is part of the radiation side effucks and will eventually wear off. I take your point about lockdown lungs not being used enough but I don’t think this is the case with mine – and the cough is so annoying (I’d hate to sit in the same room as me and listen to that hacking cough) and exhausting. The scan being brought forward may give some answers – though may be not the answers I want.
      How is my darling Roscoe? Has his abscess cleared up? xx

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  13. I’d rather have a doctor who is honest and admits “I don’t know,” than one who bluffs through the answers as if he/she knows it all. I like your oncologist! A mile walk is still ambitious. Don’t push yourself too hard, but I get that you want to push a bit. I’d do the same. Lovely lambs give hope for spring and renewal, Mary. ❤

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  14. You are so right, Pam. The one who can admit she doesn’t know is going to make sure she finds out.
    I’m going to cut down my walks. The hope is if I do a short walk I won’t be too tired to walk again the next day and so start to rebuild my stamina.
    I love seeing lambs 🙂

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  15. Glad you managed to get out today, albeit for a short walk. Maybe in the short term it just means more short walks rather than longer walks, the main thing is being able to get out. Sorry that the waiting for answers continues, maybe having the scan brought forward will see some answers forthcoming. Enjoy your reading and the lambs!

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  16. Sorry you’re having to cope with the breathlessness and the cough, in addition to the unanswered questions, Mary. Your strength continues to astound me. Sending love.

    Liked by 1 person

    • Oh, Wendy, I have to say I’m feeling pretty fed up at the moment. It just feels like I’ve done everything I was supposed to do – chemo, radiotherapy – and have no idea where the tumour is at. I’ll perk up again – especially if the sun come out 🙂

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  17. Spring is indeed here next come the bluebells…I am sorry you didn’t get all answers, Mary but it sounds like you got honesty and that is good…As so many people present differently throughout their treatment there is no one size fits all which doesn’t help you… as someone who literally from birth had a winter cough and breathlessness, I sympathise…Onions and brown sugar my mother used to make… then make me drink the resultant liquid…foul though it was it worked…Apart from the first November, I was here I don’t suffer from that anymore …a blessing… warmth helps…so what I am saying is if your weather is cold and damp that will be a factor…Please take care and reign back on long walks and build up to them Hugs xx

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    • I look forward to walking in the bluebell woods, Carol. We have quite a few around here to visit. I don’t much fancy liquid onions and brown sugar but I can imagine it worked. I’m sure you’re right about the cold and damp not helping the cough – thought you were going to invite me out to your Thai warmth and sunshine! It will get warmer here – just hope it will be soon. xx

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  18. Hi Mary, it has been rather a traumatic week for you with all these tests and no proper answers as well as Sue’s news which also knocked me for six. Before I had two chronically ill children, I really thought doctors were all-knowing. Over the years, I have come to realise that doctors don’t actually know that much and a lot of treatment is almost an experiment with an outcome within a range. My sons will both struggle with health issues their whole lives. I am sure that things will improve for you as your body heals from the damage inflicted by your treatments.

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    • So far, all the tests have come back clear or negative so I don’t feel I am any further forward. I had to smile when you said you thought doctors were all-knowing until you had two chronically sick children and realised doctors didn’t know so much. Beetley Pete left a comment earlier which echoes what you say. Our parents’ generation thought doctors were up there next to God! At least the scan will be sooner rather than later and I might get some answers then.

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  19. Mary, I feel so much for you. What an emotional rollercoaster of a visit – especially since you hadn’t expected it to be so medically focused. (Although focused might not be the right worked in the non-glasses predicament of the day!) It’s good your covid test was negative as was the pneumonitis but obviously still so much of great concern. I hope there are days when the fatigue is less and you can enjoy those beautiful signs of Spring – the lambs always have me smiling! Take good care of yourself, and one has to trust that the doctors and nurses are doing their best for you. hugs xx ❤️🤗

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  20. Love the pictures, Mary, and I’ve just read Barb and Sue’s posts, and the meeting sounds delightful (even if it wasn’t exactly how it had originally been planned, but nothing is these days, and you have more obstacle to face than most of us). Although I’ve never worked in oncology, it’s true that there are lots doctors don’t know, although research keeps moving ahead (but there are so many things to research as well…). Some symptoms are so unspecific that there is a long list of things to check before you get an answer, but your doctor is working hard, for sure. It’s good to see you’re enjoying your walks. Take care, Mary. ♥

    Liked by 1 person

    • Who doesn’t like cute lambs? 🙂
      I know my oncologist is working hard for me. This week, so also is the specialist nurse and my GP as between them they try to figure out what’s the problem as all tests come back clear. The weather is a bit disappointing so I’m hoping for some sun soon to perk us all up.

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  21. Sorry about the nasty cough, Mary. My brother had lung scarring, which left him breathless when he exerted himself, and he coughed a lot, too (Myositis). I think you should take it easy on the walks–maybe shorter jaunts a few times a day. I’m glad you’ll be getting your scan sooner. What did the X-ray show? I just wish the side effucks from the radiation would wear off; then you’d probably feel a bit better. So much to go through! You and your body are exhausted.

    You live in a lovely area where you can enjoy nature. Nothing says spring like bunnies and lambs. Such sweet photos. Thanks for sharing, and take care of yourself.

    Gentle hugs,
    Linda

    Liked by 1 person

    • The cough is driving me nuts, Linda. It’s so irritating and exhausting. Luckily, it stopped during the night and I slept straight through until morning 🙂
      The X ray showed no sign of pneumonitis. At least the oncologist want to get the scan done sooner than originally planned so fingers crossed there will be answers then.

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  22. Here are lots of good wishes coming your way. And if you answer this comment I’ll know you’re not taking it easy as instructed but keeping up your usual exemplary standard of social media etiquette, possibly at the cost of your own energy. Instead I prescribe a little potter round your garden or listening to one track of music (if it were me I’d choose Chopin or Ella Fitzgerald singing Cole Porter).

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  23. Sorry you are still waiting for answers Mary but at least your oncologist is making every effort to get to the bottom of the cough… Sue’s news has all of us knocked for six..thank goodness for zoom and whilst not the visit you had planned for… it is at least face to face. Lovely lambs and glad you have managed to get out in the fresh air even if for a shorter walk than you are accustomed to.. and getting a night’s sleep is not trivial and what you need.. sending love as always..♥

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    • Thanks, Sally. I didn’t get a chance to speak to the oncologist about any of the supplement suggestions you made as the consultation turned out to be a lot more full on than I expected – and, of course, other patients are waiting so you are suddenly out the door. I’ll be seeing her again before very long. My neighbour with the wholefood shop is a qualified herbalist so I’ll ask her advice, too.
      It’s been quite a week one way or another. I’ve now been put on antibiotics – temperature keeps spiking despite bloods being OK and urine sample clear.

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  24. Sounds like a mixed bag, Mary, but all in all, not too bad – and what wonderful care you are getting. Sue has had to struggle with hers. The lambs are so sweet and playful – we went to a goat farm with my grandson a few weeks ago and got to hold some less-han-a-week-old baby goats. They loved to snuggle. Walking two miles? That challenges me now, although I can do it – I have asthma and breathing can be difficult even with an inhaler. I do hope this is just due to scarred lung tissue, which was the first thing I thought of. Blessings on the wing to you!

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  27. I agree with what they said to you about taking shorter walks and trying not to do too much, Mary. I know it can be frustrating just sitting there knowing there are jobs to be done, but those jobs ain’t going anywhere, so tackle them a bit at a time (and only if you feel like it). It’s good that you’re still going out for walks, but maybe sit down every now and again (if you’re allowed to under current pandemic rules) and take in the sounds and views. If you’re anything like me, we tend to rush around too much and not take in all the beauty surrounding us.
    Take care
    xxxx

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    • I’m trying, Hugh, but it seems my walks get shorter day by day because the coughing makes me so breathless. If they could get the cough sorted, I’d manage things better. And, of course, now, the weather is not great for walking. Looking in last year’s diary I see it was much the same until lockdown started – then we had lovely spring weather! xx

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