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

MarySmith’sPlace ~ CancerDiary#35 Goodbye to cancer, hello to fibrosis!

Going for my CT scan and enjoying my few moments playing an extra in Holby City

Wednesday, 02 June: I met with the oncologist on Monday 31 May to hear the result of the CT scan, which was done on Thursday 27 May.

I won’t keep you in suspense. The cancer, it seems, is under control for now. Talking us through the scan showing on her screen, the oncologist said: “We can still see there is a bit of a lump there. But the hope is … that’s dead tissue. But can I say that every single cancer cell has been killed? No, I can’t.  But this is as positive a result as we could possibly have hoped for.

“No signs of any growth, no signs of any progression, no signs of any spread and the disease that is there has responded and the hope is it’s dead tissue. Realistically the only way we know that for sure is with time.”

We’ll meet again in three months to see how things are going.

I should have been shouting joyously from the rooftops but when I asked the consultant about my shortness of breath she said that realistically things might be as good as they are going to get. She didn’t mention lung fibrosis but on my copy of the scan report I read: “Resolution of the radiation induced pneumonitis, now prominent radiation induced fibrosis.”  

Radiation-induced fibrosis is a long-term side effect of external beam radiation therapy, which results in many symptoms, including shortness of breath, that have a significant impact on quality of life. It’s progressive. Average life expectancy from the time of diagnosis is between three and five years.

You can understand why my delight at being – at least for now – seemingly free of cancer is tempered by despair at what else I have to cope with.

I said to someone a few weeks ago that every time I feel I’m making progress something takes the feet out from under me and I have to scramble back up again. I do wonder how many times I’m going to be able to scramble back up again.

I will get my head round this but I am going to take a complete blogging break for the next couple of weeks. I will be back.

#Bookreview: Drunk Chickens and Burnt Macaroni

I’m delighted to share a wonderful review of Drunk Chickens and Burnt Macaroni by author, poet and blogger Liz Gauffreau. It’s the kind of review which makes a writer grin from ear to ear, do a wee happy dance around the desk and decide that writing books is worthwhile after all.

Elizabeth Gauffreau

Photograph shows author Mary Smith handing a certificate of completion of a healthcare course to an Afghan woman.Author Mary Smith Presenting a Graduation Certificate

My Review

The image shows the front cover of Mary Smith's book Drunk Chickens & Drunk Macaroni: Real Stories of Afghan Women.Click on the book cover to purchase from Amazon.

Mary Smith’s Drunk Chickens and Burnt Macaroni: Real stories of Afghan women surprised me. Going into it, I expected the memoir to be interesting, as its focus is on a part of the world I know very little about. What I did not expect was that it would be so compelling.

For three years in the 1990s, Smith and her partner Jon worked in Afghanistan for a nonprofit to provide healthcare and health education for women in Mazar-i-Sharif. Poverty, hygiene practices that led to disease, cultural myths, and reluctance to discuss gynecological problems with male doctors were all challenges Smith was faced with addressing.

She did it by establishing the Female Health Volunteer training project, whereby Afghan women would be trained to provide health education to the women in their villages, focusing…

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It takes an island… #Arran #Scotland #friendship

Barb Taub pays tribute to the absolutely wonderful Arran community who pulled out all the stops to create a magical and memorable meet up for Sue, Barb and me. We might not have been able to hug each other but there was a lot of love and laughter (and a few tears) thanks to the amazing folk on Arran

Barb Taub

Then catch the moments as they fly,
And use them as ye ought, man:
Believe me, happiness is shy,
And comes not aye when sought, man.
—A Bottle and a Friend, Robert Burns

A thank you letter to Arran.

Some weeks ago, I turned to Arran, the small Scottish island I call home, for help. Two friends and I had hoped to get together on Arran last April. Because of the pandemic, we postponed it to this year. But between continuing covid restrictions that left me marooned in Italy, and life-threatening health issues that came up for each of my friends, we realized that wasn’t likely either. (You can read about their personal, sad, funny, and amazingly life-affirming cancer journeys on Mary Smith’s Cancer Diaries and Sue Vincent’s Daily Echo.)

The solution, for anyone who has ever lived on Arran, was obvious. I posted a message on the island’s…

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MarySmith’sPlace – Online creative writing workshops

A couple of weeks ago I mentioned I’d been asked to deliver a creative writing workshop online and an online talk about the various routes to publication along with some marketing/promotion tips. I said I’d provide some further information – and here it is.

These two – free – events are being organised by Aberdeen City Council Libraries who have designed a couple of great posters to advertise the events. As live events can still not be hosted in their library building they have worked out a series of digital online events.

Participants don’t have to leave the comfort of their own homes to take part. The beauty of online events means people don’t even have to live in Aberdeen and can sign up from anywhere in the world.

However, places are limited so if you want to book a slot, don’t hang around. You can find information about the events and booking details here.

I’m really excited about delivering these events. After so long in lockdown, it will be wonderful to see and interact with people. Even if we can’t actually shake hands when we meet, we can have a lot of creative fun mining for memories and planning book launches and promotions.  

MarySmith’sPlace ~ Cancer Diary #24

Wednesday, 17 February: I can’t quite believe I’ve been writing these cancer diary updates for almost half a year and it’s longer than that since the tumour in my lung was first detected. My time on earth would be almost up by now if I’d decided not to have treatment for the cancer, which is a strange thought.

What I also find strange is the pain on swallowing; the acid reflux, the ‘sunburned’ skin and the astonishingly tenacious fatigue are not caused by the cancer, but by the treatment. I’m trying not to think about the side effects of radiation that can start weeks, months or even years after radiotherapy – things like acute radiation pneumonitis. Stranger still is the fact no one – absolutely no one – knows what the cancer is doing. And we won’t know until around mid-April.

At least the side effects are continuing to wear off although energy levels aren’t back to what they were. I still struggle to visit all the blogs I follow so apologies if I’ve not been leaving comments as I used to – my brain seems to work more slowly and most of a day can disappear – same with replying to emails. I’m sure I will return to ‘normal service’ in time so bear with me if I don’t reply straight away.  

I’ve also put a wee toe into the work pool again. I’ve been asked to do a workshop and a talk online. I wasn’t sure at first, especially when I was feeling so tired and guilty at not having time for everyone’s blogs and emails and messages. In the end, though, the appeal of doing something ‘normal’ – as normal as online instead of face to face can be – was too strong to resist. I’ll share the details in a post soon.

The weather hasn’t always been great for walks. There have been days when keeping warm meant wearing so many layers of clothing I resemble the Michelin Man made me wimp out and stay at home. I’ve managed some walks and some tidying in the garden.

Every year I love to see lambs appear in the fields. My son always laughed at my excitement on seeing the first ones – but for me it wasn’t only seeing cute it was the wonderful feeling of having come through the darkness of another winter. This year, my delight at seeing my first lambs was tempered a little with the thought this may be the last year I am able to relish the feeling of having survived another winter.

It’s not a maudlin thought. It doesn’t depress me. At the start of last September I wasn’t sure if I’d see snowdrops this year, or lambs. Now, I think I probably will see the daffodils flower in my garden and maybe even the apple blossom and smell the roses.

MarySmith’sPlace ~ Covid vaccination, is there life without wine: Cancer update #22

Wednesday 03, February: Another week has gone by at the speed of lightning and I don’t understand why, when I’m doing next to nothing, time continues to go by so quickly.

What exciting things happened this week? Well, the new specialist nurse called the day after I posted on the blog saying he hadn’t rung, when I’d really needed someone to make contact. I told him I thought he was going to call on Wednesday, as the substitute nurse did the week before. I think it comes down to the interpretation of “will call every week.” I take it to mean on the same day each week, the nurse takes it to mean any day of the week. I did try to explain how it feels to have finished treatment and to be left, not knowing the result (I understand why there has to be a wait before the scan) feeling abandoned. He said he understood. When he said he’d phone again next week I suggested we put it in our diaries. This seemed to be a bit of a foreign concept but was agreed. It worked and he phoned again today.

I was less needy when he phoned today, thanks to having a long chat with my GP yesterday. I’d had to call to ask for a laxative prescription. The pain on swallowing is easing thanks to the liquid morphine but the down side – there has to be one, doesn’t there? – is the constipation the morphine causes. It’s been a while and I’d forgotten the agony. When I was on chemo and had to take anti-emetics I learned, after a nightmarish first round, to up my fibre intake to prevent the constipation. However, when it hurts to swallow, eating dates, dried apricots, prunes, liquorice in the necessary quantities is not so easy.

Anyway, apart from sorting out the prescription for my various medical supplies we had a good long chat – the kind of chat which helps make me feel human (like a Maggie’s Centre chat). It’s quite possibly the kind of chat which helps her check up on whether I’m showing any mental health issues which should be addressed.

Last, but not least, I’ve been offered a Covid vaccination this week – tomorrow, in fact. Last week, it was clear from the Scottish Government’s list of categories for the vaccination I wasn’t likely to get one until May – or even the autumn. When the nurse phoned last week I asked him. He was sure I must be eligible for a vaccination before long and said he’d check and get back to me. He did and had to admit I was right – there wasn’t a category which included 66-year-olds with cancer so I was more than a little surprised when someone from the health centre rang me on Saturday to offer a vaccination date. Apparently the Scottish Government sent out an email on Friday afternoon with a new priority category for vaccinations, which includes 66-year-olds with cancer. Yay!

Unfortunately, my dry January has morphed into dry February as the acid reflux still prevents me from enjoying a glass of wine. I have tried from time to time – once a day since 31st January – to have a test sip but the heartburn is instant and ferocious.

Because I always try to find something positive amongst all the horrors of cancer treatment I can report that I haven’t had to shave my legs for months.

MarySmith’sPlace ~ Life dribbling out – Cancer dairy #21

Wednesday 27, January: Last week’s update was very late, appearing on Wednesday instead of Monday so when Monday came round it felt a bit soon to do another cancer post. And here we are at Wednesday again – perhaps this is going to be the update day for now.

There’s not much to update really. The pain on swallowing is still there – no worse than a week ago but no better. This morning when I woke I lay for a few moments before trying a tentative swallow, promptly curling into a ball at the pain. It’s so depressing. All pleasure in eating and drinking has disappeared. It hurts, whether I’m swallowing a mouthful of mashed potato or a mouthful of milkshake. Sipping or gulping – it hurts.

The ‘sunburn’ is still burning and is puffy with fluid. A friend kindly sent me gel-filled cooling pads which have been bliss to use. My skin is so hot it soon heats up the gel pad until it’s like a hot water bottle – then I swap it for the pad cooling in the fridge.

Worst of all, though, is the loss of energy. The oncologist warned me about fatigue, as did the specialist nurse in Edinburgh and the radiographers but although I expected to be tired – after all I was tired when having chemo – this is a whole different level of tiredness. This is dress, come downstairs for breakfast – need to go back to bed. This is sleep for a couple of hours, reply to two or three emails – need to go back to bed. Sleep again. I think I’m possibly awake for about six to eight hours a day.

I know – it’s one of the first things I learned since having cancer – every single person with cancer is different (even if they have the same kind of cancer) and their reaction and response to treatment is different. My friend Sue, while continuing her cancer treatment, posts on her blog several times a day – I think I’ve done really well if I manage two posts in a week – and she’s working on a mammoth editing task at the same time.

I’ve more or less abandoned attempts to finish my annual accounts, had to give up this week on Pilates and a Burns evening. I’d been so looking forward to seeing and listening to other people (on Zoom) as now my treatment is finished I see no one apart from the DH and much as I love him…

When I was first diagnosed with lung cancer I had so much energy and drive. There was much to do, to sort out and to organise before my demise and I had the energy with which to do it. Right up until I started treatment. By the second round of chemotherapy I was already jaded and faded and letting things slip. Now, after all the chemo and the radiotherapy sessions there’s a deep exhaustion. I know my throat and my burnt skin will heal – probably – but I don’t know if the tiredness will ever go away.

If not – if this is as good as it’s going to get. If the ‘extra time’ the treatment has bought me comes along with this level of no energy and tiredness – then it was dearly bought. Although, I rather enjoy the seductiveness of my bed, of slipping under the duvet – morning, afternoon or evening – and leaning back against the pillows, book in hand for a page and a half before sleep takes me.

Is it a healing sleep or is it a sign on life dribbling out?

And on a day when it would have been quite good to speak to someone involved in my care, the new specialist nurse failed to call.

MarySmith’sPlace ~ End of treatment – Cancer diary #20

Wednesday, 20 January: I find it quite mind-boggling it is twenty weeks since I started posting these cancer diary updates. That’s almost five months. When I posted the first one it was with the knowledge I would have maybe seven months to live if I chose not to have treatment. Without treatment I’d have maybe a couple of months left – but I don’t know how many more the treatment may have bought me. Cancer and uncertainty go hand in had.

When I posted my update last Monday I had only six more radiotherapy sessions left. Even as I crossed each one off the printed schedule the final session never seemed any closer.

Before heading off for radiotherapy last Tuesday morning, a quick look at my blog post had me in tears at the messages of support and good wishes and love from so many people from all around the world. After my radiation session I had my weekly consultation with the specialist nurse. I thought I’d pulled myself together by then but she immediately picked up on my emotional fragility. I admitted as it became tougher to deal with the side effects, it became harder to ignore the elephant in the room, which was the uncertainty of what result the radiotherapy, and the chemo before it, was going to bring. It’s going to be at least six weeks before I have a scan to see what’s happened – to learn if the treatment has bought a few extra months or a couple of years. Most of the time, I can consciously put that concern on one side with pragmatic me accepting there’s no point in worrying over something I can’t control – that, however, doesn’t stop my subconscious from dwelling on the questions – how much time? Will it be worth it? Will I be fit again or will I be an invalid for whatever amount of time has been bought?

The nurse said: “Because of Covid, I can’t give you the hug you need but I can cry with you.” As you can imagine, that almost did for me entirely but I wiped away the tears and suggested she get on with the checklist of questions about side effects. She said: “It is worse when someone’s nice, isn’t it?” I agreed and proceeded to tell her the pain on swallowing is worse and the tiredness. I showed her the pouch of fluid. She said she’d mention it to the doctor.

Fortunately, before Tuesday became a total soggy weep-fest I had something enjoyable to do in afternoon lined up. Last week, I wrote about the woman who was prompted to have a breast lump checked out after reading my blog. I wasn’t sure if she wished to remain anonymous but she said she didn’t mind so I can call her by her name – Sarah. After we met in Maggie’s last week we arranged to walk in the Botanical Gardens and it really boosted my spirits and, I hope, Sarah’s.

Grey Squirrel

It was a bright, crisp afternoon and I’m sure the gardens looked lovely. I remember we paused to look at a tulip tree and to mutter darkly about the presence of grey squirrels but mostly we talked, sharing family history stories and finding links between two families who are not connected – of course, we find a link – Clydesdale horses. It was so good to spend time with someone non-medical, just doing an ordinary non-cancer, non-Covid (apart from wearing masks and keeping two metres distance) thing. And if Matt Hancock wants to make any snide remarks about socialising rather than exercising I can show him the 14,000 steps I clocked up that day.  

Winter sunshine

On Wednesday I had an unexpected consultation with my oncologist who wanted to check out the fluid pouch. It seems to be a bit of soft tissue inflammation caused by the radiation and not anything particularly worrying – one of those ‘keep an eye on it’ things. She prescribed a different antacid as the one I’ve been taking is no longer available and she also prescribed an oral morphine for the pain. She said she thought I was tolerating the radiotherapy well – my skin showed little redness, my energy levels were good and I’d been managing the swallowing and heartburn. I’m hoping it means I’ve escaped the need for a feeding tube, even if the side effects continue to worsen for a couple of weeks after the end of treatment. Just in case I became too blasé, she reminded me of the risk of inflammation in the lungs four to six weeks after the end of radiotherapy, which can – rarely – be life threatening.

Me and Sarah after our walk

It’s probably no wonder after the emotional tensions of Tuesday and Wednesday plus the long walk in the Gardens I was pretty tired by the end of the week. The DH came to the Village hotel to collect me on Saturday. As I was leaving the receptionist presented me with a lovely pot plant, saying how much she would miss me and our brief chats at reception. Tears again – they seem never to be far away.

I slept most of the weekend and then it was Monday and the day of my last radiotherapy session. We made good time up the road and I was in and out in less than twenty minutes. It felt very strange –none of the expected feeling of jubilation that it was all over – just a very flat feeling. I walked out of the hospital carrying my mask and met the DH in Maggie’s as I wanted to say goodbye to the staff there and thank them for their support.

My radiotherapy schedule – as I’m the patient, I’m ignoring the need for patient confidentiality!

Back at home, I crawled into bed and was asleep within moments, only waking when the throat pain became too bad and I’d to dose myself with the morphine and the antacid. I’m mostly worried about not drinking enough and becoming dehydrated. Yesterday was spent mostly asleep. When I woke I tried to drink and eat and to cool down the skin on my chest. It looks like I have been sitting for hours in hot sunshine with no protection. A cold flannel feels soothing for a few minutes then the heat from my skin makes it become warm.

This morning when I took the morphine I promptly threw up. When the nurse called to see how I was doing, she wasn’t concerned about my vomiting and said I should try again to take it, maybe after eating something. I did and it stayed down.

I went to the dentist this afternoon and she sorted the dodgy tooth which had lost the temporary filling she put in the evening before I started chemo. She suggested putting the flannel in the freezer (though not to put it directly on my skin) and I tried that and it was wonderfully cooling.

I’ve been awake for longer today – possibly because I have taken less morphine – and I’ve found the energy to write this update, and I ate a big bowl of mashed potato oozing butter and grated cheese, which slipped down smoothly. I know, though, I’m skirting round the issue of whether or not this treatment will have been worthwhile and six weeks is a long time to push it out of my mind.

My mask – planter? art work? lamp? hide it in the attic?