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?

MarySmith’sPlace ~ Radiographers Rock! Cancer diary#18

Monday 05, January 2021: I fully intended writing this update yesterday – fully intended doing a Zoom Pilates, class, too, and had packed my mat and the baggiest tee shirt I could find – but by the time I was checked into the hotel, and the DH left, I was done in. Leant back on the pillows and woke up too late for Pilates.

Last week I came up for three treatments, staying for two nights. I had my weekly meeting with the specialist nurse – a different from the previous week. Basically, they go through a check list of side effects from nausea to tiredness, from skin problems to appetite problems. So far, I’m glad to say I can say no to almost everything – except that the heartburn has returned. I was prescribed an antacid with Oxetacaine, a local anaesthetic – which I was assured would be helpful in easing the pain when my throat gets worse. It is described as peppermint flavour, a description written by someone who has clearly not swallowed it.

By then, tighter restrictions were in place and the hotel restaurant was closed, though they did offer a reduced room service menu. On my first night I received a call from an NHS Manager to apologise for how things were at the hotel. I said it was fine but she said someone had complained the previous night about the room service food and she was going to try to find alternative accommodation. I said I was happy with the location as I can walk to and from the hospital easily and didn’t really want to move so far away taxis would be involved – or, worse – be admitted to a ward. That last might not have been a terribly diplomatic thing to say to a hospital manager.  

I did try the room service food and it was horrible. Next day, I went to the filling station across the road which has a small but well-stocked Waitrose and filled a basket with lots of lovely tasty things for a picnic in my room.

I was asked to report to a different room and machine on Thursday because a paediatric patient who had to be under anaesthetic needed my room. My first thought was for the child’s mother who wouldn’t be able to stay in the room and must surely be beside herself with worry.

When I arrived for my radiotherapy on Thursday, a message came through from an NHS manager (a different one) to say on Monday I’d to report to the hospital and not check in at the hotel. This was on Hogmanay and I couldn’t imagine how alternative accommodation could be found over the New Year holiday weekend. I went home wondering and worrying about where I’d lay my head when I next went up for treatment.

Yesterday – Monday – the DH drove me back to Edinburgh for an 11am treatment session. A paper with a booking for a self-catering studio room was in the changing room. After the session – first time I’ve met a male radiographer! – the DH and I went to take a look. It’s in a very central location – central for the sights of Edinburgh, that is, but a long way from the hospital. If I was here on holiday and everything was open it would be perfect but it would take about an hour to walk to the hospital so I would need to depend on a taxi picking me up and taking me back. Now we are in full lockdown and this new strain of the Covid virus seems to be so much more virulent, I don’t fancy getting in taxis. Well, I could walk one way but I think a two-way walk might be too much, especially if it’s raining. And, Edinburgh is cold.

Fortunately, The Village was very happy to welcome me back. I feel bad the NHS never got in touch with them to explain why they had not made any bookings for patients this week. Perhaps if they had explained about the problems with the food, the staff could have done something to address them? They are certainly very happy to do anything they can – including installing an extra heater in my room. Did I say Edinburgh is very cold?

I’ve now had nine radiation treatments. Tomorrow I’ll reach the halfway mark. I’m still in awe of the technology. When I said I’d been watching YouTube videos because I couldn’t visualise how the machine revolved, the radiographer picked up the remote control and demonstrated how it revolves round me and under the table. Their patience and willingness to answer my questions is a delight. I think it’s because they are so proud of their work and their skills, they are keen to share their knowledge and give people a better insight into how radiotherapy works. Whatever, it is – as far as I’m concerned radiographers rock!

MarySmith’sPlace ~ Cancer Diary#17 What happens in the radiotherapy room

Monday, December 28: I’m about to pack my case for the next trip to the Edinburgh Cancer Centre tomorrow (actually, that’s rubbish I’ll be throwing things in the case at the last minute tomorrow morning!). Now I’ve had four treatments and know what to expect I’m less nervous than I was last week. Although, after five days of stuffing my face with Christmas fare. I’m a bit concerned my mask won’t fit me anymore.  

I seem to be the only person worried about the amount of weight I’ve gained – and am still gaining – since my diagnosis. Everyone else tells me it’s good because my body needs the calories to repair itself from the radiotherapy – plus, I may yet become unable to eat because of a very sore throat. My walk from hotel to hospital and back isn’t really going to do much for weight loss, nor is the food in the hotel. It is pub grub: burgers (which don’t come singly but in a ‘stack’ of two, chicken wings, wraps, fries – thin fries, lattice fries, sweet potato fries (are they less fattening?) and all in large portions. I chose a ‘super salad’ one night and it was enormous packed with quinoa, peas, broccoli, avocado and goodness knows what else.

I’ve only two nights there this week but after New Year I’ll be staying for five nights a week for two weeks. I have to do something or I’ll be the size of a bus. The receptionist did say the kitchen staff would be very accommodating if I wanted to request something different. A bowl of homemade soup would be welcome.

I know some of you already know about radiotherapy, having experienced it, but for those who aren’t sure what happens there’s an explanation on the Macmillan website here. I asked if I could take a photo of the machine. I have to stop myself from using expressions like sci-fi because, of course, this isn’t science fiction but science fact.

My mask waiting for on the table under the radiotherapy machine. The black objects on the mask are the screws.

Once I lie down, with my little bit of kitchen towel to protect my modesty, the radiographers fit my mask and fasten me into place – this sometimes takes a bit of faffing around to get it right but it doesn’t feel so bad now. The table I’m lying on is then raised. By then I have my eyes shut. And my mouth, though they assure me I can open my mouth. I haven’t tried it yet though on the last treatment my lips did twitch slightly in a smile. This was because, although I know there isn’t one, the machine makes a noise, which in my imagination sounds like a little robot on tiny metal feet scurrying from one side of the table, behind me to the other side to direct the next beam of radiation before scurrying back again. In fact the machine rotates.

They put the light out so I could capture the infrared beams which criss cross me – but I failed. Did get a close up of those screws!

Two YouTube videos show exactly how it works. The first one is short; the second one is longer and shows how different kinds of cancer are treated. Both give you the idea of how the machine works – though the second one is my favourite with its dramatic soundtrack. You only need to see the first couple of minutes to get the idea.

I also took a photo of my tumour – or, at least, the area which is being treated – reflected from inside the head of the machine on the floor.

The area they treat reflected on the floor. And you can see one of the infrared beams.

Then, I took one directly up into the head of the machine and got this image. The radiographer explained lead leaves fit round the treatment area and can move when the machine moves around me, shaping the beam of radiation to the tumour. It means the cancer cells in the tumour receive a high dose and normal healthy cells nearby receive a much lower dose. I think that was the explanation. I was so excited at the image I’d captured I’m not sure if I took in all she was telling me. The wonderful thing about the radiographers is they will explain it to me again and answer any other questions even though they must have answered them all countless times.

Isn’t that incredible? How can something so beautiful be trying to kill me?

It’s strange to think it will be 2021 when I write my next update. A few months ago, I wasn’t sure I’d see Christmas this year and now I’m looking forward to spring (hope I’m not tempting fate) and seeing the bulbs I planted in bloom and meeting Sue in April and Barb and welcoming a great niece into the world.

Wishing everyone all the best for 2021 – we all so much deserve a better year.

MarySmith’sPlace ~ Cancer Diary #15

Monday, December 14: When I met with the oncologist last Monday, I’d already received from the Edinburgh Cancer Centre my appoint for the planning scan (08 December) and the verification scan (16 December) and a complete schedule for radiotherapy treatments, starting on 21 December. 

The oncologist said she was thinking about making some changes to the schedule, perhaps delaying the start date. A week later I still haven’t heard what’s happening. As the accommodation previously provided for patients who have to travel a long distance has been closed – and I really do not want stay on a ward – the DH had booked a hotel room for me from the 21 December. He mentioned this to the oncologist as we need to know when to cancel it.

“Why aren’t you booking it through me?” she asked. “We take some rooms at that hotel and it wouldn’t cost you anything.” Behind out masks we gaped at her – this was the first we’d heard of accommodation being provided for me. We said we were very grateful. She said she couldn’t guarantee there would be a room available. Now, I don’t know when I start radiotherapy (I’ve been holding off writing this in case there was a letter in the post or a phone call today) or if I will have accommodation (other than in a ward). If I do start as originally scheduled I get to see my son as he will come through from Glasgow one day – if it’s later then I won’t see him at all over Christmas. Once again, we play the waiting game.

I know she is trying to extend the time I have to live but at the risk of sounding bloody ungrateful I am mightily ticked off about always being left in limbo waiting for other people to make decisions which affect my life, waiting for answers to my questions, having no direct access to my oncologist, not being able to make any plans.

And it isn’t just me. Sue is in the same position. It’s as if because we have cancer we won’t be doing anything that’s of any importance. The literature we are given talks about the stress of having cancer and the worry of how the treatment will affect us and if it will work. That’s fine. That’s expected. I can’t find anything, though (surely someone has done some research into this?), which talks about the stress and anxiety stemming from being left in the dark, questions unanswered – not to mention the feeling that my oncologist is far too busy to be contacted. Yes, I know that’s what the Cancer Specialist Nurse is for (apart from protecting her boss from patients) but she won’t have the answer to my question so I’ll still be left waiting until she contacts the oncologist to find out and gets back to me.

The day after meeting the oncologist the DH drove us to Edinburgh to the Cancer Centre at the Western General for the planning scan, preceded by the mask fitting. A very nice person talked me through the process and showed me a sample of a mask, and what it looks like before being moulded to fit the patient.

The plastic mesh before being softened

It went in a water bath to be softened, then was fitted over my face, neck and shoulders and screwed onto the table on which I was lying. I’d to wait until it dried terrified I’d need to cough before having it removed. Afterwards, I asked what to do if I did have to cough. “Just cough,” she said. I’m still wondering how. Swallowing felt difficult enough. I dressed, moved next door to the room with the scanner and undressed again. They gave me a ‘modesty cloth’ – a piece of paper about the size of two squares of kitchen roll. Fortunately, despite putting on so much weight since my cancer diagnosis I’m not a big girl and don’t have much to cover up. The mask was re-fitted, now feeling much tighter as it had cooled further, and it and I were screwed down again.

My mask

As always when undergoing scans, I close my eyes and wait until it’s over. This is a newer version of the CT scanner in Dumfries and while there was the sound of an aircraft preparing to take off – and land at the end – there were other sounds I’d not heard before – bells ringing, for one – and a feeling of a bright light washing over me. I’ll ask next time.

Made to measure – never realised what a big nose I have

For some more pictures of how the mask is made, take a look here. The really good thing about having to wear the mask is that I don’t have to keep my arms raised above my head, but can rest them at my side. And I can take it away with me as a souvenir when the treatment is finished.

While waiting for the DH to return for me, I went into the Maggie’s Centre across the road. Oh, my, what a find! I’ve known about the centres and the work they do in providing cancer support and information through support specialists, psychologists and benefits advisors. I live in Dumfries & Galloway, home to Maggie Keswick Jencks who founded the centres but I’d only read about them. I had no appointment but was met by friendly, welcoming staff who introduced themselves, provided coffee, chatted to us (the DH arrived mid-coffee), gave me all sorts of tips, a contact email address and – best of all – for the first time since my diagnosis I felt I was being seen as a person, not a patient. It was a glorious feeling.

When I’m in Edinburgh for my radiotherapy treatments, I’ll certainly be visiting again. And lobbying for one to open in Dumfries!

MarySmith’sPlace ~ Cancer Diary #14 Scan results and what’s next?

Monday, December 07: From last Monday to this, the side effects continued to linger – nothing specific just a general mixture of ‘meh-ness’ and fatigue.  Unfortunately, the breathlessness became worse. We did one of my favourite circular walks between Rockcliffe and Kippford – an area known as The Scottish Riviera. Last April, I blogged about it, calling it a short walk of 3.5 miles. You can read the post and see the pics here.

Last week, on a lovely bright day, I could have cried with frustration at how difficult I found this same walk. I’d have said it was mostly level and yet it suddenly seemed to have grown hills I didn’t even remember. I had to stop to catch my breath and did wonder if I’d have to stay in Kippford while the DH walked back to Rockcliffe for the car. However, I made it.

A couple of days later, we visited Neilson’s Monument on top of Barstobrick Hill near Ringford.

The monument was erected by his son in 1883, in memory of James Beaumont Neilson who invented the hot-blast furnace in 1828, which revolutionised the practice of smelting iron. I’ve always enjoyed the walk there as, though the hill is not high, the views are wonderful on a clear day.

I had to stop a couple of times to get my breath back – I mean I do always puff when climbing any hill but I never used to have to stop on the way to the monument. Although I skipped back down the hill with no problems I came home feeling pretty miserable.

Walking is a huge part of my life – with a walking group (in pre-Covid days), with my sister and her dog, with the DH, on my own – and to feel this is being taken away from me is devastating.

By the weekend, the prospect of today’s meeting with the oncologist to hear the scan result and decide on next steps looming large I was in no mood to attempt a walk. I hardly slept last night and when I did it was to dream of conversations with the oncologist.

I told her I was extremely anxious about the scan result so she agreed to discuss that first – last time we had a medical examination and lots of questions about how I’d been, when all the time I just wanted to know the result. This time, we got to that bit first – and – cheers all round – the tumour has indeed shrunk. Unfortunately they said it was difficult to measure so I don’t know by how much it has shrunk – but the juggernaut has stopped and gone into reverse.

The summary of the report says: “Interval reduction in the volume of the right upper lobe tumour with re-expansion of apical segment of the right upper lobe. Lymphadenopathy is stable. No new lung lesions. Abdominal scan is unremarkable.”

Don’t put away your kick ass boots yet, though, as there’s four weeks of radiotherapy to be gone through try to continue the shrinking process.

The oncologist repeated what she said at the beginning of this horrible journey, she is not expecting the treatment to be curative and, though she said it bring a cure for 1 in 8 patients, it seems clear I’m in the 7 in 8 category who can hope for some extended time. She says at least a year or two.

I’m not sure how I feel – very happy the chemo has done something to shrink the tumour a bit. I’d have been utterly squashed if shoving toxic chemicals into my body with the resulting horrible side effects had done nothing. Very nervous about what’s coming next. Very worried the radiotherapy side effects will make me feel worse than I do now. I guess they have to spell out the worst-case scenarios but really – throat so sore when I swallow I’ll need morphine strength painkillers or even a feeding tube; permanent scarring on my lung causing breathlessness.

As you can imagine, it’s a lot to take in and process. We recorded the discussion and have already listened to parts of it again. Tomorrow – Tuesday – I go to Edinburgh for the planning scan, which does not sound fun – lying completely still with my arms above my head for twenty minutes – and wearing a mask. Not the kind of mask we’re all wearing these days but something over my entire face and neck. I wonder if I’ll have the courage to ask someone to take a photo for the blog.

Please, keep those kick ass boots at the ready. Mine are!

MarySmith’sPlace ~ Cancer Diary #13

Monday, November 30: It’s now ten days since my last chemo and the side effects this time have lingered. It’s the gift that keeps on giving. If I knew I was facing another two cycles I’d be in despair. At one point this time I said, “If this is as bad as it gets – and it lifts, then I can cope. If this is as good as it gets – and it doesn’t lift, then it’s enough.”

Yes, I know some people go through many more cycles of chemo. I’m in awe of them. I don’t know how they do it. I really don’t think I could. I know some people have far worse side effects than I’ve had – but that doesn’t make me feel any better about the days I spend feeling like death warmed up. I can’t find a better way of describing what it feels like. It is certainly not living.

It’s not like after the chemo and the anti-nausea pills and steroids, I can just let the drugs do their thing and gradually leave my system. Oh, no, there’s the joy of five days of Filgrastim injections. These are to decrease the chance of infection in people having chemotherapy that decreases the number of neutrophils required to fight infection. They also help increase the number of white blood cells. They cause terrible back pain, right across my lower back. The first time I had the pain, I put it down to bad posture and lack of exercise – but when it disappeared only to return when taking the next course of the injections I’m pretty sure it’s the Filgrastim causing it.

Then, just before the course of injections is finished, it’s on to a fortnight of prophylactic antibiotics called Ciprofloxacin. Having looked up the side effects I’m a bit alarmed to see they shouldn’t be taken with blood thinners, which I’ve been on since those blood clots were found dancing about in my lungs. I take them based on the fact the doctor who prescribes them also prescribes the blood thinners. The antibiotics cause diarrhoea, which makes a change from constipation, but I do wonder if the oral medication is actually in my system long enough to be absorbed.

I’m sort of feeling OK today. I’m not as tired. The sore mouth has gone and there’s seems to be saliva enough. Out walking yesterday, the DH commented on how well I was doing. I didn’t slap him. But, I was not ‘doing well’. I had to pause to catch my breath on a walk which normally would be thought of as a wee stroll. Is this really as good as it gets?

Brambles in November – not that you could eat them as the Devil spits on them after September.

Castle Point, near Rockcliffe

The beach below Castle Point

I have my scan booked on Wednesday, December 02. The cancer specialist nurse rang on Thursday to say I’ll see the oncologist on Monday, December 07 though she didn’t know what time I’ve to meet the doctor. And, an appointment has been made in in Edinburgh the following day for the radiotherapy ‘planning meeting.’ No idea what time that appointment is either. It’s a two hour drive from here so it would be handy to know when we have to be there as if it’s an early morning appointment we’ll need to go up the night before. We are very fortunate that we can do this – what happens if it’s someone without a partner to drive them? Cancer patients have broken down immune systems so public transport isn’t an option. What about those who can’t afford overnight accommodation?

Of course, I suppose if the scan results aren’t what the oncologist is hoping for (a shrinking tumour), the appointment in Edinburgh won’t be necessary. Instead, there will be a whole different discussion on Monday. I’m getting my list of questions ready.

To end on something exciting – I’ve changed my car. My poor Toyota Corolla has done sterling service for 18 years but would never get through its next MOT. I’ve been dithering for ages about getting another car – how could I justify the expense when I don’t know for how long I will be around to drive it? Then, I decided, that was irrelevant. I’m still here and I need a trustworthy car so I’m now the proud owner of a new-to-me Clio.

Isn’t she lovely?

The day I’d to pick up the Clio and take the Corolla to the garage, it refused to start. That car never refused to start! I’m convinced its heart was broken.

MarySmith’sPlace ~ Cancer Diary 12

Monday, November 23: Last week was what I think of as my ‘medical’ week, starting with the pre-chemo blood check, followed by the pre-chemo assessment and, finally, the chemotherapy session itself on Friday. It’s a sleepless week of worrying about something going wrong to prevent me from allowing them to drip toxins into my body.

This was the last of my prescribed four cycles of chemo. I was asked if I wanted to ‘ring the bell’ but declined. I’m not tempting fate. I did have a happy, school’s out feeling when I came home – which lasted all the way through to Sunday. I should have written my second blog post about being pregnant in Pakistan when the DH was arrested in Afghanistan but couldn’t concentrate.

This is the first time the ‘meh-ness’ has hit so soon, and so hard, after the chemo. Maybe having my flu vaccine this morning hasn’t helped. I don’t think I’ve felt this level of tiredness before. I apologise for not being able to keep up with the blogs I follow at the moment, and not being able to reply to letters and emails. I’ll be back on form before long. I will respond to comments here, though maybe not quite as speedily as usual.

It’s not all doom and gloom and feeling crap. I did manage a couple of walks last week – just as well because since starting treatment I have gained about a stone in weight and feel disgustingly fat and frumpy. With and undiminished appetite, lack of exercise is definitely to blame – and maybe a few more treats than usual. And, today, I’m too tired for Pilates class – when I really need it!

Sandy Hills, Dumfries & Galloway

I have the date for my next scan – Wednesday, December 02 – though as yet have no idea when the results will come through and when I’ll next meet the oncologist to discuss what’s next.  

Some of you may remember back at the start of this, when I was in my ‘I’m-not-going-to-see-Christmas phase, I started blitzing the house, sorting and clearing out photos, letters, books. I’ve calmed down a bit since then. I sold some of my Scottish books to Andrew Wilson at Beltie Books (great coffee and fabulous home-baking as well as books) in Wigtown. Last week he sent me a poem he’s written about me and my books. It’s lovely and made me cry – I still can’t read it aloud all the way through without my voice breaking. I feel so touched by his friendship and his words, which I will treasure, and the knowledge my books will be cherished.

Sadness of second hand books
we had never seen their like before
these books,
they were so wonderful.
she said she could tell us a story
about each book
these ones she was selling;

but each book was itself
a story, of Scotland
no dates and battles, kings and queens
but the story of our people
Blind Harry, Irvine Welsh, Wendy Wood
McDiarmaid, McIlvannie, McCaig

Neil Gunn, every author
that should be known and loved,
and grace the shelves
of every writer on Scotland,
it was a Bard’s collection
yet they filled me with sadness.

they were from a writer
one who penned verses
on Galloway’s Gaelic places
*inflexible tongues could not say them
and memory forgot their meaning
but the Bard remembered

the Bard told their story
and now she was handing the baton
on to me, with her books;
her own battle with cancer
ahead of her, but her books…
her books would carry our story forward.
                                                                        Andrew Wilson

* words from Mary Smith’s poem “Lost in Translation”

MarySmith’sPlace ~ Cancer Diary 11 – Uncertainties

Monday, November 16: I had a wonderful week in the hut although on the Tuesday I was more tired than I’ve been for a while. I suppose the rushing around on Monday, packing and sorting out food supplies, writing the blog – and the sudden exposure to sea air – did for me. And, maybe I was tired because of cancer and having chemo, though I tend to look for other causes first for some reason.

Tuesday, then was a day of doing not very much – that is what holidays are about, isn’t it? I rallied when the weather brightened in the afternoon and went out for a walk. In fact, there was only one day I didn’t get out. I also spent vast amounts of time sitting in the veranda, supposedly reading, but simply gazing out and the endlessly changing vista, watching the waves.

I’m back at home – no more sounds of the sea to send me to sleep. And it’s chemo week. Well, I hope it is chemo week – there’s always the uncertainty something might be wrong with the bloods and the treatment be postponed.

The uncertainty of it all is starting to get to me. If the bloods are all right, then I’ll have my fourth chemo cycle on Friday. After that I have no idea what’s happening. I should have a CT scan to see what effect the chemo has had on the tumour and lymph nodes and to check it hasn’t spread to other organs. I haven’t yet received an appointment for the scan, nor for a consultation with the oncologist.

Before radiotherapy – five days a week for four weeks – can be started – if it’s going ahead, another uncertainty – I have to have a 4d scan to have the places marked where the radiotherapy will be focussed. I have no idea when this will happen, nor how long after it the process can start.

I’m feeling totally in limbo right now. I have no idea what is going on with the tumour – is it shrinking, staying the same or growing? Spreading? Is my case being discussed at the weekly meeting? I won’t say am I being discussed because I realised to the oncology medics we are not really people, we are cases. Why does no one feel any need to let me know what they are planning next and when?

I am so very glad I had such a good break at the hut last week because if I’d been here – checking the post for appointment letters which don’t arrive – I’d have been in a far more worried state than I am now.

The last scan showed the tumour was stable – hadn’t grown and hadn’t spread. The prospect of the possibility of extra time was still being talked about. But, I don’t know of there will be extra time, nor how long it will be – neither, it seems does the oncologist so the uncertainty is all encompassing.

I have things to do, places to go and people to see. If my time is going to be very limited I’ll break all the Covid rules to which I’ve so steadfastly adhered and go ahead and get on with things I want to do while I’m still able.

I hope I will have had the toxic drugs and know a bit more about that’s next when I next write.

MarySmith’sPlace ~ Cancer Diary #09 A bit of a whinge

Monday, November 02: I had my third chemo cycle on Friday and am now in the “meh” stage of feeling pretty rubbish. The constipation returned, worse than six weeks ago, despite prescribed laxatives. Oddly, I had no constipation after the last chemo dose when I upped the fibre content of my diet. I thought I was eating much the same this time – body thinks otherwise.

Movement was finally achieved around 5.30am today. I went back to bed feeling decidedly lighter.

I felt really healthy throughout the week leading to the third chemo round. The only blip was a sleepless night on the Wednesday after I’d had my pre-chemo bloods taken. Having the bloods taken isn’t a problem. In fact it’s one of the highlights of my social life – meeting a masked nurse in the health centre. Mostly, I cope with my hermit-like, self-isolation existence but when I heard myself gabbling away at the nurse I realised I do miss people.

No, the anxiety was about the chemo having to be postponed because of something not right with my blood. While having my body pumped full of toxic drugs is not something I relish, having decided to go for it, I dread anything which might slow down the process. And as the first two rounds of chemo halted the growth of the tumour, but didn’t shrink it, I don’t want a longer gap between cycles in case it starts growing again.

On top of that particular anxiety, the more I thought about Cancer Specialist Nurse (CSN) and how dishonest she’d been with me made me angry. I had seen some research on medicinal mushrooms, particularly Coriolus versicolor, and the results of various trials which seemed to indicate its use increased immunity in patients taking chemotherapy. I asked if I could send it to her to pass on to the oncologist for her thoughts. She said she would and I printed out the version for health professionals and put it in the post to CSN. At the meeting last Monday, it became clear the oncologist hadn’t seen or heard of the research papers. CSN said she’d asked the pharmacist who had said I shouldn’t use it.

Why? ‘He doesn’t know how it would react with the chemo drugs.’ The point of sending it to the oncologist was to see if she could find out more about the trials. It’s too late for me now, with only one more chemo ahead of me, but I will still try to learn more about it. It may seem a trivial thing to lose sleep over but to have queries dismissed out of hand as not being worth any kind of follow up does not build trust – neither does knowing the CSN didn’t do what she said she’d do. And she didn’t call me on Thursday with the blood results as she said she would.  

When I told a friend I’d be sitting in the chair at 11am on Friday she asked what I meant. It made me realise not everyone reading this may know what is involved in a chemo session.

I give my name at reception, remove my mask, use hand sanitiser, put on a new mask and take a seat until called. I’m weighed, have my temperature checked and am told to wash my hands before being led into the room where the chairs are socially distanced. The first time, it felt like being led to the electric chair – not so bad now but there’s still something deeply unpleasant about giving up all control over what’s going to happen.

They check pulse rate, BP, oxygen stats – then bring warm pads from a microwave to put on the back of my hand to bring the veins up before inserting the cannula and hooking up the drip bags. There’s usually a delay waiting for the pharmacy to send the drugs down. They start with a saline flush, then the first of the chemo drugs, another flush before the second drug – and there I sit for around two, three or more hours. I take my Kindle in and spend the time reading. Having to keep the hand with the cannula in completely still for so long isn’t easy – especially when they bring you lunch. A wee wiggle of the fingers is enough to block the drip and make it bleep.

Usually nurses look at my veins like happy vampires so it was surprising to be told by the one on Friday that my veins are very thin. ‘I bet everyone tells you that,’ she said.

‘No, you are the first.’ And, astonishingly, the first vein she tried was completely empty! The second attempt was successful and all went well until she came to remove the cannula. The fountain of, by now toxic, blood missed me and went all over her. She asked me to put my finger on the gauze pad while cleaning up then told me the haematoma swelling before our eyes was because I’d moved my finger. Last time, there wasn’t a mark on my hand so I kind of hope she gets some practice in before I go back, or has the day off.

I hope by my next diary entry I’ll have shaken off ‘meh-ness’ and bad temper and be back to my usual self. And, please let it stop raining so I can get out for the occasional walk.

MarySmith’sPlace~Cancer diary#08 Scan results

Monday, October 26: I had a week of feeling really well (yay) alongside a week of worrying about the scan result and meeting with the oncologist today (not so yay).

I won’t keep you in suspense – like the oncologist did me by first asking lots of questions about how I’d been after the cycles of chemo and carrying out an examination before finally telling me. The scan results show the tumour is stable. While it has not shrunk it hasn’t grown any – not one of the many scenarios running through my head last night as I tried to get to sleep. Nothing has spread to any of my other organs.

The oncologist seems quite upbeat about this result although I can’t help feeling disappointed. I’d so hoped the tumour would have started to shrink, even if just a tiny bit. She’s recommending I go ahead with the next two rounds of chemo followed by another scan. If things are as she hopes then four weeks of radiotherapy would follow.

The radiotherapy doesn’t sound fun. I know they have to spell out all the possible side effects and no everyone gets them all or not as severely but – apart from tiredness (she says even more than after chemo) I’ll have a sore throat and may need morphine for the pain – or, worst case scenario, a feeding tube – and the scarring on the lung may leave me breathless on exertion.

This, if all goes well, could give me an extra couple of years (she did say “or longer”, but I’m afraid to be too optimistic) of relatively normal healthy life. Presumably until it all kicks off again as it must if they can’t eliminate the tumour entirely.

I’ve said I’ll keep going. The alternative is a few months and I would like a bit longer – there’s a book to finish writing, Cairn Holy to visit with Sue, and the Callanish Stones, a trip back to Islay where I was born, maybe even a holiday somewhere sunny. Seeing family would be rather nice – this self-isolation business is the pits. Of course, being able to do most of these is dependent on bloody, bloody Covid.

When I went into the first meeting with the oncologist I knew I had a seriously life-shortening illness and suspected I had months rather than years before me. I’d sort of come to terms with that. I was expecting to hear more about palliative care rather than treatment options. Dying doesn’t frighten me (though I’d prefer it to be painless). The oncologist gave me hope I could have more than a few months and I left the meeting feeling optimistic. This time it’s harder to be as optimistic – all because the tumour hasn’t actually got any smaller.

The next cycle is on Friday – if the blood results are all right. I think this constant wondering and worrying, having tests and waiting for results is one of the biggest downers.

Still, looking on the bright side, the oncologist did not say (my main worry) there is no point on carrying on. I can feel a degree of satisfaction the chemo has at least stopped the tumour in its tracks. Two more cycles might finally make it start to shrink.

There, now, I’ve talked myself round from feeling pretty down when I started writing this to edging towards feeling a bit more positive.