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
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…
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.
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.
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.
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.
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.
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.
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.
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.
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.
Monday 11, January 2021: Back in Edinburgh for another set of six radiotherapy treatments. I’m confusing myself by starting my diary update with today’s date and writing it up retrospectively. Right now, I’m easily confused and very, very tired so I’m going to do this update – and probably others – chronologically.
Tuesday 05, January: I had my meeting with the specialist nurse after my treatment today. She went through the check list of symptoms. I admitted some solid foods were more difficult to swallow – especially bread. She checked how much of the antacid with Oxetacaine I’d been prescribed as apparently there’s a problem with supply. We chatted for a while about lockdown and how different it is when stuck in a hotel on your own in a city that’s closed than being stuck at home under lockdown. It wasn’t until I’d left the hospital I remembered the questions I’d written down and forgotten to ask.
Wednesday 06, January: There was a warm Danish pastry in my breakfast bag this morning but as soon as I took a bite I regretted it – swallowing it was so painful but I had no choice but to get it down.
After my treatment I mentioned to one of the radiographers I’d forgotten to ask some questions when I met the nurse – do I need to continue taking folic acid, when is it OK to have dental treatment and could I get clarification on the instruction about leaving one to two hours either side of the antacid with Oxetacaine before taking other medication?
No problem – we’d go and find a nurse to ask. It kind of got complicated after that!
Questions one and two would have to be put to the doctor. OK, no problem. The nurse asked some of her colleagues about the timing of other medications with the Oxetacaine – no one had heard of this. Where had I heard this? I explained it was outlined in the letters the pharmacist had put in with my bottles of medication – one for my GP and one for my community pharmacist. Finally, she asked if I would mind going back to the pharmacist to ask him to clarify things. I have a feeling she thought I’d made it up or was confused.
Before going to speak to the pharmacist I went to Maggie’s to meet a friend. I mentioned some weeks ago that someone reading my blog was prompted to have a breast lump checked out. Now, she is also attending the Cancer Centre in Edinburgh for radiotherapy. It felt really good to meet up for a coffee and a chat – it felt like bringing a little bit of normality into our lives. Of course, we talked about cancer – our own, in particular – I guess this is our normal for now.
When she went off for her treatment I spoke to the pharmacist about the Oxetacaine. He confirmed there should be the one to two hour gap for any other medications – even paracetamol. I asked if I could take a copy of the letter to GPs to the nurses who prescribe this medication without knowing about the problem of absorbency of other drugs.
One of my oncologist’s registrars phoned later, to say I don’t need to continue with folic acid and as long as my dentist is aware of my medical history and medication it’s fine to undergo dental work. Goodness knows when that can ever happen – I’m only home on Sunday for now. Just hope I don’t wake up one morning to find the tooth has completely crumbled away. I was a bit taken aback that she thought I was still on injections to prevent blood clots when it was changed to oral medication months ago. Maybe she’ll update my notes.
Covid cases and deaths increasing here and riots in the US Capitol Building. It’s been a full on day.
Thursday 07, January: For some reason my appointment was very early today – 8.30. I did make it on time, but I hadn’t had a shower or brushed my teeth. The radiologist laughed, saying: “It’s OK, we wear masks.”
I took the letter to the nurse – of course, the one I saw yesterday wasn’t there. I did feel a bit reluctant to hand over the letter to someone who probably knew nothing about the discussion so she had to hear me out while I explained and showed her the relevant part of the letter. She said: “This will be useful because we prescribe this medication to a lot of patients.” I don’t know why the information isn’t widely known – but I feel I’ve done my bit.
Swallowing is becoming increasingly painful. Solid food is difficult – who knew I’d be tempted by Pot Noodles? Slide down nicely, once cool enough.
Friday 08, January: After today’s treatment I asked the radiologist how much worse my throat was likely to get. I suppose what I wanted to know was how far away from the feeding tube am I? I just needed a bit of reassurance. She told me stronger pain relief could be prescribed if it becomes worse but not to expect it to go away as soon as the treatment is finished because the radiation carries on working for a few weeks. She suggested I went to Maggie’s instead of going straight back to the hotel. It was a good idea – just to relax and read in lovely surroundings.
Saturday 09, January: I admitted to the radiologists this morning I was beginning to lose confidence in my ability to cope with the treatment and its side effects – the throat pain, the fatigue and now some interesting little pouches of fluid appearing on my neck. They said to keep an eye on the fluid pouch, reassured me, again, stronger pain relief is available and said I should rest as much as possible. I shouldn’t feel guilty if I fall asleep whenever I sit down.
The DH brought me home, made the mushroom soup I had a fancy for and told me he had recorded Holby City, for which I managed to stay awake.
Monday 11, January: Back to where I started this post. I had a lazy Sunday before reluctantly re-packing my suitcasefor Edinburgh. Today’streatment was number 14 – only six more to go. Throat pain still manageable – take the Oxetacaine 15 minutes before eating and two paracetamol an hour later plus dozens of strong mints.
To assist my body in its attempts to recover from the onslaught of radiation I’m going to take a break from social media for a week. I’ll check in to reply to comments. This post has taken me ages to write. I hope it isn’t terribly boring.
“Birds sing after a storm; why shouldn’t people feel as free
to delight in whatever sunlight remains to them?”
Rose Fitzgerald Kennedy
Last spring when we went into lockdown and we were encouraged not to burden our doctors, I did not take my concerns to the surgery… and lost six months of potentially treating a now untreatable cancer. Now we are back in lockdown again, with the unconvincing prospect of everything being alright again once the vaccine has been fully distributed. We might, suggest the government, if enough people have the vaccine, even be able to begin lifting restrictions in mid-March.
At my last appointment on New Year’s Eve, the oncologist gave me three to six months. It is, I know, just a ‘guesstimate’ based on experience. He could be wrong, it might be longer… but it…
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!