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, 24 February: It’s grey and wet here and has been for the last two days which may account for the dip in my mood. I suspect, though, more than the weather blues, it’s caused by trying to deal with the seemingly endless fatigue and lack of energy.
On Sunday, the weather was lovely following several days or torrential rain, and my sister and I met for our first socially distanced walk in – well, I don’t even know how long it’s been since we saw each other. We met at the car park at Rockcliffe, a small village on the Solway coast. I’ve written before about the circular Rockcliffe/Kippford walk when I really struggled, post-chemo, pre-radiotherapy.
We decided to walk in the other direction to Castle Point, site of an Iron Age fort. It’s not particularly strenuous and – I’m guessing here – the circular walk is only about 2.5-3 miles.
I felt slightly breathless, coughed a bit when we started out. I was annoyed about the cough as I hadn’t been coughing for ages – I put it down to my lungs being in shock at meeting fresh air after days of being indoors.
It did feel good to be out in the sunshine and I felt fine when we returned to the car park.
In the evening I couldn’t keep my eyes open and was in bed before 9pm. Three miles and I was knackered. So much for my dreams of one day walking the Camino de Santiago!
I know the oncologist warned me the radiation could cause severe fatigue, which could last for weeks, even months. She warned me if the radiation caused so much inflammation in my throat I couldn’t eat I’d need a feeding tube but I escaped that and I fully expected, as six months before, I was actually pretty fit to escape the fatigue side effuck.
This is the new term for side effects listed on Abigail Johnston’s wonderful blog No Half Measures. I’ve stolen her side effuck from her Glossary of my Metastatic Breast Cancer (MBC) Experience. After all, I reckon, breast cancer, lung cancer, ovarian cancer, whatever kind of cancer for which we’re having treatment, we all have to cope with several side effucks.
There are times when I’m reading Abigail’s blog my jaw is practically hitting the floor as she describes the discussions she has with the various members of her medical team before deciding on the treatment to choose for a particular metastasis, what she describes as a ‘pesky met’. It is oh so different in America! Patients are, of course, paying customers and they are treated with respect and time and explanations and advice. I think I’m doing well with a weekly phone call from the cancer nurse and an occasional meeting with the oncologist (the last was in mid-January). I certainly don’t have discussions with a radiation oncologist as well as a medical oncologist and various other doctors and advocates. Wow.
The day after the walk was another lovely day. I pottered in the garden for a little while but I could not summon up the energy to walk. The fatigue side effuck had me well and truly in its grip.
I had my weekly call from the specialist nurse today and now have my appointment with the oncologist next Monday, March 01. He said to mention my lack of energy to the oncologist – wouldn’t it be lovely if she could prescribe an energy pill?
Not only am I too knackered to do much walking, it has taken me the best part of a couple of hours to write this post for heaven’s sake and my inbox is stuffed with emails awaiting replies. I used to laugh at the DH who could take half an hour to write a two-line email – because he’s a numbers person and doesn’t trust words. Now, it takes me as long and I do love and trust words – I’m just tired. And by the time the inbox is dealt with I have no time to do any writing projects and I haven’t written an Afghanistan blog post for weeks.
I’m trying to be kind of upbeat about this tiredness side effuck but there is a serious side I’ve avoided addressing but really shouldn’t ignore. In about six or seven weeks I’ll have a scan which will show what the treatment has – or hasn’t – achieved. This will give me some idea (I know it will only be a vague idea because my oncologist doesn’t have a crystal ball) of how much time I have left. When I know that, I will have some big decisions to make on how I’ll want to use that time.
In the meantime I better start putting my list of questions together for Monday’s meeting with the oncologist. Feel free to chip in as I won’t remember all the things I need to ask.
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 10, February: I had my first Covid vaccination on Thursday. If there were any side effects they were camouflaged by the radiation side effects – didn’t even have a sore arm. I don’t know when I’ll receive the second on – maybe in about 12 weeks, depending on supplies.
On Sunday, I managed to stay awake all day for the first time since I finished my treatment and went out for a short walk. We’ve escaped Storm Darcy’s snow but my goodness it was freezing – much too cold to take my gloves off to take photos. In the evening I tried a little glass of wine as the acid reflux has improved with the change of medication. Can’t say I particularly enjoyed it though.
Having been quite chirpy by bedtime on Sunday (it was a tiny glass of wine so it wasn’t that) I was bitterly disappointed on Monday to find I felt worse than ever. The radiation side effects were no worse: in fact, the ‘sunburn’ is now a small patch and the swallowing pain is manageable without pain relief. I do have to remember I can’t eat like I did before. I have to be much daintier. Always a fast gobble of an eater, if take too big a mouthful the pain on swallowing is dreadful so it has to be little bites. I can only say I felt like shit – a feeling which didn’t go away. And, I found I couldn’t sleep at night. Until now, no matter how many naps I took during the day it didn’t stop me sleeping at night. Now, I’m scarcely napping during the day and not sleeping at night.
I think it’s probably ‘scanxiety’ setting in early and to make matters worse it turns out the scan is not going to be six weeks – but 12 weeks after the end of radiotherapy. Last week, blogger Stevie Turner said she’d had to wait three months before her post-treatment scan. I just assumed it was because we had different cancers. Turns out I was wrong.
The specialist cancer nurse called today (and next week’s call is in our diaries). He mentioned I’d see the oncologist at the beginning of March for a six-week post-treatment review and said: “The follow up CT scan will be 12 weeks after the end of your treatment – and then if it’s necessary you may see the doctor.”
To say I was gobsmacked is a gross understatement. I raised my voice, I used the F-word, I cried. He explained the radiation continues working for more than the six weeks I thought, so there was no point in doing a scan until after 12 weeks. OK, I get that, I can understand that (still curious as to how I so thoroughly misunderstood the timings) but what I can’t get my head round is a review when the oncologist can’t know what’s happening to the tumours or the lymph nodes and yet after the CT scan it seems the oncologist might not deem it necessary for us to meet. That surely can’t be right, can it?
I did quite a lot of squawking about how wretched I feel and how I’m worried about my lack of energy and if this is as good as it’s going to get then I wish I hadn’t bothered going for the treatment. I tried to explain how cut adrift it feels – treatment finished, off you go, bye bye. He starts to worry about my mental health and asks if I’d like to talk to someone like my GP. I say I spoke to my GP last week. I don’t say I’ll write my blog tonight and that will sort out the depression – nor do I say, as I wish I had now (and will next week) that by continuing to let me talk – we got onto the subject of chips and mayo at one point – my mood did lift a bit. It’s not always talking about how we feel which helps, it’s feeling connected to another human.
And it’s lifting further tonight – phone conversations with two good friends, a bit of time in the garden breathing fresh air, writing this, realising that if I have until early April before the CT scan, I can be fairly confident no one expects me to kick the bucket in the meantime (they don’t, do they?) so I can look forward to spending time in the garden in March, maybe walking more. And it’s probably not expected I’ll die immediately after the scan so maybe I have some more months, even a year, to be here – just let them not be months of feeling like shit.
Speaking of which, the lactulose helped in the short term but having stopped all pain relief, there’s now no need for the laxatives – yay.
Twelve weeks before finding out what’s going on inside my lung still seems a long, long time to wait.
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.