Well, I’m on the home stretch now; the finishing line very much in sight.
Nothing is quite as expected, though. From early on I had made my wish to die at home be known but here I am in a bed in the Alexandra Unit, which provides palliative care and is the nearest thing we have in Dumfries & Galloway region to hospice provision.
Anyway, the change of plans was my choice. At home, although they would take every possible care to have the drugs I would need when the pain became more severe, I wasn’t going to have someone 24/7 with the key to the locked cabinet. I didn’t want to behave all undignified if I couldn’t get my drugs!
I was mentally preparing some funny stories to share with you (like the woman who wanted a cleaning job but not when she was a bit busy near Christmas) but it’s late and I need to take my ‘breakthrough’ morphine dose (learning the lingo!) which I’ve delayed to get this wee post out there. I’ll try to remember them – not that I’ll be seeing my house again, dirty or otherwise.
My son is home. He came down after my weekend flight and decorated the Christmas tree and made such a lovely job I realised I should have had him doing it every year! I think I issued a challenge to him and his partner to a game of Rummy. And my sister’s dog is wondering why she’s never been invited on hospital visits before now. Patients have treats hidden all over the place!
Wishing each and every one of you a happy festival time and many thanks for all your support and love.
After my last post recording my decision not to go for further cancer treatment I really did intend to post an update a bit sooner than this. I should have remembered the unpredictability of cancer and not made assumptions things would tick over just the same.
The couple of weeks before my last post were busy seeing friends, doctors and the dentist (another emergency – broken filling)! I had an online consultation with the palliative consultant and she changed some of my medication. I’d been on a combination of codeine and paracetamol to try to suppress the constant cough and it was making me feel nauseous most of the time which rather put me off eating.
The consultant prescribed morphine instead, both a tablet and a liquid form. The tablet creates a slow release background dose to provide pain relief, help the breathlessness and suppress the cough and I could take the liquid stuff when required. The pain is something fairly new; a difficult to describe sharp pain along my right shoulder.
Then, the weekend after friends we met in Pakistan thirty years ago came to visit. Usually, they would stay with us and we would never go to bed the same day we got up. This time they booked into a hotel which, although not how I wanted it to be, was incredibly thoughtful. I could come home in the afternoon to have a nap before meeting again in the evening – but my goodness did it not make me feel horribly old to be the person who needed to nap!
Other friends had, unbeknownst to me, had been plotting to arrange a flight for me in a two-seater Piper Pup plane – something I didn’t know was on my bucket list.
Wow! Despite the less than elegant scramble getting in and out of the aircraft, it was absolutely amazing. The sun shone, the flight was stunning and, at the risk of upsetting my friend Beetley Pete, I think it really was awesome. I am so, so glad I went and it happened when it did. I seriously doubt if I’d manage to get in the plane now.
Things went downhill after the weekend. I thought at first it was a result of doing too much and a few days of rest would put me right again. Deciding to have a bit of quiet time, I cancelled engagements, apart from my appointment with the palliative consultant – this time, a face to face consultation. We also cancelled our planned trip to Aberdeen to visit our son at the weekend. That was a good call as it was the weekend of Storm Arwen so travelling would have been a mistake.
Concerned about how breathless I’d become in case there were blood clots in my lungs the consultant organised a CT scan for the next day (the next day!) and upped my morphine.
No blood clots to be seen, which was a relief but nothing else pointed to a cause of the breathlessness. In case it was a return of the pneumonitis, I was put on steroids. Remembering how fast they took effect before I was looking forward to feeling much better after the first couple of doses over the weekend. Unfortunately, I wasn’t.
The GP called me on Monday evening after seeing the scan results and suggested an antibiotic as there was a suggestion there could be an infection. I’m over half way through the course now without any improvement.
I had my first home visit from a Macmillan nurse this week. She further increased the morphine medication, assuring me I am still on a very low dose. We discussed the difficult topics of putting in place DNR (do not resuscitate), which actually isn’t so difficult when you understand your heart stopped because we’re all done here and breaking ribs to re-start it – possibly very briefly – isn’t a great idea.
I have an appointment with the consultant at the beginning of the coming week. I have to say I am very impressed and very glad of the support network which has, seemingly seamlessly, appeared in place.
I’m tired in a way I’ve never been tired before. Chemotherapy made me tired, radiotherapy wearied me deep in my bones but this – this is something else again. In the morning I make and eat my breakfast then go back to bed with a cup of tea. It’s stone cold when I wake up. Talking makes me cough. A short chat on the phone leaves me breathless, coughing and exhausted. I’m a talker – this is hard. I’m hoping further tweaking of the meds will help to relieve some of these symptoms, at least for a while.
I would like to do some writing – there’s still the Goldfish blog to convert into a book and there are poems to be written and edited – but it will depend on my energy levels and focus. I apologise for not reading and commenting on as many of your blog posts as usual. That takes stamina. I will try to respond to as many comments on my blog as possible – it’s always been a cardinal blogging rule for me to engage – but if I don’t please don’t be offended. I’m just a wee bit knackered right now.
The last couple of weeks haven’t been easy, not least getting my head round the fact the increasing amount of medication I’m taking is not going to make me better, but there have been some wonderful highlights which I’ll enjoy remembering.
Those of you who follow this blog will know I had an appointment with the oncologist immediately after my Islay holiday.
There wasn’t really anything new to hear about my cancer. I’d read the information on the chemotherapy drugs and their potential side-effucks: nausea; fatigue; loss of appetite and weight loss; peripheral neuropathy; blood clots; breathlessness and a serious impact on my immune system. One drug would be given every three weeks at the cancer centre, the other would be a capsule taken twice a day in between the three-weekly cycle.
The chemotherapy would be four, possibly six cycles – so 12 to 18 weeks – of feeling rubbish, not being able to go out much. I’d have a CT scan after the first two cycles to see what, if any, impact the drugs were having.
The treatment is in no way curative and if it is successful could extend my life by two months. Of course, I could be the outlier who survives for a few years, but it’s not very likely. And how would I feel during those extra eight weeks? Not bouncing with health, that’s for sure.
I asked how long I might have if I didn’t take any treatment (knowing it’s not possible to give an accurate prediction) and was told ‘definitely three months’ and possibly as much as six months. Mind you, this is from the person who said at the end of May I could expect two or three years. I wouldn’t put my money on her predictions.
I think I’d probably made my decision when I was on Islay and the week after seeing the oncologist I turned down the option of further chemotherapy. It’s a relief not to have to keep thinking about it, weighing up the options and wondering if I’m making the right decision.
In my last post I said my next one would be about the discussion with the oncologist. I’ve changed my mind. I’ll put up a cancer update soon, but in the meantime, I want to introduce you to a special person who is part of my extended Afghan family. In fact, I’m going to let her do the introduction herself but before she does, I’ll fill in a bit of our shared family history.
I met Sausan’s grandfather, Jawad in the Jaghori district of Ghazni province in 1989, the year the Soviets left Afghanistan, when he came to work as a driver for the leprosy/tuberculosis NGO (non-government organisation) for which I was joint co-ordinator. Later, he moved to an administrative role in Quetta, Pakistan, which was, at the time, our operational base.
His family joined him in Quetta. They were among the first visitors when my son was born. I remember looking at Jawad’s wife as she held him and seeing the longing in her eyes. I was pretty sure another addition to their growing family would be coming along. Jawad didn’t think so – I was right!
It became clear we had to move operations to Afghanistan or risk being robbed every time we shipped medicines and supplies across the border. In 1993, Jawad went ahead, finding a suitable building in the northern city of Mazar-i-Sharif and I followed with David/Daud, who was then two years old.
When I returned to Scotland, there was no Facebook – very few people even emailed – and keeping in touch wasn’t easy but we always managed. Taliban came to power and the family escaped to Pakistan. The DH, David and I went to Pakistan several times to meet up.
After Taliban was pushed out (temporarily as it turned out) Jawad and family moved back to Afghanistan, to Kabul. Mustafa and his sister Shahnaz won scholarships to India and we visited Mustafa there (regretting we didn’t have enough time to visit Shahnaz as well). We also returned to Afghanistan for an all-too-brief reunion.
Mustafa later did his Masters in the UK. His parents looked forward to seeing him graduate and we looked forward to a grand reunion over here. However, when the hoops the British government made his parents jump through for a visa became unsurmountable we went to Bristol to be there for him.
Jawad’s son Murtaza was the first to be married and he moved to America where he and his wife Soraya live in Connecticut. It is their daughter who adds the next link in the family chain. She and I ‘met’ when she visited Kabul earlier this year for her aunt’s wedding and we chatted on a video call after she’d read my book and had some questions for me.
Here she is:
“I am Sausan Farhnaz Jawad. I was born in Hartford, Connecticut USA, July 2nd 2010. Originally I am from Afghanistan, Jahgori District where my father, Murtaza Ahmadi, was born.
My grandfather, Jawad Ahmadi, was running an international NGO (LEPCO) to treat leprosy and tuberculosis in the very remote area in central highlands of Afghanistan.
I live in Simsbury, CT. I have gone to Afghanistan two times, already. Kabul the capital of Afghanistan is surrounded by high mountains. My last visit to Kabul was in May 2021 to attend the wedding of my aunt which was held in a very nice wedding hall.
Unfortunately, I could not attend the wedding of my uncle which was held on August 8th. It was celebrated in Kabul’s famous garden, Bagh-i Babur (a very old and famous garden, where the Mogul Emperor Babur, one of the Genghis Khan’s descendants, is buried.) The reason I could not attend my uncle’s wedding was because Afghanistan was having trouble with the Taliban and the flights were cancelled. If I went to his wedding I would be stuck In Afghanistan. Luckily, my grandparents and the newlyweds left the country. But sadly, some of my grandparents’ relatives are still stuck in Afghanistan.
My family nation is Hazara. This is a tribe mixed with Mongol and Turkish which is living in the centre of Afghanistan.”
You may be wondering, why this post now? Since Taliban once again took control of Afghanistan earlier this year I’ve turned down several invitations to speak in public about the situation and I’ve not written about it on my blog. I couldn’t. I was too angry and heartbroken to find a way to talk about it. Taliban’s takeover and the plight of those desperate to leave the country were on the front pages of our newspapers until the day the last soldier left Afghanistan. After that Afghanistan stories were found half way through the paper – scarcely newsworthy.
Jawad’s family and mine have been friends over many years and across many miles. I really hope people reading this will see individual people not a faceless mass of ‘refugees’ or ‘asylum seekers’ – real people.
Our friendship will last as long as I do and be remembered for even longer and I look forward to more conversations with the youngest (for now) in the family – the delightful Sausan.
And I hope with all my heart that one day Jawad’s family will reunite in Afghanistan, an Afghanistan free from Taliban.
Thanks to Wee-sis, she and I finally made it to Islay together for the first time since we left the island in 1961. My last visit to the island where we were born was over twenty years ago although Wee-sis has been going more recently.
I spent the weeks before we went terrified I wouldn’t be able to go because cancer cells would suddenly multiply or my throat would stop working or something. In fact the worst that happened was a filling coming out (M&S salted caramel Florentines – delicious but not recommended if you have dodgy fillings). I was able to get an appointment to have a temporary filling put in.
The after our return I had an appointment to meet with the oncologist and tried, mostly successfully, to put it out of my mind and not dwell too much on the decision I knew I had to make sooner rather than later. I’ll do an update on that meeting in my next post.
It was a magical week packed full of memories. It was a week of connections old and new, of friendship, laughter, good food (pizzas by the sea, Indian curries, home cooking and posh restaurant) and drink. We were taken on a mystery tour and picnic (the most amazing potato curry and puris) one day; on another we visited the Singing Sands. We didn’t get to visit all the beaches I remember from my childhood but we managed a few and we watched seals watching us and saw thousands of Barnacle geese.
If you can zoom in on this pic the grey dots are not stones but geese!
The dentist on the island has bought the house Wee-sis and I were born in. He and his wife invited us to see it. Wee-sis doesn’t remember it (she was only three when we left) but I could still recognise the layout of the house – the front hall (which seemed so much smaller than in my memory), the curved staircase, my bedroom, Dad’s office …
In the round church in Bowmore, where we were christened, we found our names on the Cradle Rolls on display.
And I found the name of my best childhood friend, born two days before me.
She and I were the first babies the new doctor on the island delivered. She and her family left Islay some years after we did but she has relatives still living on the island and visits regularly. We managed to meet for the first time in sixty years. We would need days, probably months, to catch up properly on our respective histories.
It was a wonderful trip but exhausting. Towards the end I was definitely flagging and had to turn down an invitation to a girls’ night party, which I’d been looking forward. However, my energy levels had dipped too low. I also dropped out of a walk with Wee-sis and her dog because I was concerned I might not manage the return part. I cried as I made my way back to the car, hoping anyone seeing me would think it was the wind bringing tears to my eyes.
It was an emotional week with a feeling of a circle being completed and a final farewell made.
I’m still dithering over what to decide about the chemotherapy treatment option.
I have had a meeting with the palliative care consultant which was helpful and reassuring in that chemotherapy and palliative care are not an either or scenario and if I decide to go ahead with the chemo, I can still be seen in palliative care for help managing any symptoms from either the disease or from the treatment. Knowing support is available in managing symptoms caused by the treatment is reassuring.
Other topics discussed with the consultant included resuscitation and whether or not I should have a DNR in place and also whether or not I would want to treatment interventions such as ventilation (I think that’s a no).
I started on the SafeFit trial established by University Hospital Southampton NHS Foundation Trust, Macmillan Cancer Support and other medical bodies to enable people with a cancer diagnosis retain or regain physical fitness levels. After a very lengthy process or questionnaires both online and over the telephone – plus a bit of a hiatus in my application because of the unexpected appearance of cancer cells in my lymph nodes after my treatment ended – I was accepted and assigned an instructor. For the first four weeks I have one-to-one online exercise sessions, tailored to my fitness levels and needs. It’s very much a holistic approach so my instructor always checks on my stress levels – not sure she expected me to burst into tears on our first meeting but she coped very well.
I also re-started Pilates classes after a break and that felt good, too. Over the period of lockdown, which more or less coincided with my cancer diagnosis and treatment, the class has been so important – the exercise but also seeing people, even if only on screen.
All in all, I’ve been feeling fairly well – and although I can see the lymph nodes in my neck expanding they aren’t bothering me too much yet – though I do worry about winter when I usually wear polo neck jumpers, which I suspect will be an irritation. But then, as always seems to be the case, whenever I’m doing the things I’m supposed to be doing to improve my health, to stay as physically strong as possible, something knocks me back. This time, I put my back out. I was putting the cat’s breakfast down on the floor – forgot to engage my core and bend my knees. Mea culpa.
I reached for the frozen peas followed by the heat pad. Dug out the lumbar brace and took paracetamol, expecting it to ease off after a few days. It didn’t and I had to give in and make an appointment with my GP. Before cancer, I was rarely at the doctor. I was brought up by parents who believed the NHS was a wonderful privilege never to be abused – so you had to be seriously ill before the doctor was consulted – and so I still hate to feel I’m making a fuss about nothing.
Oh, my goodness, what a difference strong painkillers and a muscle relaxant made! When I woke up three days later (I’m kidding) I couldn’t believe how much the pain had receded. Before the pills, I couldn’t have sat for long enough to type this far. I should apologise here to the many people waiting for a reply to their emails, letters and cards – now you know why I’ve not been able to keep up.
The one thing which did help my back when it was bad was walking, which really eased it. I was delighted to be invited by a friend to take one of her llamas for a walk. It was a lovely.
Annie the llama did grumble a bit at first about being made to go for a walk but she soon stopped complaining and seemed to enjoy looking about her. Occasionally, she turned to stare at me as if to say: “I don’t know who the hell you are but I think we can manage this together.”
I’m so looking forward to my trip to Islay with Wee-sis, which is still a couple of weeks away. Isn’t it odd how time moves slowly at times? Before Islay, though, I have another exciting event – a wedding. I can’t remember when I was last at a wedding. I can’t remember when I last wore heels!
The week I come back from Islay (16-24), I’ll meet the oncologist, try to get answers to my questions and make my decision.
It’s been almost a month since my last blog post – and what a month of highs and lows and bits in between it has been. Get the drinks and snack ready for a long post!
Soon after the meeting with my oncologist, while waiting for the requested PET scan, I was on the beautiful island of Arran where I’d been invited on a writers’ retreat. I’ve visited Arran, with the DH, several times and on most visits we’d climbed Goatfell so I was concerned I’d be depressed knowing I can no longer do such climbs, nor many of the other walks I’ve previously enjoyed. Rather than be depressed, the combination of being in such a magical place with glorious sunshine, talking writing with three wonderful women, I felt exhilarated and by the end of the week had convinced myself I could climb Goatfell. I’d have to start early as it would take me all day with the number of rests I’d have to take but I was sure I could do it. I was also sure I was getting my writing mojo back.
We were there to write but we did have a day out around the island and visited the standing stones on Machrie Moor. I’ve put photos of them on a past blog post. Sue Vincent and I hoped we would make it there together, possibly after she came to visit Cairn Holy last April. Sadly, that was not to be. It was a warm sunny day (first time I’ve seen the Stones in sunshine) and we saw two buzzards and a red kite so we knew for sure Sue was around.
My lovely GP had posted the oncologist’s report from the meeting to me. Unlike seemingly everyone on the oncology team my GP believes the patient should have access to reports and letters. And is happy to explain things I don’t understand. The report made clear if the cancer is confined to the lymph nodes in my neck the oncologist is suggesting an aggressive radical course of therapy – ensuring “the overlap (from previous treatment) was minimal and the doses to the normal structures such as the spinal cord and the brachial plexus are within acceptable limits.” I think that makes it clear why a) it’s important for the patient to be able to read the report and b) have things explained before the next meeting.
If the cancer has spread radiotherapy isn’t an option and neither are targeted treatments, nor immunotherapy, which can cause pneumonitis. Remember the trouble I had with that! Chemotherapy “potentially with Docetaxel and Nintedanib,” the side-effucks of which sound even more horrendous than my previous chemo drugs.
My PET scan was booked for the Monday after my return but an appointment letter was waiting for me saying I’d to be there on Tuesday, not Monday. I phoned to check and was told the date had been changed because it was a Bank Holiday in England and the fluorodeoxyglucose (FDG) they inject into the vein wouldn’t arrive on time. The DH had to change the hotel booking we’d made for the Sunday night to the Monday. Luckily, the hotel wasn’t fully booked. We checked in, booked a table in the restaurant and had a pleasant evening. In the morning I’d just come out of the shower when they phoned to say the scan had been cancelled. We drove straight home – at least I was able to have coffee and breakfast – not in the mood to linger in Edinburgh.
The next two scans were booked and postponed. Finally, it happened on September 06. We didn’t go up the night before so it wasn’t the pleasantest of mornings on what is a pretty horrible drive anyway and worse when not being able to have a coffee. I could drink water though wasn’t able to have any cough syrup or pastilles, though.
I only found out by chance about not taking cough medicine. Every pre-scan discussion which stresses the need to fast also says it’s all right to take medication as usual. I don’t know what prompted me to say I use codeine linctus but when I did I was startled by the vehemence of the response. “Oh, no, you mustn’t. Because of the sugars it contains it can cause false positives in the scan.” Well, wasn’t it good I asked! If it had been discovered I’d been swigging cough syrup the scan would have been cancelled.
Top Tip for anyone having a PET scan – when they say you can take medication as usual during the pre-scan fasting period – do check if it really is OK to take the medicine you have.
Of the various ups and downs over the month the biggest down of all with Taliban back in power in Afghanistan. A few, a very few, of my friends have got out. Most have not. Having people I love and care about begging for help I can’t provide is heart breaking and soul destroying for us all.
And, so to the last down in this post – the PET scan result. My appointment was today, though not with my oncologist who has Covid, but with one of her colleagues and it was a video conference. Not an ideal situation.
Unfortunately, it shows the cancer has not been contained in the lymph nodes in my neck but has affected lymph nodes in several places. This means radiotherapy is not an option. I was dreading making a decision about whether or not to have radiotherapy, especially when described as aggressive, knowing how much it f****d up my lungs last time. And this time it would have been risky because of the proximity to the spinal cord and the brachial plexus. Anyway, I don’t have to decide on that as it’s not going to happen.
The only possibility is a course of chemotherapy – a much more brutal combination of drugs than last time, and which might give me a few extra months to ‘live’. I include the inverted commas because spending several months feeling ill, fatigued and unable to do much does not sound like living to me – existing maybe but not living. The difference between having treatment and not having treatment in terms of ‘overall survival’ is about two and a half months. It appears the main benefits of the chemo may be that it would relieve symptoms. I don’t yet have any and don’t know what they might be. I will ask. I will have other questions, too.
I have requested to speak to a palliative treatment consultant before making any decision. Guided by my wonderful mentor at Maggie’s Centre in Edinburgh, I actually asked about this a week ago but the message was missed because my specialist nurse has been working from home and until this week had been unable to pick up messages on his work phone. I didn’t like the implication at the last meeting I had with the oncologist that if I decided to go for palliative treatment I’d be discharged by her and referred to a palliative doctor.
Anyway, that’s where I’m at – the cancer is back, is not going to go away. I have decisions to make – should I plant more spring bulbs? – but for now I’m mostly looking forward to a holiday with Wee-sis on Islay next month.