MarySmith’sPlace ~ Fatigue & other side effucks Cancer Diary #25

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.

Looking across to Rough Island

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.

Dinner time
A shell-decorated tree
Wee-sis adds her shell to the tree
Watched by Sula

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.

MarySmith’sPlace ~ Cancer Diary #23 – cast adrift on a sea of confusion

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.

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 – Pregnant in Pakistan#02

I’m sorry I left you for so long wondering if Jon got out of his Afghan jail before our baby arrived in the world.

It was the shock when reading my diary at how very miserable I was stuck in Quetta waiting for news. Over the years I’ve succeeded in turning the story of Jon’s kidnap while I was pregnant into an amusing dinner party anecdote. If anyone had asked me how I felt being pregnant in Pakistan I’d have said it was absolutely fine – sailed through it.

In fact, I was an emotional, blubbering wreck who cried a lot and raged in my diary. I suspect it was writing my thoughts and fears every day which saved my sanity – and allowed me to put on a brave face in front of other people.

This was earlier in the year – loading supplies for the clinics in Afghanistan

I spent a lot of time in discussions with other aid agencies as the most powerful negotiating tool we had was if they let it be known they would stop supplies going in unless Jon was freed. I also had to carry on with my work although it wasn’t easy to focus on preparing budget applications when I was worrying about Jon.

One entry read: “His mother has sent his birthday card. Will he be back on time? I’m not going to tell her yet – she’d be worried sick and can do nothing. I just can’t imagine in what conditions he is living, how he is coping, how he is feeling – you’d think we’d be emotionally close enough for telepathy to work. Finding it too difficult now. I’m afraid I can’t cope for much longer and I’m becoming more and more afraid he will not come back.”

On November 22, I wrote: “Just heard on the BBC Thatcher has resigned. That stopped me thinking about Jon for all of 30 seconds.”

In competition to see who could carry the heaviest load

It was the day I received further news Jon was still in jail. I write: “Everyone is depressed.  Moosa [the office chowkidar] was so happy because he received a letter from his brother – first time he’s had news from home for ages. I wish I’d taken a photo of his happiness – such a smile. The family sent him almonds, which he brought to share with me. Lovely he wanted to share his gift and his joy but because we are all miserable because of Jon’s situation Moosa’s happiness is dimmed.”  

I was not alone – lots of people were around me providing support: Hamid Shah who was in charge of the Quetta leprosy programme would visit, sometimes sweeping me up to take me home for meals with him and his wife, Shanaz. Evelin, a German midwife who was working here was a good friend, frequent visitor and huge support and Linda, a health visitor who worked for a different NGO was always there at the end of the phone (when the damn things were working) keeping me calm. Nick and Debbie visited or invited me to their home. “It is good to know,” I wrote, “we have such good friends who really care. The only problem is – they weaken me – my stiff upper lip trembles at their kindness and I risk dissolving into tears.”

Office manager, Inayatullah hands a smiling Arif the key to his vehicle. Moosa third from the left.

And the baby? It seemed to be doing fine. I attended the ante-natal clinic regularly seeing Dr Shahnaz who assured me the baby was growing well. Although, one time she was concerned about my blood pressure being exceptionally high – at which point I burst into tears and explained the situation. She told me not to worry. “If your husband does not come back, I will be there for you. You will not be alone. I will even get into bed beside you when you are in labour.” I thought this a slightly over the top – as was the prescription she gave me for phenabarbitone. I threw it away. Usually used in the treatment of epilepsy, I knew it would cross the placental barrier. I played a lot of Eric Clapton instead.

Rahimy on the left and Jawad – on a picnic somewhere near Quetta.

One evening I received a message to go immediately to the French Bakery, a Hazara run bakery which was a bit of a Quetta institution. When I arrived the boss put a chair in the middle of the shop and handed me a sealed letter. I read it about three times before bursting into tears – of joy. Jon was free. I rushed round to Hamid Shah’s to tell him and Evelin so more hugs and tears all round.

My 2 am diary entry was full of waffle about the note, Jon’s possible arrival date and my gratitude for always having someone to keep me going through the nightmare. “Now, I feel really guilty about how little work I’ve achieved – I should get busy immediately.” Maybe not at two in the morning!

Jon arrived back on December 01 – fit and healthy and looking in much better condition than I felt. He’d been reasonably well treated, had patients brought to him and was allowed out to play football every day. The worst part had been when they’d originally arrested/kidnapped him and accused him of spying. Unfortunately, Jon didn’t recognise the word for spy so had no idea of what he was being accused. They were hauling him into position to hang upside down to be beaten when someone higher up came into the room and told them to cut him down. It soon transpired it was money they were after, not a conviction in court.

And that’s when my euphoria at having him back safely rather evaporated. “How did you manage to get free?” I asked.

“I paid the ransom. I sent a note to Hussain asking him to bring whatever he had left in his budget.”

I was furious! All the running about, the meetings with WHO and other NGOs to apply pressure by warning no further supplies would be sent to the area, had been for nothing. They would think this was a very nice little earner – no one would be safe if they thought the ransom demand would always be met.

Jon was unrepentant. “I was afraid I wouldn’t get back before our baby was born.”  

I calmed down – not good for the baby to get so worked up. And now, Dr Shahnaz wouldn’t have to get into bed with me when I went into labour and I could look relax and enjoy the last few months of my pregnancy.

I should have known better.

Jawad and Rahimy on a picnic at Hanna Lake, Quetta.

MarySmith’sPlace ~ AfghanistanAdventures#59 Ghastly things and lovely things

Jaghoray, Afghanistan, December 1989

Mazar Bibi Clinic under construction 1989
Mazar Bibi Clinic as it is today

Hussain had taken Rahimy, Sharif and Zahir, to see something more of the area and I was writing up my tour diary when Habib, one of the translators who had defected from Qolijou, arrived at Mazar Bibi with a jeep full of patients. I explained Hussain would not be back until late afternoon. He asked if I would examine the patients. I pointed out he had more medical training than I but he begged me to at least look at the most seriously sick of the patients, a seven year old boy. 

The child was carried into my room, deathly white, gasping for breath, barely conscious. Handing me a stethoscope Habib explained, ‘First he complained of a sore throat then he started coughing and now he has breathing problems. His father brought him to us this morning but we are not sure what to do for him and hoped Hussain could help.’ The child was seriously ill. When I looked in his mouth, I could see a kind of grey membrane covering in this throat. Diphtheria?

I turned to Habib, ‘You must take him to Rosanna at Qolijou.’ 

He looked at me, miserably, ‘Can you not give him medicine?  I can’t go to Qolijou because Moosa and the others will laugh at us and say we are useless doctors who cannot manage on our own.’   

I was incredulous that his izzat, his pride, would prevent him from doing all he could for the sick child. I knew Moosa and his colleagues might not know what to do either – Rosanna was the one I was counting on. ‘He’s desperately ill. We have to get him to Rosanna.’ Habib suggested I take his jeep and go myself with the boy. We piled into the jeep; the driver, a woman, another man, two more children and the boy’s father, who had wrapped his son in a blanket and was cradling him, as gently as he could, in his arms.  

Before we were halfway to the hospital, the father tugged at my sleeve. He gestured helplessly, wordlessly, towards his son, and I yelled at the driver to stop. The boy had stopped breathing. I wanted to try artificial respiration but as I knelt down beside the boy, his father shook his head. His son had gone; there was nothing more to be done.

Someone spread a patou on the stony ground and laid the child on it. His father gently closed his eyes, weighting them with two small stones, and tied his big toes together. Feeling totally helpless, and angry at the unfairness of it all, I broke down and wept, walking hurriedly away from the little, dry-eyed group gathered now in prayer around the child. I returned to the jeep wanting to continue to Qolijou – desperate for some reassurance from Rosanna that there was nothing I could have done – but the father wanted only to go home to bury his child. We returned silently to Mazar Bibi. 

When I saw Habib, and tried to tell him what happened, I felt the tears overflow and run down my face. I hurried off to hide in my room. A few minutes later Habib entered saying, ‘It is not your fault. No one could have saved him. Now, will you please come and check the other patients, so that these people can go home?’

I checked the two children, who both had high respiratory rates and prescribed antibiotic syrups begging Habib to get them to Qolijou as soon as possible so Rosanna could examine them.

The woman came in and lay down. Grabbing my hand she guided it to where I could feel a large swelling, about the size of my fist, in her abdomen. She told me that, of the six children she’d had, only one, born four months earlier, was alive. Again, I could only urge her to consult Rosanna. Along with my feelings of helplessness, was an overwhelming anger that so many people should suffer so needlessly. The war against the Soviets followed by a civil war had never seemed so utterly pointless.

Fortunately, there were happier times to enjoy back in Jaghoray. Jawad’s brother got married and Jon and I were invited along with Hussain and Rosanna.

The bridegroom (Jawad’s brother)
Rosanna between me and Jon at the wedding. We were all given beautiful embroidered handkerchiefs as remembrances
A young Jawad

One day, Baqul’s wife, Fatima, from Sangsuragh where our temporary clinic had been, came along with other friends to visit me. It was lovely to see them again. I took them to my room, where they insisted on coffee, in preference to tea, before settling to tell me all that had been happening in the village since I left. 

Latifa was now engaged to be married, her mother had recovered from the injuries received when her house had been hit by rockets, Hazrat had been released, unharmed, after Hisb-i-Islami kidnapped him and several women had had babies. It was a lovely afternoon and I was touched they felt the bond of friendship strongly enough to face a three hour walk – each way – to see me. They complimented me on the progress I’d made in learning Dari and our conversation flowed more smoothly than when we first met. 

Of course they all wanted to consult the doctor while they were at the clinic, but only if I stayed with them and personally supervised any examinations Hussain wanted to do. We trooped over to the consulting room where I was astounded by the change that came over them. In the privacy of my room they had been totally free and at ease, allowing their chaddars to slip off, breast feeding babies without bothering to do up their buttons afterwards. In front of Hussain, they once more shrouded themselves completely, and from conversing and laughing together at an ear splitting decibel level their voices were reduced to a barely audible whisper. Gul Bibi even refused to open her mouth to allow Hussain to examine her teeth yet, whenever he turned away, she would catch my eye, directing seductive looks at Hussain’s turned away back, eyes rolling, lips pouting. At the explosions of mirth from the other women, Hussain would whirl around, by which time Gul Bibi would have once more disappeared into the all-encompassing folds of her chaddar. The more irritated Hussain became, the more the women enjoyed their fun, but I was thankful when at last, consultations over, I could escape before Hussain’s anger erupted.

After my last post a couple of Hazaras left comments, including a YouTube link to a video of Sangi Masha bazaar and the bridge which some years ago replaced the scary one. I was fascinated by how different the bazaar looks and completely amazed at the new bridge so much so I sent the link to Jawad to confirm it was the same place. He replied to let me know the person who made the video, Mehdi Ahmadi, ‘is a cousin of my children’. Worth watching – it’s under twenty minutes, the bridge is about ten minutes in. ‘Meeting’ young Hazaras who are finding and enjoying my Afghanistan Adventures and sharing their own memories in the comments brings me so much joy and makes me feel I am still very much connected to Afghanistan and its people.

Mazar Bibi Clinic in winter – such a glorious blue sky

MarySmith’sPlace – Cancer diary #07

Cancer diary #07

Monday, October 19: The beginning of this week was horrible; horrible enough for me to absolutely dread the next round of chemotherapy. Apart from the heartburn (and thank you everyone for your suggestions – it has gone – for now) I had a cough, my stomach hurt, my scalp hurt, my mouth was sore (the poor cat has been quite distraught because she enjoys sharing my usual bedtime snack of baked cheese and onion crisps and I couldn’t bear to eat them), and I had diarrhoea (a change, though not a particularly welcome one, from constipation). On top of those side effects was the dreadful tiredness which dragged me down into a trough of despondency and apathy. And temper. Oh, good grief was I bad tempered!

I couldn’t see any point in going through this, for what might only be an extra year – not least because with all that is going on with Covid-19 cases rising and lockdowns all over the place the prospect of my current self-isolation continuing for what be the rest of my life didn’t bear thinking about.

And, with the worry of my kidneys not functioning as they should I was glugging down my two and a half litres of fluid every day so my tummy felt bloated and I was constantly nipping to the loo – including several times during the night.

In the beginning, I talked with doctors about wanting to have quality of life for whatever amount of time I had left – this wasn’t what I mean by quality.

Also, I had a painful foot. Come on, guys, lung cancer is quite enough, without throwing other minor problems at me. And did I mention I was bad-tempered?

I kept looking back to the days following the first chemo and thinking, well I was fine by Tuesday so maybe tomorrow I’ll be all right again. Tomorrow arrived and I wasn’t all right. Aware countless people have gone through chemotherapy with much worse side effects made me feel I was being a complete wimp.

On Friday evening, a full week after chemo, it was as though someone had flipped a switch and I was back to being me. Just like that. Extraordinary! Life was sweet again. On Saturday my brain was functioning enough for me to do my Afghanistan blog and reply to some of the many outstanding emails. The DH and I had a grand day out on Sunday, visiting the White Cairn burial chamber followed by hot chocolate at the Glentrool Visitor Centre – just an ordinary, normal outing, which a few days earlier I couldn’t have imagined being able to do again.

White Cairn burial chamber, Glentrool, Dumfries & Galloway

Something which really gave me a huge psychological boost and kept me going was a private message from someone who had read my cancer diary. She’d been prompted to have a lump in her breast – which she’d been ignoring, hoping it would disappear – checked out. She does have cancer but will have surgery soon, followed by radiotherapy and probably won’t need chemo. I’ve worried about my cancer diary being a bit self-indulgent but this has made me feel it really is worth doing.

Another nice thing was a phone call from the cancer specialist nurse to say my bloods show my kidney function is improving – yay! Huge relief – though it does mean having to continue getting those litres of fluid into me. But, now I know it’s working, it’s a small price to pay.

And, Kim Ayres sent through the photos he took last week. One I deleted immediately as it showed up all the wrinkles – and my goodness, there are many – on my face and neck. The DH and I can’t decide which we like best – the one to frame and put on the mantelpiece – the one which says, “This is us”. 

Which do you think?

Finally, this week of huge downs and sweeping ups ended with having CT scans today to see if the tumour is shrinking – or spread anywhere else. I won’t know until next Monday when I have an appointment with the oncologist. If the tumour is shrinking – and my kidneys are up to it (the particular drugs I’m on apparently can cause kidney damage, something which is in the six pages of side effects but hadn’t sunk in) – I’ll continue with the chemo. If it’s still growing, then we need to have a whole different discussion. It’s going to be a long week, but at least I’m feeling well and able to do things to take my mind off worrying about it. I might even get some writing done!  

MarySmith’sPlace – Cancer diary #02

September 13: I am still stunned – and deeply touched – by the number of messages of support and good wishes both on the blog and sent privately since I posted about my cancer diagnosis. Thank you, all.

I met the oncologist on September 07. I didn’t sleep much the previous night and couldn’t settle to anything in the morning before the afternoon appointment. I felt as I imagine a prisoner in the dock might have felt when the judge donned his black cap to pronounce the death sentence.

My friend Willow who blogs HERE, has a wonderful pair of kick-ass, confidence boosting red shoes. I don’t have red shoes but I have some black ankle boots with similar properties so I wore them and before getting out the car at the hospital I reached into my bag for some confidence-inspiring lippy. Then remembered I was about to put on my mask.

The DH came with me and we asked to record the discussion. It’s just as well we did because despite there being two of us listening and asking questions and my note-taking (which dwindled when the names of drugs I can’t spell started being bandied about) by the time we got home we’d forgotten a lot of what was said. It’s been so helpful to listen again so there’s my top tip for anyone about to have a similar discussion with a doctor – record it.

She started with a résumé of how all this began and what had been done, how I was feeling physically, how things had changed. I admitted I do feel my fitness levels are definitely dropping, mainly because the weather has been so crap and I’ve not been walking so much, never mind what’s going on in my lung.

At least the cough I’ve had since the bronchoscopy has more or less gone, thank goodness. It was one of those dry little coughs which if I’d had to listen to someone else doing it I’d have become so irritated I’d have had to leave the room. The only sour note in the entire discussion was when she said she was sorry I’d had such a traumatic experience with the bronchoscopy but other people don’t. I felt like saying that actually, it’s only because I’m so gobby I do say what it is really like for the patient.

She examined me and showed me the tumour and affected lymph nodes and went on to list my options. I can choose to do nothing, in which case I may have a few months. I don’t know at what point during those few months I would become really ill and not have much quality of life left.

The other options are chemo (again those names of drugs I couldn’t spell – pemetrexed and carboplatin) to shrink the tumour followed, if this happens, by radiotherapy. Or, I could opt for those drugs plus pemobrolizumab, which is an immunotherapy drug. There would be no radiotherapy although at some point I could stop the immunotherapy drug and have radiotherapy but couldn’t go back on the drug again.

I said I couldn’t decide there and then and needed some time to think. She agreed and suggested I take until the end of the week. She asked the cancer specialist nurse to give me a B12 injection and a prescription for folic acid and some steroids to be taken the day before, the day of and the day after the chemo and to book a slot for the end of the following week so if I decided on one of the treatment options everything would be in place. Oh, and I’ve to self-isolate as has the DH.

We didn’t discuss it that night. Even the next day, the DH and I sort of mentioned it in passing but we did talk more about it later. I’d agree to speak to the nurse on Thursday as she doesn’t work on a Friday but by Wednesday I’d made my decision and was planning to call her, because on Thursday I was meeting my friend Sue Vincent at Cairn Holy – except that Sue never left home after being told her X ray results needed further immediate investigation. She has ‘something’ in her left lung; my ‘something’ is in my right one – we’re a pair of bloody bookends!

The nurse phoned me on Thursday; I told her my decision was to go for the standard chemo followed by radiotherapy. She said she’d see if there was a slot available for the end of next week. In the meantime I should organise for bloods to be taken. On Friday, I phoned her colleague who checked and said, yes, there was a slot on Friday 18 at 11.30 and I’d need an ECG done before so could I come in earlier.

All being well, my next update should be after I’ve had my first dose of chemo; a step into the unknown. I’ve never in my life wanted to do a parachute jump – my stomach goes into freefall just thinking about it. And now I feel as though I’m about to jump out of a plane hoping that a) there really is a parachute strapped on by back and b) it actually opens.     

 

MarySmith’sPlace – Cancer Diary #01

September 06: I’ve been dithering for a while about whether or not to blog about this but decided what the hell, it’s my blog and I can write what I want. Writing helps me to process what’s happening – and a lot is happening right now, the biggest of all being a lung cancer diagnosis. I’m still trying to get my head round it.

I was whipped into hospital on July 06 with extreme breathlessness, which my GP suspected was caused by pulmonary emboli (blood clots in my lungs). Blood tests and CT scan very quickly showed he was correct. I was put on Dalteparin injections to dissolve the clots.

Then a consultant appeared to tell me during the scan a ‘mass’ was seen in my right lung, which would need further investigations. I asked if it was perhaps an old shadow from when I had TB many years ago. She shook her head. I said: “You think it’s cancer, don’t you?”

“Well,” she said, “as you have introduced the word to the conversation, yes, there is a distinct possibility it is cancer. However, we won’t know until we do more tests. We’ll do another scan tomorrow to check there is no involvement in other areas such as pelvis or liver. The next step will be a PET scan in Edinburgh.”  

With no visitors allowed I could only talk to the DH on the phone. Neither of us really knew what to say or think. We say goodnight. I find myself in tears. I don’t want to have cancer. I don’t have time. I have more books I want to write. Will I have time to even get one finished? How am I going to tell my son? He’s coming home for my birthday soon – first time we’ve seen each other since before lockdown.

The nurse I’ve mentally named Miss Hostility-and-full-make up goes by the window and turns away pretending not to notice I’m upset. That stops my tears. Later, when she comes to do the final observations I ask if it would be possible to have two paracetamol. “I’ll see what I can find,” she replies.

I do not say. “This is a fucking hospital – there must be headache pills available.”

The second scan doesn’t show up anything lurking in my liver. Felt ridiculously pleased about that.

July 29: I had the PET scan (Positron Emission Tomography). A radioactive glucose tracer is injected which is attracted to any ‘hot spots’ in the body.

August 04: The consultant phones me to tell me the lesion and some lymph nodes in the chest are positive, as expected. She says tiny lymph glands above my collarbones also show signs of uptake.

August 12: This day will never be forgotten! I’m getting ready to head to the hospital, after a sleepless night worrying about the bronchoscopy when someone phones to say the bronchoscopy has to be cancelled. It can’t be done unless the patient has had a negative Covid-19 test within the last 48 hours. There’s nothing to say so on the appointment letter. Another consultant phones and tells me to come into the hospital and he’ll arrange the Covid test. While waiting for the technician Dr X shows me the slides from the PET scan. The tumour is enormous, taking up a huge amount of space. It is, he tells me 7cm. He answers my questions, explains about targeted treatments, radical treatments and mentions something suspicious on my spine.

After my Covid test is done I go outside to wait for the result. I feel healthier than I have done in ages. I can breathe. I’ve stopped coughing, the sun is shining. I wish I could’ve stopped time just there, just then.

The radiologist who had hoped to do an ultrasound biopsy of the tiny lymph nodes said they lymph nodes were smaller than his smallest biopsy needle and he was not going to attempt a biopsy.

Next came the bronchoscopy to take tissue from the tumour in my lung to enable them to determine what kind of cancer I have and to work out the specific mutation to enable targeted treatment.

It was sheer hell. They put water in your lungs. I thought of Suffragettes being force fed, of prisoners being water-boarded. I thought if having cancer was going to involve more of this kind of thing then it was time to revise my position on legalising euthanasia – something I’ve always been against.

I didn’t sleep that night. It was the hottest night of the year and I was frozen. I replayed the horrors of the bronchoscopy over and over and over.

August 19: Dr X phoned to tell me my cancer is Adenocarcinoma. The genetic makeup hadn’t yet come through. He says he’s a bit worried about there not being enough tissue. I tell him I’m not having another bronchoscopy. They can put me to sleep and harvest everything they need while I’m under general anaesthetic. He will talk to the surgeon in Glasgow. He wants me to have an MRI scan on my spine and another CT scan to check there’s nothing on my brain.

August 25: I have the MRI and two CT scans – one for the brain and one to see if the collarbone lymph nodes are any bigger. I was lucky to get cancellations because the appointment letter was for September 11.

August 28: Dr X phones – no cancer in my brain or my spine. Yay! The tiny lymph nodes are no bigger. Unfortunately the tumour in my lung has doubled in size and has now collapsed the top part of my lung. Also, they can’t work out the mutation of the cancer cells because enough tissue had not been taken. There is no more talk of targeted treatment or radical therapy. Dr X tells me the oncologist will now consider standard treatment of chemo followed by radiotherapy. I’m stunned by the implications of all this. September 04: The oncologist’s secretary phones this afternoon to offer me an appointment on Monday 07 – a full two months after the tumour was found; a tumour which is growing at a terrifying rate.

MarySmith’sPlace – Afghanistanadventures#39 – Learning who’s who at the Lal clinic

Lal October 1989

IMG_0009 (Custom)

After the excitement of arriving in Lal I experienced a sense of desolation when Khudadad left next day. Although we’d been travelling companions for barely two weeks, not only had I come to depend on him for so much – from ensuring I was well fed to finding a bed for the night – but I’d truly enjoyed his company. As the truck pulled away I stood forlornly clutching the huge melon he had given me as a farewell gift, waving until he was out of sight.

Stocktaking and updating the record cards of leprosy patients seemed such mundane chores compared to the excitement of travelling, never quite knowing what might happen or where we would end up. Having to begin all over again getting to know a new group of people none of whom, apart from Qurban, I had ever met before was daunting.

The clinic was a depressing place with dark, poky little rooms whose tiny windows allowed in hardly any light – a common design feature in houses throughout the area, to insulate them from the bitter chill in winter, when temperatures drop to -40C. Qurban had done his best to improve the appearance of my room, which was the size of a cupboard, by lining the crumbling walls with orange cloth. When I was in bed, a colony of mice staged athletics events behind the cloth, occasionally venturing out to scamper across the pillow. Qurban was negotiating over the price of a piece of land on which to build a new clinic, something I hoped he could accomplish quickly.

IMG_0083 (Custom)

Entrance to the clinic

I began to sort out who was who amongst the staff. Ibrahim was in charge of the dressings and injection room where he did the soaking, trimming and dressing of leprosy patients’ ulcers, as well as attending to other wounds and injuries. As two of his nephews had both been my English students in Karachi where they were trainee leprosy technicians, I happily accepted Ibrahim’s invitation to visit his home in Waras sometime, as I had promised the boys I would try to deliver their letters personally to their families.

IMG_0010 (Custom)

Qurban, his brother Bashir and a patient (name has escaped me)

I’d already been invited by Qurban to visit his family’s village and Haboly, the general medical assistant, was insistent that I must also visit his. Invitations quickly followed from Aziz and Rahimy and my social calendar was soon completely filled for all foreseeable weekends.

IMG_0001 (Custom)

Ibrahim on the camel on the right. Camels were rarely seen so far north

Rahimy had been a mujahid but retired from their service, cheerfully returning his Kalashnikov, to work in the clinic as a field assistant where he was paid a regular salary and was less likely to be shot at. Wounded in a skirmish, the injury had left him with a permanent disability in one hand. He was such a quiet, gentle person, demonstrating a genuine concern for the patients, it was difficult to visualise him in his former role of gun toting freedom fighter. Rahimy was to come with us to Pakistan to attend a laboratory technician course over the winter. The second field assistant, Juma, would then, the following summer, begin his training in Karachi as a leprosy technician.

IMG_0002 (Custom)

Patient on right and some of his family

IMG_0011 (Custom)

Me being maternal with a baby securely parcelled up so it didn’t wriggle

Every morning patients gathered early outside the gates of the compound. Many travelled for hours by foot, or by donkey – by horse, if they were better off. Some took two days or more to make the journey from remote villages and, most days, around fifty patients arrived to consult Qurban and Haboly. They arrived well prepared for a long wait, bringing with them kettles and dry tea and nan, along with fodder for the horses and donkeys. Children found new playmates with whom to pass the time, chasing each other amongst the groups of adults and around the tethered animals. The scene resembled a country fair and in fact, in the days following the clinic’s initial opening, one enterprising man had opened a temporary chaikhana to cater for the crowds.

 

In addition to these “general” patients Qurban had a case load of around two hundred leprosy patients scattered across his extensive control area. He had an almost equal number of registered tuberculosis cases. It was too much for one leprosy technician to cope with so Qurban was keen for Juma to start his training as soon as possible to lighten the load.

Tuberculosis patients caused the greatest concern because of the rate of absenteeism, and lack of personnel to follow up missing patients. The effectiveness of the tuberculosis drugs in some ways works against controlling the disease in Afghanistan – and other developing countries – because soon after a patient begins his treatment he feels well. Believing he is cured, he discontinues the medication. If he is being prescribed drugs by a private doctor the cost for the full course of treatment is prohibitively expensive and, understandably, the impoverished patient has other uses for his money. The biggest danger, when a patient stops taking his medicine before all the bacteria has been destroyed, is the remaining bacteria mutate into a new strain, resistant to those particular drugs.

When news spread a foreign doctor had arrived the numbers of patients, especially women, increased. Despite Qurban’s cajoling I refused to play at being a doctor. ‘In my country a person would be sent to jail if caught pretending to be a doctor. It’s too easy to make a wrong diagnosis or prescribe the wrong drugs. I’m happy to check female leprosy patients and talk to mothers about nutrition and family planning but I’m not going to pretend I can do anything more than that.’

Qurban laughed, ‘You are not in your country now. The people here are desperate for medical care. Anyway, everyone in this clinic is a doctor, even the cook!’ I’d heard the cook being called Dr Aziz but had assumed it was simply a term of respect. I hadn’t considered the possibility that he might actually prescribe medicines for people and was only slightly reassured to discover he confined his prescribing to aspirin and vitamins.

IMG_0084 (Custom)

‘Dr’ Aziz, the cook

We finally agreed I would do the stock taking, write my reports and carry out leprosy examinations on female patients. I’d be available to talk to women about nutrition for their children and for themselves in pregnancy, to explain how contraceptive pills should be taken or to teach a woman how to work out her fertile days. The dwindling number of female patients soon made it clear the women were not interested in hearing a foreigner talk about mashed potatoes and greens for their children, and had no magic drugs to make their babies strong and healthy.

 

MarySmith’sPlace – Afghan Adventures#31 Women’s health, women’s work, women’s place in the scheme of things

Next day, I spent the morning in the women’s clinic with Zohra. I was embarrassed at finding it difficult to understand the women who fired questions at me, making me feel my command of the language was still pitiful. In my defence, their accent was very different from that of Jaghoray.

Slide13 (Custom)

Besides those patients with diarrhoea or throat or eye infections, several women had come for ante-natal check-ups. Two had vaginal infections, one, a prolapse of the uterus; four wanted contraceptive pills while another desperately wanted to become pregnant. Most of Hussain’s female patients complained of a mixture of infections of eyes, throat or chest. Apart from the occasional woman who complained of burning urine, he rarely had any patients with gynaecological problems. Afghan women simply cannot discuss such intimate problems with a male health worker, never mind allowing a physical examination. A great many women suffer appalling health problems in silence.

Islam teaches that women should be modest in dress and behaviour but, somewhere along the line, this has been reinterpreted in such a way that modesty has given way to women feeling a terrible sense of shame women regarding their bodies and reproductive systems. The Prophet Mohammed (PBUH), in his teachings, surely never intended women be denied medical help, nor be allowed to die before exposing the most private parts of their anatomy to a male doctor?

As long as the words of the Prophet continue to be interpreted, in the rural areas in particular, by illiterate misogynists, women will always be denied rights – and the west will continue to misunderstand the teachings of Islam.

The nearest hospital which could provide obstetric services was in Kabul, a journey which could take two or more days depending on road and transport conditions and whether there was fighting along the way. A woman needed a male escort but going to Kabul was a dangerous mission for young men who risked being press ganged into the Afghan Army.

In the afternoon Zohra introduced me to her neighbours, Gul Chaman and Fatima, who lived below Zohra and Hassan’s house. Since their husband, despite the protests of Gul Chaman, had taken Fatima as his second wife ten years previously, the two women had not spoken to each other. Gul Chaman, with her children, occupied one room of the house, Fatima and her brood, the other. A strict rota system had been instituted for conjugal visits – and for the use of the tandoor in which each wife baked the bread for her own family. Hostilities between the mothers did not extend to the two sets of children who played together, receiving comforting cuddles for scraped knees and bloodied noses from whichever mother happened to be nearer at the time.

Making bread

Bread straight from the tandoor. On the left fresh pasta called ‘ash’ I should maybe say this and the next photos are not from Sheikh Ali but from a different place on my travels.

When it was her turn for the tandoor, Gul Chaman showed me how she baked bread. As the heat inside the oven was tremendous she wore a long, very thick leather gauntlet on her arm.  She would reach right into the furnace to slap the prepared rounds of dough on the walls. When done, she hooked them out with a metal rod. The smell of bread fresh from the oven is one of the most delicious things in life.

Not to be outdone, Fatima gave a display of weaving the brightly coloured gilims and laughingly persuaded me to try my hand. I soon realised this was not a skill I could master – my inexperienced fingers proved to be all thumbs, and totally uncoordinated. It was slow, tedious work and even with three or four women working together at the long frame it could take a month or more to complete one gilim.

IMG_0022 (Custom)

Working on carpets

After clinic was over for the day, Zohra often had friends visit for tea and chat, but she admitted in the last year she had been out of the compound only twice, once to offer condolences when someone died and once to attend a wedding. I was unhappy when I realised I was expected to behave within the prevailing standards set by Hassan. When I mentioned going to see the bazaar the suggestion was swiftly vetoed, ‘There’s nothing to see in the bazaar, this is a poor village. If you need anything I can get it for you.’  It was the same whenever I enquired about Khudadad. ‘Don’t worry. He’s fine. He’s happy.’ Whenever I asked Hassan about transport he would tell me not to worry. Then he would embarrass me by asking if I was not happy in his home, was I not being looked after properly and was there anything I needed to make my stay more comfortable?

I was happy to spend time with Zohra listening to her stories about the work she did to improve the women’s health but there was really no work for me here and I was anxious to reach Lal.

Slide33 (Custom)

Spinning wool

Choosing a time after lunch, when I assumed Hassan had left on one of his undisclosed outings, I slipped into the guest room. Khudadad gave me a huge grin. ‘Where have you been?  When are we leaving?  I am very bored here!’  We managed about three minutes of conversation, centring mainly on the fact that Hassan seemed not to be trying to find transport to Lal and did not want Khudadad to wander about the village by himself before Hassan’s soft voice made me jump.

‘Is anything wrong?’ he asked, from just inside the door.

‘No, nothing. I just wanted to talk to Khudadad. I haven’t seen him since we arrived.’ Hassan sat down and I understood that he was not going to allow me to sit alone with Khudadad. As his guest I felt I could not make an issue of my freedom being so curtailed. Conversation rather dried up and, after a few moments, I rose to return to the family section of the house. I wondered if Hassan thought that, if left alone together, Khudadad and I would immediately fall on each other in an ecstasy of unbridled passion. What did he think happened when we slept in roadside hotels without a third person to guard our morality?

Slide26 (Custom)

Washing sheep’s fleece before spinning. 

One day, a beaming Hassan informed me he had arranged for a jeep to take us to Bamiyan, the following day. We were to be ready to leave at the usual setting out time in Afghanistan – four o’clock in the morning. It seemed a bit excessive. Bamiyan was only a three hour drive from Sheikh Ali – as did Zohra’s contribution of hard boiled eggs, chicken and dried fruits and nuts.

The driver never showed up. We ate the hard boiled eggs for breakfast and had the chicken for lunch and Hassan was very apologetic about it all and promised to look for another driver.