Saturday 07, August: The biopsy result on the lymph nodes shows the cancer is now metastatic. To quote from the report: “The morphological features and immunoprofile are consistent with metastatic adenocarcinoma from the lung.”
I had a CT scan on Friday including neck, chest, abdomen and pelvis to identify where the cancer has spread. And, so, I wait again for the next result.
This must be the shortest update I’ve written because I haven’t yet processed what I’m feeling/thinking – and probably won’t until the scan result comes through and the wait to see the oncologist and find out what, if anything, can be done.
Saturday, 31 July: I’ve not yet quite got into the swing of regular blogging after my break and was shocked to find over a week had gone since I last posted.
On Wednesday, 20 July I had the ultrasound on the lump on my neck, which turned out to be three small lymph nodes, suspicious enough in appearance for the doctor to decide to do a biopsy. He said in the lab they will be looking to see if the cells are cancerous or not. If there are cancerous cells he thinks the oncologist will want to look at treatment options.
I’m not sure when I’ll hear the result and I so hate the waiting. Since the tumour in my lung was discovered last July, there have been endless periods of waiting – during which my imagination runs riot, scaring myself stupid with ‘what ifs’. Funny they never include a ‘what if, there’s a totally innocuous reason for the dodgy lymph nodes and all’s well! No, it’s what if the cancer is back, what of it has spread to …. (name every organ in the body) or …?
In the meantime, since Saturday, 16 July I’ve had a painful right calf. I initially assumed I’d pulled a muscle but not only did the pain become more painful, the leg began to feel hot. When, on Wednesday night, I asked the DH if one leg looked bigger than the other he insisted on taking me to A&E. Two hours later, the doctor said someone would call me next morning to come in for an ultrasound on my leg for a suspected deep vein thrombosis (DVT).
The ultrasound was done on Friday (all the slots for the next day had already been taken by the time the A&E doctor put through the request – it was about 2am by then) and the DVT was confirmed. By this time my right ankle had vanished into the general puffiness, my shin was hot with skin so red and shiny it looked like it might just burst open and it was painful.
As the ultrasound request came from A&E it was to there the report was to be sent and I guided back to A&E. Things became slightly bizarre then. First, I was surprised to be called into the triage nurse’s room where she asked me what had brought me to A&E this morning. I explained I’d just had an ultrasound which confirmed a DVT and the report – I pointed to the computer – should according to the radiologist, be there and I was to see a doctor. The nurse maintained she’d never heard of such a system and sent me out to wait.
It wasn’t long before I was called by a doctor, who must have received the report, and who showed me to a bay. He excused himself, saying he’d back in two minutes. A nurse came in and asked if I’d mind moving to a different bay. As she started to push the bed out the door ‘my’ doctor returned to ask where she was going with his patient. “Two bays down,” she replied, “as it will be easier to carry out her eye procedure there.”
Luckily, the confusion was soon sorted out (and it soon would have been anyway the moment someone tried to get anywhere near my eyes!) and after an examination I was prescribed Dalteparin injections. The doctor said a nurse would come to administer the first one and teach me how to do it. Sometime later, saying the nurse was ‘too busy’, he returned to give me the injection (can’t say it constituted a teaching session). The prescription pad was finished and he said he didn’t know how long I’d have to wait until a new one appeared but I could leave if I wanted, with three injections, and call my GP practice to ask for more. I said I’d leave.
My GP was able to write up a prescription for more injections so I’m now stocked up for a few weeks – though I still need to be shown properly how to administer the jags myself. The DH, fortunately, is very competent but if I want to go away by myself I need to learn.
On Monday, 26 July I was taken aback when my oncologist phoned me. It’s only the second time she’s ever called. The biopsy report hasn’t come through, of course, but she’d been informed about the lump and the biopsy and the DVT. She is arranging for me to have a CT scan as soon as possible so she can see exactly what’s going on. And so, I wait.
I hope by this time next week I’ll have news of results.
Wednesday 07, April: A week and a day since my last update and it has been a strange week of ups and downs and mixed emotions. Missing Sue terribly yet sometimes forgetting she’s not still here. I find myself thinking, “Oh, I must tell Sue …” and then remember. I read her posts being re-blogged on franceandvincent and laugh and cry and relish the sheer joy she felt exploring her native Yorkshire moors.
And today, I’m devastated because while in the garden I lost one of the earrings she gifted me. I’ve searched and the DH has searched but so far no luck in finding it. I’ll keep on looking, though needle in a haystack comes to mind.
When the weather has been good I’ve spent time in the garden, well wrapped up (I don’t cast clouts until May is out and have still been wearing my thermal vest) mainly reading and gazing at the daffodils.
A friend came one day for coffee in the garden – we last saw each other sometime in the summer of 2020 – so that was pretty special.
Also, on Easter Sunday, Wee-sis came round. The weather had changed by then so we sat freezing for an hour but it was worth it. Last time we were together, socially distanced, was back in February when we went for a walk at Rockcliffe and saw the shell tree, which was the day my cough started.
I’m pleased to say I am coughing less than I was a week ago though I am impatient to be rid of it all together and to stop being so breathless on any exertion – perhaps my expectations of how quickly the steroids would work were too high. I remember when Dad was put on a course of steroids and to our astonishment he managed to get out of his wheelchair (he’d lost all mobility months earlier) and take a few steps. Fortunately, the DH was there to catch him before he hit the floor. I was expecting to be skipping around like a lamb after a week on steroids.
I did manage to walk maybe about a mile to and from the osprey viewing platform at Threave and take a photo of the osprey on the nest. I was ridiculously pleased knowing the ospreys had returned and I was here to see them. I also felt quite chuffed at managing the walk. Next day I was tired but thought it was maybe to be expected. The day after, though, I was coughing a lot more again and feeling very fed up with life. Lesson learned – don’t push, don’t try to do too much.
Since then, I’ve limited my walking to short strolls in the park. I’m ashamed to admit we drive there. I can’t quite believe it has come to this. It’s only a few weeks since a friend and I walked from my house to and around the park and back home – under two miles – and now I can’t even do that. Yet. I will, though, I will.
From time to time the fact my tumour is reducing in size makes me feel astonishingly joyful, though I quickly resume my usual yes, but, we don’t know for sure what’s happening, don’t tempt fate, wait for the next scan … I sometimes wonder what it must be like to be an optimist.
I am, however, beginning to feel human again: not yet a fully formed human but getting there. I’m doing things. I have the talk for Aberdeen Libraries next week (fully booked with a waiting list, which is good to hear), I took part in the Society of Authors in Scotland inaugural Zoom meeting of non-fiction writers and I’m – almost – beginning to write again.
It has been so long. When we went into lockdown last year I stopped writing. Oh, I was always going to get on with it, but there was something about not actually having to do it which let me off the hook. Fortunately, before my writing muscle totally atrophied I took part in the Writedown project, in which 22 people recorded their reactions to what was happening in lockdown. When, as we were emerging from the restrictions, I was told I was not likely to live more than seven months if I did not go for treatment for lung cancer other writing projects were abandoned. Well, apart from this cancer diary and some very rough draft poems.
The voice whispering in my ear was saying: “Wait and see what the treatment achieves. No point spending time editing the My Dad’s a Goldfish memoir if I’m not going to be around to finish it.” Maybe treatment would grant me more time, enough time even to finish the book. Now, I’ve had the treatment. I know the tumour has been shrinking but won’t have a more definitive (is there such a thing in cancer?) result for another seven/eight weeks. How much time might I have? Will I want to spend it working on a book I may not finish? Would I rather spend my time exploring Scotland (Covid restrictions allowing) or making a final attempt to clear out the attic and my dad’s books?
I feel so wishy washy compared to Sue. When told she had probably ‘three to six decent months’ she worked her socks off editing and re-publishing the books she and Stuart France had previously published plus editing and publishing some new books of her own as well as writing blog posts. It turned out her time was much less than estimated but even when told it was going to be ‘days into weeks’ she didn’t sit back, put her feet up, cuddle Ani and let those days drift by but carried on working, despite the pain she was in, to create a legacy for her family and for all of us.
And so, I salute and thank you, Sue for giving me a much-needed nudge and I will pick up my red editing pen tomorrow and get cracking. First, though, I’ll be out in the garden doing a forensic fingertip search for my lost earring.
I leave you with an image of a full-throated song of joy.
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 03, February: Another week has gone by at the speed of lightning and I don’t understand why, when I’m doing next to nothing, time continues to go by so quickly.
What exciting things happened this week? Well, the new specialist nurse called the day after I posted on the blog saying he hadn’t rung, when I’d really needed someone to make contact. I told him I thought he was going to call on Wednesday, as the substitute nurse did the week before. I think it comes down to the interpretation of “will call every week.” I take it to mean on the same day each week, the nurse takes it to mean any day of the week. I did try to explain how it feels to have finished treatment and to be left, not knowing the result (I understand why there has to be a wait before the scan) feeling abandoned. He said he understood. When he said he’d phone again next week I suggested we put it in our diaries. This seemed to be a bit of a foreign concept but was agreed. It worked and he phoned again today.
I was less needy when he phoned today, thanks to having a long chat with my GP yesterday. I’d had to call to ask for a laxative prescription. The pain on swallowing is easing thanks to the liquid morphine but the down side – there has to be one, doesn’t there? – is the constipation the morphine causes. It’s been a while and I’d forgotten the agony. When I was on chemo and had to take anti-emetics I learned, after a nightmarish first round, to up my fibre intake to prevent the constipation. However, when it hurts to swallow, eating dates, dried apricots, prunes, liquorice in the necessary quantities is not so easy.
Anyway, apart from sorting out the prescription for my various medical supplies we had a good long chat – the kind of chat which helps make me feel human (like a Maggie’s Centre chat). It’s quite possibly the kind of chat which helps her check up on whether I’m showing any mental health issues which should be addressed.
Last, but not least, I’ve been offered a Covid vaccination this week – tomorrow, in fact. Last week, it was clear from the Scottish Government’s list of categories for the vaccination I wasn’t likely to get one until May – or even the autumn. When the nurse phoned last week I asked him. He was sure I must be eligible for a vaccination before long and said he’d check and get back to me. He did and had to admit I was right – there wasn’t a category which included 66-year-olds with cancer so I was more than a little surprised when someone from the health centre rang me on Saturday to offer a vaccination date. Apparently the Scottish Government sent out an email on Friday afternoon with a new priority category for vaccinations, which includes 66-year-olds with cancer. Yay!
Unfortunately, my dry January has morphed into dry February as the acid reflux still prevents me from enjoying a glass of wine. I have tried from time to time – once a day since 31st January – to have a test sip but the heartburn is instant and ferocious.
Because I always try to find something positive amongst all the horrors of cancer treatment I can report that I haven’t had to shave my legs for months.
Wednesday 27, January: Last week’s update was very late, appearing on Wednesday instead of Monday so when Monday came round it felt a bit soon to do another cancer post. And here we are at Wednesday again – perhaps this is going to be the update day for now.
There’s not much to update really. The pain on swallowing is still there – no worse than a week ago but no better. This morning when I woke I lay for a few moments before trying a tentative swallow, promptly curling into a ball at the pain. It’s so depressing. All pleasure in eating and drinking has disappeared. It hurts, whether I’m swallowing a mouthful of mashed potato or a mouthful of milkshake. Sipping or gulping – it hurts.
The ‘sunburn’ is still burning and is puffy with fluid. A friend kindly sent me gel-filled cooling pads which have been bliss to use. My skin is so hot it soon heats up the gel pad until it’s like a hot water bottle – then I swap it for the pad cooling in the fridge.
Worst of all, though, is the loss of energy. The oncologist warned me about fatigue, as did the specialist nurse in Edinburgh and the radiographers but although I expected to be tired – after all I was tired when having chemo – this is a whole different level of tiredness. This is dress, come downstairs for breakfast – need to go back to bed. This is sleep for a couple of hours, reply to two or three emails – need to go back to bed. Sleep again. I think I’m possibly awake for about six to eight hours a day.
I know – it’s one of the first things I learned since having cancer – every single person with cancer is different (even if they have the same kind of cancer) and their reaction and response to treatment is different. My friend Sue, while continuing her cancer treatment, posts on her blog several times a day – I think I’ve done really well if I manage two posts in a week – and she’s working on a mammoth editing task at the same time.
I’ve more or less abandoned attempts to finish my annual accounts, had to give up this week on Pilates and a Burns evening. I’d been so looking forward to seeing and listening to other people (on Zoom) as now my treatment is finished I see no one apart from the DH and much as I love him…
When I was first diagnosed with lung cancer I had so much energy and drive. There was much to do, to sort out and to organise before my demise and I had the energy with which to do it. Right up until I started treatment. By the second round of chemotherapy I was already jaded and faded and letting things slip. Now, after all the chemo and the radiotherapy sessions there’s a deep exhaustion. I know my throat and my burnt skin will heal – probably – but I don’t know if the tiredness will ever go away.
If not – if this is as good as it’s going to get. If the ‘extra time’ the treatment has bought me comes along with this level of no energy and tiredness – then it was dearly bought. Although, I rather enjoy the seductiveness of my bed, of slipping under the duvet – morning, afternoon or evening – and leaning back against the pillows, book in hand for a page and a half before sleep takes me.
Is it a healing sleep or is it a sign on life dribbling out?
And on a day when it would have been quite good to speak to someone involved in my care, the new specialist nurse failed to call.
Monday 11, January 2021: Back in Edinburgh for another set of six radiotherapy treatments. I’m confusing myself by starting my diary update with today’s date and writing it up retrospectively. Right now, I’m easily confused and very, very tired so I’m going to do this update – and probably others – chronologically.
Tuesday 05, January: I had my meeting with the specialist nurse after my treatment today. She went through the check list of symptoms. I admitted some solid foods were more difficult to swallow – especially bread. She checked how much of the antacid with Oxetacaine I’d been prescribed as apparently there’s a problem with supply. We chatted for a while about lockdown and how different it is when stuck in a hotel on your own in a city that’s closed than being stuck at home under lockdown. It wasn’t until I’d left the hospital I remembered the questions I’d written down and forgotten to ask.
Wednesday 06, January: There was a warm Danish pastry in my breakfast bag this morning but as soon as I took a bite I regretted it – swallowing it was so painful but I had no choice but to get it down.
After my treatment I mentioned to one of the radiographers I’d forgotten to ask some questions when I met the nurse – do I need to continue taking folic acid, when is it OK to have dental treatment and could I get clarification on the instruction about leaving one to two hours either side of the antacid with Oxetacaine before taking other medication?
No problem – we’d go and find a nurse to ask. It kind of got complicated after that!
Questions one and two would have to be put to the doctor. OK, no problem. The nurse asked some of her colleagues about the timing of other medications with the Oxetacaine – no one had heard of this. Where had I heard this? I explained it was outlined in the letters the pharmacist had put in with my bottles of medication – one for my GP and one for my community pharmacist. Finally, she asked if I would mind going back to the pharmacist to ask him to clarify things. I have a feeling she thought I’d made it up or was confused.
Before going to speak to the pharmacist I went to Maggie’s to meet a friend. I mentioned some weeks ago that someone reading my blog was prompted to have a breast lump checked out. Now, she is also attending the Cancer Centre in Edinburgh for radiotherapy. It felt really good to meet up for a coffee and a chat – it felt like bringing a little bit of normality into our lives. Of course, we talked about cancer – our own, in particular – I guess this is our normal for now.
When she went off for her treatment I spoke to the pharmacist about the Oxetacaine. He confirmed there should be the one to two hour gap for any other medications – even paracetamol. I asked if I could take a copy of the letter to GPs to the nurses who prescribe this medication without knowing about the problem of absorbency of other drugs.
One of my oncologist’s registrars phoned later, to say I don’t need to continue with folic acid and as long as my dentist is aware of my medical history and medication it’s fine to undergo dental work. Goodness knows when that can ever happen – I’m only home on Sunday for now. Just hope I don’t wake up one morning to find the tooth has completely crumbled away. I was a bit taken aback that she thought I was still on injections to prevent blood clots when it was changed to oral medication months ago. Maybe she’ll update my notes.
Covid cases and deaths increasing here and riots in the US Capitol Building. It’s been a full on day.
Thursday 07, January: For some reason my appointment was very early today – 8.30. I did make it on time, but I hadn’t had a shower or brushed my teeth. The radiologist laughed, saying: “It’s OK, we wear masks.”
I took the letter to the nurse – of course, the one I saw yesterday wasn’t there. I did feel a bit reluctant to hand over the letter to someone who probably knew nothing about the discussion so she had to hear me out while I explained and showed her the relevant part of the letter. She said: “This will be useful because we prescribe this medication to a lot of patients.” I don’t know why the information isn’t widely known – but I feel I’ve done my bit.
Swallowing is becoming increasingly painful. Solid food is difficult – who knew I’d be tempted by Pot Noodles? Slide down nicely, once cool enough.
Friday 08, January: After today’s treatment I asked the radiologist how much worse my throat was likely to get. I suppose what I wanted to know was how far away from the feeding tube am I? I just needed a bit of reassurance. She told me stronger pain relief could be prescribed if it becomes worse but not to expect it to go away as soon as the treatment is finished because the radiation carries on working for a few weeks. She suggested I went to Maggie’s instead of going straight back to the hotel. It was a good idea – just to relax and read in lovely surroundings.
Saturday 09, January: I admitted to the radiologists this morning I was beginning to lose confidence in my ability to cope with the treatment and its side effects – the throat pain, the fatigue and now some interesting little pouches of fluid appearing on my neck. They said to keep an eye on the fluid pouch, reassured me, again, stronger pain relief is available and said I should rest as much as possible. I shouldn’t feel guilty if I fall asleep whenever I sit down.
The DH brought me home, made the mushroom soup I had a fancy for and told me he had recorded Holby City, for which I managed to stay awake.
Monday 11, January: Back to where I started this post. I had a lazy Sunday before reluctantly re-packing my suitcasefor Edinburgh. Today’streatment was number 14 – only six more to go. Throat pain still manageable – take the Oxetacaine 15 minutes before eating and two paracetamol an hour later plus dozens of strong mints.
To assist my body in its attempts to recover from the onslaught of radiation I’m going to take a break from social media for a week. I’ll check in to reply to comments. This post has taken me ages to write. I hope it isn’t terribly boring.
Monday, November 16: I had a wonderful week in the hut although on the Tuesday I was more tired than I’ve been for a while. I suppose the rushing around on Monday, packing and sorting out food supplies, writing the blog – and the sudden exposure to sea air – did for me. And, maybe I was tired because of cancer and having chemo, though I tend to look for other causes first for some reason.
Tuesday, then was a day of doing not very much – that is what holidays are about, isn’t it? I rallied when the weather brightened in the afternoon and went out for a walk. In fact, there was only one day I didn’t get out. I also spent vast amounts of time sitting in the veranda, supposedly reading, but simply gazing out and the endlessly changing vista, watching the waves.
I’m back at home – no more sounds of the sea to send me to sleep. And it’s chemo week. Well, I hope it is chemo week – there’s always the uncertainty something might be wrong with the bloods and the treatment be postponed.
The uncertainty of it all is starting to get to me. If the bloods are all right, then I’ll have my fourth chemo cycle on Friday. After that I have no idea what’s happening. I should have a CT scan to see what effect the chemo has had on the tumour and lymph nodes and to check it hasn’t spread to other organs. I haven’t yet received an appointment for the scan, nor for a consultation with the oncologist.
Before radiotherapy – five days a week for four weeks – can be started – if it’s going ahead, another uncertainty – I have to have a 4d scan to have the places marked where the radiotherapy will be focussed. I have no idea when this will happen, nor how long after it the process can start.
I’m feeling totally in limbo right now. I have no idea what is going on with the tumour – is it shrinking, staying the same or growing? Spreading? Is my case being discussed at the weekly meeting? I won’t say am I being discussed because I realised to the oncology medics we are not really people, we are cases. Why does no one feel any need to let me know what they are planning next and when?
I am so very glad I had such a good break at the hut last week because if I’d been here – checking the post for appointment letters which don’t arrive – I’d have been in a far more worried state than I am now.
The last scan showed the tumour was stable – hadn’t grown and hadn’t spread. The prospect of the possibility of extra time was still being talked about. But, I don’t know of there will be extra time, nor how long it will be – neither, it seems does the oncologist so the uncertainty is all encompassing.
I have things to do, places to go and people to see. If my time is going to be very limited I’ll break all the Covid rules to which I’ve so steadfastly adhered and go ahead and get on with things I want to do while I’m still able.
I hope I will have had the toxic drugs and know a bit more about that’s next when I next write.
Monday, November 09: Each round of chemotherapy seems to bring a new addition to the range of side effects. There’s always tiredness and feeling generally horrible. Constipation. Heartburn. Not sleeping well is a regular side-effect – whether from the chemo or just because when you have a stonking great tumour in your lung you tend to be a bit anxious about what’s going to happen.
I’ve been lucky in not developing peripheral neuropathy as a side-effect and hope it stays that way – the tingling and pain in the fingers and feet sound very unpleasant. And, I haven’t lost my hair, though it has become thinner. In fact, since my last haircut I don’t think it has grown at all – may even be shrinking. At least it takes no time to dry nowadays and from what I’ve heard from others it will thicken up again once the chemo is over.
Last time I had a sore mouth. When the nurse phoned to do the pre-chemo assessment and ran through her list of possible problems, I told her. “Oh, did you use the mouthwash, we gave you? It really does help.” I admitted it hadn’t used the tub of sodium bicarbonate they’d given me to make up a mouthwash – I didn’t admit I’d used it make Irish soda bread. It’s a big tub so there’s plenty left to use as a mouthwash.
Of course, this time, I didn’t have the sore mouth – instead I had a really dry mouth with very little saliva. Fortunately, my lovely dentist had already supplied me with artificial saliva in the form of pastilles, gel and spray.
I know I had a bit of a whinge last week but looking back, the week after round two of chemo was far worse emotionally, if not physically, than round three. I’ve been thinking about this and why it might be so. I wonder if after the first chemo cycle, we’re so glad treatment has finally started and are feeling positive about its effect on the tumour. The side effects are not as bad as we feared and we feel we can cope.
By the time we go through it a second time, we’re perhaps not quite so positive. More side- effects appear which are harder to deal with and we have absolutely no idea if this toxic mix we allow to be dripped into our bodies is doing what it’s supposed to be doing. We feel crap and begin to wonder why we are putting ourselves through this hell. For me, one of the worst aspects of cancer and its treatment is the never really knowing what’s going on. The endless waiting to find out is also pretty tough. No wonder we get so bad-tempered and don’t sleep well.
I am astonished, when the side-effects wear off to find I feel perfectly well. How can this be when a malignant tumour is inside my lung, hell bent on killing me?
I think this time round – third – I kept reminding myself I would feel better after a few days. It took a bit longer this time – but I don’t think I was as bad-tempered as before – though you might have to ask the DH for his opinion on that statement.
Realising I can’t influence the action of the chemo I’m trying to block thoughts about whether the tumour is shrinking, growing or remaining stable. It’s pointless worrying about it. I said to my friends Sue and Lynn, “You can remind me of this, when I’m suffering from ‘scanxiety’ after the final dose and am waiting for the next scan results.”
We’ve had a few dry, bright days so I’ve been able to get out for walks – both along a beach and in the countryside. That’s when it feels the healing is happening.
And with only one medical appointment this week – a Vitamin B12 injection this morning – I threw clothes into black plastic bags and am now installed in a hut on Carrick shore for the rest of this week. This is why I’m so late putting up this post. I arrived here mid-afternoon full of good intentions to get cracking on the blog after a quick wander along the shore, but then was seduced by watching and listening to the tide come in, sea birds calling, the sun setting, the light fading and the stars appearing. It may not shrink the tumour, but it makes me glad to be alive and still able to savour such times.