Category: cancer

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Health Matters

Today I have to go to the hospital for the sixth and last of my six-monthly ‘infusions’, ie mini-chemo sessions. I can’t believe it’s six months since the last time, which followed a year after the previous one, because the one I should have had this time last year was cancelled due to Covid restrictions. But this time – this time – should definitely be the last – or at least, the last one related to the breast cancer which I had in 2016/17 (who can ever predict about the future?). It’s also the last of the series of medical appointments (for various conditions) which I’ve had over the last few weeks – the last that are on the calendar, anyway, given that I haven’t yet heard back about the results of the heart monitor, or had a call from the GP about my second Covid vaccination, though it’s about ten weeks since the first one. I’m expecting the surgery to call about that, as they did with the first one, given that it’s supposed to be done within twelve weeks, but other people I’ve spoken to (though not with my GP) have either booked both appointments online, or were given the second appointment when they had their first.

I had a phone consultation with the doctor on Thursday, about my cholesterol, and the blood test I had for that, and she said that it’s still a lot better compared with what it was when they first flagged it up in late 2019, and to carry on with the current pills at the current dosage, but I should try to get more cardio-type exercise, which needs to be more strenuous than just more walking. A least she didn’t tell me I had to give up cheese, though I have been trying to cut down. She didn’t know anything about the heart monitor, in fact she wasn’t the same doctor who sent me for it, but when I made the appointment I was told it would be a long wait for an appointment with the other one. In fact I only had this consultation because when I rang the surgery to book a blood test in advance of today’s infusion (to save an extra trip to the hospital), the receptionist told me there was a note on my file to say that I needed to book a consultation with the doctor. In the event she (the doctor) was clearly just looking at my records and giving out some fairly general advice, but I don’t say that as a criticism. I have met her several times when I used to live in the flat, and always got on well with her, it’s just that she’s not the one I’ve been seeing about this cholesterol/heart stuff.

It is all quite confusing, but I guess if the blood tests had shown anything serious, they would have been more proactive in getting in touch. In fact they seem to have got things pretty well organised in the circumstances.

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The Long Way Back

Yesterday was the anniversary of one of my most vividly-remembered days described in ‘Single to Sirkeci’, when I arrived at Port Camargue. Earlier in the week I was remembering Prague, and it all set me thinking about ‘The Long Way Back’, and whether I’m ever going to finish it. I’ve been thinking about it for years – or, more accurately, I’ve been avoiding thinking about it. At first I used to start each year with the resolution that: ‘this is the year I’ll finish and publish it!’, but gradually I got over that, and recently I have been trying to learn to let it go, along with all my other failures.

I spent about six months, from autumn 2017 to spring 2018, trying to make something of it. It started with the ‘rump’ of around forty thousand words describing the return half of the journey from Istanbul back to England, which I’d chopped from the sixth draft of ‘Single to Sirkeci’. Prior to deciding to split the manuscript, I’d spent a couple of years on the herculean task of trying to edit the 200k word first draft down by half, and after brushing off multiple suggestions of chopping it into two books, and stalling at 140k, I gave in to the inevitable.

When I published ‘S2S’ in early 2017, the plan for ‘The Long Way Back’ was to combine the material I had on the return journey with a briefer description of what had happened after my return; my time in Prague; my moving to Southsea; and some reflections on lessons learned from the ‘life journey’ (if I could think of any) – I even wrote an introduction and blurb to that effect, which I must dig out some time when I need a good laugh at the ironies of over-ambition.

Giving myself six months to deal with cancer and chemo, I started in September 2017 to go through blog posts from the time between returning ‘home’ at the start of August 2012, and departing for Prague in May 2013. Rather than the planned précis, I found myself editing a tale of disappointment, depression and yearning, as I struggled to come to terms with life – while, in the present, also struggling to come to terms with moving on from cancer. This resulted in a further fourteen thousand words to add to the forty, and I hadn’t even started on Prague – which, when I went back to it, was also a saga of depression and disappointment, although alleviated in places just by the fact of being in Prague. Then there was the year after, living back with my ex (working title: ‘Madwoman in the Attic’), mystery illness, moving to Southsea – and then what?

For a while I toyed with the idea of turning Prague into a third volume, and spent some time trying to find three–syllable words starting with either ‘B’ or ‘R’ to make a catchy title: ‘Bohemian Something-or-other’ but with no luck.

Then I just stopped. I just stopped writing.

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Boring, Boring, Boring

Yesterday I experienced something I haven’t been aware of in a long time: boredom. I finished bringing my financial spreadsheet up to date, but didn’t feel as satisfied as I expected. The afternoon plays on Radio 4 and 4 Extra respectively were: the first episode of a three-part adaptation of ‘Tess of the Durbervilles’ (well done, but hard to avoid the sense of impending doom) and a thirty-year-old drama about a divorced sixty-something woman with breast cancer who is reunited with an old admirer, has a mastectomy and moves to Australia (either breast cancer treatment has improved a lot since the early 1990s, or the writer didn’t have much idea of what he was writing about – no chemo or radiotherapy, just straight to the knife).

Ironically, I also listened to a programme on boredom, but I didn’t take much of it in.

I’m getting bored with the jumper I’ve been knitting, the one I pulled down because it didn’t fit, and I haven’t quite caught up to where it was before. I’m not looking forward to doing the sleeves, which are going to be fiddly, but I want to get it done so I can wear it at least once before the weather gets too warm. If current trends continue, it may be even smaller by next winter (think about it).

Which reminds me, on this morning’s weather forecast they said that it will get a lot warmer, maybe as high as 17o  this week, which would be white and green within a week!

I saw a picture on a Facebook crochet group last week of a blanket with an amazing spiral pattern. There was no pattern attached, and I couldn’t work out from the photo how it was done, so I Googled it, and found a simple technique for making a four-colour spiral – not quite the same, but still interesting. I made a start with four colours of cotton yarn leftover from last year’s weather blanket (I have changed to using a different, lighter yarn this year), and it’s given me the spark of an idea.

I also saw a cartoon on Facebook yesterday titled something like: ‘The Mind/Body problem’, showing a man sitting on a sofa, with a thought bubble coming from his head saying ‘Get up!’ and one from his body saying ‘Nope!’ or words to that effect – exactly summing up my mood, but I can’t remember where it came from.

But for this morning I have some editing – which will be interesting and, being a commission for someone else, takes priority over housework, decluttering, study-tidying or any of those other multitudes of Jobs That Needs Doing.

I keep thinking of things I could do, hobbies that I could take up or restart, projects that I would enjoy getting stuck into, most of which I already have the materials and equipment for, or could easily get hold of online. Books to read, jigsaws to do, projects to complete, all at my fingertips, but can I be bothered?

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Decisions

She isn’t dead! I knew it! Well, I kept hoping – I’ll admit, I was starting to question my intuition, pretty well given up in fact, then I started the next chapter and – there she was! Only I ran out of time (it was time to get up) so I don’t know yet how she managed to get out of the car wreck (though I know who she’s with now) and she’s clearly been out of it for the last few chapters and only just regained consciousness, because everyone’s been assuming she was dead (whose was the body they dragged out of her car, then?) but that’s something to look forward to, this evening, or tomorrow morning, or maybe I’ll have a crafty read some time today…

Sorry, got a bit carried away there. I told you I was reading a good book. I love it when it grabs you like that – that’s the joy of reading.

Well, yesterday both Portsmouth and Bedford went into Tier 3 Covid restrictions. Which means… well, over Christmas (23rd-27th) the special rules are still in place, so I can legally go. But I’d made a pact with Fate, or the Universe (as I often do when I’m forced to make a decision) that if any of us went into Tier 3, I’d hunker down and spend Christmas here, just me and the cat.

So, decision made, I texted my daughter to tell her I wasn’t coming, then talked it over with my therapist in our weekly Skype session. It was a relief, really, I told her, and myself, because the decision was taken out of my hands. My main worry was how my daughter would react, but I’d decided. At least I’d got rid of that stress over packing etc, and driving.

‘…the stress which you would have anyway, whatever you do…’ she pointed out. Hmm, yes, she knows me too well – that’s her job after all.

After the session, I wrote the family Christmas cards – with a little note in my granddaughter’s saying ‘…sorry I can’t be with you…’ walked to the post office and popped them in the box. Looked (in vain) in Tesco and the Co-op on the way home for anything nice for my Christmas dinner. Bought a small poinsettia and tiny tree in the florist.

Four Christmases ago, when I was waiting for the results of the biopsy, people asked me why I was going away when I might be called back to hospital at any time? And I thought then: ‘this might be my last Christmas, why would I want to spend it on my own?’

In the evening my daughter texted again, and then rang and said she’d spoken to her brother, and even though it’s my choice, they’re prepared to come and get me and bring me home so I don’t have to drive, and even her Dad said: ‘…she’ll regret it if she doesn’t…’

So the decision changes again. But this time it feels right.

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The Lottery

Yesterday afternoon was my weekly Skype therapy session, and, not knowing what to talk about, I told the therapist about the stress and worry over the test appointments earlier this week.

‘It seems you’re worrying about the processes and administration more than what it’s all about, which is the opposite of what most people would do’ she said.

By ‘what it’s all about’, of course, she meant cancer – but honestly, what’s that to worry about? If that sounds flippant, we’re not talking here about any particular risk. The infusion I’m going for on Saturday (tests permitting, and I’m still waiting for the result) isn’t even directly related to cancer, but to reducing the risk of side effects from the medication I’m taking to reduce the risk of the cancer coming back/happening again. And whether at some point I’ll get cancer again, or osteoporosis, or both or neither is not something I think about on a daily basis – although I do, of course, keep taking the prescribed tablets and a calcium supplement. That’s part of my routine. And going for the infusion, although uncomfortable and annoying, is also routine – this is the fifth time I’ve done it, and that followed after six sessions of chemo, which were much nastier and lasted longer but were basically the same process, in the same ward at the same hospital. So I know what I’m doing, I just have to turn up at the usual place for 10:30 on Saturday, with my Kindle to read while I’m waiting (there’s always lots of waiting) and after that it’s out of my hands.

This harks back to something I’ve said before: that getting through cancer (in my experience) is not about being ‘brave’ or emotionally strong or staying positive, it’s about doing what you’re told, turning up for the treatments, taking the meds, trusting in the expertise of the medical staff, accepting any help that’s offered. In the end, it’s a lottery, but you can buy as many tickets as you can lay your hands on to improve your chances of getting through. Even so, you could be knocked down by a car any day on your way to the local shop, so why torture yourself by worrying about death when there are so many other ways to do it?

The therapist’s response was to say: ‘There are two types of people in the world…’ and I thought she was going to say something profound, but instead it was just: ‘…those who blame themselves for everything that goes wrong and those who never blame themselves, and we know which you are,’ which we’ve talked about so many times, and didn’t seem terribly relevant or helpful in this context. I was thinking more of Chekov: ‘Any idiot can face a crisis; it’s this day-to-day living that wears you out’, which was sent to me on a card years ago by a friend who never saw her fiftieth birthday because she died of breast cancer six months before.

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State of Alert

I seem to have been dreaming much more vividly the last few nights – vividly to remember them when I woke up, but not now. And in the shower I was thinking about thinking – the constant, ‘stream of consciousness thinking’, the ‘catastrophic’ thinking as someone recently called it, though it’s not always dark, it’s where everything comes from, including all my writing, especially poetry. But no poetry today. And I think I’ll just write about what happened yesterday.

I mentioned on Tuesday that I had to get blood tests (which is normal) and a Covid test prior (within 72 hours for the latter) to my 6-monthly infusion on Saturday. I rang up both the relevant hospital departments and got the Covid for 14:05 yesterday and the bloods for 13:45. The lady in haematology told me sternly: ‘don’t come in more than 5 minutes before your appointment!’ Then on Wednesday afternoon I got an automatic text from a 5-digit number asking me to rate my ‘recent experience of our outpatients department’. This threw me. I ignored it, but started to wonder whether it had been triggered by my appointment – maybe they’d made it for Wednesday and not Thursday? It wasn’t worth the trauma of trying to call the hospital back (which is a nightmare for anyone, not just a phone-phobic like me) so I decided to leave it and turn up anyway.

Because my time management is so poor, I have a habit of allowing too much time to get to appointments, and arriving far too early, to make up for all those times when the reverse has happened. Plus I wasn’t at all convinced that 20 minutes between appointments would give me enough time. I knew where I had to go for the blood test, and where it was in relation to the car park, but not for the Covid, except that it was on the same site – I’d just been told: ‘turn left into Nightingale Rd, follow it round and you’ll see it on you left.’ I knew where Nightingale Rd was, but I didn’t know how long I would have to follow it round for.

Too many times I’ve set off with great confidence for somewhere, assuming that I’ve understood the directions, and got horribly lost. As it happened, that wasn’t the way it worked out yesterday – also the blood people were expecting me and saw me when I arrived at 13:40 and all was well. But it so easily could have not been.

This is the ocean in which my thoughts swim – in a constant state of alert. Stress was worrying away at me all Wednesday evening and yesterday morning – the poem I posted was a reaction to trying to deal with it. In situations like that, I try to think of the worst case, and really all it meant was that I’d have to make another appointment for the blood tests, either today or tomorrow.

It worked out – but there’s no guarantee that the next time will.

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Another Monday

Yesterday I had a horrible day. I spent most of it crocheting, but for once it didn’t make me feel happy, just guilty because I knew I was just doing it to fill the time and avoid all the more important things I probably should be doing to sort out the house. Also I had some phone calls to make, which I always dread (I did one, to the vet, but not another, to cancel something which is costing me money and I need to stop it). And I was expecting a ‘phone consultation’ with the breast cancer nurse, about my next 6 monthly infusion at the hospital. The one in April was cancelled, and if that had gone ahead this should be the last one, but I asked her and apparently it’s based on number (six times), not time (three years), so I’ll have to have another one next spring as well. Anyway, this one is on Saturday, and I knew about it because I’ve had the appointment letter since April.

I always have to get blood tests beforehand, and usually there’s a walk-in service at the hospital. But what I hadn’t realised until I spoke to the nurse is that now I have to make an appointment. Also she asked if I’d arranged a covid test, but I knew nothing about it being required. She said it should have been mentioned in the letter, and I wondered if it had been, because I hadn’t reread it, but when I said the letter came in April she said ‘well it wouldn’t have been then’ in that sort of fussy way that some people have that makes everything sound as though it’s your fault and you should have known. She’s not the same nurse I met when I was having the original treatment in 2017, and I didn’t recognise her name, but I know the drill now, or thought I did, till this year. She gave me a number to call to book a test at the hospital for Wednesday, and also suggested I call the blood-test centre and get the appointment there close to the same time, so I wouldn’t have to make two trips to the hospital. So I made those two phone calls and got both tests sorted for tomorrow.

If you’re thinking either: ‘That doesn’t sound too bad’ or ‘Poor you, that sounds horrible’, I should say that my bad mood was not related to having to make these extra appointments (though they didn’t help), but I’d been feeling it all morning as well. So much so that I was trying to find excuses to get out of going to yoga in the evening, but I made myself do it, and felt much better for doing so, which I knew I would, but still… It did help, and now I’ve made a commitment with the teacher that I will definitely go next week and she has put me on the list, so I can’t back out.

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Aspiration and Achievement

Woke up with odd fragments from a dream in my head this morning. I was standing on steps leading up, and there was water below me. The woman in front pointed out I was still holding my phone so I tried to throw it back to the ground, but it fell in the water. I asked her (it might have been my daughter) if she could dive, and she dived straight into the pool and got it for me. Now, those steps must have been to a diving board or a water slide, so why was I on them when I’m terrified of both those things? Then later I was on similar steps going up a hillside but they ran out and I had to go the rest of the way just on the hill itself.

Returning to my therapy session, the therapist asked what she called ‘the death question’ – if you knew you were facing death what would your reaction be? I wasn’t entirely sure what she meant but I had an answer – two, in fact. When I had cancer in 2017 I decided that the best thing to do was focus on doing the little things that made me happy each day – like: listening to the radio, knitting and crochet, reading etc – more or less the same things I’ve been doing for the last three months.

Then I remembered the feelings I had at the end of 2011, when everything significant in my life seemed to have fallen apart or be falling apart. There was a lot of nonsense around about the Mayan prophecies and the end of the world, and though I didn’t take it seriously, I thought: what would I do if I knew the world was going to end next year? And that gave me the impetus to go travelling.

These two things might seem quite different: focussing on the everyday versus making a huge leap into the unknown – but in the details they were very similar. The happiest memories I have of my travels are of those little everyday moments: sitting in cafes; looking through train windows; finding my way around unfamiliar places; walking through parks; reading my Kindle or writing on my laptop; su doku. Doing and going where I wanted, not having to deal with other people or think about their needs or what I ‘should’ be doing; being free; being myself.

Why does my mind keep being drawn back to those big gaps in my life: career, relationship, financial self-sufficiency, writing? I can’t rectify the first three now, it’s too late, I have tried to accept them and be glad that I can cope so well without them. The last one is the one that still nags at me.

There are two ways of dealing with that gap between aspiration and achievement: lower expectations and/or take steps to get closer to the goal. I am a past master of lowering expectations, but not so good at finding ways of making progress.

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May Day

Today’s memory is from a year and a day after the previous one (a lot can happen in that time – in fairy tales, at any rate).

On the beach at sunrise with a smallish group of friends and friends-of-friends, one of them a Pagan celebrant who led us in a ceremony of welcome to the sun on May Day morning. I remember chanting, facing in the four directions (towards the sea, the land, the sun and… towards the pier? -it’s all I can think of in that direction!) There was also singing, djembe banging, some mandolin playing, probably dancing and definitely consumption of brandy supplied by her partner (not something I normally do at six in the morning, not even on May Day!) And breakfast in the Beach Café.

Thinking back, I realise I hardly ever see that group of people any more. When the world passed around the sun again, I had entered the year of my own personal self-isolation, of chemo and surgery and radiotherapy, and when I emerged from that into 2018, it seemed as though everyone’s life had changed, not just mine, the dance had shifted, we had all taken up new positions and our paths no longer intersected – except sometimes on Facebook, repository of friendships and social medium of choice for my generation.

That wasn’t the only memorable thing that happened that May Day, however. When I got home to the flat, I had an email from my ex husband, saying that he’d received and provisionally accepted an offer on the old family home; obviously my formal agreement was needed, but that was hardly in doubt. The beginning of the real end of that chapter of my life, a summer of driving up and down between here and there, clearing out everything, including the attic where so much of my past had accumulated; helping him initially to move into his new place in Bedford (and in the interim our son and his fiancée from their tiny studio flat in Guildford to a two-storey maisonette), and finally, in October, moving into this house, with one van of stuff transported professionally from the flat, and another trip for me up to Bedford, another rented van loaded and driven down by my daughter’s partner, another drive back southwards in my Micra with another terrified cat in a basket on the passenger seat.

If I’d known on that spring morning that it would be almost another six months before I was finally settled in my own home… well, I don’t know what I would have done. But it happened, all the dusty accumulation of the past, the physical stuff and the emotional clutter which had haunted me, all moved, all resolved, and here I was.

Maybe the stress of that year contributed to my body’s next bombshell – who knows? But I got through that too. And here I stand, and every day, whether May Day or any one of 365 others, the future still knocks on my door.