And the cancer circus fun goes on and on…

And so an update on this evil, awful, bastard of a year: the cancer treatment is still ongoing, months later, which is, as you can imagine, incredibly depressing and demoralising. Back towards the end of July I had the last of the seriously awful, three hour IV chemotherapy sessions, where basically poison is pumped through your body, making your feel dreadful, buggering up healthy cells as well as the cancerous ones (it’s a blunderbuss weapon compared to a sniper rifle), ruining your immune system, white blood cell count and attacking your nervous system. It is also cumulative, so each session felt worse than the preceding one, and the recovery time took longer. So I am very glad to get that bit done.

It was a combination therapy of those long IV poisoning torture sessions and two weeks of highly toxic pills (eight a day), so nasty you are told not to touch them, pop them from the blister right into a cup then swallow. So they are so bad you shouldn’t touch them, but you are to ingest them… Yes, welcome to cancer care, where all the medicine is a fucking poison…

After the last IV session I had two more weeks on the pills, then an appointment with the oncologist after that in early August, so I fairly naturally assumed that was going to be the “it’s all done meeting”. Was it hell. Nope, she said she thought I needed further treatment to be sure. Quite demoralising, as you may imagine, when you think after eight months (since being sent for scans to diagnosis to surgery to recovery enough to then undergo brutal chemo) thank god it is done… And it isn’t. Thought perhaps another couple of weeks, oh no, four more sessions they said, each being two weeks of pills and a week to recover then repeat. Which takes me to the end of October. Oh, and the pills now go up to ten a day.

Brutalist Care
(the weird, Brutalist-inspired architecture of the cancer centre at the Western General)

So that took what little wind was in my sails off to the land of nothing good. Frankly it left me so bloody miserable that what I thought was over wasn’t even nearly over. I was in today for yet another poison session, and this time they upped the bloody meds to now twelve a day, ye gods. Because I have recovered some of the weight loss during the cancer and surgery time when I struggled to eat, and of course meds are often calculated according to size, mass etc. I understand that, but it’s still bloody depressing, not just to still be on these, but now on even more.

The thing is, back in August the oncologist, just to make me feel even happier about all this, told me they wanted me to do more on the pills but have to be careful as they will eventually cause irreperable, permanent damage to my body. Swell – stop now and hope it is all gone and not going to come back, or take months more of the toxic pills and hope it doesn’t destroy the healthy parts of your body. What sort of choice is that for anyone to have to make??? So today when they upped the level of these damaging drugs, I was understandably upset and concerned, so the specialist talked to me for a while.

Brutalist Care 2

End of the day, what bloody choice do I have but to continue with this horrible, toxic regime? But I am long since past the end of my fucking tether, frankly. I’ve had enough, more than enough, of this miserable time, and I still have weeks more of it to endure, now at an even higher level of dosage. If the oncologist in November tells me anything other than it’s all fine and done, they will hear me screaming in every fucking parellel dimension. I’ve gotten so tired of it all now I don’t even keep up hope or faith that it will be finished then or not.

And frankly, even if it finally is done this time, I can’t imagine any sense of relief, just weary resignation, because bastard cancer is never, ever really over. You will worry the rest of your life about it coming back. Every time you feel odd, or ill, you will worry it is the cancer cells returning, destroying you from within. Yes, they will scan me regularly for just that sort of thing, I know (the level of care has been incredible, bless our NHS and its staff), but still, no sense of rejoicing, just a tired appreciation that the treatment is done for now, but always wondering at the back of your mind what if it comes back?

Very, very, very tired; that’s going to be pretty much a full year of this now, and I’m worn down by it all.

It’s been a while

It’s been months since I last posted here; sad to say the blog was just one part of my normal life I slowly withdrew from over the weeks and months – even my own bookgroup I set up years ago and other regular activities just slowly stopped, I had neither the energy or desire to take part in them or anything else. It was a bad several months ending an awful year, frankly, and left me emotionally exhausted. Lost a couple of friends, lost the second of my lovely furry companions, my darling old kitty Cassie (leaving the flat feeling terribly empty) and there was the constant worry as we waited for a date for dad’s much needed heart surgery. And when that finally came in mid November it didn’t go as smoothly as planned, not by a long shot. A five hour or so operation, delicate, complex but still relatively routine for the specialist cardiac surgeons, two or three days in the ICU (Intensive Care Unit), couple of weeks in the general ward then home to recuperate over a few months as you build up your strength again.

That is how it normally goes, but there’s always the one in so many thousand where it doesn’t work so well. And after all our stress and strain over the last year and worrying and hospital visits and waiting for surgery and fretting about it didn’t we get the short straw, just because obviously it hadn’t been a hard enough time already. More work was needed and my dad was out for a full week before I got to see him so much as barely open an eye, a week of travelling hours back and forth to the other side of the country to the specialist hospital and worrying and waiting before I even got to see him slightly awake. Weeks more before I heard my dad speak to me for the first time in weeks. What would have been mum’s birthday came and went, never an easy emotional time for either of us at any time, under these circumstances that date took a sledgehammer to the morale and had a bad effect on dad too.

We soldiered on, Christmas, New Year and my birthday on Hogmanay came and went and were depressing, sad, empty non events, dad still very ill and in intensive care after weeks of care, me pretty much on my own. A friend was kind enough to give me a lift through on Christmas Day so I could visit him, relatives visiting him dropped me off at the family home where I spent a miserable five or six hours on my own in an empty house waiting on my return lift back with my friend. I’ve never been in our family home alone at Christmas, it was terribly upsetting and with everything else going on it pitched me further into a very dark place. Thank goodness for calls from others like my wider family to cheer me up as I sat at home alone. Oh, wait, no there wasn’t a single bloody call. Not a one. Just because Christmas Day hadn’t been miserable and lonely enough already. And the dark thoughts swarmed around – get used to it, this is probably how Christmas will be when you are older. That time of year can be hard for a lot of folk and this time it really broke me; a similarly miserable birthday and New Year added to it. Really felt like giving up, but had to keep going.

Eventually by mid January my dad was well enough (barely) to go home and fortunately as I work mostly online I could take my laptop and work from back home – not ideal but do-able on a short term, so I moved back home to Smallsville for the best part of a month, worked as best I could trying to do a full work day from home while helping dad as best I could, doing the housework, cooking, shopping, talking to health folks, arguing with one particular batch of bloody idiots who demanded he come in for regular tests when he could barely make it down the stairs. Was pretty bloody tired out by all of this, but worth it as dad improved hugely, from being very tired and unable to do much to being able to do more, do stuff for himself, get around, got his appetite back and as his strength returned his morale got so much better, it was good to see after the long, long bloody road we had to stagger down. Could have used a good long break after all those months, especially as I had no real holiday for the last year – I had one week off for the Film Fest in June as usual but on the first day dad was taken into hospital with his heart attack, so that wasn’t much of a break as I was back and forth to hospital (still got to see a few of the films but my heart wasn’t in it) and I saved most of my remaining holiday days for when the surgery happened knowing I’d need them, but with the much longer stay I used up far more than I thought I would.

Back home in Edinburgh and slowly trying to get myself back into my regular life – months have gone past since I last went to my own book group so I’m planning to get back starting with this month’s upcoming meeting, and go and enjoy the regular Edinburgh Literary Salon, already been back to my first event at the Tales of One City readings, felt nice to get back to going to functions and events and talks again, even got friend who has similarly been running back and forth from Edinburgh to Glasgow to help with ill relatives out for her birthday (took her to the new patisserie on the Bridges for a treat, delicious, then a nice wander round the galleries too). Hopefully we continue on the upward curve this year, I think we bloody deserve it. May even start thinking about visiting the cat rescue folk at some point and see about taking in some new kitties. Let’s see …

What happened?

I know I haven’t posted for a while, folks, but I’m afraid my world has been turned upside down and pulled inside out and I feel like my heart has been too. I went to bed on Sunday 30th of March content after a pleasant late afternoon chatting to friends over drinks in my favoured haunt of the Caley Sample Room. And in the small, dark hours of the following morning a phone call, a sinking feeling because no-one phones at 3am for good news. Stagger out of bed, grab phone, it’s my dad. It’s my dad more disraught than I’ve ever known him and through tears he’s telling me we just lost my mum. I don’t understand what’s going on – I’m half asleep, mum wasn’t in the pink but nothing serious that we knew of, what’s going on, what does he mean. I’m still in shock shortly after as my cousin and uncle arrive to take me home to Glasgow, driving through the dark and I’m praying please let this be a bad dream, please let me wake up, please let me wake up, please let me wake up. It wasn’t. We just buried my beautiful, warm, loving mother a couple of days ago and I feel like someone’s ripped a chunk of my soul out.

I came home to Edinburgh today for the first time in over a week and when I checked my emails there was one from my mum, sent on that Sunday, which I hadn’t seen because I had been out all day and because I never checked the following day because I was sitting back in Glasgow in shock with my dad wondering how this had happened to us so shockingly suddenly and why was it happening to us. She just got online a few weeks ago and was so proud about emailing the relatives in Canada and elsewhere. It was just one, short line, asking how I was and telling me her and dad had just booked their summer holidays – in fact there are two new cases they bought on Saturday lying unused in my room back home. It finishes ‘see you Wednesday’ – they were coming through to visit their wee boy and drop off his Easter egg. I didn’t get to see her. Instead I saw her in the hospital and the spark that made her my mum was gone from her. And its not bloody fair, she was 61, her and dad retired only a year and I want to scream at the world for taking her from us. I wanted her to get up so badly, I touched her beautiful red hair and kissed her and she didn’t get up and we had to leave her in that cold place. It feels like we’ve lived a year in the last nine or ten days, so damned hard and more than anything I need a cuddle from my mum and I can’t have it and that’s breaking my heart. I can’t write anymore just now, its too raw and everytime I think I’m getting a grip something else will set me off again, I feel like my heart’s made of glass. I wanted to write, to let some of it out but its just too hard right now.