My Dad is dying, part two

 Just as cheery as part one. 

So. He’s back in the UK. He’s really not well - barely eating, dozing off constantly, zero energy. It’s all looking very much like it’s only going one way. 

Thank fuck for the NHS. What follows is essentially a lot of tests here too. I spoke to one of the doctors here who asked for a summary of his discharge notes from Florida. 

152 pages, most of which were blood tests. But I managed to find the biopsy summary, which said ‘poorly differentiated adenocarcinoma with neuroendocrine features’ and his lungs were described as ‘fucked’ (I’m paraphrasing). Heart ‘critical aortic stenosis’ and ‘severe calcification in the aortic valve’. The doctor also asked if the American hospital could send the actual pathology slides from his biopsy over (this never happened, so they had to do another biopsy here. He collapsed on the way out and had to spend a night in hospital).

I know they say never google, but I find facts in a crisis helpful. (As the wonderful Max from the Chronicles of St Mary’s says ‘Always deal with the now’. Useful advice and facts help me know what the now is.) I didn’t know before, but as well as stages of cancer there are also grades, 1-4. They don’t necessarily correlate, but what they were describing was grade 3 (where 4 is baaaaaad) and likely to metastasise, if it hadn’t already. 

We are now at three days before Christmas. I’m NOT going to absolutely piss all over everyone else’s Christmas by going ‘you know this could be his last one right? You do realise how bad this looks?’ Both my parents are convinced that with modern medicine these days he’s going to get better. I cannot be the person to take that away, especially when I don’t actually know. So I sit with it by myself. Fortunately my ex-nurse friend (let’s call her Anuschka, for that is her name) is a brilliant person to talk to. And I do talk to my husband. But we’re all so much in the dark. 

Because mum thinks everything is fine, she is suggesting we don’t see him until NYD. Wtf? I negotiate her to 27th Dec. 

29th December they see a doctor who is ‘confident’ that due to the placement of the tumour they can operate (it’s low down on the right hand side, so essentially they can just lop it off). Then they can look at the heart stuff. Huh? How did the American hospital get it so wrong?? Eh?

I mean, you’ve seen the title of this post. Bit late for a spoiler alert. 

Mum has cancelled the carer we had coming in three times a week because his appetite is back and he can move from stairs to sofa (with a walker), can shower solo. They’re doing a PET scan to look for spread. 

12th Jan. I couldn’t attend the results appointment with them and you’ll be amazed to hear my mum couldn’t record it on her phone (I don’t have an app that records! YES YOU DO). At this point they don’t think the tumour is urgent, will run some more tests including more cardio assessment to look at that, and the PET scan says no spread. I was convinced they were going to find secondaries. 

7 Feb. Biopsy had to be rescheduled due to a small tear in his lung (no idea where that came from) and dad has his third? UTI. As said above, he had to spend one night in hospital after a ‘reaction’ to the biopsy but was discharged the next day. 

Meanwhile I had a GP appointment for some stomach issues I’ve been having (poss gastroparesis? ) and why yes, the doctor did say it was probably stress related. ‘Anything stressful in your life right now?’

‘Well my dad has lung cancer.’

‘Right. Yes. And what do you do for a job?’

‘I’m a counsellor.’

‘Ah’

Ah indeed. Weirdly working helps, as I can spend 50 minutes in someone else’s world. 

16 Feb. I join my parents for a hospital appointment at the respiratory clinic. They are getting a second opinion on his biopsy as it’s ‘unusual’. Maybe because he’s never smoked a cigarette in his life?? He’s currently not well enough for chemo or for a heart operation, so the plan is a month of radiotherapy on his lung to reduce/slow it down. Oncology will take over from here. They are thinking his breathing issues are more heart-related than lung-related. The doctor mentions ‘options’ and ‘quality of life’ so I’m wondering (to myself, of course) if they are gently trying to prepare us. I notice how forgetful and repetitive dad is during this appointment. 

Which reminds me - he had maybe two small strokes when he was in hospital in Florida? Just to add to the fun. 

In a ‘this would be thrown out of a script for being far too obvious’ moment, while we were waiting to go in my parents were discussing their older dog (obviously they have a puppy too because that’s what you need right now) who has this growth on his leg. It could be cancer. If it is, then they’re not going to give him chemo because they don’t want to put him through that, and quality of life is more important than quantity. Me (to myself): the subtext is just MASSIVE FUCKING TEXT here…

Cue more tests to get an accurate assessment of the tumour and ‘in the next month’ and ‘we just need to check one more thing’ and nothing is happening until…

/end part two

My Dad is dying, part one

 Yep. Exactly as it says on the tin. 

A summary:

For some time now my dad has had a bit of a catalogue of issues. Primarily polycythemia vera (too many red blood cells is my layperson’s understanding), gout, I’m sure I was told he has COPD (but my mum says not, so who knows where I got that from - his breathing is fucked, basically), vertigo, a leaky heart valve and probably a couple of others that I’m not aware of/have forgotten. 

This normally presented as him getting tired quite quickly and not being able to walk very far. He got a blue parking badge three years ago (renewing it was fun - I am positive the system is designed to make people give up, but that’s a separate rant). 

In November 2022 they were in Florida (they have a house there). As they’d go for three months at a time, I’d speak to them on FaceTime once or twice a week. They’d just been on a cruise for a week so I hadn’t spoken to them for ten days or so. My brother messaged me saying ‘FaceTime dad please and moan at him to go and see a doctor. He looks like crap. I’ve told him, mum’s told him…’. I was at work, and then they weren’t answering, so I couldn’t get through until the evening. He did indeed look crap, but just kept saying he needed to lie down until he felt better (this was his usual coping mechanism and usually he was indeed better the following day). Essentially I had to shout and then cry to get him to go and he agreed to go to the local A&E. 

He was an inpatient for I think 11 days. This being America, they ran an absolute barrage of tests. Meanwhile we were wondering if we should go out, when, would it help mum or not, etc etc. They discovered he had another leaking heart valve and said they would operate the following week and he was told ‘you’ll be like a new man’. Yay! My friend who used to be a nurse said to me that they wouldn’t operate if they didn’t think he was a good candidate for it for fear of litigation. Heart surgery is relatively straightforward these days. All looked well. (‘Well’ = ‘fucking terrifying’, but positive steps in the right direction. We couldn’t FaceTime when he was asleep (which was fairly often) and mum didn’t want to step out of the room to speak to us in case she missed the doctor(s), so all communication was via WhatsApp, which was fine but obviously slowed things down/hampered clarity a little. 

Then one of the tests showed a tumour on his lung and the hospital was basically like ‘What shall we do about it? You might want to think about a biopsy’ Mum: well obviously can you do that please? So they biopsied it and boom, it’s lung cancer. Not only that but they’re discharging him and saying he’s ok to fly home, pick it all up with your doctors there, but they have said they can no longer operate because he’s fit to fly. WTAF? What happened to making him into a new man etc etc?

So he was sent home (to their house in Florida) with these rechargeable oxygen tanks. Meanwhile we’re looking into stairlifts and ramps etc etc. He’s incontinent, barely eating and as a result they wouldn’t let him on their scheduled flight (we’re now at 11 December). This meant having to get a Fit To Fly certificate from a quack doctor and they flew home 24 hours later. 

They came home to no heating because their not-to-code wiring in the house had shorted the boiler. Plus a wasp infestation which was extra fun because my mum is genuinely deadly allergic. But the stairlift was in (note: you think it’ll be a bit like a fun ride but actually they are INCREDIBLY slow) and he had a GP appointment for the same afternoon. We all went. GP obviously prioritised the cancer referral but also made one for the heart issues. Dad had an indwelling catheter which was causing him immense discomfort - cue next stop A&E here (after a return visit back home for a code brown). Doctors here said he should never have flown with it. Marvellous. 

/end part one

Unstoppable Feb

 I think I’m just going to put everything into one post. 

The programme is 28 days of workouts under 28 minutes, but as much as I love PJ I don’t think I’ll be doing one of her workouts every single day. It’s a bit much. 

Day 1 - Bosu balance workout, not PJ. I like this one because it’s short AF (17 minutes) but I work up a sweat and it’s working on all sorts of good balance stuff. Not a PJ workout.

Day 2 - Upper body. One of PJ’s but from a few days ahead (shhh). Also walked with my colleague at lunch. 

Day 3 - Reflecting on the general advice that if you want to improve at something, do it more, I’m going to try and run twice a week, Tuesdays with Kate and Fridays intervals. I’m (as ever) not hugely fussed about speed/distance stuff, but I would like it to feel less like I’m dying while I’m doing it. 

I had a pre-programmed intervals plan on my watch (from lockdown days! But if it ain’t broke…). However I couldn’t feel my watch buzzing for the changes so I had to keep looking at the times, which as we know is soul-destroying. I  think I’ll slightly increase the warm up to eight minutes to get over the slight incline on the way out of the village, and add in another repeat. Plus maximise the buzzing. 

Day 4 - no equipment leg day. I have a bugbear about no equipment workouts, in that if you are larger then it’s just too much weight/significantly more than dumbbells. I’ve already forgotten but I think this one was ok….! I took it slow because I’d given blood the day previously. 

Day 5 - swim! Air temp 0 degrees, water temp 4.1. Seventh sub-10 swim and second sub-5 - makes such a huge difference with the air temp not being -8 though. No after drop, I swam to the first buoy and back (so slightly more than last time), absolutely buzzing afterwards. Also went for a short walk with the kids after lunch. So lovely to see a bit of sunshine and the beginnings of spring buds. 

Day 6 - Bosu metcon workout. Somehow I didn’t press start on my watch <eye roll>. Also did a therapeutic walk with a client at lunch. 

Day 7 - indoor cardio workout. It would normally be a run day but it’s -2 out and I don’t want to go arse over tit. 

Day 8 - Bosu balance by the same woman but with extra abs. Less fun than the other one. 

Day 9 - No repeat leg day. Except it’s same muscle groups, so you just don’t notice it as much. Good workout. 

Day 10 - chest and triceps workout. Also went for an intervals run - super tough as my hands were freezing and I got stitch. 

Day 11 - Back and biceps. Think both of these upper body ones were good. 

Day 12 - Hips yoga. Still trying to find the perfect hip stretchin/opening yoga online workout. 

Day 13 - Metcon workout. Indoor cardio is bearable when there’s a dumbbell involved. Also went to the spa afterwards and had a wee swim in their tiny pool, but a) I was full of three-course lunch and b) it was only 12.5m long so I was turning turning turning all the time. Plus I didn’t think to bring my goggles. 

Day 14 - Valentine’s Day! Multitasked by running to the GP surgery for a blood test (figured my veins would be nice and raised). Obviously this meant huffing like a terribly unfit person in the reception. 

Day 15 - upper body. Plus a jaunt round the village in the afternoon

Day 16 - walked to the GP this time (blood pressure and weight check)

Day 17 - Leg day. Four circuits of the same moves - not my fave. 

It’s now May. I definitely did the whole month, and some into March, and it was… fine? There definitely came a point - as ever - where I just woke up one morning and thought ‘I don’t want to exercise today and that’s absolutely fine’. Which it is. So I’m not quite sure what conclusions to draw here… do what you want?

RED days 28, 29, 30, 31

 I have completely forgotten to update this in over ten days! Inconceivable. 

Day 28 - hip opening yoga. I still haven’t managed to find a routine that’s quite up to Adriene’s deep hips one that’s behind the paywall, but this wasn’t a bad runner up. Really need to do hip stuff more frequently!

Day 29 - weird day where the kids had a vaccine trial appointment that should have taken 60-90 minutes and we ended up being there for over six hours. Time stopped to have any meaning. At the point where eldest had to sit and wait 30 minutes in case of any reactions, other child and I went for a walk because we were so desperate to just get out of there. Lovely sunset though. 

Day 30 - total body strength dumbbell workout. 

Day 31 - finished as we started with a run with Kate, same route. Slightly faster but I’m not going to read anything significant into that. 

Reflections… I’m still not sure if continuing on the days where I didn’t feel like it was positive or negative. Definitely positive in terms of ‘testing your own strength and overcoming adversity’ type stuff but it didn’t necessarily feel like I was getting fitter. Will I do it again? Well as it turns out PJ has an ‘Unstoppable’ challenge for February that is basically… exercise every day, because apparently Feb is the month when people tend to give up. I’m definitely not going to be every day about it - if I want to, I will, if I don’t, I won’t. 

RED days 23, 24, 25, 26, 27

 Life has got in the way of updating this week! But that’s part of the challenge. 

Day 23: total body strength workout and a therapy walk with a client. Struggled today as I’ve been having stomach/digestion issues lately and they peaked on this day, culminating in spending some time in the school nurse’s room thinking I was going to be sick. Fun times

Day 24: purposefully chose not to run as a result and met a colleague for a walk. Frizzin. 

Day 25: Upper body workout. Think it might have had some extra ab stuff that I skipped, because obviously who needs that?

Day 26: Leg day. See above for ab stuff. Although PJ kept saying ‘this leg exercise is also really good for your core’ so evidently it’s not needed. Right?

Day 27: I ran! For the first time since day 1. Can’t believe some people are actually doing Run Every Day - i think something would fall off/internally collapse. 

Nearly there. Four days to go! Then PJ starts a Feb RED type of challenge of her own… we’ll see. 

RED days 20, 21, 22

 Three days comes around quickly (it seems)

Day 20: leg day. NGL, I half-arsed this one. Skipped some of the ab exercises to JFDI. But I did also walk from the windscreen replacement place to the supermarket and back (with shopping on the way back - 10 mins there, 13 back!). So that’ll do me. 

Day 21: Bosu balance workout again. Definite improvements in balance, either because I knew what was coming or because I’ve actually improved? You decide (I have no idea)

Day 22: Five minute lake swim but before you go ‘Pfft, that’s no time at all!’ - it was MINUS EIGHT DEGREES outside and a mere 3 degrees in the water. Which is cold cold cold. I was probably in the water for another four minutes or so before I started swimming in order to try and acclimatise - not long enough evidently, as my collar bone area got super cold a minute or so after I set off. Then a bit further on I could feel my toes starting to tingle, so I decided it was time to turn around. They say ‘always get out when you feel like you could have done more’ - maybe I could have done to the first buoy and back, but maybe it wouldn’t have been sensible. There’s always next week. Getting changed after was…interesting. Much swearing. 

RED days 17, 18, 19

 Definitely starting to flag, but then that’s part of what makes it a challenge. 

Day 17: Booty Band cardio. Tuesdays I usually run with a friend (who very kindly significantly slows her pace to mine) but it’s frozen here, so indoors seemed safer. Only 15 minutes but it felt longer, so perhaps a good thing we didn’t run. 

Day 18: Yoga. An earlier start to the day, plus recognising that I needed something more gentle. 

Day 19: Upper body. I’m following PJ’s Patreon calendar (not to the day, but the upper body workout for that week I’ll do on my usual day) to see if that makes a difference. Interestingly her calendar for Feb is basically a RED style challenge so yeah, we’ll see what happens there.