‘Look after yourself’

 I don’t know how many times people have said to me ‘make sure you look after yourself’ or ‘take care of yourself’, or variations thereof. 

I know they mean well. This isn’t a ‘how dare people attempt empathy’ rant. 

But my overriding internal response is ‘but I don’t know how to do that/what does that actually mean??!’

I’ve been reflecting on it and in no particular order (partly so I remember how to do it when the overwhelm hits and I just can’t remember what helps) here is a list:

- Physical self-care. The basics. Brush my teeth (I hate teeth brushing - it’s so boring, the mint burns, it always seems to take aaages. I also hate the furry teeth feeling, go figure). Wash my hair even when I feel like I cba. Take my vitamins. Going to bed early isn’t a problem as I’m usually dead on my feet by 10pm anyway. 

- Exercise, preferably outdoors. I’m pretty good at exercising as I have finally found exercise I like (swimming, cycling, weights, yoga) but when I’m feeling just… meh, getting outside often helps. Maybe a loop of the village, or yoga outside in the back garden, or table tennis with the kids. Setting a timer for 7 minutes and just sitting outside and being. 

- Eating is always a tricky issue. I never forget to eat, or skip meals, but the balance of giving myself nourishment while not eating my feelings is a tough one. 

- Meditation. I usually forget this one, but it does usually help. Just a ten-minute lie down with a guided meditation. 

- Which may lead to napping. Especially with a soundscape on in the background. 

- Thinking about what hobbies I like to do. Card games, board games, crochet (I know things are dipping when I can’t concentrate on the pattern, even if it’s basic), diamond painting, hanji puzzles. 

- Small household tasks. Make a phone call. Clean one window. Then I feel virtuous and like I’ve ticked something off, but without it taking all day. 

- Music. Either dancing to something full volume (Just Dance is a good combo of this and exercise), whacking up the tunes in the car, or playing guitar. I’m still very much learning, but I can stumble my way through a few different tracks. Learning a new skill as a fully grown adult is HARD. 

- Being by myself. Sometimes it’s better to just take myself away and recharge. 

- Reading. I’ve stopped attempting to read a couple of books lately, not because they were bad, but because they felt like hard work. (Which reminds me: never, ever, read A Little Life if you are feeling anything less than 100%. Or just don’t read it at all.)

- Writing this stuff up. 

Tbc…

My Dad is dying, part five

Tuesday. 

I still don’t even know if we are there yet. But this morning I did my usual check in text to mum ‘How was last night? How does he seem today/how are things?’and she said he hadn’t slept well because he’d been cold.

Again, I know nothing is definite but I google and that’s another step closer, right?Different friend confirms, yes. Not long. (Whatever that means.)

So I’m sitting here right now, trying to get all my thoughts in order. Mum isn’t answering the phone and I’m assuming that’s because maybe she’s actually out doing something (she said she had stuff planned this week) and not because she’s sitting bedside holding his hand. 

What I do know is that this isn’t the end I want for me. I don’t think dad is selfish, but this has been such an overload for my mum, both physically and mentally. None of us have been through this before so as mentioned we have always been one step behind, running to catch up. I want to be parked somewhere nice with lots of good drugs and come and visit me when you can. I can’t help but feel dad’s pain (and constipation!) would have been controlled better if he’d been in a hospice. But that was his and mum’s choice. Also I’m thinking we’re going to have to have a difficult conversation with mum, because if she gets to the same place near her end of life then there won’t be someone to be there 24 hours for her. 

So. We wait. 

My Dad is dying, part four

 Wow, when I started thinking ‘maybe it would be helpful to get the narrative down on paper’ I really didn’t think I had this much to say about what really has been quite a short space of time. 

5 May We’re a month and a bit from the oncology appointment, and so I’m thinking we’ve still got 4-5 months. This feels a really long time for him to be in so much pain, and to struggle with basic needs like going to the toilet. I keep asking Anuschka - she says when he can no longer get up, that’s a closer sign. But he’s still going out for meals so maybe that’s a while off? 

My thoughts are jumping all over because that’s how it feels. My son is going to sit his first GCSE in under two weeks. I am a huge list maker, and I’m starting to feel like I’m losing control of the basic stuff. My daughter is dancing in london soon and I haven’t looked at what she needs to take, where we need to be when, how to get there etc. It all just feels like too much. One Saturday my husband is at work and I just pretty much cry on and off all morning. We go to watch my daughter dance and I have to block my ears with tissues because the sensory overwhelm is just too much. 

I understand now how clients with chronic anxiety feel. My god it’s EXHAUSTING. It’s hideous. I hate it. 

26 May. Dad hasn’t got out of bed in a bout a week and he has yet another UTI that isn’t responding to antibiotics. When I get there the carer is feeding him some protein shake through a Calpol syringe. Mum goes out, saying the GP is on the way in 90 minutes or so. 

Fun times ensue when dad says he needs the loo. He’s now in a hospital bed and there’s a commode, but I don’t feel it would be safe to try and get him on it by myself. (Oh I forgot earlier in the week where we had to drag him to the loo on his walker and my mum missed her friend’s funeral as a result. I was having to brace him with both arms against the toilet so he didn’t slide off. Hospital bed and commode were delivered the same day.). For so much of this we have been one step behind what he needs - which right now is two people with him at all times. Cut to the chase, the GP turns up when dad is on the commode (he’s in pain from the constipation but the back pain seems to have gone). He takes some blood and says he’ll prescribe a third round of antibiotics. 

I see the doctor out and I ask if this is the UTI, which I know are incredibly serious in older people, especially with a range of issues, or does he think it’s the beginning of the end. I am mostly expecting him to say it’s just the UTI and when it’s cleared we’ll be back to where we were last week, more or less, but he says he thinks it’s the beginning of the end. Fuck. I say I know it’s hard to predict but how long are we looking at? Weeks, says the GP. Fuck fuck fuck. My son’s last GCSE is 19 June. GP pulls a face at that date and says ‘well you never know’. He’s going to get the rapid response team on the case. Mum comes home and i have to tell her we’re looking at under a month. 

Mum has a night carer in place that evening, phew. (She’d been up with him three maybe four times Wednesday evening? I keep saying ‘this isn’t sustainable’ and everyone agrees but change is so slow.) A nurse from the rapid response team comes out to see him Saturday morning and says in her experience he’s looking very close now, as in a matter of days, certainly under a week. 

Ooooofffff. Bloody hell. Mum says not to come over as she’s fine for now, she’s been given some end of life medication should he become agitated (she’s not allowed to administer it though, she has to call someone). I am on absolute tenterhooks. I have both numbers for mum on the ‘except’ list for Do Not Disturb but I sleep terribly that night, expecting The Call. I don’t feel a burning urge to say something meaningful to him before he goes, nor do I feel that I must be there right at the end, but I just want to support mum. 

Sunday the exact same nurse says he’s rallied a bit and we could be looking at a couple of weeks. FFS this is an absolutely battering experience. Mum says do what you were planning to do today, don’t change things, she’s been told what to look out for etc. 

Monday I reflect that this is like the reverse of waiting for a baby. You have a rough date, every day you wake up thinking ‘could it be today?’. And in this case, mum tells me he’s eaten a little, he’s calm and comfortable, no change, so I think ‘ok, not today, carry on as normal.’ 

Until….

/end part four

My Dad is dying, part three

 This is a fun ride isn’t it?

30 March. Another appointment with the same respiratory doctor, except when we’re called through it’s not her, it’s an oncologist. I immediately know. 

Yep. The first PET scan was slightly too high, so missed that it has spread to his liver and back (his back pain has been increasing lately, to the point where he’s very uncomfortable). Also it’s in two places in the lungs. She is positive that even if it had been picked up sooner, we would be in the same position as where we are now. Of course my parents ask how long (I mean, it’s what we all want to know, and it’s only from my extensive listening to Griefcast that I know they are only ever guessing) and the doctor says ‘six months, with treatment’. Somehow my parents take ‘six to twelve months’ away from this (again, I’m not going to be the harbinger of doom and go NO THEY DEFINITELY SAID SIX). They will do radiotherapy on his back to reduce the pain, and they’ll type the lung tumour so that IF (and it feels like a very big if) they see vast improvement they can look at radiotherapy again in the future. They can ‘no longer offer’ radiotherapy on his lung as it could make things worse (not sure if they mean him coming in for a month of daily therapy). They are referring him to the palliative care team. Follow up appointment in three weeks. 

The doctor is not cold exactly, but sort of school teacher-esque. I cannot imagine doing this for a job, but when it is your job I don’t know, maybe act like it’s worse for the people hearing this? 

Both my parents apologise to me for having to be at the appointment and hear the news. I’m 50 years old and they are still protecting me. My brother is on a ferry home from Europe, four hours out of port and I call to give him the news. He’s very matter of fact and ‘thank you for letting me know’. 

In ‘of course this day could get even slightly worse’ it takes me over fifty minutes just to get out of the car park before I can attempt the 45 minute journey home. My husband has messaged to say that our daughter’s parents’ evening was brilliant, and I’m thinking how can I go home and tell them? How?

I do, of course. I have to. I literally wail. Kids are a bit bowled over, understandably. 

Over the next few days I let my work colleagues and other people know, more in a ‘if I’m not functioning properly or I’m slow to get back to you, this is why’ way. My brain wakes me up super early with questions like ‘how many cars will we need to take us all to the crematorium’ - it’s a form of processing it all I guess. Six months plus maybe a bit extra with palliative care takes us to maybe my birthday, his birthday, Christmas? Excellent. 

I listen to a lot more Griefcast. I start reading ‘With the End in Mind’ by an ex-palliative care doctor. I can only read it in small doses. 

Over the next month he has the radiotherapy but slowly deteriorates. It doesn’t really seem to make any difference to his pain levels. We go to a follow up appointment with the same oncologist who is much more human this time - she says they won’t get him to come in again as it’s clearly too much. His medication increases every time my mum speaks to someone about it. He starts hallucinating from the morphine. I go over every Friday and nearly every time he says something that’s upsetting in one way or another. In early May he says he doesn’t want me visiting him again because he doesn’t want me seeing him as he is now. The following week he says I will forget him. Then he says something about never walking round the garden again (they have this large calming garden that he loves) or walking the dogs again. We have discussions about his DNR form and what he does/doesn’t want for his funeral. (Hi dad, I’m here to upset everyone yet again!) He cries over the unfairness of it all. I know I’m probably skipping over large chunks, but it’s so hard to see him wincing with pain and there being nothing that can be done. 

I’m worried about Mum. Being stoic is her default position but this is so huge. Finally she agrees to getting a carer in. Thomas is visiting from Florida and he is a huge help - not only has he already been through something similar when he nursed his ex-partner in his final days, but he’s so ‘can do’ and he breathes in sync with dad through the pain, which helps calm him. They go for afternoon tea to my parents’ favourite restaurant and we go to the pub for dinner, although we have to cut it short as dad is uncomfortable. We take the kids over to see him and get some pictures. He looks frail and yellow in the pictures, but is insistent on standing up for them. 

I’m so frustrated that there isn’t more of a road map to dying. How do we know when we need to do more? Some of the signs that come up on google searches he has, some he doesn’t. Does this mean something? I know, logically, everyone is different, every progression is different, but the not knowing is really hard. 

/end part three

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?