A few bizarre / poignant things my Dad said when he was ill:
“Montgolfier”
“Mysterious door”
“Put a nail through the bottom of the curtain”
“They say that they can make me come back”
“It’s a savage land… Burma”
“Floreat Fircroftia” [Uppingham house motto]
“Little boys with guns”
“How much to fight against natural justice?”
I thought I might as well write a cathartic and “out-reaching” post. Everyone else is doing it, and at least I’m not employing a ghost writer and trying to make a bob from it. (A ghost writer would probably have tried to get me to change tense, but writing in the present is comfortable.)
So, I had a fairly shitty experience a few months ago. I may have sort of come out the other side now, so it’s probably a good time to think about it. The timeline went something like this:
August:
Dad breathlessly jaunts up to a family do and laughingly announces that he has a shadow on his lung.
He goes for many tests and a biopsy.
September:
It’s diagnosed as smoking-related lung cancer.
Dad tries the denial hat on for size. It fits well.
Luckily I was at the consultation too, so the family can machinate on his behalf. I’m in touch with social services and gezillions of other organisations, trying to find out what’s going on, and how to get the best care for Dad.
Mid-October:
We all decide that radiotherapy has got to be worth a go. The consultant’s decision is that, even in the last fortnight, Dad has become too weak to risk any therapy. Doc asks to talk to me on my own and tells me that Dad has 6-12 weeks to live. This is a shock. Really.
Answering Dad as to what the Doc said to me is not easy.
I drag myself away to Paris for an overnight conference. It’s not a great trip, first Eurostar experience notwithstanding.
This is where the story really begins.
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On my return from Paris, I go to stay at Dad’s again. It’s late, I’m an emotional state and I’m sincerely hoping that he’s asleep, so I can just crash without facing any harsh realities. The reality turns out to be pretty harsh. As I open the front door, I hear a frail voice calling out for me. I go to his bedroom and see the light on. I try to push the door open, only I can’t. He’s fallen out of bed, and blocked the door. He’s been lying there for hours. Luckily, the back door opens into his bedroom, so I go round that way. He’s too weak to get back into bed, but otherwise fine, and enormously grateful that I turned up. Over the next half an hour, we work out how to use his legs to support his weight and my ill-defined abdominal muscles to gradually lift him, and we get him back into bed. He’d have been lying there until at least the following afternoon if I hadn’t pitched up.
The next day I rather excitingly have VIP tickets to see England-Estonia at Wembley. It pays to have contacts! There had been a ticket for Dad: he’d never been to Wembley and was looking forward to it, but we figured it wasn’t a realistic prospect. Good game, great stadium, Lampard has a fine arse, yada yada. The memories are largely superceded by the miserable weeks that follow.
It takes forever to get back home. Dad’s fine, apart from a couple of abortive attempts he had made to go the toilet, which I clean up, no problem. A friend and I help him to the living room to watch the rugby world cup semi v France. Exciting match; Dad really enjoys it.
After that, I go for drinks with mates. I’m not in a good way. I feel awful about leaving Dad and it becomes apparent that, the way I feel, and the situation the way it is, I can’t go back to Cambridge, work, anything. I cry a lot and desperately request a wheelchair and a commode.
My friends and family are so amazing that within 24 hours I have two wheelchairs and two commodes. Where do you find these things on a Sunday?!?!?
The next three weeks I nurse him 24 hours a day. My work is put on hold, people being very understanding, not that that matters at all to me right now.
I have to deal with all the care workers. They are all lovely and try hard, but it’s a bloody effort to deal with all these people coming in and out, and never quite in time. The role-call is:
- Care workers, morning and evening. They have to phone in and phone out, and the ringing phone disturbs and annoys Dad.
- District nurses: we meet at least three. Nice people, and useful, but occasionally less brief than would have been ideal.
- GPs: Kindly doing emergency home visits. A lady that Dad takes a dislike to, and the lovely Dr Baxter who my Dad adores, and who sits holding his hand, and carefully and kindly explains on more than one occasion that there is little point in getting a second opinion.
- MacMillan nurses: strangely ineffectual in this case. But everyone else raves about them, so I’m sure they’re normally great.
- Social services: I don’t really meet these people for long, as I cancel meals on wheels as soon as I turn up. I appreciate piping hot food delivered to your door, but Dad never ate more than a couple of mouthfuls.
- Occupational therapy: popping in twice to assess situations. Wonderfully provide all sorts of aids to make Dad comfortable etc. No-one quite clocks the speed of Dad’s descent though, so almost everything arrives 3 days after it would have been valuable, and 1 day after it suddenly becomes useless.
- A couple of lovely guys from Medicare pop round regularly with these occupational devices. They are ridiculously efficient but, again, their presence disturbs Dad.
In the meantime, I have many tasks on my hands. I’m still staggered by the speed of Dad’s decline, and no-one can give me a useful answer as to how long he has left, or what I can expect. I shop and cook for Dad, trying to feed him all the best stuff that he’s been missing out on for a while. The flat, never exactly pristine, has taken a serious turn for the worse in the last couple of months, with piles of post (mostly unpaid bills) unopened and requiring attention. For one reason or another, there are always at least two washing loads per day.
I don’t have the faintest idea what to do for the best, so I spend a lot of time with Dad. He’s in pretty good spirits, but it’s hard to find things that he’s interested in . Every day he says he thinks he’s getting better even though I can see his strength fading. I don’t know if he’s trying to kid himself or me more. He never has any pain and takes this as a good sign: cancer is always painful, right? He really appreciates me being around, and at no point takes me for granted. I love him a lot. He really wants to get back to work, and I try to persuade him that there’s nothing that can’t wait. I contact friends and family slowly and try to get people to come and, basically, say goodbye.
Seeing as I can’t leave him alone in the flat, except for 15 minute dashes to the chemist if there’s a carer there, there’s not much exciting to talk about. I can’t even watch TV really, as if it’s on at any volume, I can’t hear him calling me from next door. He sleeps or dozes increasingly, but I can’t go out then either, in case he wakes up disorientated. I invite my friends round for dinner, to save my sanity, and give me something different to talk to Dad about. The amazing Minnie, on two occasions, helps me with wine, random chat, and a whole loads of bloody brilliant stuff she knows through being a Macmillan physio. She’s utterly wonderful. Other marvellous friends bring me shopping and even drop me off gorgeous dishes. It’s all very much like Neighbours, and I appreciate it more than I can say.
I get highly attuned to the weakening call of “Helena” from the bedroom. He really can’t do anything for himself, and relies heavily on me. I’m happy when he accepts “pants” (nappies) as it means fewer accidents. I always dash in to see what he wants, and I try to entertain him.
The nights are bad. I try to unwind in the evenings with a couple of beers and get an early night. Dad wakes me up by calling me, between 4 and 15-odd times a night. When he gets the personal neck-cord alarm, he decides it’s a wheeze (no pun intended) to disturb the people in the control centre, getting them to set off the enormous alarm on top of the fridge. I sort him out with a portable doorbell instead, to cut out the middle man. Most of the times that he calls, he wants nothing. I get highly annoyed with these trivial requests disturbing my sleep. Tired and emotional doesn’t even begin to describe it. It takes me a week or so – too long – to work out that he’s scared of the night. I assume that it makes him think things that aren’t nice. I try to get him to talk about it, during the day, when I can face it myself. He doesn’t want to. I ask him if he wants to talk to someone else: the Macmillan nurse, for instance. He says that he doesn’t. And if he does want to talk to anyone at any point, it’ll be me. In the meantime I improvise a nightlight.
As he weakens, he loses interest in many things. One night, I have been looking forward to QI. It is a small beacon in my ordinarily bleak evenings, and I tune in the TV we have rigged up in his bedroom. After only a few minutes, he gets very agitated and declares that he “doesn’t want to watch stupid QI”. I feel a bit miffed at having to miss it, but I make sure he’s OK, and I get him ready for bed. The drill consists of (from memory): curtains, pills, water, linctus, pants, tucked in, good position for lung drainage, comfy, warm, teeth, nightlight, reassurance. (Thinking about it now, he was probably too weak to understand QI. Having others around him hooting with laughter may well have made him realise that he wasn’t too well. Pretty galling I suspect.)
We try to make his weekends fun. Family and friends visit, with the family in particular dropping everything, and giving me a bit of respite. We organise pub trips. I don’t know how much he gets out of them, as he just sits there in a bit of a haze. But he talks about them a lot afterwards. His hazes are mistaken by some for the effects of morphine, but he’s not on any serious medication. I think it’s just the cancer sapping his energy, but who knows. It’s just like accelerated aging. Not sinister. But very accelerated.
He rallies for his daughter (my half-sister) who makes an urgent trip from Canada. He really picks up for a few days. But then one night, he finally makes the connection. “I’m going to die, aren’t I?” I have my philosophical-biologist hat on. “We’re all going to die.” He doesn’t buy it, and finally we’re all on the same page.
That weekend, Dad sees everyone he really cares about: his children, and important friends. He’s due into the hospice on the Monday, to give me some respite before I really lose it. I have a couple of hours off on the Sunday to see some mates, and a firework display. When I get back and everyone else leaves, Dad’s lungs start to make the “boiling kettle” noise. If you’ve heard it, you know it. I know it’s soon, but I don’t know how soon. I call the emergency Doctor because, for the first time, he’s complaining of discomfort. I can’t leave him that night. I sit with him, holding his hand, with my arm around him. He holds my hand too and it’s lovely. I doze a bit and then check that the Doctor’s on his way. I then lie down next to Dad and gently hold him. He’s in and out of consciousness I think, and his breathing can’t be described as easy. I love him more than I’ve loved anything for a good while. Eventually, I’m woken by the doorbell. I jump up and tell Dad that the Doctor’s here. It’s gone 1am. In the time it takes me to let the Doctor in, about 20 seconds, Dad dies.
The next morning I update my Facebook status: “Helena is an orphan.” I think that some people consider it a bit dark for a social networking site.
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After all that, I just wanted my life back. It never quite occurred to me that I wasn’t going to get it back how it was before. Everything became pretty grim, but I went through the motions. Grief is unbelievably tiring. At that point I was pretty sure that I would never be “myself” again. But personalities are pretty resilient.
A couple of weekends ago I was at a party, and I realised that I actually cared about what people were telling me. I wasn’t just drifting in and out of the conversation. I had regained (a degree of) comic timing. I was enjoying myself again!
Since then, I no longer fear making eye contact with people at certain times in case I dissolve into tears. For the same reason, there are fewer conversations I now avoid. I feel less prickly and annoying. I’m starting to make plans again, as I am more confident that I won’t be in a godawful mood on any given day. And of course, I decided to waste a Friday evening documenting all this nonsense.
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At the risk of getting all Gwyneth Paltrow on your ass, there are so many people who helped me enormously:
Naomi, Nigel and Penny for all sorts: food, support, respite, DIY education, advice etc etc
Jessica and Diana for necessarily long-distance support
Paul, for being a fellow rugby fan, and for getting all painty since
Harleen, for lovely food, and support of all kinds
Minnie, as above
Lucy, for the commodes!
Alex, for the flowers and chocs and so many (unanswered) supportive messages
Alsie, for dinner companionship
Vil and Loukik, for sending me my mail, so I could sort of keep tabs on my own life
Jon and Max, for lending TVs and DVD players (and banana cake!)
Katie and Trong, for amazing, rapid woodwork
Damian, for accepting an odd commission
Jim, for the Wembley tickets, and for being really sweet
Pete, for going a long way out of your way for no good reason in the end
Laura, for good advice in the very beginning
Tabby, for being ultimately practical and wonderful, and having been there herself. Sucks, innit.
Dad stopped breathing just as the emergency Doctor arrived.
He had tears in his eyes, which the Doctor said was unusual.
…As the small child used to say after The X Files.
And as I say about this website.
I was in a bit of a strange mood yesterday, and the idea of a long, hot bath appealed. Being in a flatshare currently, the idea of having it at home didn’t appeal. So I headed down to the gym hot tubs! Mmmmmmm.
As I lay there, basking, it occurred to me that that’s what it might feel like to be a very small person in a glass of champagne.
Then I thought of Borat: “Don’t shrink me, gypsy”.
And that nearly cheered me up…
As a motorcycle sped past me last week (no mean feat these days, although my advanced driving still dictates that I maintain (most) speed limits), I was reminded of some of the best personalised number plates I’ve seen.
On one Audi TT (in the days before EVERYONE had one!), the plate:
MY 51TCH
On some speed freak krazy bastard who totally cut me up on the motorway:
SORRY!
(Couldn’t be mad after that!)
And on this motorbike?
BI6
NDB
AS IF!!!!!
drivingA couple of days ago I had to take my beautiful car for a service.
I was given a courtesy car. A mazda 2. What the hell?!?!?!
It was like driving a first floor McDonalds: all high, prefab, easy and skill-less.
Even the stereo was like listening to music with your head in a box.
What would possess anyone?!
I love my car.
It’s LOOOOOMING!!! The big 30!!! Which is all very well, and I intend to embrace it. But it does come with some degree of retrospection. So, in order to see if I have made enough of my life to date, I am trying to make a list of things which people should do before they’re 30. (I know that there are millions of those lists out there, but the ones I can find are really poor. I mean, refilling an inkjet cartridge as something to aspire to in your first three decades?!?!?)
So please help me to come up with a decent list. (You can check on its progress here.) I’ll be using it on you in future, so don’t get funny about it! And remember: I only have 6 weeks or so to fulfill the ones I’ve not done! It’s going to be a busy time! (I may or may not later reveal which ones I’ve still not completed!)
While I’ve been musing on this, I checked out the link from this post. Not that the ten commandments are meant as a list of things to aim to do, but it turns out I only have 2 left to break!
Last Saturday night, I was out with the newly be-Doctored Paul and some of his wonderful friends. After sampling several of Cambridge’s finest drinking holes, we tumbled into Kambar, a nightspot which I have (shock, horror) never been to before! Top night, full of nutters. My personal highpoint though, was the DJ’s reply to my request: “That song sucks Satan’s COCK“.
I am NOT going to tell you what the request was.
The next night was the much anticipated set by Josh Wink. IN CAMBRIDGE!!! JOSH WINK!!! Who’d have thought?! Must be a career low. Big with the hands in the air. Higher State of Consciousness DJd by the man himself!!!! What really amazed me though, was the people there. Not your usual Cambridge tarts n sharks. In fact, for the first hour or so, the dance floor was just blokes givin’ it large. Including one guy whose dance style was to do crawl-stroke arms around the place. Great atmosphere, and an utterly novel clubbing experience.
Wasn’t loving work so much the next day, after 3 nights on the bounce!!
On the descent into Calgary airport, I was surprised by the low cloud. We seemed to be going through it forever. In fact, we were still going through it when we hit tarmac, and I realised that in fact the problem wasn’t low cloud, but that EVERYTHING was white!!! Ground, sky, everything!
Spending some time in the lovely Banff, we went through several snow-thaw cycles, from white to grey and from muffled stillness to dripping everywhere. Canada, and probably most other places, are prettier when covered in frozen water, it seems.
While in the Canadian Rockies, I was introduced by a lovely new acquaintance to the concept of “dry snow”. Now, I am fully aware that snow is made from water, which tends to have properties of wetness, but it’s true that the snow in the Rockies is dry! It’s rubbish for making snowballs, which is probably just as well, as I’m terrible in snowball fights. It’s very sparkly and pretty and stays creaky under-foot even when well trodden. And it’s great fun for sliding on your arse on, after critical ski failure. (A bad workman… ahem!)
Today I can verify that the snow in Victoria, Vancouver Island, is very wet.
They don’t say what happened to the mouse though…
Today I met an inseminator. The first I have met, and also possibly the last as I don’t usually hang out with farming types. He managed to give me some rather in-depth details of his profession, without putting me off my dessert, which I thought was quite good going. For example, did you know that they do the insemination through the
Anyway, nice guy. He even offered me a box of arm length gloves for clearing drains / fancy dress / scaring people at airports. Sadly, I was at a funeral, so politely declined.
The huge news of the moment:
PAUL HAS SUBMITTED HIS THESIS!!!!!!
Yes, after 57 hours without sleep (it came to a total of 66 after the apparently obligatory trip to the Junction for a night of bad music), here is the moment of triumph:
And here is a gratuitous pic of me in the lab, cos most people probably don’t know what that looks like:
Clearly scarred by having been made to watch Miss Congeniality for a second time on Sunday night, I am now seeing overachievers everywhere I look.
Check out Loren’s pitch.
“…and World Peace.”
Thanks to Texas Pete for this one:
Donald Rumsfeld is giving the president his daily briefing.
He concludes by saying: “Yesterday, 3 Brazilian soldiers were killed.”
“OH NO!” the President exclaims. “That’s terrible!”
His staff sits stunned at this display of emotion, nervously watching as the President sits, head in hands.
Finally, the President looks up and asks:
“How many is a brazillion?”
