At the start of this year I set myself the challenge of raising £1000 for St Wilfrid’s Hospice, through a series of sporting challenges and fundraising events. The response from you all has been amazing. At my most ambitious, I didn’t imagine that we’d raise nearly £400 at the quiz night, or that people would be so willing to put their hands in their pockets just to see me get my running shoes on, get muddy, or take a dip in Loch Lomond. And it’s not just the financial support that’s been so moving. Mum rallied her friends to make a mountain of cake to sell at the quiz night. And rallied them again to buy most of it back. My sister in law Charlie deliberately took a dip in Loch Ness (at one point I thought she might actually die – but she made it). My brother David ran a half marathon with me against the advice of various medical professionals. Mum’s friend Anne swam the channel (in a pool, if it had involved coating herself in lard and heading out of Dover I would very much have been on the support boat). I always knew we’d hit the total, because my friends and family are lovely lovely people, but I didn’t think we’d smash it.
I say this a bit sheepishly, because I’ve kept it to myself, but we beat my fundraising target six months in. Just before my brother Dave and I slogged up and down Seaford seafront in the rain for thirteen and a bit miles, we tipped over the thousand pound mark. When I went to visit St Wilf’s the day after that very wet seafront run I handed over an ice cream tub full of cash, slightly wondering how I’d keep up the motivation for the rest of the year.
But here’s the thing.
I knew, as soon as we walked through the doors, that the work they are doing now is just as important as it ever was. More so maybe, because now they have the facilities to match the calibre of everyone who works or volunteers there.
I had intended to punctuate this year with little personal stories. Some seasonal prompts – not just about that final year 20 years ago, but the years leading up to it as well. I started several. But I never finished one, and I never published them. The fact is, while I wanted you to know what a difference St Wilf’s made for our family, I didn’t want to make you all feel sad.
But it’s nearly all over now. The nights are drawing in again, and there’s only one planned event to go. And if I don’t tell you what happened between 1991 and 1995 then I’m letting down everyone who was involved.
So here, for the first time, is our story.
The first indication we got that all was not well was when Dad crashed the Volvo. It was a Y reg, off-white estate. His pride and joy. And it was a write off.
I was ten at the time, and not quite in my final year at primary school. Naturally, I wasn’t included in any of the grown-up conversations that must have been going on around the time. I don’t know why he crashed, or how it happened, I don’t know if there was any suggestion that he might have been at fault, or been unwell, I just remember that that incident was the first in a chain of events that changed things in our family for ever.
The second event in that chain was the death of my maternal grandfather. His death, suddenly and unexpectedly at the relatively young age of 63, was my first experience of death. I remember being summoned to the living room by dad, who sat on the settee next to mum and told me and my brothers that we had ‘lost granddad in the night’. At ten years old, my first thought was that somebody should be looking for him.
Strangely, the loss of my grandfathers bookended the illness and eventual death of my dad – my paternal granddad died the day after my dad’s funeral. I adored them both. Mum’s dad was a big guy with a big heart who left a big hole in the family which we still feel. Granddad Elliott was a quiet man of few words but whose love for his family was obvious and constant.
But my emotional response to the later event was very different from my emotional response to the first. Maybe that’s just the difference between a ten year old and a fifteen year old.
Weeks after the first funeral, at Easter in 1991, we went for a walk. Mum’s sister, my uncle and two cousins were visiting for the long weekend and it was the thing our family did in such situations. Go for a long walk – usually somewhere windy. There was nothing unusual about it. Except that dad couldn’t walk in a straight line. He was leaning heavily to one side. And he didn’t seem to notice that there was a problem.
The kids got sent outside when the doctor arrived. Up until that point I didn’t really know doctors did house calls, especially on a Sunday. Shortly afterwards he was in hospital in Haywards Heath, and I learned to spell ‘neurological’.
Nobody used the word cancer, at least not to me. I heard the words ‘brain tumour’, but my main concern was working out if it was spelled like ‘tuna’ or not. I was worried, but not excessively so. He’d been in hospital before and come home just the same as he was when he went in, and I was confident this would be no different.
When I went to see him in intensive care after his operation, he was still the same old dad. Tired, with a corker of a black eye and a big scar shaped like a question mark on the side of his head, but still there. We visited a few times while he recovered and I became rather partial to the chicken soup that you could get out of the hot drinks machine for 20p.
Eventually he came home and life went on. He went back to work – although he wasn’t allowed to drive, meaning mum took on caravan towing duties on the annual holiday, something he never seemed entirely comfortable with.
It wasn’t until the tumour recurred for the first time, two years later, when I was twelve and in my first year at secondary school, and Jurassic Park was out at the cinema, that I began to realise things were changing for ever. Not just because the chicken soup at Hurstwood Park hospital now tasted of coffee (prompting a rapid switch of allegiance to Nice ‘n Spicy Nik-Naks from the vending machine). I mean, he was physically there, but he wasn’t the same person any more. He was short tempered and distant, and two lots of pretty hardcore brain surgery had changed his personality. I think that’s when I started grieving to be honest. The day mum and I were driving away from Hurstwood Park hospital in Haywards Heath, and she told me that we had to accept that the dad we knew was probably gone. I cried that day.
But he pulled through, again, and came home. And we tried to adjust.
It wasn’t easy.
At times it felt like living with a stranger. Our relationship was difficult. I desperately wanted to be close to him, like we’d been close before. But he seemed to get annoyed by a lot of what I did. Eventually, I’m sad to say, I more or less stopped trying.
By 1995 he’d been medically retired from work. There’d been a big party at a pub in Brighton, and I’d got most of the day off school to go to it. He got a framed certificate for his 33 years of service and his colleagues gave him a collage of photos, and that was it. I don’t think he liked being retired. I don’t think he felt ready. There was only so much servicing of the Volvo (by now a H reg 440) that he could fill his days with.
However hard I try, I can’t remember how we knew he was ill again. The memories of that year have all sort of blurred into one homogenous lump. There are snapshots, but I’m not entirely confident of the order. I can remember though that in March I was watching the Brookside omnibus in David’s bedroom (which I’d adopted as my own as he was more or less living at his girlfriend’s) when mum came up for a chat. She’d been up to the Royal Marsden that day with Dad, and Dad’s brother Peter, and wanted to talk to me about something. As the body of Trevor Jordache was discovered under Sinbad’s patio on the screen of the small portable TV, she told me that he was ill again, that there was nothing they could do, and that they thought he’d die that year.
I asked her when. She said they didn’t know. I asked her if he’d still be there for Christmas. She said probably not. I asked about my birthday at the beginning of December. She said probably not. I asked about his birthday on bonfire night. She said probably not. That they didn’t know. That we had to wait and see.
It didn’t sink in straight away. As far as I remember she went back downstairs and I carried on watching Brookside. The next day was a Friday, and I went to school as usual. At registration, my tutor (who’d been chatting to mum at parents’ evening on the Wednesday) asked how dad’s appointment yesterday had gone. Then it hit me. I would’ve gone home – but there wasn’t anybody at home, so my brother Andrew came and picked me up and took me to work with him. I sat at his desk in an open plan office and did a day’s unpaid work for BT.
Over the next few months, we were in limbo. Waiting for something to happen. Dad’s health got steadily worse – until we got to the point where he didn’t really get out of bed. His moods got worse. I’d dread going home from school because I didn’t want to walk into an argument. I’m not proud to say it, but part of me resented this grumpy stranger who had moved into our house.
As we rolled slowly towards the summer, things came to a bit of a head. We were all exhausted, mum especially, and needed a break.
And that’s when St Wilfrid’s came into our lives.
I didn’t know at the time, but I’ve been told since, that the first time he went into the hospice he wasn’t really expected to come out. Even at, by then, the ripe old age of 14, I didn’t really know what hospices where. I’d never heard of them. I didn’t have any expectations. 20 years on kids probably just use Google to find out whatever they want to know. I didn’t like to ask.
When he arrived he was confused – he didn’t really understand why he was there, and he kept commenting that they hadn’t ‘done anything’ to him yet. He thought it was a hospital and he was expecting treatment. But it was a nice place to be. He had a clean, bright, room to himself. Everyone was lovely. He rallied. And he came home.
If we’d been left to get on with it again, the whole of that year would’ve been horrendous. But now, we had back up. St Wilf’s also offered something called a ‘day hospice’. Three times a week, a volunteer would turn up outside our house at about half nine and pick dad up. He’d be driven to the hospice in Mill Gap Road in Eastbourne and spend the day being entertained, intellectually stimulated, having a manicure, whatever, and then be driven home at about three. It gave him something to think about outside of the walls of our house, and although he didn’t always seem to want to go, he seemed so much better for it. By this time he was walking with a stick (after much persuasion) – and the hospice arranged for him to see an Occupational Therapist who helped him feel steadier on his feet. Actually I don’t think he took much notice of her, but she tried.
In September 1995 mum and dad celebrated their silver wedding anniversary with a massive family party. I can’t look at the photos of it any more. There’s one in particular, of mum and dad together, where there’s so much going on in mum’s face that I find it really upsetting. Happiness, sadness, exhaustion, uncertainty. It’s all there.
Strangely, by this point, my relationship with dad had improved a bit. He seemed mellower now. He’d talk about Eddie Calvert and try and get me to play pieces on the trumpet that I’d never heard of (and that were, to be honest, still a bit out of my reach even after three years of lessons). Mum and Peter had made the decision not to tell him the full detail of his diagnosis – but he knew. I know he did, because one day, when it was just the two of us at home, and we were talking, he told me he was sorry. And he started crying. Almost inconsolably. I didn’t know what to say, or do – so I just put my arms around him and told him it was ok. Again, and again, and again. We never talked about it after that, and I never told anyone what had happened. But, at 14, it was the moment I stopped being a child.
Against the odds, and with the support of St Wilf’s behind us all, he made it to my 15th birthday. Just days afterwards he was admitted to the ward at the hospice, and gradually drifted away. He died on the 22nd of December 1995.
I’m not one for flowery metaphors. There’s a slightly cloying tendency to refer to people who do jobs like nursing as ‘angels’. Well, they’re not angels. They’re ordinary people who do extraordinary things. They came into our lives at a time when the foundation of our family was crumbling, and they gave us the love, the care, the confidence, the resilience, the rest, and the endless cups of tea, that we needed to keep going.
On Sunday, I take on the final sporting challenge of the year – the 10 mile Great South Run. And even though you’ve already all been so generous, I’m asking you, nicely, please, to think about donating again.
They’re absolutely worth every penny.
2 thoughts on “Here’s why”
Tom ,your Dad would be so proud of you and I know your mum is. Well done . Love from Anne xx
I don’t know you but a friend shared on Facebook. I was curious to read what you have written. So moving and reminded me of the nurses in Australia who helped me through my mother dying of cancer. Inspired me to give. Thank you for sharing.