Something About Joss
A cancer diary by Nigel & Dianne Parkes
Joss Parkes sadly died on 25th January 2011 after a long fight to beat a brain stem glioma. He was one of the bravest boys in the world and never complained about his sorry lot. He was also a best friend, a wonderful inspiration and I was glad to be his Dad.
Joss was diagnosed with his cancer in 2005 . He was given just weeks to live. To quote the consultant ‘Its’s Disneyland Time’. So we packed our bags, hopped on a train and indulged his every whim. Of course there was a lot more to it than that. There were tears, arguments, fights and large glasses of scotch.
‘Something about Joss’ is the journal that my wife and I kept over the years that Joss had his cancer. If there is enough interest we will post more extracts over time. Hopefully you will find it interesting, illuminating and touching.
We’ve been through a pretty rough time of it over the last few years, but we’re getting through it.
Something about Joss is our Diary over the most amazing 6 years.
It is broken down into important dates and chapters.
When we approached publishers with our book they were very positive, however they wanted the book to have a conclusion – a finality if you like. At the time of writing that was an impossible thought so we didn’t pursue the publishing option. Now that things have changed we may one day revisit the whole idea.
Meanwhile Extracts from our book is exactly that – extracts that we hope you may find interesting.
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“Pretend you’re a pirate.
You can use your arm as a sword and your hair as a hat.”
“You said I could stay up late.”
“Did Ten. Na na na-na na.”
I always let Joss get to ten first no matter how far around the houses I have to go.
As Di and I start to write this journal, our four, going on five-year-old son Joss is snuggled up in a bed far too big for him. He is lying on top of a Scooby Doo duvet cover that he refuses point blank to have over him until it gets too cold in the middle of the night and he is dying. In our wildest dreams we never thought that we would say that.
Sunday 27th February 2005
I’ve got a wobbly leg. How did I get that?
NP: My mother, Joyce, out shopping with Joss and me, noticed that Joss was developing what appeared to be a lazy walk. He was dragging his left leg.
“Don’t fuss Mum,” I said. “It’s just a stage he’s going through, he’s fine. Maybe it’s to do with those leg cramps he’s been getting.”
My mother has always been a bit of a worrier – a the-glass-is-half-empty sort of lady. Sometimes I feel she metaphorically throws away the first half so that she can look at the gloomy side.
“I think he should see the doctor,” she said.
Joss is a wonderful little boy with a mischievous sense of humour; quite tall for his four years, almost lanky. When he’s not dressing up and putting on puppet shows he likes to watch films on television. I doubt any child has the DVD collection that Joss has: everything from Chitty Chitty Bang Bang to The King and I, fromAristocats to Shrek 2. From an early age he’s been mad keen on films, mainly musicals. Not simply sitting impassively watching, but forever asking the most grown-up of questions, about the visual effects, the scenery, the voices. Perhaps we’ve over-indulged his passion for movies, but having been in television all my working life, I can’t say a couple of hours a day is such a bad thing.
On the other hand, Joss is inclined to be a little lazy, but maybe that is too harsh. After school he tends to be a bit lethargic. I suppose that’s what I thought when he started dragging his left leg; it was insignificant, like the kids I see every day dragging their feet on the gravel as they go to school in the morning.
4th March 2005
DP: By now, Joss’ gait was so bad that he looked as if he had a wooden leg. I took him to the G.P. and explained that I was very worried about his lazy leg and the fact that he had been so ill following a measles jab. The doctor said that in his opinion it was just an infection, that he considered it “nothing significant”. He was clearly unconcerned. “Come back in three weeks if he’s no better.” I left the surgery frustrated.
I’m not convinced by this diagnosis, and feel I was being fobbed off. “It’s just a virus,” he said, but he clearly hadn’t got a clue. In fact he seemed pretty uncaring. He might as well have told me to go away.
NP: Just an infection! It seemed to make sense – both our children had constant colds and coughs. It was also something that I guess I wanted to accept as true. After all, infections usually go away, don’t they? Joss had been incredibly unwell shortly after that single measles jab back in February – as was nineteen-month-old Jamie – sweat pouring off them both and with temperatures through the roof. Rarely for both of them, they refused food, even the “bad food” treats that usually they would take my arm off for – the crisps, chocolate, ice cream.
“Why don’t trees move? Don’t they want to play with their friends?”
NP: Joss’s teacher took Di on one side this morning and asked if there was any history of disability in our family. “Have you noticed that your son finds it hard to roll dough between his fingers?” she asked. “Did you know he can’t sit down without steadying himself on the desk?”
“No,” Di replied, immediately concerned and now doubting the doctors’ infection fob-off even more.
Bloody teacher, I thought when Di told me. I was indignant: okay his left leg is a bit lazy but he’s not disabled. Nevertheless Di decided to take him back to our G.P.
DP: I was so grateful to his teacher for telling me about her concerns for Joss. She is a very caring woman, even offering to talk to our G.P. herself if I thought it might help. At least now I could take Joss back to the surgery without being seen as a paranoid mother. I had back up. I did panic, though, and was very shaken by what she had said. I raced home, dived into the Reader’s Digest medical book and nervously scanned the pages until my worst nightmare slapped me in the face: Joss had textbook symptoms of a brain tumour.
I sat in our lounge for ages, paralyzed with guilt. Guilt because I knew something was wrong with Joss weeks ago and guilt that I had not challenged the G.P. when he fobbed me off with an offhand diagnosis. I arranged an urgent appointment that day to see him. I decided to tell him that Joss’s symptoms matched those of a brain tumour.
NP: I returned home from work to be confronted with the news that Joss was presenting with the classic symptoms of a brain tumour. In shaking disbelief, I started to get irritated. A scotch or two later and I was furious. Why did the doctor say it was just an infection? Why wasn’t Joss showing more obvious signs? Why hadn’t I noticed? With the exception of a bad reaction to a recent measles jab, he hadn’t suffered from headaches or anything indicating a brain tumour.
But underneath it all, in the shadowy recesses of our minds, we knew from the moment my mother mentioned Joss’s lazy walk that something was not quite as it should be. Maybe we had an inkling when Di took Joss to the doctor originally that it wasn’t just an infection. Maybe we knew something in our bright lives was going to change dramatically and that an ominous darkness was approaching. As hard as it was we resolved to stay positive, at least in the short term, until we knew all the facts.
Sitting in the G.P.’s waiting room, we were surrounded by a cross-section of our local community. The pensioners who frequented the practice on a regular basis; the mums with suckling babes in arms; the spotty teenagers who looked significantly more healthy than anybody I know, and the fretful. I put ourselves into the last category.
As we waited, I prayed silently, staring at the floor with fingers crossed and a pounding heart hoping that everything, all my best-laid plans for our futures, would work out. I so desperately wanted to kneel down, put my hands together and stare up to the heavens for help. I wanted to take on Joss’s problems as my own: “Please God let this all be happening to me.” Joss, on the other hand, thought this was great – both his parents taking him to the doctor. He had all the innocence of a young life without a care. I was in awe of Joss, as I am to this day, and as I will be forever.
We couldn’t see our own doctor so we were put on the fast-track system – this being a way of sorting the patients into categories: the malingerers and those seriously knocking on death’s door. We saw one of the practice nurses, a nice woman but quite nervous as she sensed our disappointment at being fobbed off with a nurse and not a doctor. As she listened to our concerns, she realised that not only was she completely out of her depth but here were two parents who looked like they might collapse at any moment. She called for a doctor.
It was now the turn of a female doctor, a neat woman with a clinical, formal appearance and a sympathetic manner hiding what I thought was a sense of “here come those troublesome parents again”. She got Joss to perform a few tests, checking his strength in his arms and legs, and his co-ordination. Joss smiled happily as he did what she asked of him; it was just a game to him.
“He is definitely weaker on his left side,” she said.
“What does it mean?”
“I don’t really know. I’m going to refer you to a hospital. Which one would you like to go to?”
This seemed such a strange question to ask and felt very much as if the burden of care was being placed upon us as parents. What if we picked the wrong one?
“Whichever is best at this sort of thing,” I said, hoping that she might know.
She made her decision. “Go straight home, pack an overnight bag and go directly to – ” She named a large hospital not far away. “Be prepared for them to keep him in overnight.”
As she said this my stomach turned to jelly, and had I not been leaning on the examination couch I would have had to sit down. Our own amateur diagnosis and fears running around inside my head, what she was saying was horrendous. I have never considered in my most depressed moments that my children could be so unwell in my lifetime. I had always thought that it would be them who would visit me in hospital; being overweight and at times an excessive drinker, the odds on me having a long life seemed remote. Now, being told that my child was unwell enough to be admitted to hospital, especially with our own Readers Digest diagnosis, was incredibly distressing.
The doctor gave us a referral letter and we drove home. As our unsuspecting Joss sat innocently on his booster seat playing with his Batman toy, we talked incessantly about other things, however ridiculous or mundane, in an attempt to keep our minds off the nightmare that was unfolding in front of us and to hide our fears from Joss.
DP: I steamed open the letter from the GP to the consultant. We were already in a state of apoplexy so what the hell, we might as well know if the doctor was thinking what we thought. She was.
NP: Di rang her mother in Worcestershire to say that we were having to take Joss to hospital and I rang mine. I asked her to come over and baby-sit Jamie. As I started to tell Mum what was happening she was remarkably calm, with only the occasional “Oh my god”, which for my Mum was quite restrained. She then drove the short distance to our house and Di’s Mum started her hundred-mile journey. I can only imagine the thoughts that must have been going through their heads – the doubts, the worries and the pains. This was not what being a grandparent was all about; it was meant to be fun and laughter.
We packed a bag or two. One full of pyjamas, toothpaste and a change of clothes for Joss; the other full of toys and Joss’s security blanket. We then made the agonizing drive to the hospital. We did most of this like automatons, hardly saying a word, too busy praying with every breath to talk to one another. Joss took it all in his stride and seemed quite unconcerned. To him, this was just a great big adventure and what’s more, without Jamie, he had his parents all to himself.
At the hospital we were ushered into A&E. A succession of doctors came and went. “It’s probably an infection,” they kept saying. “But just to be on the safe side we’ll run some tests and keep an eye on him overnight.”
I started to become a bit of an ostrich or worse an amateur physician and told them what I thought was wrong. “He did have the single measles vaccine recently and he was very unwell. Could it be that?” I prayed that they would say yes. The men in white coats smiled politely at the dad playing medic. Joss sat on the examination bed unruffled by all that was going on around him. How he didn’t spot that his Dad was on the brink of a nervous breakdown astounded me
Di stayed with Joss. The hospital had fold-out beds so that fretting parents could keep their children relaxed and themselves slightly calmer. I went home to find our mothers clucking about. My mother was washing up and Di’s was doing some ironing. If it had been any other time it would have been a vision of domestic Waltons-type normality – but this wasn’t any other time. I was grateful for the company, yet too wrapped up in my worries to enjoy it.
Before going to bed I tearfully kissed our little blonde-haired Jamie. With two grandmas waiting on his beck and call he had not a care in the world. My entire world was falling apart and he was sleeping like a baby. As I went to our empty bed I felt strangely jealous of Di being at the hospital. I knew she would be in super-mother mode, reading him a story and giving him his tired-looking cuddly toy to hug and doing her best to make everything as normal as possible.
I remembered the last two occasions I had slept in our bed alone, first when Joss was born and then when Jamie arrived. How ironic, I thought, that Joss was back in the same hospital where he was delivered, but now with some unknown and possibly life-threatening condition that might take him away from us. This time there was no excitement, there were no dreams of playing football and cultivating the next Beckham; there were no hopes of building some great dynasty, just an overwhelming feeling of despair.
Despite not being particularly religious, I prayed. I prayed for Joss, for Dianne, for Jamie – and I prayed for myself.
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