SM Burgess

We drove home from the Queen Elizabeth hospital in near complete silence that afternoon, Dad and I. This would be the last such trip, which normally would have been a cause for optimism or at least relief, but the sombre circumstances cast a melancholic air.

“How are you Mr. Burgess,” the doctor had asked, the tone of his voice foreshadowing the message he needed to get across.

“Well, I’ve been better,” Dad responded in a vain attempt to add a morsel of humour.

“I hear you have been not very well at all,” the doctor leaned forward and glanced at me.  I shook my head.  He then went on to explain that the treatment Dad was receiving, an infusion of anti-cancer medication every 3 weeks, didn’t appear to be working and that in fact it may be detrimental to Dad’s quality of life. Furthermore, the 3-hour round trip from Dad’s home in Powys, coupled with the waiting around, was also taking its toll and he and the team had been considering whether continuing with the treatment was the best option, for Dad.  At this point, his opinion was that we should take a different approach and focus on making Dad’s life as comfortable, pain free and enjoyable as possible, for the time he had left. 

There was a seemingly endless pause as Dad and I tried to take in what had been said.  He looked at me, his hands resting on top of his walking stick, now trembling slightly.  There was an expression of confusion on his face, pleading with me to clarify.

“OK, so you are going to stop the 3-weekly treatments…?”

“That’s my strong recommendation.  We can continue if you really want to…if you think that is the best thing, but I would obviously advise you to accept my recommendation.”

“No more infusions, then,” Dad asked.

“No.”

“Or scans?”
“No.”

“Blood tests?”
“No.  I suggest you stay home, get comfortable and pain free and make the most of every day.”

I put my hand on Dad’s.

“Thank you, doctor,” I said, “Dexamethasone helps and the liquid morphine, isn’t that right, Dad?” Dad nodded.

“I can prescribe more of those now,” the doctor swung around in his chair and began tapping away at his keyboard.  Dad took a deep breath,

“Thank you for your honesty and plain speaking, doctor.  Dare I ask about a prognosis?”  The doctor stopped typing and looked back at both of us,

“I don’t want to alarm you,” he said, “just take every day as it comes and try to stay positive.”

We drove back through Stourbridge, Bridgnorth and Much Wenlock.  All the time I was hoping Dad would start to open up about how he felt…start to engage in a conversation about the inevitable, a conversation I wasn’t confident enough to initiate.  Perhaps it was far too early for that.  We were on the A5 approaching Shrewsbury when he finally said something,

“Well, at least you and Derek won’t have to do this anymore.”

“That’s true.  We don’t mind either way, though, it’s you that matters. At least you won’t have to go through this anymore.”

“We’ll have to tell the others when we get back, it might be a shock.”

“I’ve already told them. I messaged them while I was waiting for your prescription.  Joe too.”

“OK, that’s good, thanks. I don’t have to go through it all again, then.”

“We’re all happy to talk about it, Dad.”

“Nah…too depressing.”

We got back home and Dad settled himself into his favourite recliner in the lounge while I debriefed my sister Melissa and her husband Derek on the conversation with the doctor, in the kitchen.  My wife, Amy, who sat with Dad in the lounge told me later that he had broken down in front of her and sobbed.  He apologised to her and blamed the ‘magic’ going on in his head.  She didn’t need an apology, of course, but Dad needed to give it.

That afternoon a few of the neighbours popped in as they had been doing lately.  I was surprised to observe that Dad’s way of coping with the news he had been given was to tell everyone, straight away,

“Before anything, I need to tell you something.  They’ve stopped my treatment…so that’s it.  Just want you to know, that’s all.”  Reactions varied little, with most offering sympathy and concern.

“No, no, it’s alright,” Dad would respond, “we just need to get on the best we can.”

From that day things progressed quickly, despite some unedifying bureaucracy resulting from the fact that Dad lived in Wales, but his GP was based in England, just over the border. I say unedifying because the issues seemed to stem from a concern over budgets, rather than a focus on Dad’s wellbeing.  Eventually someone sorted things out, the district nurses, I think, who became stalwarts of support in Dad’s corner, right to the end.  They also arranged for hospice at home care for Dad, from Severn hospice, another group of selfless professionals who dedicate themselves to caring for the dying.

“You do know we only come into the frame when there is less than 6 weeks to go?” one of them said to us in hushed tones on her first visit, while Dad was out of the room.  We didn’t know that, and I remember her words clattering into my brain like an unwelcome, noisy intrusion.

Brother Joe came over from Australia and spent some precious time with Dad, looking after him, trying to feed him and sometimes cleaning up after him.  I remember turning up one day and Dad said,

“Your brother’s a hero. I didn’t make it to the toilet earlier and well,” he gasped, his face in a grimace, “I’ve never seen so much shit! Joe cleaned it all up and got me dressed.  God bless him.”

We took turns looking after Dad, me and Amy, Melissa and Derek and Joe, sometimes together, sometimes in shifts.  There were times when Dad’s small bungalow was crowded; all 5 us would be there and then 2 district nurses would turn up and one of the neighbours would check in and then the hospice at home team would arrive.  Dad had bouts of confusion that would start in the early hours of the morning when he would get out of bed at 1.30am believing it to be much later. He’d complain that he couldn’t tell the time and didn’t want to be unprepared for any visitors, so he would get up and sit in his recliner in the lounge until daylight.  One time he refused to have anything more to do with his new wristwatch,

“It’s complete rubbish,” he told me as he flung it to one side.  “It keeps showing me the date in French!  Dimanche, it says.”  I had a look and sure enough, the day window displayed a perfectly clear SUN.

“It’s not French, Dad, it says SUN…for Sunday.”

“Bloody rubbish,” he repeated waving me away with disdain.

Grumpiness also got worse, and I found myself the brunt of it quite often.  It bothered me a lot at first, and I apologised to others for it.

“Don’t worry,” one of the neighbours said, “he has a lot to be grumpy about, doesn’t he?”

That made me think a great deal.  His internal torment must have been unbearable sometimes.  Occasionally he would just want to be alone and shout “Go away!” at anyone who tried to communicate with him when he felt like that. I wanted desperately to comfort him in some way, to help him accept things so he could rest easier, but he would have none of it.  He had never liked people being sorry for him and would always talk himself out of any difficult situation, looking for and overstating the positives, to ensure no one ever patronised him in that way.  I guess in those days following the last trip to Birmingham, when the end was in sight, he just couldn’t apply his usual logic and therefore talking about it had no purpose for him.  Despite that, I still regret not trying harder to have a meaningful conversation, although on reflection, I’m sure any meaningfulness would have benefitted me more than him.  I’ve played out that conversation that never happened numerous times in my head, since Dad died, and have it going something like this:

“So, son, it has come to this.  Not long now. Are you and the rest of the family coping OK?”

“Yes, Dad…well, we all have our moments, but right now we are all focussed on you.  How are you dealing with it?”

“Ah…you know. Sometimes I’m scared shit-less, but most of the time I try not to think about it.  As you can probably tell.  I can’t believe it all just ends, but then again, I’ve never been the religious type, so what else is there?  What do you think?”

“I’m not religious, either, but I don’t believe it all just ends, Dad.”

“How do you mean?”

“I believe in the first law of thermodynamics.”

“Let me think…that’s the one that says energy can never be destroyed, only changed from type to another?”

“That’s right, or more formally; total energy in a system remains constant, although it may be converted from one form to another.”

“And…?”

“Well, say the universe is one big system and you, the living Rod Burgess are one small parcel of energy within it, when your mind and body die, the energy that sustained it will convert to something else in the universe.  In other words, when you were born you borrowed energy from the universe to fuel your life and when you die you give it back to the universe.  So, it doesn’t all end, your energy carries on, albeit in a slightly less orderly manner.”

“But me, Rod Burgess, finishes?”

“I’m saying the spark of energy that gave you life is returned and put to some other use, but Rod Burgess definitely doesn’t ‘finish’ either.  The legacy of your life and personality, which has influenced countless people also lives on in those people.  Think of how you have shaped our lives, me, Joe and Melissa and those of your grandchildren to name just a few.  Things you have said and done, the way have gone about things, your values, your humour, your love of life and your love for us has created a mark on us that will live on long after you are dead.  It doesn’t just end, Dad.”

The conversation ends with us both in tears at first and then laughing as we share a whisky.

After Joe left to return to Australia Dad continued to decline.  It was now towards the end of October and the increasingly chilly weather alongside diminishing daylight added to the malaise.  Despite the heating being on full all the time, creating an almost unbearable atmosphere for the rest of us, Dad would still take to his bed clad in layers of warm clothing and a scarf around his neck.  It was getting almost impossible to convince him to eat,

“Come on, Dad, you need to eat to keep your energy up.”  He sat forward and glared up at me from his recliner,

“I know I should, but if I eat, I then have to deal with it!”

What he did eat was invariably sweet things, jelly, custard, cake.

“It’s the only food I fancy, these days,” he would say.  “There was a time when I would never eat sweets.  Savoury was always my thing.  Not now…”

A few days before he died, the last real conversation I had with him surprised and delighted me.  It was not the conversation I had planned. I don’t think it was a conversation he planned.  It was spontaneous and off the wall and I’ll never forget it.  Dad had been to the toilet and shuffled back along the hall to sit opposite me at the kitchen table, which was the first surprise.

“Right,” he bellowed, banging his walking stick on the floor.  “Let’s do some nonsense poetry.  Anything you like, just get it down.”  As quick as a flash, Amy shoved a pen and pad of paper in front of me.

“It can be any old rubbish,” Dad confirmed.  “I’ll start.” He drew a deep breath and smiled at me as he spoke,

“The man who wore his scarf in bed, said it kept the draught from his neck and head…”  I scribbled the lines down.

“This is great, Dad, did you just make that up?”

“In the toilet.  Have you got that all down?”  I nodded.

“Then he found a new way of copin’…” he paused.  I tried to join in,

“Close the windows, or something…”

“That’s it!  Don’t leave the blinkin’ windows open.” Another pause as I wrote this line down.

“Now,” he said, “he can sell the scarf!”

“I’ve got it,” I said. “The very next day in the Daily Mail, as small personal ad read, ‘Scarf for Sale.’”

“You’ve got it, that’s perfect,” Dad laughed out loud and clapped.  I beamed.  “Now read it back.”

“OK, so it goes like this,

The man who wore his scarf in bed,

Said it kept the draught from his neck and head.

But then he found a new way of copin’

Don’t leave the blinkin’ windows open!

The very next day, in the Daily Mail,

A small personal ad read, Scarf for Sale.”

Dad laughed and clapped again, as did I.  It was the last really significant moment we shared with each other.  Like I said, it wasn’t what I was expecting, but it was the way Dad rolled.  He would never have countenanced anything that was in any way maudlin or self-indulgent and what could be less so than a nonsense poem.

Just over 3 weeks later I read the poem out at the start of his funeral, and it set the tone for the proceedings which followed, a celebration of his life and a thanksgiving for his legacy.