Narratives & Stories

Simon V's Story

Simon was a 19 year old student living in Australia when he was diagnosed with an inoperable kidney tumour. He died in a London hospice while travelling with two friends.

Dear Helen and Geoff

I am writing to you because I want to be part of the project you’re funding in George’s name. Like you, I have lost a son to cancer. Simon was diagnosed at 19 and died four weeks later, in November 1996.

It was so sudden a loss that it may not reflect many or even any of your experiences with George. I can only struggle to imagine what it was like to keep going through such a challenge for years.

Even thought there’s won’t be a lot of shared situations, I hope you’ll recognise some of the feelings. And perhaps difference experiences can sometimes throw a new light on your own.

I’d dearly love to meet you some time, despite the distance between us. And I want to thank you for the chance of putting Simon’s story to some use.

With warmest wishes,

Helen

Preface

On re-reading this account, I feel it’s very much written from my own point of view. Simon often becomes “my” son, not Patrick’s and mine. The feelings are almost all mine.

I wish it didn’t read in this way, but maybe it’s inevitable. I still haven’t come to terms with Simon’s death, and perhaps it’s only when I’m a bit more on top of it that I’ll begin to empathise with others experiences of it.

It’s also disappointing to find that so much isn’t here, though it’s so long. There isn’t much about the awfulness of losing at this age (as if any age were right a child to die). There isn’t much about individual nurses at the hospice who were, and have since been, just wonderful. There is nothing about my own friends who kept me afloat during the worst of all this.

So I recognise that this is just one view of what happened. There are lots of other, different views, my husband’s to begin with. But it feels good to be able to write about Simon,, even though I know now that my understanding of it all is quite limited.

Today is Monday. It’s three and a quarter years since Simon died. It’s three months since I was back at the hospice where he died. It’s only three days since I saw the friends who were with him at the hospice when he died – Tyson and Peter.

We see them far too rarely. They live in distant suburbs and I have a feeling of a huge, un-payable debt. Tyson and Peter are now 23 and 22 years old. They are tall, young men, Tyson with deep set dark eyes and longish black hair, Peter equally tall, ultra slim red haired. Peter talks, Tyson doesn’t much.

They seem just the same as when they went with Simon to London,, knowing he had only a few weeks to live. Sometimes I fear that, deep inside, I resent them for being alive while Simon isn’t. But I don’t. I love them, I feel they’re my ‘boys’ (though they’re young adults). They were always close, Simon, Tyson and Peter, but now these two have this unbreakable bond. Their ambition is to work together, though they know it’s not going to be easy to achieve.

Well, I keep putting off looking at the more distant past. In February 1996, Simon enrolled at Melbourne University in science. He loved physics and rather resented having to get through other subjects such as chemistry before he could specialise. It was a triumph for him to get a place at this Uni.. He’d messed around at school, was disorganised, and simply failed to do some assignments. He seemed dreamy to some of his high school teachers, but others saw him as stubborn and lazy. We dreaded parent-teacher interviews. He paid for his sins by failing to pass well enough to get a place at Melbourne Uni., and as a result he spent an extra year sitting some subjects to boost his Uni. entrance score. That was a terrible year for him, just marking time, having no money, no real bond with the other students.

I’m not sure why he was so set on Melbourne Uni. It was close by, but his sister Sarah was at the more distant Monash Uni doing law and didn’t seem to yearn for the prestige of Melbourne. After getting good marks the second time round, Simon was offered a place at Monash. This felt like another defeat – it was Melbourne or nothing. He wrote a special plea to the science faculty there, and was accepted.

First semester began March ’96. As the weather turned colder, he complained of backache, and we bought him a little upright heater for his bedroom – he could sit with his back to the metal fins. He also took to coming downstairs in the evening and squatting in front of the fierce gas heater, warming his back. He often seemed to have little energy.

I’m trying to put off the recollection of that time in October ’96 when he was finally diagnosed. Still, at least this rambling narrative will give you some idea of what he was like at 19. Quiet, not the excitable, shouting type like me. But not much like his quiet father either – not orderly and methodical. He was imaginative, and liked theoretical physics.

In his spare time, he and Tyson and Peter loved role playing games. I don’t know what this pastime is called and I never did understand it. All I could see was that it was very important to them. They got right into the roles allocated to them at their meetings and conventions. The male roles seemed heroic and violent, the stories gothic. I found it all a bit weird and it made me feel there were aspects of Simon that I had no comprehension of. But he hadn’t a girlfriend, Peter had no-one regular, Tyson’s seemed to be part-time, and so I suppose there was a gap to be filled.

So role playing and going to classes at Uni. filled his days and many evenings. On weekends, Tyson and sometimes Peter too would come and stay in Simon’s room. It was tiny used as a nursery by the previous owners, and still (to my eternal shame) had the rosebud wallpaper they’d put up. I seem to remember talking to Simon when he was in hospital, and offering to paint the room. He wanted it to be black.

Though his room was so closet-like, our house was handy as a meeting place, close to the centre of the city. I treasure those memories of two or three tall boys in our small terrace house, coming and going at odd hours, making the banisters shudder. My husband (Patrick) hated it. In one sense it was a problem for Simon too, since neither of his friends’ studied – one worked full time and one had a casual evening job. I think Simon felt under a great deal of pressure for the last two years of his life.

He did his mid. year exams, but seemed to be struggling physically. He’s always been asthmatic, and was very slim, verging on thin – emphasised by his height of six feet. Since he’s consistently seen doctors over the years, he didn’t mind going to the local clinic to get an opinion about his fatigue and backache. Perhaps they were so used to seeing him that they didn’t take the problem seriously enough. I think he went there ten or more times in September of ’96. I was unhappy about the clinic’s system – they tended to rush people through in the least possible time, and did tests on site that would be better done by a specialist service. For example, they x-rayed his chest; another doctor later said the film was useless. The also sent him to a physiotherapist.

Diagnosis

I’d been nagging Simon for months about going to the Uni. medical service. One day when he was feeling really bad during a physics practice, he did go. The doctor really listened to him, he told me, and wrote down a lot and asked questions. But Simon was due to go back to the local clinic and to get the x-ray results. The doctor must have felt that this clinic “owned” Simon’s case at this point.

I will never forget the Thursday afternoon when he came home from the physiotherapist’s. His head hung down, he couldn’t look at me, he just slumped. I’d been feeling concerned for months but had hesitated to interfere. He was 19, he was familiar with the medical system, and above all I was afraid that, if I suggested some course of action, he would reject it, teenage-style. Though Simon was very easy-going, he became understandably annoyed when I pestered him about his health. I remember once lifting up his T-shirt to see if he was wearing a singlet in the depths of winter – I’m not a subtle person. Simon was not impressed.

But this dreadful weariness after the physio, this posture of defeat, was a turning point. I made an appointment for him at the Uni. medical service for the next day, ?Friday, and asked Patrick to come too.

All three of us turned at the health service and went in to meet the doctor with the Polish name. He turned out to have a very English accent and lovely manners. Again he listened carefully, and then asked us if we’d noticed a weight change in Simon. It seems shameful now that we couldn’t answer. When I look at photos, the before and after effect is blatant. Anyway, he told us to take Simon for a blood test nearby. The Royal Melbourne Hospital is across the road from the unit; next door to it is a private hospital with a pathology service. It was late on the Friday afternoon and we hardly waited at all. But when we began to walk back to the car, Simon just couldn’t make it. He and I sat on a low brick fence until Patrick came with the car. I still feel heavy inside when I see that brick wall.

Over the weekend, he stayed in bed a lot of the time – I have no memory of any contact with Tyson or Peter then. Patrick and I drove to the outer suburb where Sarah lived, to pay her a birthday visit. Patrick still feels bad about leaving Simon home by himself that day.

On Monday afternoon, we all went back to the health service for the results of the blood test. The doctor told us that the white blood count was way up, and he’d like up to take Simon across the road to the hospital’s emergency department so that they could assess him.

At this point, I shoved Patrick aside to get to Simon, and put my arm round him. I still don’t know if this was right. I was showing my own fear but I think Simon was also rather stunned to hear that he should go to the hospital. The doctor made some reassuring comments, but there was a palpable feeling of apprehension.

We calmed down to a degree in the Emergency Department. It was the usual scene, people waiting, sitting, drinking terrible coffee from a machine, time going by so slowly. Simon was finally called in and a routine history was taken. We felt panic seeing him with electrodes stuck all over him, but there was a brief diversion when we found that the junior doctor had known Sarah at Uni.. Other doctors came and went and we had no idea what was going on.

At one stage a young registrar came into Simon’s curtained space to take amore detailed history. He told Simon there would be some extra personal queries that he may prefer to answer in front of his parents. I got up to go, but Simon shook his head wearily and said it was OK.

The questions ranged from the medical to the social. He asked Simon if he drank alcohol (we were used to offering him a glass of wine, and he also drank some beer). He, he didn’t smoke cigarettes. Yes, he’d tried marijuana a few times (I tried not to show my astonishment – I was so naïve as a parent). No, he’d never had any sexual intercourse.

Late at night they admitted him, and moved him up into a ward with 4 or 5 men, several of them elderly. We left him at last and went home, not knowing what to feel or think.

The next few days were an anticlimax. Nothing much seemed to happen. The first day, he was scheduled to have an ultrasound, but for some reason if couldn’t be done. The next day, he was asked to take part in a medical student’s exam, which he agreed to, and then spent an hour sitting in pain in a chair in the corridor. I don’t think they ever called him in. The unreal situation continued, with one of us having any idea of what was going on.

A small break in this dreary routine came when a student physiotherapist came and spent some time with Simon encouraging him to walk up and down the corridor, and talking to him about the paperwork he should do to defer his end of year Uni. exams. This contact with someone of Simon’s own age, and a student gave him a sense of connection to normal life, a sense that he’d be back in the real world before long. Though this never happened, it was so important for Simon to feel at this stage that it would. It was an approach that I only tried later – too late.

When the ultrasound still hadn’t happened after several days, I began to feel deeply frustrated with the whole situation. One of the nurses had mentioned that he might be discharged soon. So fearful and angry, I went to the nurses’ station and demanded to see whoever was in charge (a gentle young man named Trevor). I asked who was overseeing Simon’s case and was told here were two consultant physicians on that ward. “When could we speak to them?” “Hard to say when they’ll be around, one’s away and the other’s covering for him”.

I was consumed with frustration and fear, and decided that one thing I could do was to take advantage of our medical insurance and change his status from a public to a private patient. This went against the grain; I have an aversion to the idea of two different standards of care, and I felt the ward environment was OK. A 30-ish man in the bed opposite Simon’s seemed quietly but protectively aware of him. But the ward took private patients too; he wouldn’t have to change rooms. Perhaps, thought, the physician would make more of an effort to talk to us. (Nowadays I would jump up and down and refuse to leave the ward until they fixed a time for us to speak to the consultant).

So I asked to change Simon to a private patient, but no-one seemed to know how to do it. With a sort of angry persistence that is not at all my style, I went down to the office where we’d filled out his admission papers and asked to get the change to happen. It took less than 5 minutes.

Suddenly things began to happen (not because of my action, but because an ultrasound had finally been done). We saw one of the consultants briefly and he seemed very keen for Simon to be moved to the private hospital next door. I should have read the signs.

There was a sense of urgency now, but we were still confused. The private hospital, despite costing the earth, had no single rooms, only wards with two beds (as far as we could see). Simon was put in with an elderly man who was either phoning people or talking to them face to face as they swarmed around his bed. He appeared to be awaiting minor surgery.

Then they showed as the CT scans that had been taken soon after the ultrasound. The consultant physician brought a colleague, a kidney specialist, to Simon’s bedside and held up the films for us to see. They were pointing to a tumour on Simon’s kidney. I remember them saying that it could just possibly be a Wilms tumour, though this would be unusual at Simon’s age (it’s a tumour of childhood). If so, this may be treatable. If not – and I can’t remember what they said here. They’d mentioned ‘necrosis’ and my mind seized up. I had some idea that his meant the tumour was outgrowing its blood supply. Patrick tells me that the kidney specialist said it if it was what they suspected, “it would be quick”. This was Friday; they said they would know for sure by next Tuesday.

I went into shock after that. I’d suspected that something was terribly wrong, but this was beyond my understanding. Simon seemed to accept the idea that it was cancer; he talked about shaving his head ready for chemo (as he’s seen a boy at school do). That was the day Sarah visited. She’d been deep in her studies – it was time for her end of year exams in law. In a way typical of her, she’d given a lot of thought to what she should bring for Simon, knowing only that he’d been in hospital for five days and that it wasn’t clear what was wrong. She’d chosen a collection of balloons with cartoon characters.

I can’t forget these balloons. There was Sarah, taking hours travelling by bus, train and tram to visit Simon and cheer him up, at a time when she was flat out studying. And there were Simon, Patrick and I, confused, fearful, unable to talk openly about all the possibilities ahead. Did we mention cancer to her? I suspect no. I still feel terrible about Sarah that day; she came in with a smile, ready to treat Simon in her usual cheeky older-sister manner that we loved, and we almost ignored her.

The next day was the weekend, and Simon was allowed, even encouraged to leave the hospital and see a film with Tyson and Peter. It was an odd hiatus of near-normality white we waited for further results.

A kidney biopsy had been ordered, and for this we went back down the tunnel to the public hospital. We found the usual tumult there, and we slipped into that sense of helplessness you feel when you don’t know what to expect, who will do the procedure, or when, or what is involved. Eventually it was done and Simon was wheeled out looking ghastly. Apparently the woman doctor had had several goes at getting tissue and it had been excruciating.

I was aflame with anger as he described the operation. I rushed off to the desk and demanded to know who’d done the procedure. As you’d expect when staff are bailed up by an irate family member, they were unresponsive. I think they told me a name. I stormed back to Simon’s trolley planning complaints, letters, confrontations. Simon said wearily to me, “Mum, I don’t want you to make a fuss, I was just telling you about it”. This was the pattern for the whole ten days he was in hospital: I was ruled by my own fears and anger and couldn’t listen quietly to Simon’s own. Nor could I talk to Patrick, or listen to him. His rather quiet presence must have been reassuring to Simon. The worst thing I did, something I will never forgive myself for, was to quote five year survival number to Simon and Patrick at one stage (I’d been reading some medical literature). For me they represented hope. For Simon, they spelt death. He instantly burst into tears, and I fled from the ward.

We’d been told the consultant would give us the full story on Wednesday. By now Simon had been moved to another ward with a middle aged, healthy-looking man who seemed intent on privacy which suited us. We sometimes made eye contact as we passed his bed to leave the ward, but then he took to closing the curtains all round. Maybe we said “hello” once, maybe not.

More CT scans were ordered. Although the operator was a pleasant young man, it was another physical ordeal for Simon, lying in that hard metal tray. But the young man seemed pleased with he pictures, hinting that he couldn’t see metastases of concern (I can’t quite remember, I just know he seemed optimistic). I hung on to this suggestion of good news. There had been another glimmer of this when a professor had come in, sat by Simon’s bed, and tapped his chest. He’d told us that it just might be lymphoma (I think), and apparently this would be a good finding.

It wasn’t until the Tuesday evening that the physician came to see us. Before he even came, I knew. I heard the nurses asking Simon’s neighbour to move out to a day-room, because there was going to be a ‘family conference’. The physician stood, tall and uneasy, near the door and told us that Simon had a renal sarcoma. It had spread through his body and could not be treated. Simon had perhaps four weeks left to live. The local palliative care team had been notified and would take over Simon’s care.

It’s hard to write about that night. We all cried as we crowded together on the narrow hospital bed. Simon said that he’d shoot himself if he could get a gun, and I said if that’s what he wanted, we’d help. He also told us that he’d felt like killing himself the year before, the mark-time year, “but this is worse”. We’d had no idea he’d felt so desperate then, but now we all were.

As his mood changed from anger to sadness, I told him he’d always been special; his father had been present at his birth only. “I love you dad” he said. We talked about his lack of girlfriends, his uncertainty about approaching them. They feel just the same, I told him sadly. All these things we’d never talked about, and now it seemed too late. At one stage Simon said wryly, “five years looks pretty good now”.

I have no idea how long we talked and wept, but I remember the nurses hurrying us along, because “Mr W must come back, he’s very tired”. We eventually slept Patrick on the floor, me in the chair.

The next day was taken up with practical things. Simon had a blood transfusion. As he lay there, a nurse talked to him about looking after himself, watching his diet, and so on – giving him a sense that life was still important. Hearing this, Simon’s neighbour called out and asked for the curtain to be drawn back. He joined the conversation and supported what the nurse was telling Simon. I realised later that he knew what Simon’s prognosis was, and his wife said to me the next day that they’d “been through all this last year” – that must have been when they found that his cancer was no longer thought curable. She brought me a single, perfect white rose from her garden. To be acknowledged like this, and by strangers meant so much to me (and I suspect to Simon also).

The palliative care doctor came and introduced himself, but I had no idea where he fitted in (he turned out to be invaluable). The professor who’d hoped it was lymphoma came and told us he’d been on the Internet looking for trials of experimental treatments for this cancer, but there were none. It wasn’t something I’d thought about, but now I’m so grateful for his effort and caring.

Was it that day that Simon asked for all his friends to come to the hospital? It turned out that we knew few surnames, had few phone numbers. Anyway, they came, and he told them all together what was happening. Apparently some had called him a wimp during the year because he’d been unable to keep up with them. That must have hurt him so deeply. Now he was going to tell them.

This mood didn’t last long, and soon he wanted to see only his close circle, mainly Tyson and Peter. They came together to see him on the last day of his hospital stay, and we left them to talk privately. When they’d finished, they told us that they were all going to London.

I suppose it sounds bizarre, but we agreed almost at once. We didn’t think through the possibilities, we just rushed to arrange it. Everyone agreed on a two-week stay. Peter’s mother told us later that he came home saying, “I’ve got to sell something, I need money, Simon’s got cancer and we’re going to London”!! I often wonder how I would have reacted if the tables had been turned. Would I have let Simon abandon Uni. to go overseas with a terminally ill friend, with no outside support at all?

If we hadn’t thought through the possibilities, the palliative care people did. They told us that we needed a special permit for Simon to take his morphine out of the country. The doctor wrote a letter to Tysons’s employers, who doubted his story. He also, miraculously, had a contact in London; he’d met a young palliative care doctor not long before at a conference, and wrote Simon a letter of introduction to St. John’s Hospice, where this colleague worked. I don’t know about Patrick, but I assumed this was just some kind of insurance; I couldn’t understand that would be in need of almost constant care. In the end, of course, the hospice was so incredibly much more than just a back up.

Getting passports at short notice was tricky. I remember that Tyson had to go back to their former high school to get a signature on his application, and there was a degree of reluctance from the staff. On the day they were to leave, Peter’s father, driver-in-chief, was amazed to learn that Tyson had to pick up his passport en route for the airport.

All in all, it was a week of commotion preparing for the trip, and amid this Simon wanted to visit the flat that Tyson had recently moved into with a friend. The visit was a slight taste of normality; there was teenage mess, there were videos and take away pizzas. But his mood was very low when we picked him up. For the last few days, his voice had been no louder than a whisper, and so he found himself unable to take part in the chat. It seems odd that it mattered so much, but I wonder whether other people find this; it’s the small losses that can make or break morale in a situation like Simon’s.

So the palliative care service sent us to see a doctor at the hospital to work out whether something could be done about the secondaries in Simon’s voice box. Because of the need for haste, we hadn’t been give a ‘proper’ appointment. The consultant (whom we’d never met before) took us into a vacant office, called in a junior colleague and debated with him breezily about the two possible approaches to the problem. Somehow in such a serious situation, this lack of gravity helped. He gave us an appointment for a few days hence at a distant hospital where he would put Teflon into Simon’s throat. Instead of feeling that here was yet another burden, we felt hopeful. He didn’t promise success, but he was optimistic and we felt at last that there was something concrete we could do.

It was harder when the time came. We talked about it while we waited. I asked if he wanted some kind of encouragement from the chaplain. We’d talked a bit about what might be in store for Simon after he died – just a sentence or so – and the hospital setting, the slight sense of danger, the waiting, brought the subject back again. Eventually the chaplain came (a young rabbi; it was a Jewish hospital) and enquired cautiously about the situation. He prayed briefly, mentioning the trip as well as the operation, and then left. On a more practical level, an attractive nurse who had a son around Simon’s age talked to him about the trip (obviously thinking it was a bit foolhardy), and told him he’d do much better going with a sensible girlfriend.

The operation worked and then it was time to leave for the two weeks in London. At the airport, we felt uneasy, unreal. We were meeting Peter’s parents for the first time. No one came from Tysons’s family, but a bunch of close friends surrounded the boys. Photographs show Simon being a bit left out of the farewells. He was subdued and very pale, but felt (I think) that it was a good send-off. Peter’s mother suggested to me that their role playing games might be a kind of preparation for the unknown that lay ahead (a thought that has stayed with me). After they boys group hug, Patrick and I hugged him. Peter’s parents took photos, and then he disappeared behind the steel doors.

That was the last time we saw him alive. Yet I can’t remember ever thinking we might not see him again.

That first week they were away was an odd one for us. Patrick went back to work and I felt at a loss for something to do. Yet I was full of relief too; I felt simply incapable of keeping up the pace of the previous few weeks, either physically nor emotionally. It was almost exactly a week before I started to function again. Then I really knew what suffering was. I was desperate to join Simon in London; he refused quietly but insistently.

London

As soon as they’d got off the plane, the boys headed for the hospice (I keep calling them boys – I wish there was another term. They use the American ‘guys’ among themselves). I thought his visit was mainly to fill in the three or four hours before they could pick up the keys to their flat in Putney. Later though, the hospice consultant told me that Simon had been exhausted by the flight, and wanted some help. I’m still amazed at the way he was received at the hospice. It was a Saturday morning, three tall boys in black coats and with Aussie accents turned up, and yet with apparently no fuss Simon was given some boxes of liquid food supplement and was lent a wheelchair that he could use while sight-seeing. I used to be surprised at the depth of Simon’s trust in the hospice staff, but writing this makes me see that it began with this first visit.

I don’t know much of what the boys did in London. They visited the Museum of the Moving Image, and a few shops in Oxford Street that sold the kind of games they liked to play. My brother was in Europe on business and took time off to fly to London; his impression was that they were doing ‘the same kind of stuff they do in Melbourne’. He took them out to lunch at an Italian restaurant. He also mentioned Simon’s trust that the hospice could supply anything he needed; at one point they were going out, wanted a taxi, and had no number to call. “Ring the hospice”, Simon apparently said, “they’ll know”.

But my brother told me that things were a bit chaotic. He didn’t like the look of the place where they were staying, and there was a huge flight of stairs to the station – this was impossible for Simon to manage. So they were spending forty or fifty pounds on taxis each day. My brother managed to book a room for them at the hotel where he was staying himself, near Hyde Park. Moving them wasn’t a simple business, and I remember that Simon’s friends were reluctant at first, I’m not sure why.

Meanwhile Simon was keeping appointments at the hospice, and was admitted for the night on one or two occasions. But the staff would have to persuade him to stay the next morning until the consultant came; he told them he wanted to go out sight-seeing.

A week went by in this way, and then we had a phone call from Nicola at the hospice. She said they’d suggested Simon spend every night there. Simon was non-committal on the phone to me, sounding worn out – so much so that he had to stay in the hospice anyway. We were not overly alarmed, in fact I think we were relieved that the hospice were looking after him. I did tell the nurse that I wanted to be called if anything changed; we wanted to fly over. Yet when she phoned only a few hours later, I struggled to accept that his time was running out.

I spoke to Peter who was at Simon’s bedside. He asked us not to phone the room direct because Simon was sleeping. I loved the way Peter was protecting Simon, even if it was from us.

It was getting on for midnight in Melbourne. My brother, by then back home in Adelaide and very travel-weary, helped us to book a flight, but it wasn’t due to leave until late the next day. Patrick asked Sarah if she wanted to come, and my brother suggested we take Liz too, our sister who lives in Adelaide. She would fly over early the next day and meet us at the airport.

It was so hard phoning my elderly parents in Adelaide to tell them we were off. I’d hoped dad would answer, as he was almost always did since mum’s stroke a few years back But he was out in the garden, and mum picked up the phone. I told her Simon was dying and we were about to fly over there. She cried and cried. My mother is a wonderful person; she’s got an outlook on life that I lack, she’s bright and generous and optimistic. She’s had plenty of sadness in her life, and one real tragedy, the death of my older brother from a stroke at the age of 42. Her depth of grief was such that we never talked about Bruce’s death. It was OK to talk about him and his family, but not his dying.

So we got on the plane and watched the effects of the sunset over central Australia. Patrick said later that he felt something special when we passed over a striking rock formation – perhaps the Olgas. In the short break at Singapore airport, we decided to phone the hospice. They told us that Simon had died.

The rest of the trip was grim. Liz, bless her, sat next to Sarah and kept her talking. When we landed at Heathrow, Patrick pointed out a face in the crowd, Martin, married to a distant cousin of mine in London. He’d come to take us to the hospice. It was an almost silent drive to Grove End Road.

He dropped us off and then we had to go in. I dreaded going into Simon’s room, but also couldn’t wait to see him.

He was very pale, composed-looking. They’d dressed him in his favourite black T-shirt and jeans. It was hard to get used to the dyed hair he’d had done just before he left. It was his last chance for a bit of teenage rebellion – black dye with purple highlights. (It sounds worse than it looked) The nurses said the purple came off on their hands.

Of course we sobbed and sobbed. Then Sarah and Liz sat at the far side of the room while Patrick stood on one side and I on the other. I felt Simon’s limbs and kissed his face. If only I’d shown my love so physically when he was alive. He seemed dead to me – I was surprised to feel a conviction that he was gone, though not necessarily far away.

Patrick asked for a phone and we rang people at home. My father answered this time, took in the news, and asked if I would speak to mum. I said no. My excuse was that there were more calls to make; I feel ashamed of this moral cowardice. It wasn’t a lot to ask – just a few words to someone old and suffering terrible. I phoned my dear friend Marcia, who had advanced breast cancer, and she said to me, “It’s kind of them and not them, isn’t it”? That was exactly right. The simple, even trite things can be just what you need at times.

The hospice people helped us to arrange the funeral (the wonderful Sandra helping us all the way through, the lovely Paula bringing in endless trays of tea). We didn’t see Tyson and Peter that day, but the nun in charge of the hospice told us how great they’d been. They’d taken over the room, she said, there were bags of crisps and magazines strewn around.

The doctor who’d been on duty when Simon died talked to us about the last hours. He was so sensitive and kind. I noticed that he was concerned about Sarah, and offered to speak to her again, if she wished. I was sorry that she didn’t take up this offer.

The chaplain of the hospice took the funeral with the help of the local Anglican vicar who we’d asked for. We had no particular wish for a special funeral, since it was so far from home and we were still struggling with shock. Yet it became special. We were urged to use the hospice chapel, a small, beautiful centuries-old domed building with a side entrance off the corridor near Simon’s room. Nurses came. I’d asked that they not bring flowers; I felt they’d done everything to care for him, and that was enough. But Nicola and Debbie brought roses, an apricot-coloured bunch with a hand-written note: “A short time in our lives, forever in our hearts”. Tyson and Peter gave us a gift too, in joining the procession into the chapel behind Simon’s coffin.

Sarah and Liz spoke about Simon. The chaplain didn’t exactly give a eulogy instead he came forward and talked to Patrick and me about our loss. I can’t recall his words now, but I know there was a sense of real involvement and understanding.

The crematorium was a dismal experience. There were vast arrays of flowers, all fake except for those on Simon’s coffin. There was even a quavery electronic organ. It was so hard to let Simon go. I’d said I didn’t want the coffin to slide back out of sight, so we just sat through the brief ceremony, copied the priest in sprinkling holy water on the coffin, and then left.

Afterwards, we went to lunch with Peter and Tyson, at the Italian restaurant where they’d been with my brother only a week before. Patrick and I had been hoping they would tell us all about Simon’s last days, but Patrick pressed them too hard and it was the wrong time. The only thing they said was that Simon had thought about making a will in the last week, and wanted Peter to have his treasured computer game set-up.

We, or at least, I will always want to know what it was like for Simon in those days in London. Patrick feels he must have woken every morning to the thought that death was near. I just don’t know, but I have an enormous respect for the care he was given at the hospice. The nurses were loving, the doctor compassionate and caring. The receptionist/administrator, Sandra, was endlessly helpful and understanding – quite special. They allowed Simon to face the end courageously. I feel he was able to keep on joking with his friends almost to the last because he could tell the staff his fears (reading between the lines of his file).

Perhaps I’m too attached to the hospice. But they continue to help me to grieve, and I feel I still need them. Paula sent us a watercolour from London that reminded her of Simon. The chance to write this story came through the social worker at the hospice. The memory of Simon seems to live on there.

The staff and Tyson and Peter did what I would have liked to do – they accompanied Simon through his dying. Simon was wise in going to London. These people weren’t his parents, they loved him and cared for him as if they were.

PostScript

Just to add a little more to the story: we had a wake for him in Melbourne a month after his death. It helped us to see his friends, meet a few we hadn’t known, but it was a difficult event. I wish we’d had photos of him, or some sense of what Simon was. Seeing the notice in the newspaper, Simon’s neighbour from the private hospital wrote us a letter I treasure, expressing his admiration for Simon’s courage, hoping he’d enjoyed London, and revealing a true empathy. So I was very saddened to read, a year or so later, that he in turn had died. A remarkable man. And we had a remarkable son.

What were some of the problems that arose from Simon’s life-stage?

1. Too little, too late.
   • Trying not to be an interfering parent.
     I was beside myself with concern for months, but did nothing effective because of this stupid notion that it would be better for him to “own” the problem, to handle it his way. I felt he was too old to want me to accompany him to the doctor.
   • Poor quality medical care.
     He was too young to know that he was not getting a good service from the local clinic.
   • Acknowledging that something was really wrong.
     It seems natural for a boy in late adolescence to cram too much into his life. I think there was a vicious circle: he felt tired and in pain, couldn’t keep up with everything, got behind with some of his Uni. work, felt bad, etc, never stopping to say how awful he felt.
2. Communication.
   • With us:
     All the above problems were made worse because I didn’t know how to talk to Simon about personal things, and neither did Patrick.
   • With doctors:
     In hospital, all information was given in front of Simon. I felt this was right for Simon and for us. There was no sense of going behind his back. The only time this was done was when my sister from Brisbane, a GP, spoke to the physician and he gave her the grim news before he’d confirmed it with us. My husband has never forgiven Julie for revealing this prognosis in her conversation with us. We needed to have some hope, just as Simon did. (I was in so much shock and confusion that her message didn’t register with me).
3. Siblings.
   Obviously it’s tough on sibs of any age, but for one of ours it was terrible Sarah hardly knew what was going on. It was almost easier with our older daughter. She has an intellectual disability and so we were forced to simplify. I just don’t know what it’s been like for her. Sarah was at a critical stage in her studies. Law students here are selected by firms before they begin their final year. So these were the exams that would decide her future, and she missed them by coming to London. She sat for supplementaries in January while still overwhelmed. Later, she told me that for six months after Simon’s death, she’d lost all her motivation and could hardly study. In the end, she was taken on by a firm she liked, but it was just a terrible time for her to go through this experience. She still suffers, of course.
4. Grandparents
   Simon was a favourite of my mother’s. My parents must have felt so powerless to help, so desperate. Dad, a pensioner sent him $800 for the trip. He was also very much in favour of it, though I was sure he’d disapprove. “He’ll see something new every day”, he said to me. Seeing them for the first time after Simon’s death was unspeakably painful, with the memory of my own brother’s death reawakened.I felt I’d burdened my parents. His other grandparents lived in South Africa and had never met him.
5. Friends
   They are so central to a young adult’s life; and Simon was so lucky that his were loyal and brave and willing to drop everything to go with him. They gave him quality of life. They did more than we could, because of Simon’s age and his need to be independent of us.
6. Spouses
   It was impossible most of the time to handle this as a team. Just keeping our heads above water was all we could do. I’m always pessimistic, Patrick always hopeful. So he was better for Simon to be with, but the doctored tended to address me more because I seemed less overwhelmed with it all and had some medical knowledge. This is not relevant to Simon’s age, but I feel the need to say how hard it has been to do any grieving together. We did go a few times to see a counsellor who specialises in grief and loss, and I found that very good. It’s not Patrick’s thing at all, but I think he felt the two sessions were helpful. After that he wouldn’t go. I see a psychotherapist myself weekly, which helps me.
7. What’s left behind
   When my brother died, he left a wife and three terrific kids. The cliche is true: he lives on in them. We feel we have only photos of Simon, and I often have an irrational fear that he’ll be forgotten. Our house feels empty (he was the youngest).
8. Fitting in what hasn’t been done.
   Simon hadn’t even had a girlfriend; he hadn’t experienced intercourse. He and I talked about this a bit in hospital. A friend approached the local cancer information service, who have someone specialising in sexual matters and cancer. She was going to arrange a visit to a sympathetic prostitute, but Simon was never well enough. Simon and I talked quite a lot about how we should manage this – it was a huge loss for him, among many others.
9. How Simon saw his own situation
   Simon seemed to accept his fate totally, very soon after learning of it. He said to us that people his age often died in car accidents. So his age group gave him a hold on (fairly) sudden death – i.e. his life stage was a benefit of some kind in this instance.
10. Spirituality
    I suppose values and beliefs are being consolidated in early adulthood. Simon sang in the Anglican cathedral until his voice broke, and then was no longer interested in the church. But he had the idealism of youth. He admired the Dalai Lama, fasted for famine relief. When we realised death was near, it seemed natural to talk about what would happen after, though we’d never ever spoken of spiritual things before. It was too hard to say much once we’d started. We didn’t talk about the sort of funeral he should have. I hope he was able to talk to the nurses in the hospice about dying. I wish I could have done more of this. I’ve lost any attachment to organised religion myself – not all that pleased with God either.