Narratives & Stories

Simon's Story

Simon was a student when he was diagnosed with choriocarcinoma. His story is told by his mother in a journal she wrote as a tribute to him.

MODERN LIFE IS RUBBISH

A LOVING TRIBUTE TO
MY GORGEOUS BOY

I have written this Journal as a
Tribute to the very brave and
Long battle Simon fought.
He was so very courageous
throughout his illness.

I trust that by reading this short
account of his journey into hell you
will know how he suffered and be
amazed at his resilience and marvel
at his attempts to carry on as
“normal”, as in his words
“cancer is for wimps”

The Diagnosis
Drugs Don’t Work
The Treatment
Mr. Cool!
Hell!
ITU Nurses
In Remission?
Homecoming
Little Ray of Sunshine
Cheerful Charlie Carcinoma
No distance Left to Run
Armageddon
Love Hurts
Busy Times
Viva Espana
Mr. Cool – contd.
Euro 2000 – Massive
Cancer is for Whimps
Bestest Friends
It’s Just Not True
One Step Forward, Two Back
It’s Only a Game
Birthday Girl
The Beginning of the End
The End
Epilogue
So Darkened Am I, That All Day My Day is Night

1. THE DIAGNOSIS

The 23rd March has always been a bit of a joke in our family, it may be Cindy’s birthday but it is also the anniversary of my Hysterectomy (shades of Woody Allen here). It is now more significant than ever before, it is also the anniversary of the Cancer Kids journey to the depths of hell. Ours too, but I was always more aware of his despair even though he took it all so well. Even when they told him he would be sterile and would lose his nuts and even maybe his life, he was so ice cool it sent shock waves of desperation through me. I am Mrs. Stress and living with Mr Cool and Son of Mr Cool was always difficult but then it was nigh impossible.

The 25th March, after 48 hours of desperate limbo we found ourselves in a side room in the hospital (from where the view from the window is the chosen site for the new football stadium – It’s a SIGN I told myself – most people look for a church spire for comfort – not me). Dr M was the consultant oncologist – a very clever and rather famous in his field, man with the most irritating manner. OK, he knows what he is doing and I should be very thankful he is on Simon’s case but someone should tell him his bedside manner needs some serious restructuring! There we were in a complete state of shock, disbelief and blind panic and Dr M is jumping around the room with such excitement and euphoria that he had been chosen to treat Simon’s disease.

Apparently there have only been, on average, three cases of this type of cancer per year in ten years. Before then you died. The markers in his blood amounted to 200,000 and were climbing rapidly and we should be eternally grateful that he (Dr M) was in the right place at the right time. Sorry, but could not agree – eternally grateful for what? Grateful my son had been diagnosed with Choriocarcinoma (Simon’s explanation – sounds like a small Mexican dog) which was extremely life threatening. He would probably lose a kidney, certainly his testicles and maybe a large chunk of abdomen. Apart from the treatment making him infertile and being unable to produce sperm to save in a sperm bank for future use should he wish to become a Father one day, puking for England, needing endless transfusions of blood, and God knows what other side effects the chemotherapy would cause, it was rather difficult to share Dr M’s enthusiasm.

2. DRUGS DON’T WORK

The traumas we were about to face over the next 12 weeks were hurriedly explained and brushed over rather lightly – it went like this …

Simon will need to visit the sperm bank and produce sperm for them to bank as this treatment will render him infertile, oh and by the way, he will also need an Aids check just in case (!!!????). He must have at least 4 pints of blood immediately as his life is in danger with only having half the amount of blood requited to survive in the human body (eeeehhh). We will arrange for morphine intravenously to help him cope with the pain (BTW, the scan had revealed a tumour 11cm big attached to one of his kidneys), then we shall proceed with the B.E.P.2 (aaahhh).

It will mean five days of chemotherapy in hospital with 2 × 24 hours infusions of more chemo midweek the following two weeks. This pattern is repeated 4 times making a total treatment time of 12 weeks. At the conclusion of the course his markers will be measured, then a date set for surgery to remove his nuts, a kidney and whatever else needs to be tidied up. A short time to recover and Simon will be fit and raring to go back to University in October! – WRONG – but more later!

It all seemed straightforward so why was I feeling like shite? Those early days travelling backwards and forwards to the city were so very traumatic I fail to recall how I got through it. The seriousness of the situation we all found ourselves in was so frightful I almost hoped we would be wiped out on the M3 by some wanker in a BMW – at least I would not have the wild thoughts and macabre images already mapped out in my mind as Simon’s existence for the next 12 weeks.

How do I tell my family, how do I tell my friends, what do I say to my employer, how about acquaintances or those cretins who pester you with telephone sales.

‘Good afternoon Mrs Robinson, my name is Tracey and I am phoning on behalf of ABC continental apartments. This is your lucky day – you have been chosen to partake in a free holiday in one of our luxury apartments in the Costa Del Sol …

....‘Stop right there bitch! This is certainly not my lucky day as my son has been diagnosed with cancer, his pro-longed treatment prevents me from taking any sort of holiday away from the hospital and should you phone again with such mind-numbing trivia I shall make it my duty to shove this phone up your arse – now piss off and leave me alone! – Or words to that effect anyway.

Being the coward I am I left it to Manda to break the bad news to all and sundry as I am still fighting with the belief that it is all my fault as I must have done/not done something during his short life to cause this nightmare. Apparently, cancer is foetal and is formed in the foetus during conception. As the sperm touches the ovum, rogue cells are made and lay in wait to pounce later in life. Little bastards. Maybe it was because I smoked around him but whatever the statistics or medical theories or hocus-pocus cause, I know that in some way I must have contributed to the nightmare as it not, why Simon? I have tortured my mind whilst searching for reasons why, he does not deserve this.

Don’t get me wrong, I don’t mean that all other cancer patients must deserve it or have done something wrong in their previous life (I’m no Glenn Hoddle and I wouldn’t have picked Darren Anderton for England either) to deserve their sufferings. It’s just so unfair, Simon was enjoying his life so much, he’d got into the University of his choice with very good A-level results, passed his driving test at the 1st attempt, lived with some great friends and was having fun at last after being rather insecure between the ages of 14 and 18. He was popular with young and old and we missed him so much when he went away to University – did my thoughts of loss and caring somehow convert into cancerous cells via thought-waves? Eeehhhhh! I’ll get me coat …...

So being the brave bastards we are we just got on with it, as you do and following horrendous bouts of sickness, infections, constipation, rapid weight and hair loss (love him – this was the hardest part for him – he hated losing his hair and was so offended when anyone said it suited him to be as bald as a coot). They probably thought they were being kind but they were NOT.

3. THE TREATMENT

5/6 days as in-patient being bombarded with chemicals.

Home for 2 weeks with two visits in between for a Bleomycin infusion

This was repeated four times during the latter part of March, through April and completed end of May.

So the final day arrived, we said our thank you’s, kissed all the lovely nurses goodbye, presented them with the biggest basket of fruit this side of Covent Garden and went off feeling very smug that we had beaten this bloody illness.

Dohhhh!!! The operation was time-tabled for Thursday 24th June and he was to go in to the city General on Wednesday 23rd June for preparation. We went down on Monday 21st June for blood tests, scan and a meeting with the surgeon who was performing the operation. It was decided to remove one kidney and only one testicle after all. So although very daunting we were anticipating this nightmare reaching its conclusion.

Boy, wrong again – on Tuesday 22nd June we were to receive the first of many devastating phone calls. The operation was OFF as the bloody cancer as back, which meant more chemo over the next few months!

The roller-coaster of chemo punishment commenced again with an even stronger drug infusion. Simon was puking for the World, and not only did he have to suffer two more months of wicked, soul destroying drug injected hell the VIP treatment wasn’t even touching the cancer!

Whilst undergoing this treatment it was decided to harvest his stem cells should they decide to proceed with an even higher dose of chemotherapy later. (Stem cells are responsible for producing the three main blood cells – RBC (to carry oxygen) WBC (to fight infection) and Platelets which help your blood clot). In order to enable the collection of these stem cells Simon had to have daily injections of a blood and bone marrow growth factor (G-CSF).

The doc explained he may experience some aches and bone pain during this course of injections but there should not be too much discomfort. WRONG AGAIN – poor Simon suffered badly with the symptoms, resulting in an emergency visit to the local A. & E. he was in so much pain from the bloody injections. Apparently, 1 in 10 patients are unlucky enough to experience high pain. The local hospital were at a loss so he was transferred by ambulance where we were informed the course of injections had not worked and he would have to go through another course of daily injections together with another blast of VIP.

4. MR COOL

Simon drove himself and big Phil down to the hospital expecting a blood test only but they insisted he be admitted to commence his VIP treatment – Oh joy – he was gutted he had set his heart on a ‘Stella Weekend’ including going to the home game on the Sunday (15th Aug). But the doctors agreed they would timetable his treatment and G-CSF injections so he could bunk off from the hospital and see the game. He was so brave, so cool – it was more important to win than have any life-saving treatment. (We won 4-1, it was pouring with rain and Frannie and Karen came to see Simon in the hospital after the game). Following this course of treatment his next blood test confirmed his stem cells were ready for harvesting.

This resulted in us, during the forthcoming week, driving up and down the bloody M3 during un-Godly hours for Simon to be plugged into the stem-cell removal machine only to discover his blood level was still not low enough for a successful removal to take place. Then doh! At last on the final day his blood level was low enough for the stem cell removal to go ahead. Simon was plugged into a machine called a cell separator. This machine separates your blood then takes the stem cells needed and returns all of your other blood to you. Bit like a scene from ‘Aliens’ but Simon didn’t appear to be suffering any discomfort.

His stem cells were then taken to the Lab and stored in special bags in liquid nitrogen and frozen. He declined their invitation to visit the labs and view his frozen stem cells as he had never been keen on frozen yoghurt!

The following week we visited the clinic only to be informed that his tumour markers were still rising and he would, after all, need high dose chemotherapy with a stem cell transplantation and arrangements had been made for him to commence his treatment on Monday 6th September.

Meanwhile, whilst all this crap, chemo treatment, blood tests, injections, nausea, excruciating pain, fatigue, were happening Simon was still making gigantic attempts to ‘carry on as normal’. We attended away games and at home, quiz night, drinks and meals out with his friends and pub night with Big Phil. It is difficult to imagine what he was going through – he never complained, always thinking of others and their expectations of him.

5. HELL

Monday 6th September, we arrived at the hospital at 1.30 after waiting around at home for the summons. Apparently the transplant nurse, transplant consultant, registrar, etc., were in discussion whether to go ahead or not! They thought it was very risky as Simon’s stem cell harvest was not good enough but decided to press ahead with the transplant as the chance of the cancer spreading was greater than losing his life through an unsuccessful transplant.

The registrar read us the riot act – the treatment was going to be very tough and Simon should expect to be extremely ill for a few days, (he was – but for more than a few days). He would probably get infections (he did), low blood counts which would mean blood and platelet transfusions (he had bucketsful). Dr M kept insisting this treatment was necessary – with hindsight I realise that he was trying to convince himself more than us – but he did keep on.

The room in the isolation unit appeared quite comfy, with an en suite shower and toilet, colour TV., Video, radio and cassette unit, private telephone line, a bit like a 5-star hotel. The Physiotherapist visited with exercises to help build up his muscles after treatment – HA!! Simon (bless him) listened carefully and threw himself into his exercise regime with enthusiasm (it cuts me up to be reminded – he/we had NO idea!)

Manda visited the next day – I had a day off as I had decided to step back a bit and not to fuss and visit only when necessary – boy! Was I going to be shocked during the forthcoming days! The next day the high dose chemotherapy had kicked in and all my efforts in providing meals for Simon whilst in hospital (the hospital food was atrocious) were comical in the end. He was so sick it was decided to feed him intravenously with Tilly food. This was 3 litres of high vitamin food down his line per day to enable his survival. And this was only the third day of five days of treatment, the next two days proved to be even worse. More toxic chemicals, more vomiting, even more diarrhoea. Big Phil visited Thursday evening and was very good with Simon, even holding his vomit bowls for him. It was very heart-wrenching to witness Simon’s ‘Mr Cool’ act for Phil’s sake. I thought then that it was time to bar all visitors for a while, as Simon found it so physically tiring to talk and keep up a conversation. He was to make this decision himself eventually – following the transplant which was to commence on the following Monday.

For my birthday in August Simon had bought me M & S vouchers so before Cindy and I went to the hospital to be with him during the transplant we had a shopping spree – I still find it hard to believe that with the vouchers I bought a very elegant black dress which I never wore until his funeral (did I know?!)

The transplant commenced, with was administered through his long line, over the next two days. At first all seemed well, we were even chatting and laughing with the nurse and registrar whilst Simon was munching on ham rolls and monster munch pickled onion flavour crisps (previously he couldn’t eat a thing without vomiting). But hell soon kicked in again – he was allergic to the preservative his stem cells were kept in and all sorts of medics were summoned and the rescue of his stem cells culminated in half a dozen medical staff looking very relieved that Simon had not died during the transplant. Cindy and I were in a state of shock but were assured that he would be fine within a few days – lying bastards. The following two weeks were a roller-coaster of the usual vomiting, high temperature (39.8 – 40.2) endless diarrhoea, sleeping for 20 mins (sometimes 45 mins – now that was a bonus!) His blood count took a while to pick up so more blood and platelet transfusions together with transfusions of anti-biotics as the dreaded MRSA infection (Mathacilin Resistant Staphylcoccus Aureous – resistant to all known antibiotics known to man!) had got him. He had scepticaemia (blood poisoning) and all the antibiotics and antifungal drugs wer no use. His lung function was crap. He had double pneumonia, metastic cancerous tissue and the area of the lung without infection or cancer had been damaged (permanently) by Bleomycin. What chance did his lungs have?

Hence he quickly went into DIC (Disseminating Ishaemic Coagulation) a huge bleeding disorder caused by multi-organ failure as a result of septicaemia. Manda knew that this was a very serious condition, which rapidly leads to death (she did not tell me).

By Monday 20th September the doctors were getting concerned as the infections were not improving, his kidneys and liver were malfunctioning which meant that the fluids he was receiving intravenously were not being disposed of correctly and were leaking everywhere into his body resulting in him blowing up and looking like the Michelin man on a bad day! And on top of all this shit, pneumonia, viral and fungal infections had set in and things were not looking good. I knew things were really bad because had played Derby and had thrown away the lead (again!!) and Simon could not give a toss – he was so ill the result did not matter a bugger. Manda and I were very aware that the doctors were more concerned with his cancer markers and were not looking at how his body was deteriorating – so scary.

But the physiotherapists insisted on coming in every day to see if Simon wanted to do his exercises! Bloody idiots! Every time he moved he ejected blood, vomit, diarrhoea, from each and every orifice in his body, and apart from that he was so weak from lying in bed it was impossible for him to even stand up let alone exercise. I think it was the third visit that I sent them away with suitable expletives ringing in their ears!

He was also on a morphine pump to relieve the pain he was suffering but they would turn it of 3 times per day as they were concerned he would become reliant on it. Again with hindsight, it is a fact that if a patient is in pain, they will not become reliant, it is only when morphine use is abused that one can become an addict. Sometimes I found their care very cruel so was gratified that I was able to stay with Simon 24 hours a day to administer TLC.

Tuesday 21st he was admitted to the Intensive Care Ward things were looking very serious now. The ghost-busters ambulance turned up and attached him to a C-PAP system (this prevents his lungs from collapsing thus drowning in his own fluid). And upon arrival was immediately attached to life-support machines blinking, flashing, pumping, wheezing, I thought the previous weeks were bad, compared with the next few days they were a walk in the park! Poor Simon was terrified as he and we all thought he would never recover. Manda, Ray and I between us never left his side, it was horrendous.

6. ITU NURSES

We were to discover that ITU nurses are a special breed of bitches and their reputation as brain-dead robots was justified. They normally look after an unconscious patient and are not used to dealing with alive and moving patients fighting for their lives. Their robotic routine was being interfered with by this bloody cheeky patient who refused to lie still and be quiet and demanded attention. This interfered with their completion of data on their charts on their clipboards with their trusty red and black pens – by the time the doctors agreed to move Simon to a High Dependency Ward I was ready to shove the clipboard together with their red and black pens up their arses. However, I will always be eternally grateful that this very dark period of Simon’s life was erased from his memory – thank God he never remembered any of it – it was so sad those bitches never knew how lovely Simon was, but then that was their loss. The NHS is full of highly caring and very highly qualified capable people, but all you need to be an ITU nurse is a red and black pen!

Whilst poor Simon was there the BBC were filling ————- City Hospital for live transmission, you can imagine my reaction when (interviewer) and her crew requesting to film in Simon’s ward – our answer was a loud F*!*!*!*! but I did agree that as she was a kind, caring person (not!) she could help me clean up the shit, but she declined – I can’t imagine why – she’s always spouting off about how caring and lovely she is!?!

7. IN REMISSION?!

There were not many cancer patients who came out alive from that God awful place. But my gorgeous boy did, we returned to the hospital a few days later to commence with Simon’s recovery. He was put in a side room and following many consultants and/or registrars stroking their chins it was decided to take Simon off all antibiotic/viral/fungal infusions (this was because his diarrhoea was absolutely horrendous with awful pressure sores). His blood count was coming up at last but he was still suffering the side effects of the transplant and high dose chemo. All antibiotics etc, were stopped and very slowly Simon started to pick up (I would like to add here – no thanks to certain night nurses – wot old bags they were).

8. HOMECOMING

I brought him home on 1st November after having a ‘trial’ visit the previous weekend. He was so much better at home that upon his return to the ward on Monday 1st November I informed the doctors that I was taking him back home again and there was no way Simon was going to darken their doors again. We’d had ENOUGH – and it is with much pride that I report he never stayed in that bloody place again.

It was fun having him at home, (just like having him as a baby all over again but a bit bigger!!) he was so weak from the treatment there was no way he could have climbed stairs so a bed was made up for him in the lounge. So for a while, with the help of Marie Curie nurses who visited daily to help me care for him, he made the lounge his domain. But after a while he missed his bedroom and Ray would carry him upstairs, gradually becoming strong enough to crawl up the stairs and when he managed to go to the bathroom on his own – now that was an achievement! He was still unable to walk unaided so with the help of a trusty wheelchair we managed to get him to the home game on the 20th November.

He absolutely hated using the wheelchair, Simon did not like being seen as different and made his next goal to lose the bloody thing and forced himself into discarding the wheels. And by our next visit to the hospital on 17th December they were amazed at his progress, even talking about operating in February towards a full recovery. Out of the mouths of morons!

Whilst suffering from the long term side effects of his transplant, he was on buckets of medication – his oesophagus had been damaged so the tiniest morsel of food could bring on a choking fit. All the nerve endings on his feet were damaged which gave him a lot of pain and worst of all – his fingers seized up and he was unable to play his guitar, which was catastrophic. He loved playing music but unfortunately this was only one of the further blows we were to receive over the forthcoming months. But Simon managed to socialise as much as possible, attending Basingstoke Supporters Club meetings, Kuti’s, a Blur Concert at Wembley (this was using his wheels but he didn’t mind that as he had a good view!!) Even spending a couple of days with his University friends in Luton.

9. LITTLE RAY OF SUNSHINE

Manda gave birth to Tilly on the 14th February 1999 – we were over the moon which such a lovely bundle of beautiful grand-daughter. I now know she was sent for a reason, her presence was a light in our miserable existence. Simon loved her dearly and they both had a definitive rapport. So close were they that she still talks about him incessantly, saying he is in the sky on the moon and we will all see him later and can give him a big hug – out of the mouths of babes …....

So it was with great excitement we looked forward to spending Christmas and New Year with her and all the family. Cindy (who was working in Oviedo, Spain, as a teacher) was also coming home for the holidays. And we did have a good time – thank you for camcorders, we have some lovely film of Christmas 1999 to treasure forever. Simon during this period was almost his old self, full of cheek, eating like a horse, and so looking forward to returning to a normal life. We even commenced applications to other Universities in preparations for his return to study in September 2000.

10. CHEERFUL CHARLIE CARCINOMA

It was Wednesday 29th December that our world again caved in – Dr M telephoned to inform us that Simon’s tumour markers were rising and could he come down to the hospital the following day for a scan, X-rays etc. I can’t recall how we got through the rest of that day. Following all this, the outcome was that he had a brain tumour and he would need high dose radiotherapy. It was difficult to understand why the cancer had not been destroyed completely after the harsh treatment Simon had received. But apparently none of the drugs he received would touch a brain tumour so this little bastard was growing in his brain silently waiting to pounce just when we thought we’d conquered the disease. Why, why, oh why did Simon not have regular brain scans – who knows – they may have been able to treat him sooner.

The treatment consisted of 13 blasts of high dose radiotherapy to the diseased area of the brain. The image of Simon having the mask moulded onto his head will stay with me forever – cancer is a wicked disease but the treatment is far more cruel. So off we go again backwards and forwards to the hospital daily at ungodly hours for 2 minutes of nuclear blasting to his head. This treatment made him extremely poorly again, resulting in severe weight loss. By his 21st birthday on 5th February my gorgeous 6 foot 3 inch tall boy weighed a paltry 8st 4 lbs.

By the time the end of January arrived poor Simon was so ill and weak I was terrified he would not live to see his 21st birthday on 5th February – he did – but the tremendous effort he gave to see ———- football club beat West Ham that day and attend his party in the evening took a lot out of him, that by the end of that week the doctors were insisting he be admitted to hospital. NOT Simon, he refused to be admitted even swearing at Dr M. In desperation (Dr M’s words) he put him on a course of Dexamethesone (steroids) and what a significant change! Daily you were witnessing Simons’s general health and appetite improving. He went from eating and drinking bugger all to eating for England! We just could not satisfy his appetite, it was great to see. His weight and stamina improved rapidly and life seemed worth living again. He was a bit too enthusiastic at times though, we went away to see ———- football club v Arsenal on 26th February and he felt so good he threw himself into the day which resulted in him being taken to A & E with massive damage to his knees. Bless him, he was attempting to act as normal but even that avenue of normal existence had been taken from him. By walking and standing throughout the game he had damaged his knee joints so much the fracture clinic doc diagnosed the same damage that Steve Ovett had suffered resulting in him having to retire early from athletics. We were to discover later that one of the side effects of steroids was the weakening of bone joints.

With an overview, it appears the treatment and medication damaged Simon far more than the actual cancer tumours.

11. NO DISTANCE LEFT TO RUN

March arrived and the crap started to improve slightly, Simon was fairly mobile and well and his social life increased rapidly. During this period it was when Simon started to organise his life by sorting through all school/college/uni work, personal cards and/or letters and filing them neatly and tidily for easier access. Looking back I wonder whether he was aware of his future as he was placing his past in order enabling us to look back over his life with happy memories. But we were not to escape hospitals as Tilly was hospitalised with an infection. Simon was admitted hospital on 17th March as he started suffering grand-mal fits! He’d had a brain scan that morning at the hospital and we were warned he may start fitting later – wasn’t much later – a few hours only! Meanwhile Cindy, who had decided to leave her job in Spain and return home, had her 30th birthday celebrations injected with visits to Tilly and Simon in a hospital bed!

At the end of March, Simon had a PET scan atGuy’s Hospital. This must have been one of the worst days. We knew he was there in desperation as he was suffering petit and grand-mal fits resulting from his brain tumour increasing in size. But we went along with the hope that maybe another hospital could come up with different treatment or maybe even a cure (dream on). We were to discover later our wishes came to absolute sod all – it hurts to remember how hopeful we were. We were in complete ignorance of how cruel life can be.

12. ARMAGEDDON

31ST March 2000 is another date forever scarring our memories. This day was the commencement of our plunge into Armageddon. We were summoned into Dr M’s office and told the results of the PET scan – the cancer had taken hold again and his tumour markers were rising rapidly. And as Simon’s body was unable to receive any more treatments of any kind he would probably lose his life before the end of the year! Just like that! To be told your gorgeous son was not going to be with you for much longer, not being able to attend his graduation, help in his search for a job, his wedding, cuddle his first child. Our hopes and dreams for his future struck out, all thoughts clouded with pain and misery at this injustice so cruelly enveloping us. Simon was so cool, his reaction looking across at me was ‘That’s a bit of a pisser’ and immediately dismissed any anger or fear as his main concern was poor Ray who had by now crumpled into a very sad wreck, and consequently he spent the rest of the day consoling us! He was such a brave, strong, courageous lad. One thing he said I will always remember with sadness mixed with joy is my reaction of wanting to hold and cuddle him all the time and he said he wanted to do the same – and we bloody well did. My arms ache continually now from the absence of being able to hold him.

How do you go on after news like this? We didn’t know, but we managed somehow. Apart from his family, Simon’s concerns were that he would never see the————football club new stadium, the last of the Star Wars Trilogies and later as his relationship with Jody developed, never be able to do the ‘getting married and having kids thing’.

So we threw ourselves into ensuring that if Simon was not going to have quantity he certainly would have quality in his lie so he made a list of things he wanted to do and just got on with it.

13. LOVE HURTS

Since the beginning of the year, Jody had been visiting Simon frequently and fortunately fate gave a hand and they became very close, resulting in their relationship making Simon’s difficult path to the end of his short life so much easier and happier. I am content with the knowledge that Simon and Jody shared more love and closeness during their short time together than other people ever experience in a lifetime.

14. BUSY TIMES

During April we went to York for the weekend to see ————— football club beat Bradford 2-0. Simon really enjoyed himself. OK, he wasn’t wonderful but he enjoyed himself and managed to give the home fans some stick! This weekend concluded with us visiting and meeting all the ————- football club players at the Training Ground which I know was one of Simon’s happiest memories. The players said all the right things and were very kind to him and they all had a way of not making him feel patronised, for that I will always be very grateful.

Apart from our weekend away in York, Simon’s social life was quite hectic with games, parties, pub nights, visits to the cinema and one of the highlights (to Simon anyway) was the purchase of his pride and joy – a Sony 32 inch wide screen TV. He was so chuffed with this – bless him, he really was a lad of simple pleasures.

Star Wars Exhibition, Millennium Wheel, visit to the Ainge’s, to Luton, to Lesley in Oxford, and finally in May the Royal Oak BBBQ! This was a GREAT day – some luvverly, luvverly, luvverly people had been fund-raising over the past six weeks towards the goal of sending Simon to Euro 2000 (European Football Championships). Duncan, Mandy, El-Tel, Mary, Big Phil, Tel-Boy, to name but a few of kind and generous people who had challenged each other to raise funds to enable Simon to achieve his ambition of seeing England play in Europe (well he was never going to see ————- play there!) And they did!! – Simon was completely unaware of the activity – even entering (and winning) the music quiz which was one part of fund-raising. Between us and Duncan and all the regulars at the Royal Oak we managed to keep it a secret from Simon so when the presentation day arrived he was taken completely by surprise. Through Duncan’s mammoth efforts he was able to secure 3 tickets for the England v Romania game at Charleroi, 2 quarter and 2 semi-final tickets together with enough funds to provide a Touring Camper Van, food and payment of site fees – all this and £500 spending money. It was amazing how much they raised and arranged for us – even including Martyn accompanying Simon.

He appeared very cool about the whole event but at the end of the day when we were alone he did release his emotions to me. He was full of humility, modesty, almost questioning why him – how come he deserves all this goodness? It took a long time to convince him that he was special and those lovely people really wanted to do something to help. So many times we were aware that friends felt incompetent and wanted to do something to help and to be able to put a smile on his face and give him something to brighten up his short life. This was one way they could contribute towards making his cruel journey, a little bit brighter, helping all of us and also go a little towards relieving the pain they were feeling from utter helplessness. He was also very frightened of the unknown, of whether he would be fit enough to cope with the adventure – he didn’t want to let everyone down!

15. VIVA ESPANA!

But before our mammoth trek to EURO 2000 – we were off to SPAIN! All of us Manda, Alex, Tilly, Cindy, Mum and Dad rented a Villa in Moraira on the Costa Blanca for what proved to be our last holiday together. Deep in our minds we knew this was our last time but we got on with enjoying it, even falling out a couple of times (well, we are a normal family). Simon found it difficult doing ‘normal things’ – the pool water (in our very luxurious villa) was too cold for him to take a dip, the sea was warm but too rough. He was too weak to cope with the strong currents and crashing waves – bless him. It was gut-wrenching to witness other youngsters enjoying themselves and doing all the activities that he would have done if his body had not been ravaged by this dreadful disease. However, he kept himself occupied viewing the lovely sites (including topless bathing beauties) a visit to Valencia’s football ground. This was a very hot day and I know it took a lot out of him but the determination was there, go-karting and course lots of yummy food (including of course chicken nugget Spanish-style). It was a wonderful holiday and considering the strain we were all under it went very smoothly. Because of Simon’s condition the insurance cover cost a small fortune but we had no problems with the flights – well not with Simon or Tilly.

16. MR COOL – cont.

The week we returned home Simon visited Dr M who was very surprised that he had enjoyed his Spanish holiday and hadn’t experienced any grand-mal fits during the flight – again giving us more false hope. It was this visit that I remember Simon came to terms with his future – he said he was going to take each day at a time and do as much as possible to enjoy what time he had left. The roller-coaster of consultations each one resulting in a different conjecture he found too confusing. Mr Cool was to become Mr Ultra Cool.

On the 16th June I took Simon and Big Phil to Luton for the weekend for a couple of days of lager consumption and mega-celebrations as England were playing Germany in the Euro championships. Fortunately England managed to beat the Germans and I know that this weekend will go down in folklore as one of Simon’s best memories.

17. EURO 2000 – MASSIVE

June 20th came and the Charleroi Massive set off with such high hopes. Apart from being stopped and searched 4 times by various Gestapo we eventually arrived in Charleroi, a beautiful little town but what a stupid venue for England games! The ground was just a teensy-weensy bit bigger than our ground (and our grounds are not good enough to stage the World Cup?) Upon our arrival we were searched AGAIN and my flag and perfume spray were confiscated. Apparently these are banned as they can be used as a weapon – as if! Must have heard a rumour from Old Trafford (tee-hee).

Our first sighting was Mike and entourage, must be a sign we thought so after discussions about ————— and Matty we ventured into the ground. WOT an atmosphere, if only the sights, sounds, euphoria could have been gathered up and bottled for future indulgence when times get hard. It was great.

Unfortunately the euphoria did not last long – the England team kicked off and you knew – you just knew – they were going to fail. Romania were far better and much more technically skilled than England. At one point I thought we were watching Wimbledon. Apart from David Beckham and Martin Keown, and little Michael Owen who must have been devastated to have been substituted by the biggest donkey in the entire history of football (wot were you doing Kev?!) The rest of the team played as if they did not want to be there and quite honestly couldn’t be bothered. When the final whistle came and ended our agony, there was utter silence from the England fans, we were so shell-shocked having witnessed the most dismal display of utter incompetence our hearts were broken. However, it was interesting to note the that only two players who came over to the fans with their hands raised in applause were Becks and Keown which proves that they wanted to win the game as much as we wanted them to and were as choked as we were.

Let’s face it though, you can’t blame Phil Neville, he’s used to getting away with clumsy/murderous/dangerous/crippling tackles – he plays for Man Scum – and there is a UEFA/FIFA/PL directive to ensure they win at all costs, as well we all know. (Guess how France gained enough extra time to win the European Cup – Fabien Bartez is now Man Scum – (refer to aforementioned directive).

We left the stadium along with thousands of other very sad fans muttering about lack of courage and following an ugly confrontation with the Belgian Gestapo (no wonder there had been riots) we drove to our Hotel in Tournai and headed for the local bar. Liquid refreshment and hangovers later our thoughts turned towards the quarter-final game and our continuing tour of Euro 2000. What the hell at least we would see some decent footie!

Friday 23rd June arrived and Ray, Simon, myself and Martyn were off to Ghent via Kent to pick up what was to be our home for a week and after a very rushed emptying of our cars and filling up with the Camper Van we set off for the ferry and immediately Ray went the wrong way! Great start – but we made the ferry with 5 minutes to spare – Simon was very quiet and we thought he was just tired. Unfortunately, the crossing was very rough resulting in him having a Grand-mal just as we were about to disembark at Calais! Visions of us returning home via an ambulance and cancelling the trip rushed before my eyes as he took a long time to regain consciousness. But the ferry crew were great and insisted we remain as long as it took to ensure Simon was OK. We eventually got him in the camper van and put him to bed. The journey from Calais to Ghent was a nightmare dispersed with vomit-stops. The fits used to make him so sick and by the time we reached our camp-site I was more than ready to turn back and go home! But upon our arrival Simon had started to recover, the camp-site was lovely and the facilities were great. We unpacked and looked around the site, had the biggest portion of pomme-frites this side of Belgium and it was looking good – if only the rain would stop!

The next morning Simon felt much better so we agreed to carry on with our plans, not to go home but to hire a car and go to Brussels for the Italy V Romania quarter-final. Now Brussels is not the easiest city to explore and the authorities’ location skills left much to be desired (no sign-posts to the stadium until it almost jumped on your car bonnet). But we eventually managed to park about a mile from the stadium and as we had arrived early enough Simon was able to take it easy and didn’t find the walk too much.

Upon arrival at the King Baudouin Stadium we thought we were in Kew Gardens! Never seen a stadium like it, clean, bright and one of the most beautiful gardens you would wish to see. Met Tony Gale at the kebab van and had a chat, as you do then spoke to Roy Hodgson, Arigo Sarchi and Gerard Houllier again as you do, then into the arena. Wonderful ground again the atmosphere was euphoric and as we were in the neutral part of the ground there were all nationalities around us. Even a bunch of Chelsea fans supporting Dan Petrescu (sad gits).

It was sad to watch the game as Italy were not that good and even England playing as badly as they did against Romania could have beaten them. Romania was very unlucky and Hagi was awesome! Italy was very spawny and only Nesta and Cannavaro could come away with any credit.

However it was great to experience the occasion and wonder how it will be at our ground after attending such an efficient, clean, bright, friendly stewards, real beer stadium.

The next two days were spent in Ghent and around the camp-site, Simon was having a good time but was very tired and spent a lot of time sleeping and the weather was bloody cold!

Tuesday 27th June we left Ghent and drove up to Rinjsburg in Holland to another wonder camp-site. The facilities and hospitality in the European camp-sites are wonderful. We had a good evening in the local bar with other campers watching Portugal v France.

The following day we went to Amsterdam on the train. Simon particularly wanted to go to Amsterdam as he had spent a weekend there, with some of his uni friends early November ’98 and had some good memories and of course wanted to show Martyn the red-light district! It is a beautiful city with so much to see so consequently Simon over-stretched himself resulting in another petit-mal and we had to leave without the Simey-Tour of sex shops – such a shame.

Thursday 29th June, what a memorable day this was! It started by being blue-lighted by the Police (the chief Commissioner of the Amsterdam Police no less) from outside Amsterdam to the interior of Ajax Stadium. It was GREAT – I think we need to learn from football supporters in Europe. It was like a carnival, a happy, noisy, orange tango world. There were Italian fans dancing and singing with Dutch fans. Even after the game and Holland had beat them the Italians were their usual noisy semblance and the Dutch fans just let them get on with it! Having been used to such a confrontational atmosphere at Premier League grounds it was very strange to witness such a party. It was also very amusing to see the Dutch fans leaving the Stadium before the penalty shoot-out – Holland have never won a penalty shoot-out (hmmmmmm – sounds familiar).

After the party was over we were again blue-lighted back to the Police Station for coffee and then escorted to the M-Way back to our camp-site. They were very hospitable and friendly and I couldn’t possibly comment on the female officer – you’ll have to ask Martyn about her!

Our return journey went very smoothly with no fits, vomiting, hold-ups and a much smoother sea crossing. Simon slept like a baby all the way home, he’d worn himself out determined to enjoy the experience and with hindsight you realise how hard he did work. Such courage – if I had had just one fit I would not have the guts to move outside my door ever again, never mind re-enacting National Lampoon’s European Vacation!

18. CANCER IS FOR WHIMPS

The next couple of weeks Jody was here and Simon was quite well although his latest scan revealed his tumours were slowly increasing in size and his tumour markers were creeping up! But that made no difference to Simon, there was Tel Boy and Naomi’s wedding to attend. He had a great time and managed to dance most of the night away – amazing. We had a day out in Bournemouth and it was so lovely to see him and Jody having a ‘normal’ time, in fact it was this period and the forthcoming 6/7 weeks that you could almost forget his illness and waves of hope were foremost in your mind. He was experiencing petit-mals but would recover very quickly, so we were lulled into a false sense of security. He even fitted in another weekend in Luton with Jody before he went to Wembley Arena with Tony on the 21st July to see Oasis on a very hot day. You can imagine how worried I was as Mel (a very lovely doctor who Simon said was “a babe”) had strictly forbidden him to go as she was concerned about the laser/light show – she said there was a major chance he would fit so badly it would be dangerous. But he didn’t! He had a really good time and it was another of his goals completed successfully.

We also visited Granddad in Cromer for a few days at Simon’s request – he wanted to say goodbye to him – as it turned out they were both gone within six months.

19. BESTEST FRIENDS

Simon’s best mate Phil’s 21st birthday was on the 30th July and whilst all this activity was going on Simon found time to collate a book of memories to give to Phil for his birthdays as a reminder of their good times together over the years. He was like a man possessed preparing this book with many trips to Boots for copies of photos and various memorabilia. He was able to include in the book all the tickets to various venues/concerts/football matches etc. they had attended together as he never threw anything away – and a monstrous hoarder! The amount of times I moaned at him for not throwing anything away – I am so glad that he ignored his Mother and kept every piece of paper/memorabilia.

It is a wonderful recollection of not only Phil’s life but also Simons and I shall be eternally grateful that Simon was a ‘Statto’.

20. IT’S JUST NOT TRUE

He was really flying during August as his steroid dose was increased dramatically and the weight was piling on increasing his strength. He saw a lot of his friends, attended parties and as it was the start of the domestic football season we went to the first game away at Derby. It was a very poignant moment when we were viewing the memorial pavers outside the ground, Simon asked if he could have one at the new ground – he has – No. 00248 outside the main entrance to the East Stand – and I still didn’t believe it would be necessary – although he KNEW. We ended August with a visit to the Millennium Dome and despite the bad publicity we were impressed and had a great day out AND Simon found energy from somewhere – he walked all day without complaint. We were the ones that were knackered.

Meanwhile, Jody was still staying with us and we had a legendary day out at Legoland. Manda and Tilly came, we had a great time and seeing Lego-mad Simon so happy was heart-warming and the memories from this day out are among the happiest I have.

Simon spent a week with Jody and her family, Rob, Maureen and Kerry during August. He was so nervous about meeting them at last, he wasn’t sure how they felt about his and Jody’s relationship, after all (in his words) it is not a ‘normal boy/girl thing and their expectations would be too high and he didn’t want them disappointed. But they also saw the something special in Simon and had a great time.

21. ONE STEP FORWARDS, TWO BACK

Simon had an X-ray and blood tests on 15th September and apparently all looked well so Dr M decided to prescribe Etopicide tablets as an experiment, he though as Simon was feeling so well it was worth a try. He said they would not cure the cancer but may help to extend his life a little longer. He was given 7 days supply and arrangements were made for him to have more tests on 5th October. Simon was so excited and bless him, even he thought maybe, just maybe ….... But bloody hell – within a few days of taking these tablets he was poorly again, very nauseous and the petit-mals were more frequent. So that experiment was a waste of time as he didn’t complete the course at Dr M’s request.

At the end of September, Ray, Jody, Simon and I went to a friend’s hotel in Wales for six days. The weather was glorious, the accommodation was first class and all seemed hunky-dory, even having a swim in the hotel pool! But on the Monday before we were due to return home he felt very poorly. Looking back I now know it was during this time that it all started to go wrong – he was tired and his appetite started to decrease. But ever the optimist (!?) we were looking forward to meeting the England Team at Bisham Abbey, which had been arranged again by that lovely Royal Oak massive together with tickets for England’s last ever game at Wembley.

But before this another hospital trip only to be informed that Simons tumour markers were running out of control and there was absolutely nothing else that could be done for him, including my futile attempts at obtaining a second opinion from the Royal Marsden Hospital. They were very helpful and I was amazed at their quick response but he was past helping and informed me that they would have given Simon exactly the same treatments as the ———————hospital …. But you can only imagine ….. As it turned out this was Simons last visit to the hospital, he was so pissed off with it all he refused to go again and as Maria (his Macmillan Nurse) agreed the hospital’s role in his care had been completed, there was nothing to be gained from visiting them again. Simons local GP together with the district nurse team and Maria would now be responsible for his care and Simon was more than happy with this arrangement. I was devastated, although I kept my thoughts from Simon – there was I, still hoping and praying that this was not happening and by not going to the hospital anymore would mean that they would forget about him and he could miss out on a miracle cure! What a blind stupid idiot I was – talk about being an ostrich! My gorgeous boy was so much more courageous than me and so very composed.

22. IT’S ONLY A GAME

Simon met the England Team on Friday 6th October, he was very nervous but relaxed enough when we arrived. We had the usual photo sessions with a few of the team and they were so nice and friendly apart from four members of the Man United, whom I won’t mention but Simon managed to speak with his heroes, Tony Adams, David Seaman, Peter Beardsley, Michael Owen, Gareth Southgate and Kevin Keegan. We have some lovely photos and the day was completed with us visiting Manda at work (more hospitals!!) and taking her out for lunch.

The least said about the England v Germany game at Wembley the better, the weather was matched only by England’s performance – very wet. However, it was another goal successfully completed (a pity England wasn’t so good at achieving as many goals as Simon did!) they let him down again and I’m afraid I take it all personally so COME ON SPAIN .......

After the game Simon spent what was to be his last visit to Luton, during which time he lost the use of his upper right side of his body. He had a grand-mal and it all shut down – he phoned me after it had happened but insisted I did not race up the M1to fetch him home – so brave. Upon his return Maria visited and was shocked to see how poorly he was, she told me he looked like a boy who was dying but still I didn’t/couldn’t face up to it. Jody’s birthday was on the 23rd October, which we were all looking forward to, but meanwhile she had returned to University for her final year. But due to events I think she only spent about 3 days there overall.

On the 23rd October, we went to the ———— as were playing Man City (easy 3 points here – hhhaaa!!) and Simon was presenting the BSSC’s Player of the Year Award before the kick-off. Bad memories again – it was this day that Simon started losing his sight and could barely see the game – I tried to be light-hearted and said it was such a crap game and he was fortunate not being able to see it (Ostrich again).

23. BIRTHDAY GIRL

Jody came down on the 24th October and Simon insisted on treating us all to a Chinese Meal in celebration. It was a good evening and Jody was showered with lovely presents from us all, including a beautiful ring Simon had spent much time on selecting from all the jewellers we had visited over the previous month or so! We were all looking forward to her party on the 4th November to be held in Towcester but before that Simon had a match to attend at Old Trafford with Ray and Uncle Rom. I’ll never forget it as fate struck and this was to be the last ever football club match he would attend – they lost 5 – 0. When he returned home he said then he had had enough and wouldn’t be going to anymore matches – so cool.

Jessie our cat died on the 25th October – she had been diagnosed with bowel cancer four months previously. It was a difficult decision to let her go as the correlation between her and Simon was too close for comfort, the kindest thing to do when she was diagnosed was euthanasia but Simon loved her lots, she had been with him all his life (she was 20 years old – which is bloody old for a cat) and as he said, “why put her down? – I’ve got cancer will you put me down?” So we spent a fortune keeping her alive and fairly healthy for his sake – it was cruel, but we had no choice. Simon saw himself in her and almost seemed to be waiting for her demise as a measure of his time. Simon sobbed like a baby when she died and I knew then that he saw his approaching departure.

The 4th November arrived and we booked into our hotel for the night of Jody and Kerry’s 21st and 18th birthday party. It was a great party, everyone was so friendly, and Jody looked lovely, Simon was so proud of her. All his friends from Uni were there together with Big Phil of course, everything went very well including Tilly dancing herself to sleep! Simon had one last dance with Jody and we all managed to control the lumps in our throats! It was during the early hours of the morning that Armageddon struck – Simon had a massive grand-mal and we realised then that mentally he had given up as all his goals had been achieved – his main aim since the prognosis had been to get to Jody’s party, this having been achieved he hadn’t got the strength to carry on any more and after a very difficult journey home injected with vomit stops, he was very calm and relaxed.

24. THE BEGINNING OF THE END

During the night the pain which he had been suffering for a couple of weeks – really kicked in – not in his abdomen, kidney, head or any other cancerous area you would expect but his knee! This is called referred pain – when the body is slowly packing up the warning signs are sent to the weakest part of the body and as he had damaged his knees way back all the pain was directed into his left knee. I summoned our GP, who immediately gave him a Morphine injection with the hope that this would relieve his symptoms. But unfortunately within 2 hours he was still rolling around in agony and screaming from the pain in his head and as he had already been taking MST (a slow release morphine tablet) there was no alternative other than to prescribe a morphine driver. This is a slow release pump infused into his tummy which gradually releases morphine over 24 hours to help ease the pain. I know Dr Jones was very reluctant to prescribe this method as she knew there would be no going back – ostrich again – I thought he would get over this period with the help of the morphine and perhaps have it removed. I didn’t realise this was the count-down to the end, even when Manda phoned and as soon as I told her what was happening she collapsed into floods of tears then left work and moved in for the next few weeks. It was going to be all right, Jody was arriving today and Cindy was coming Tuesday and all of us together would be able to look after him to a full recovery.

The District Nurses and Doc visited every day to refill and increase his morphine as the pain was still not easing and meanwhile Simon was still insisting on getting up and coming downstairs. It must have taken so much of his strength but he was always aware of others, not wanting to alarm us too much. He wanted to see as much of his family and friends as possible to say goodbye and he was still very lucid considering all the fuck-off drugs he was taking. As well as the morphine he was now having Cyclicine (anti sickness) and Midazolam (tranquilliser – also known as the date rape drug) in his driver. But he was suffering awful nightmares, many of which were about being buried alive. We discussed this, as I would have preferred Simon to be buried, which at first he agreed to but I was to ensure that he was dead before they put him in the coffin. Can you imagine having this sort of conversation with your child? It was so unreal, I was still paying lip service to Simon, still being an ostrich. When he died, it was perfectly natural to have his body cremated and be able to bring him back home to his bedroom – I now know this is what he really wanted.

Our house was like a shrine with family and friends visiting to say their goodbyes to Simon, accepting little rights as a memoir and hearing Simon’s thoughts on his life and approaching death.

25. THE END

6th Nov Morphine pump fitted – Manda arrived at 6.00 p.m. followed by Jody and her parents at 7.30 p.m. He seemed relaxed that we were all there and looked forward to seeing Cindy. Beds and furniture were moved around to accommodate us all. The Care Team seem very efficient and caring.

7th Nov He manages to get up and Jody assists with his bath. Maria visited and again was upset to see how poorly he was. He thanked Maria for her help and support but it was a pity she was a Man United supporter.

8th Nov Maggie and Ray came to lunch today and Simon managed to eat, still insisting on going up and down the stairs unaided. He was very chatty but by the evening we had to call the doctor out as his Morphine needed to be increased.

9th Nov Kate visited today – and he apologised for not being able to get out for her farewell bash as he was finding it difficult to see and would be a bit embarrassed about the driver hanging round his neck!

10th Nov Jody went back to Luton for the weekend. Manda, Tilly and Alex went home for a well-earned rest and Cindy went to a Britney Spears Concert! We had the Doctor again to increase his dosage though.

11th Nov Simon was very fretful today but Olivia, Tim and Abigail visited which seemed to cheer him up and he even managed a small portion of Chinese Take-Away that evening! It was today that Simon and I discussed his funeral – he said there would be a lot of people (there was – 280 ) and he gave me a selection of music that was personal to him that would like played during the Service – but as the days went by he started asking questions and was holding his Nanny’s rosary beads – to keep his option open (his reply to Manda’s questions about God).

12th Nov Everyone visited today, Duncan, Mandy, Teresa, Kevin, Big Phil, Tel-Boy, Mary, El-Tel, and Pete. Simon was still very lucid but you noticed a slight change in his demeanour, I thought it was because he was getting worn out by all this socialising!

13th Nov Jody arrived after a 10 hour journey from Luton! (It was the time of the floods), this settled Simon a bit, as he was so lost when she wasn’t around. Tom, Biddy, Nicol, Martyn, John and Elaine visited during the evening and his attempts at being sociable and chatty were gut wrenching to witness. He was trying so hard all the time to be “normal” – Christ it hurts to relive that time. The Doctor had to visit again to increase his Morphine, he was now receiving enough drugs to kill an elephant – such a strong Boy!

14th Nov Jody, Mary and I went shopping for “a break”. This was a big mistake as we spent most of our time thinking and worrying about Simon and wondering why we were wasting time that could be spent with him. But he was in good hands, Manda and Ray were with him, Uncle John visited and as Simon had woken up gagging for a burger they all had a MacDonald’s – this was the last meal Simon would eat. Again the Doctor increased his Morphine and Midazolam.

15th Nov Mandy came today with photos from Euro 2000 and when he realised he couldn’t see them properly he broke down in tears, at last. Not that I wanted him to be upset but it confirmed that he was aware of what was happening. John and Maureen came in the evening and were shocked at his fast decline but he still managed to crack a few jokes and spend quite a while with us downstairs. Manda and Alex had gone, very reluctantly to a Jools Holland Concert and Tilly was in London with her other Grandparents. Don’t think the Doctor came today!

16th Nov The Doctor came today – another increase in the drugs before a very bizarre evening. Tilly returned from London and it was amazing how she coped with the upheaval. Big Phil and Simon had had their long awaited heart to heart chat and a player from the football club phoned to say he would visit Simon on the following Monday! Simon was hallucinating a lot today – he was seeing little people – we think it was Tilly.

17th Nov Jody left for Luton this morning (she had a Saturday job at Debenhams), Ray attempted to take Tilly to nursery but the poor little darling was so upset at leaving her Mum again and was so distressed during the journey Ray decided to bring her back home. She was an absolute angel all day spending her time with Simon and thank God was able, when Alex came home from work to take her to London AGAIN, to say goodbye to Simon for the very last time. It was at this point that Manda, who through all this time was the “leader” the practical one who organised menus/sleeping arrangements/endless cups of tea and general household activities, as well as endless trips to the Chemist for Simon’s drugs (they NEVER had enough stock so it was always at least TWO trips per day) completely lost it and broke down in floods of tears and struggled from then on.

Mary, the District Nurse arranged for a Doctor’s visit, who proceeded to extract blood samples to be taken to the hospital for tests and possible X-rays. We were horrified – he was so ill the thought of moving him filled us with dread. The bloody doctor did not have a clue – Simon was so obviously dying – why put him through more unnecessary trauma? His little arms were so badly bruised and the pain he suffered whilst this stupid bloody doctor insisted on getting blood samples – the incompetence!!

Simon was so distraught after this debacle – it was a dreadful – he then decided he was going to die that night and would I get Jody back as soon as possible. Manda was out doing the usual round of Chemists and as soon as I phoned her she contacted Jody and asked to her come back immediately. She arrived about 8.30 p.m. feeling completely knackered!

Cindy arrived so we were all there and Simon was calm. Ray and Manda helped him upstairs, he was exhausted and as he got into bed it was then he said he wouldn’t come downstairs anymore – he wanted to stay in his bed and die – Christ it was bloody awful – he was still convinced he would go that night. We moved beds and bedding into his room in preparation but unbelievable he had a fairly quiet night.

18th Nov When we got up this morning Simon was complaining that he was still here! He said our love was keeping him alive and would we please let him go. The round of visitors continued today with Craig, Clare and Daniel amongst others saying their goodbyes and Simon was fairly lucid, giving them certain possessions as a reminder of him. It was horrendous to see so many tears.

Ray and I slept in his room overnight, he was still fairly lucid but during the night he asked me to come into his bed for a cuddle as he was feeling fretful. In reply to my questions of how he really felt he likened it to his football club losing 6 – 0 to Coventry City – for one reason or another he hated City and losing by such a result was the only way he could describe how bad he felt! He was seeing a “tunnel” – he likened it to a “kitchen-roll or bog-roll holder” it was spinning at 45 degrees and he could see at the end of this “tunnel” the Angel Gabriel and lovely people in long white gowns and he wanted to go down there but couldn’t because it was spinning so fast! I said it was probably heaven calling him but he wasn’t ready to go yet, this explanation made him very angry – he was very anxious to go and wanted to know “how much bloody longer?” ......

19th Nov Elaine, Maggie, Tom, Biddy, Jackie, etc, etc. visited today. It was so bizarre – as each one arrived they would go upstairs and see Simon and he would say his goodbyes and tell them he would look after them in the after life. Big Phil and Tel-Boy said their last goodbyes together with the Ainges. It was so surreal, it was as though we were all taking part in a dream – we were going through the motions but it was not real. When most of the family/friends had left Simon seemed relaxed and asked if there was anyone else to come and could he go now – his response when being told Peter was due to arrive at about 8.30 p.m. was a groan and said he would hold on for him and then he would go! The Doctor had visited early morning, and warned us to be prepared as he probably wouldn’t last the next 24 hours so again we spent the night taking turns to sleep with him and taking our time to say our goodbyes.

He kept thanking Ray and I for being wonderful parents and looking after him so well, we were to look after each other when he was gone and forever keep him in our hearts – as if we needed thanking or asking to remember him. It was heart-breaking he was so thoughtful and caring or us and everyone else close to him.

20th Nov When the Doctor and Nurses arrived this morning, they were amazed Simon was still alive – but his heart was very strong and was still quite lucid even enquiring about the US Presidential elections! The lovely nurses gave him a bed bath and he was still cracking jokes – its not surprising how difficult I found it to believe he was really going to die. By early evening we all had some time alone with him and I thank God I was able to tell him how much I loved him and how much I was going to miss him and begged him to come back now and then to give me encouragement to carry on. And I am so thankful for the fact that his last word was “Mum” reaching out and grabbing my hand, it was then he slipped into a coma.

We then all positioned ourselves around his bed as we realised he would be leaving us soon. It was very bizarre but there was an air of serenity, we all had hold of him, cuddling and kissing him whilst music was playing – the Philadelphia soundtrack (Simon particular requested this), Elgar, Mahler, Blur, then we played his football CD as Nessum Dorma (another request from Simon) was one of the tracks. We decided this CD was very appropriate then as Three Lions started playing he slipped away very peacefully and we were able to kiss him to death – Manda turned his Morphine driver off and he was gone.

Gone forever – and we are left here to carry on without him.

26. EPILOGUE

When Simon died another journey to hell took place just as it did when we first heard about the diagnosis. A phase of life came to an end and Simon’s illness, which had been the focus for 20 months of our lives suddenly no longer had any significance. We are left with a great void. We had to plan the funeral, inform family, friends, and officials that Simon had died and the intense concern of keeping Simon alive was wiped out and it is so difficult to come to terms with reality and adjusting to the loss of structure and purpose to each day. It is difficult to re-enter the world of every day practicalities which seem to dominate “normal” families and which now seem to trivial in the face of our tragic loss of Simon.

The very fabric of parenting has been destroyed, my role of parent to a son has been taken from me and I feel that a part of my own existence has been destroyed, nothing has meaning and I feel a deep despair. I struggled to protect Manda and Cindy from the full extent of my grief as it seemed a burden too big for them to bear and I know this hurt them very much. They felt as if they had lost their mother too, but at the time I was so disabled with my grief I found it difficult to be a mother to my daughters. Our family has been fractured but we are still a family and gradually I was able to show my grief to the girls and gain a lot of comfort from them.

Ray and I have always been close but the pain of grief can sometimes drive a wedge between us. It is difficult to share our loss and support each other, we both have our own ways of grieving. I need words whilst Ray needs silence and our tears are unbearably painful as we hurt so much it is difficult to hold each other’s pain.

But we are still here, still attempting to carry on with life as ‘normal’. We have lovely memories of Simon to reflect on when we feel desperate and thankfully, audio and video tapes to lean on when times get really hard. It is very complex to grieve as a family. We hold so much collective pain, the amputation is unbearable for each one of us and yet it is also different because Simon was a son, brother, uncle, boyfriend, best mate, meaning something different to each one of us.

27. SO DARKENED AM I, THAT ALL DAY MY DAY IS NIGHT

I count the days, weeks and months since he left us – it is 6 months now and still I think what now? Go back to work? Impossible. Carry on? Impossible. My only son is dead, never to see him again, never to hear ‘Hi Stress’ or ‘Fat Boy’. I even miss ‘Waaaaarrpppp’. Tears – how many? How often? For how long? How come the simple tasks are now impossible? The house is so quiet, how can I go to bed without saying goodnight to him? How do I wake up each day and face another day of agony? Why do I cry because there is no washing in the laundry basket? Why can’t I do my shopping because I can’t buy my usual things? Why can’t I go out in the car without wanting to ram into a wall? Why is it so painful attending matches? Why don’t I play music anymore? I’m frightened I will hear ‘those songs’. Why am I angry when people say ‘Isn’t it a beautiful day?”

It will never be beautiful again. What am I going to do with my aching arms? Why don’t I feel normal? I want to feel normal – I never will again.

Cancer In Young Adults ... Through Parents’ Eyes

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