Narratives & Stories

Steve's Story

Steve was twenty and working in retail for the John Lewis Partnership when he was diagnosed with malignant melanoma.

Dear Geoff and Helen

I was so sorry to hear about your loss of your son George. So sorry to hear that he too lost the battle for his life, for his future. Thank you for deciding to fund a research project into the impact of cancer in a malignant melanoma. Steve was 24 when he died in June 1998. Cancer is such a cruel insidious disease. A parasite that can feed on and break strong young bodies in the fullness of puberty.

I am sending you the book I have put together to help me through my journey of grief. I found that writing had a cathartic effect. I had so much passion and adrenalin build up; I had to do something with all the emotional energy I was creating. When Steve was alive this energy enabled me to care for him, to keep going. When he died it was as if the performance had to continue without the star player; I needed a new focus. My writing and then the production of the book gave me this focus.

There is much more writing, in long hand. It is not as forward looking, as sensible. It is much more muddled and raw, written just after Steve died. Then there are the things I still need to work out now, hastily jotted down on scraps of paper. Maybe what I am sending is enough but if you want the rest please ask. It is just not so easy to read.

I would not be surprised if you get no further through this book than my forward and Steve’s case history. Your loss of George is so recent; much of my writing will tear open wounds scarcely closed, please give yourselves time.

If I can help in any further way, by speaking to you, sending you more of my writing or meeting with you or the researchers, I will gladly do so. Your project gives me permission to think, write and talk about Steve and this is an unexpected comfort.

My thoughts are with you both

Yours sincerely

Gabrielle

Out of Darkness into Light

1st July 1998

My dearest Steve,

Almost a month has passed since you died. Where to start? With your childhood I guess. I have shared photos and memories with your friends and relatives, much to your embarrassment! You were such a happy and contented child, easily amused and pleased. Always satisfied with your own company, you played imaginative games for hours. You had many friends; your laid back nature made you easy to get on with. You fitted in with all age groups. Even from an early age you had the ability to listen and empathise with others. I loved your natural artistic and sporting talents. You had such a good eye, but until recently, not much killer instinct in sport. As an adolescent you never really caught onto the importance of gaining academic success. You had so many dreams, but not the will to work to pass the exams you needed. You wanted to be a marine biologist, to work with the fish you loved and especially with sharks. You wanted to be near the sea in your work. Good old Tina, she has the perfect course, an HND in Water Sports. How excellent that would have been for you Steve! But it was not to be. You left school with only five GCSE grades A-C and not in the right subjects for university entry to the courses you were interested in. Your pride wouldn’t let you be satisfied with that, you went to night classes to gain grade B in Maths and English. You suddenly woke up to the importance of qualifications. You could do it when you wanted to!

So you went to John Lewis on a BTEC retail-training course, a very second best as far as you were concerned I know. You always made the best of it and worked the very long hours for quite low pay. You certainly made the most of all the extra perks they offered. You involved yourself in social and sporting clubs and teams. You were never in! Deep-sea fishing trips, coarse fishing, sailing, snooker, football, golf, cricket, badminton, darts and the social club. At the age of twenty you left home to share a flat over John Lewis with Neal. I’m so glad you had your independence Steve. We needed to be apart in order to you to grow into the fine young man that you became.

Then a horrid disease brought us close again December 1992, a superficial spreading melanoma – 1.33mm. 85% chance of non re-occurrence. At least you had three years of blissful ignorance. I didn’t, I knew what might be on the cards from the beginning. I will never forget the day it came back again and you found the lump in your groin. How afraid you were then. So afraid you couldn’t drive, dad had to collect you. You knew then how serious this cancer was, you shook with fear, you couldn’t stand. I was too, my blood ran cold, it really did. We lay on our bed and I held you close. I said that we would face whatever it was together and that we would always be beside you to comfort and support you. We never left you Steve. You knew we would always be there. You trusted us and that trust was so special. You were strong and brave through that second surgery. What a fighter, but you took longer than expected to heal. They had taken as many lymph nodes and tissue as possible in the hopes of stopping the cancer from spreading. The lab tests prove that only one lymph node was cancerous. Again our hopes were raised that you would win the battle.

Mount Vernon, a love-hate relationship with that hospital. Maybe they would get it all, cure you in that second operation. We hoped against hope that it wouldn’t run, but it did. Yet in between you had another two wonderful years. These are the years I remember the most Steve. You grew up so much. You became a man. You gained a regular place in the John Lewis football team. You got a real buzz from the adrenalin release on the pitch. A killer instinct at last. What was the risk of a broken leg when compared to your cancer? You went to India, to Goa. You had great fun with lots of friends, filled your life to the full. At last you found the girls. You always said that girls didn’t fancy you but you hadn’t really tried. I remember you saying shortly before your death “At least I’ve had seven sexual relationships” and with a chuckle “six actually, I lied to my mates about the first one!” You certainly made up for lost time in those last two years! Work was always so important to you Steve, especially when your life was threatened. It was normality. Work was a place where customers asked you for help and didn’t ask about your cancer. You were so proud when you gained promotion. You had always been rewarded for your good work as a salesman but at 22 you had decided to go for management training. You made section manager. You gained self-respect and you valued yourself for the first time. That was so important for me, Steve, to see you grow in spite of facing your operation and the cancer. What gave you such strength and courage to face the future? Whatever, it helped. You were a born optimist, why worry about tomorrow, it may never happen. But it did. It came back with a vengeance.

Now I am reliving the last three months, exactly 12 weeks to the day from when we knew it had really got to you and was in your bones. You were stoic. You shrugged it off and went back to work, back to normality while you could. How sensible, how mature. I tried to control my fear but from that moment on I knew you were going to die before your time. “What a silly thing to write mum”, you say, “when your number’s up, your number’s up”. All those awful scans. Each one revealing more disease, more melanoma tumours. And still we all try to be normal, go to work. I can no longer go alone with you to the hospital; Richard has to be there to support me. You swan in for every test just on time looking smart, fit handsome and so normal. I think of the cancer eating away inside your young body, slowly pulling you towards capitulation. You fight on; going straight back to work after junior doctors at St Albans had shown their panic, setting up an urgent consultation with the Mount Vernon oncologist after looking at your scans.

Reliving those last three months

Sunday 15th March

You play football for the last time. I can no longer cope seeing you in such pain. I know what is to come but I am powerless to help. I feel physically sick, shake, can’t eat and can’t sleep. I am so afraid I will break down. I seek help from the doctor and accept anti-depressants. It will take three weeks before they work but at last I feel back in control. I am able to stand by you, be as strong as you.

Tuesday 17th March

Dad, Richard, you and me at Mount Vernon. A very poor prognosis. You have at least eight sites of bone cancer. Both lungs have tiny melanomas at the bottom of all the air sacs; you still have 96% use of your lungs! There is also a large tumour pressing on your bladder in an abdominal lymph gland. Your right scapula has a hole in it, worn away by a melanoma tumour, no wonder you can only lift your right arm to shoulder height. They can only offer you palliative treatment, chemotherapy, radiotherapy for your spinal and shoulder tumours. There is a trial you can consider and you have to decide in the next two days. Richard asks privately how long you have got to live, “could be months or years”. You ask if you can go on working and playing football! Football is not a good idea they say your bones are too fragile, but you can work, as you feel able. Go home, see the doctor and the Macmillan nurse and they will control the pain with morphine. But it doesn’t work like that; the Welwyn doctor doesn’t give you enough morphine or a laxative or inform the Mac. Nurse. Your pain is unbearable, you can only work for short bursts, but as you say “At least on the shop floor people treat me normally, they ask me for help”. You go on. What strength you have.

Saturday 21st March

We come over to collect your washing and to deliver y our prescription off Oramorph. You work for the last time. We meet you bouncing down the stairs on the shop floor, cheesy smile saying “security alert!” You are holding your right arm, you can hardly lift it at all now. In the car you tell us how much pain you are in. Monday, I bring back your washing to your flat after work. You are in a lot of pain and can hardly move. I can remember, I wanted to give you a lethal injection that night, lying on your bed with you, watching the Simpson’s on TV, you still laughing. I wanted to all to end, for your pain to stop, for you to be free of impending slow death. Real life is still fresh, you can still remember working, playing football, there is still the hope of the trial. Your surfboard is in the corner, your wet suit on the back of the door. “Mount Vernon will sort me out tomorrow mum” you say. Mount Vernon cannot sort you out. The tumour at T9 has grown in a week and the vertebra has collapsed. Your back is broken. You need urgent radiotherapy to avoid complete paralysis. There is now no question of the trial. You are admitted onto the treatment ward. They will control your pain and constipation. In the consultation you vomit with fear and disbelief at the speed your disease is taking over your body. You still think you can control it all with positive thinking. You cannot believe the cancer is defying your strength of will.

Tuesday 24th March (my birthday)

I can’t visit you in Mount Vernon that day; I am too distraught, in a total panic. Mike and Kate B visit you. They are shocked at your changed and drugged state.

Wednesday 25th March

I visit you with Melanie for support; perhaps I can hire her to look after you when you come out of hospital. Desperate to be independent you can only talk about getting back to the flat. You have been talking to Steve H, he would like to share a flat with you. He knows the score his mum is a nurse. You are going to apply to Blackhorse and ask John Lewis to support your application for a flat.

Saturday 28th March

You are moved to Ward 10 for the weekend. An awful experience, men dying of cancer, you hate it. “Please don’t let me die in hospital mum” you beg me.

Monday 30th March

After your final radiotherapy treatment on Monday you can’t wait to get out of hospital but you need to come back here, “Just for a while until I get over my treatment” you say? Philly is on holiday from university and wants to be with you here as support while I am at work. Wonderful company, especially as she brings her dog George with her! The next hurdle, how to cope with your birthday on 3rd April? 24 and dying of cancer. We shop, I buy you some designer sunglasses and new ‘docker’ trousers; we have fun for a few hours. Sister Kate is with us but you don’t want her to stay for long. You are not yet ready for her help.

Friday 3rd April

Great idea for your birthday! Kate, Louise and Philly take you down to Vale View for a long weekend, all four of you young things together. You come back on Sunday night very high and exhausted. You have a bad couple of days. Over the next weeks you spend a few nights at the flat, go out with friends and try to stay normal. You take Louise out for the day. A pub lunch and a walk with her dog on Noman’s Land Common and back to Lasiter’s for tea. How you did all that I will never know. Sheer will power. Again you pay for it over the next few days. We shop in Watford for a designer shirt for an engagement party. You are careful to chose one that best hides your hunched broken spine. You go to the party but feel left out. You can’t stand the heat of the club, can’t dance, can’t pull, can’t even drink much, in a dying world of your own. Richard and I have a very bad time with you the next day. You are in despair. “Tell me how to handle this mum? I don’t know what to feel. I don’t know how to die”. You cried and screamed and we held you. We didn’t know what to tell you to feel. Only be there with you. Shortly after you ask John to come round to draw up your will. Later we go out for a pub lunch with them and their teenage family. You are still chasing the new flat over John Lewis with Steve but have told Neal that you will not be returning permanently to their flat. They say it is OK for you to stay but you don’t feel that it is fair on Neal and Lisa, they didn’t choose to live with your cancer. John Lewis staff office say that you can work part-time, just come and go as you please, you will be attached to special sales. You’re still desperate to be independent, still driving your car sometimes but in increasing pain. The drugs are a nightmare, so many and they are all causing different side effects. They change in dosage daily. We buy an alarm clock and you try to remember to take them yourself but find it impossible and very depressing. You are very low, feeling it all slipping away, caught in the downward spiral of cancer. You are spending more and more time resting and even staying in bed for whole days now. New symptoms appear daily. I am always the first to know. You are still constipated and now being sick. You lave lost sensation in the left side of your tongue. “What is that due to mum”? I didn’t know then but it was the tumour at the base of your skull starting to press on your brain stem. It was this tumour that would finally kill you. You let your good friend Paul Hogan visit you here and give in. Your friends are free to visit you here. Thank goodness, at last you are beginning to treat this house, as home, you need to. You can now hardly walk even with a frame. I feel really scared, out of control. The sickness gets worse. You can’t keep anything down not even water. The drugs aren’t working you are slipping away. I feel that you are dying, that I can’t care for you in this state.

Saturday 2nd May

You go into St Francis Hospice in Berkhampstead to have your calcium levels corrected and to be rehydrated. You also need to get your drugs balanced. Stephanie has great faith in Ros, a palliative care doctor. She is lovely we all like her. She is very direct, very thorough and visits you a lot over the first few days to help get things under control. You don’t find the hospice too bad. It is a big converted house. Your own room and bathroom,, 1:1 nursing. A lovely garden, friends, relatives and dogs visit daily. They are very kind and really understand. They spend a lot of time talking and listening to you, letting you cry, letting you laugh. They help you come to terms with your need for total dependence. They help you to admit that you are dying. While you are in the hospice I go to Shropshire for three days cycling with Richard and friends. Dad and Kate B are in charge. Everyone including you says I need a bread. A break from what I think? From you and your cancer, soon there was going to be a break from you forever. I felt awful leaving you. I felt I was deserting you but I phoned daily and somehow I did manage to enjoy the exercise and change of scenery. I remember Sarah and Marion looking at me their eyes filled with tears. As mothers they could not begin to know how I was going to cope with what was to come. You have to. You take what help you can and live from one stage to the next. The strength comes from somewhere, humans are amazingly resilient.

Tuesday 12th May

After ten days Ros said that your pain was under control and that you were ready to come out of the hospice. I went to get you after school. You were in the garden. “Sit down mum. Listen to me. No more talk of independence, I have not got long now. I want to come and live with you and Richard, make it my home again. I want you to give up work and look after me until I die, it won’t be long”. How right you were, three weeks and three days left to live. You were very emotional, you nearly gave up then and there but we agreed to live for each day and make all the time left happy. We would plan a few days at a time. You would take up new hobbies, use your artistic talent. You wanted to have a dog. I said I would bring in good dogs! Gemma and George. You wanted to go to Cliffe and see the sea and Lee Bay again and we agreed on this.

Those last three weeks

The days were packed, they seemed endless and we did so much. Your new pain control (patches) worked much better and you were no longer constipated. In the first few days you wanted to buy paints and model kits. You set everything up so neatly and carefully on the desk in the bay window, so you could see the pond and the garden. Richard set up your sound system and TV and a long wide shelf along side the bed. Social Services now gave you five hours of care a day. You had the wonderful Rose to care for you while I managed go to work for a couple of hours each day to leave work for the supply staff. You wanted me to work, wanted to see me be as normal as possible.

Thursday 14th May

Dad took you in a wheelchair to your old flat over John Lewis to clear out the fish tanks. You wanted to supervise the disposal of your precious fish, your pride and joy. Dad took them over to Hertfordshire Fisheries. They put them in a quarantine tank and promised to sell them on. On the same day dad took you in the wheelchair to see all your colleagues on the shop floor. You knew it would be the last time that you would be there. How proud you were as a manager, how proud you were then. Not asking for sympathy, just stating the case and inviting everyone in to see you. Just catching up on all the gossip. And they did come to you Steve. Your friends and colleagues visited daily. Every post brought mail for you. The phone never stopped ringing.

Saturday 16th May

Richard, dad and Mike cleared all your belongings from the flat. Richard said that he and dad just cried all the time. I don’t know how they did it, clearing away your life before you had died but you wanted it done. You wanted to know that no one had to face that task when you were dead. It was on this day that you asked Kate to come over for the day, she never left. You needed her too now. It made me so happy to see you two deep in conversation, brother and sister together again. She was so thankful to be useful, to be included as one of your carers.

Sunday 17th May

A glorious day. Philly, Louise, Dan, Kate, Richard, you and me for a BBQ. You managed to get down stairs and walk with the frame. This would be the last time you did this yourself. I brought the commode down and put it in a discreet place in the garden. We spent the whole afternoon in the garden. Much fun and laughter. You enjoyed your food. You were on massive doses of steroids and were always hungry, although you said that you were finding it difficult to chew. We got by, we just cut things up nicely before the food got to you.

Monday 18th May

Sitting on the edge of your bed getting dressed that morning, your arms got stuck in your ‘T’ shirt. You lost your balance and fell back on the bed onto your back. Only a 45% fall onto a soft bed but another tumour in the lumbar part of your spine trapped your spinal cord. I will never forget your scream, your howl of pain as you fell. Instantly, you lost the feelings in your legs. You were so close to me, but I could not react quickly enough to catch you as you fell away from me. You asked to clear away modelling kit. “I won’t be flying any model planes now”.

Tuesday 19th May

You could no longer walk. A hospital bed was delivered the next day. The bed came while we were at Mount Vernon for you to have more radiotherapy. We went by ambulance. They carried you down stairs in a special chair. I took down the name of the maker and ordered one that afternoon. You enjoyed being out in the real world again. You get a good view from inside an ambulance. You made the most of every bloody little thing, chatting away to the ambulance staff as it you hadn’t a care in the world.

You now needed so many aids for us to help you. Two people had to lift and move you for even the most simple of body functions, like getting into a more comfortable sitting position. A shower seat, loo seat and support, commode, washing chair, monkey bar, wheel chairs, ramps, bed table, a special lamp, an ambulance chair and sliding boards not to mention the ever changing drugs. We even hired a motorised scooter in case you wanted to get around in the town. Always planning, making the best of every day. Everything came (or went) as we needed it. The support was brilliant Sue, Tracy, Ros, Social Services, occupational therapy, physiotherapy, the John Lewis chaplain Peter, the district nurses and eventually Marie Curie nurses. Nothing was too much trouble. But this was all because of the way you faced each day with so much courage, patience and humour. You were losing so much day by day. You had lost the use of your legs. The tumour pressing on your brain stem was slowly making you lose control of your facial, neck and chest muscles. You found it increasingly hard to chew, swallow, talk, hold your head up, breath, cough and even smile. But your smile never left your eyes.

Throughout all this you never lost your dignity as a young man. You allowed me to look after your body as I had when you were a baby. I fed you, washed you, wiped you clean but you remained in control. You never complained. You were always grateful; best of all you were loving and trusting. The greater your physical loss became the more your spiritual belief strengthened. Peter was a great comfort to you as was Brenda the Hindu night nurse. I felt so close to you Steve as the end came nearer. We planned a treat for each weekend of those three weeks, BBQs in the garden. First the cousins, then your friends from work, then the family. All lovely days with conversation, music and laughter, all splendid celebrations of love for you my darling son. Strong young people carried you into the warm summer light. Great days!

Tuesday 2nd June

It started about 6 p.m. you needed a week but couldn’t go. We tried all the usual things but to no avail. You began to get very distressed and begged me to phone the doctor to be catheterised. The duty doctor would not come out and told me to send for an ambulance. How ridiculous, to even think of subjecting someone as sick as you to all that palaver and waiting. He wouldn’t even phone the district nurses to authorise them to do it. I phoned them. Fortunately they had your notes which told them your case history, about your abdominal tumour and that you had been catheterised twice before. They came and sorted you out but it took some time and you did not get relief until about 10 p.m. Poor Steve, it was driving you mad, almost worse than pain you said. I gave you an injection of diamorphine to try to relax and calm you but the only thing that seemed to offer any relief was cannabis! You had several joints that evening! What a case for the medical use of cannabis! Over the weeks cannabis has been an important drug in the battery of drugs that we have tried to ease your pain and make your last weeks bearable. I think the fact that you could smoke it over quite a long time was a factor. What relief it gave was instant and you could keep topping it up as you smoked. Most of your drugs were given orally, you just swallowed them down quickly and waited half an hour or so for them to start to work. You were very good you didn’t over indulge. You were always mindful of the fact that this was our house and that we were taking the risk too. I have always thought that cannabis should be used to give relief medically and this was proof before my very eyes. I would quite happily have gone to prison for letting you and your friends smoke in this house, for my belief that cannabis helped you to cope not only with your physical condition but mentally and socially too.

Thursday 4th June

As you felt your strength slipping away you made it clear again to your doctors that you wanted to die at home. You asked them to help you with extra sedation when it was all too much for you. You didn’t want oxygen, tube feeding or more drugs. You didn’t want to be resuscitated. You were afraid of ending up like the men you had seen in Mount Vernon, on oxygen, drips and heart monitors, dying publicly. You said that you had seen the fear and sometimes panic in their eyes. You didn’t want to experience that fear. You had made all this quite clear. In the last two days you became too tired for lots of visitors, only three special friends, Warren, Steve and Chai. You will wanted to be clean, to smell nice. You asked me to wash your hair, to shave you. In control to the end. I was so gentle with you, just as I had been when you were a newly born infant. You were so precious so perfect. Your trust was total. I knew you would want the driver for extra morphine when you refused strawberries and ice cream. “Sorry mum”. Not even the strength to eat, not even for me and yet later to write and then whisper the words, dictating messages to special people. Tom, Jez, Val, Philly and Veronica you wanted them all to have a copy and a few extra special words for each of them. I went on writing those letters the next day as I sat with you waiting for your last breath. I read them to you again. I like to think you could hear me. You struggled on but every little thing was such a great effort. You could hardly breathe in those last two days, mucus had collected in your bronchial tubes, and you couldn’t cough up the phlegm. You had bronchial pneumonia. We tried to help with exercises the physio had taught us, it would work for a short time but then you would get congested again.

Friday 5th June

I watched you sleeping your breathing rattled gently. I had a bowl of steaming water with eucalyptus in it to try and to ease your breathing. You had liked that as a child when you had a bad cold. When you woke you turned on your back and pulled my head down to you. You kissed me and whispered for the last time “love mum”. What precious words Steve, they have meant so much to me over the last difficult weeks without you. When we sat you up you were fighting to breathe, the mucus thick in your bronchial tubes. You indicated that you needed water but couldn’t suck from a straw or sip from a spoon. “Help me” the last words you spoke to me. I went to fill the syringe with a sedative and Richard to phone Tracy. You gave the thumbs up sign to Rose when she told you that the doctor was coming. She came in seven minutes and gave you the sedative, Telling you quietly that it would help you to relax and sleep very quickly. Your eyes still expressed trust, there was no fear or panic as you drifted back easily into sleep again. I held your hand sand stroked your arm. I put my head close to yours on the pillow. Then twelve hours of ‘chain-stoke’ breathing, a sort of coma. You didn’t regain consciousness, but I like to think that you could hear us all talking to you. Philly came from Norwich. Warren, Steve and Chai were with you until two hours before you died. We all shared in those last hours saying our goodbyes again.

By early evening just Richard, Kate, Philly, dad, Kate B and I were with you. We talked to you and caressed you. We told you how much we loved you. Rose left quietly. Peter came to pray with us all. Over the last weeks you had found his prayers a comfort sitting in the garden under the apple tree. We all prayed in our own way for your departing spirit. I was so grateful that all the family were there with you.

At 9.10- p.m. you took a long breath and stopped, after a minute you took another long, long breath, like a sigh. So peaceful, no pain, no loss of dignity. We had promised you that Steve. You trusted us all and we didn’t let you down. I went to phone the doctor and the district nurse and you took two further breaths with everyone there and then your body was at peace. How peaceful and beautiful death can be when it is a gentle release from a progressive disease? When death has been accepted, as you had accepted it, without fear. Your courage in the face of death has taught everyone who came into contact with you such a lesson. You have enriched our lives with your maturity and strength of character. I am so proud to be your mother. I was so proud to hold you in death as I was proud to hold you when you were born. When everyone had gone I release pain, anguish, love, relief, tenderness and fear in a great rush, just like at your birth. I could hold you, rock with you, caress you without hurting you. I could kiss you and keep your cooling body warm with mine. You know how much that hour and a half meant to me. Richard stayed with us both. He never asked me to stop, just allowed me to let all the pain come out, all the love. At about 1 a.m. I was ready to let you go and Richard phoned the funeral directors. In the privacy of the night they took your body away from us. I did not watch just lay in bed starring at the ceiling. They were so quiet no fumbling or banging; with hardly a word spoken they let themselves out. I remember the sound of the hearse, it purred away with you inside. I panicked I couldn’t remember what you looked like. I had been so close to you and now you were gone for good.

Life Without Steve

One of your doctors, Ros, wrote in your notes, “This young man has inspired me with his strength and courage”. Doctors see hundreds of people facing death, Steve. I think you were truly special. You were honest with everyone who came in contact with you. You helped us all to grieve by grieving with us. You cried gently with us, not for yourself, but for those of us you were leaving behind to go on without your sense of humour, friendship and love. You often said to me “I am crying because I am happy that I am so loved and cared for”. You cared for us all, friends, and relatives. “What are you going to do when I am gone mum?” you asked me. “What I did before Steve. Get on with living, working, and having fun, loving Rich, you and Kate. Doing what you did, making the most of every day”.

You had such a wicked sense of humour, I had never fully seen it before and you never lost it. You never lost your smile; it was always in your eyes. You never lost control of your dignity. I love you so much for the beautiful human being you were. You are a part of so many people now, Steve, you must be proud of yourself. In death you knew self worth. How much you lost my darling, but how much you said you had gained. “If I was not dying, these would have been the happiest three months of my life”. There you were, a handsome 24 year old, self-confident, stubborn, proud, witty, funny, arrogant, caring, thoughtful, tight, fastidious, tidy, friendly, considerate, a good listener, honest, honourable, loving, reliable, trustworthy and very hard working. You had gained promotion. I have kept your promotion letters, Steve. You had proved your worth as a salesman and a manager. You had saved your money and had £6,000 to use on travelling. You planned to go to Australia, to swim with your beloved fish. How I wish I could have taken you there. What a joy it would have been to know that you were surfing the great waves and swimming in warm waters.

July 15th 1998

I need to save all these personal things of yours. To save all the lovely cards and letters. So many people have written so many beautiful things about you, so full of fun and caring. The photos have been magic, showing a side of you I had never seen. All that larking about, the brilliant eye contact you had with people. You could make people feel very special, that’s why you could sell. So many of your friends have written and given me photos, they loved you too. I can’t believe the photo Chai did for Richard and me and Mike and Kate too. You on the John Lewis shop floor all ‘suited up’, so smart, so handsome, so relaxed. With your beautiful smile. I loved your hands, Steve. You had long fingers and there were always so relaxed, this photo shows them beautifully. I love the photo Warren took too. You all golden, all relaxed. The same smile, the same look, straight into the camera. You were very photogenic, Steve, aren’t I lucky to have so many records of you. You were a real poser too!! Suddenly, today I was able to go and look at the two videos Jo gave me. How lovely it was to see you move again. See you run, laugh, joke and pose at the football charity match in August ’97. Having fun at Martyn’s 30th birthday party, drinking playing games, chatting, relaxing and talking, just being you – alive.

It isn’t easy, Steve. You asked “What are you going to do when I’m gone, mum?” “Just get on again”, I said. But I can’t get you out of my head. I expect to see you again. I look for you even though I know you have gone. I hear your voice greeting me as you come up the garden, “Hi mum”. I see you kneeling by the pond watching the fish. I hear you whistling. I see you leaning against the work-surface in the kitchen drinking a beer. Your washing in a heap on the floor. Help me Steve! You were so strong. I know I owe it to you to be strong too. I owe it to Richard, Mate and to myself too. It is just so hard without you around. You consumed my life at the end. I couldn’t clean, cook, iron, garden, exercise, work or read the paper. I kept myself looking OK or you would have noticed and commented. Now I have to get all these things back. Now I have to reclaim myself. It is just so very hard without you, my son.

I know that I will have to go on writing when I feel like this. The thoughts, memories, feelings come piling in. They overwhelm with their intensity. The only way I can make this burden lessen is to write it all out; to focus on you in a constructive way. I want to write about the things I loved about you. I want to write about all the good things you said about being able to spend your last weeks with us at home.

Things that were good about you being terminally ill at home

Things that you said you liked about spending your last weeks at home

Having mum as your main carer and always knowing she could be with you in a few moment, I loved this too Steve.
Being able to have your room as you liked and add things that helped you to remain independent for as long as you could.
Being able to talk privately and at length with your doctors, Mac nurse, vicar, Marie Curie nurses, physio, district nurses and your special carer, Rose.
Being able to smoke in bed
Being able to smoke cannabis.
Being able to listen to music (at whatever volume)
Being able to eat when you wanted to
Being able to choose what food to eat and having an interesting and different diet (you loved your food, Steve and really appreciated any special efforts we made and the variety of food we gave you).
Being able to have your food made easier to eat as you found it harder to swallow without having it in liquid form.
Listening to Richard singing in the shower or garden.
Clean sheets, clean clothes and a clean bedroom and bathroom.
Being able to have a shower or wash when you wanted.
Being able to sit at the window and watch mum in the garden, look at the garden and the fish in the pond.
Being able to use your mobile phone.
Always having someone to talk to, whatever time of the day or night.
Being left alone when you wanted to be.
Being able to have the windows wide open.
Being able to have friends in at any time of the day or night.
Getting close to your relatives and friends just by sharing at length and talking and having those special quite private chats with us all.
Having instant pain relief top-up, controlled by you.
Having the privacy to say goodbye to friends individually while others were with the family downstairs.
Being able to have BBQs, highlights where lots of friends, relatives came to share and have fun.
Having dogs in.
Having your body massaged with cream, you especially liked your feet and legs to be massaged.
Being able to ask to be exercised (physio).
Being relaxed enough to find spiritual comfort and being able to talk about it.
The sound of birds in the garden and the water fountain in the pond.
The evening light on the trees in the garden and being able to see these and the sky even when you were lying down.
Always being able to drink what you wanted (your taste for drinks was ever changing) and to have iced drinks and a nice cup of tea or coffee.
Knowing that whatever you needed or wanted it was never too much trouble to ask for.
Being able to have the company and physical affection and love from those closest to you whenever you wanted it and being able to share your fears, tears, hopes, regrets and pleasures in the face of death.

The things that were good for us, you spending your last days at home

All the things that were good for you, Steve were good for us too, we shared.
They all made us feel useful, we could do something to help.
We could do things to help and please you each of us in our own way.
I kept you and your room clean with Rose, it was so important to you to be clean and to look and smell nice.
I was in charge of your drugs, what a nightmare, at least it stopped me drinking too much, I had to stay in control.
I learned to inject so that you could have back-up drugs quickly.
We all helped you move around, get downstairs, get into the garden.
We could all buy you special treats as you wanted or need them, it was so special and exciting to get you something you wanted now; I remember getting coloured notepaper to send to Tina, you had to have it.
Richard could cook for you and Kate and me, the last thing I could do was plan meals for myself, I didn’t feel hunger.
We could all have our private moments with you.
We kept your room spotlessly clean, kept getting or moving things for you.
We picked flowers from the garden, you loved being so close to the garden in those last few weeks.
Kate bought the new CD’s you wanted, shared her music with you.
as MC when your friends came to visit, keeping the conversation going if you were tiring, knowing when you needed private time with one of them.
Richard and I gave your friends food and drink and dried their tears.
We could all share your friends with you, they were such fun, I learned so many new things about you that could not have been picked up any other way. When it was all over and you were gone and the came to celebrate your life at your funeral, we knew them and they knew us. They have all been back Steve, we have all continued to support each other. We had a BBQ in your memory in July 1999, 40 of them turned up.
Kate rolled your spliffs, cannabis gave you such relief, it relaxed you and let you share a ‘recreational activity’ again with some of your mates.
Being there as your condition changed, sometimes from hour to hour, we had to cope. When we had to let you go to hospital and the hospice I lost control being “off duty”, afraid of what I might see when I next visited you.
We all gained in so many ways from watching each loving and caring for you and from watching all the professionals do their bit too. Because you were at home the professionals were always the same. We didn’t have the problem of not being able to see the right person who knew about your condition.

My good memories of you, Steve

Seeing you get so close to Kate, Richard and dad.
Looking at your beautiful hands, your long fingers always so relaxed.
Your smiling face, always ready for a laugh and a cheery word; you were a born optimist “why worry it might never happen?”
Watching the pleasure you got from music of all kinds.
Knowing the respect you had for me, you never let me see you with a cigarette before your illness. You struggled to the top of the garden to smoke until I said I didn’t kind you smoking in the house.
Sunday nights when you brought your wash over and talked about your day/week. You were always ready to meet and chat with our friends too, you were such a good listener.
The way you kept your pens and pencils, it was a joy to find them; all your pencils sharpened, different thickness and specialist drawing pens; you really loved art but didn’t give it enough of your time.
Your love of sport of all kinds, ‘Jack of all trades and master of none’. You took a very active part in so many different sports; you even taught yourself to surf in the last two years, bought your own board and wet-suit.
Your love of animals especially dogs; you loved our Maddy, the dogs and Gemma.
Monday evenings when you came over for a meal. Richard always made something special. He loved you too Steve, I know that you knew this. You didn’t have to articulate it; it was just there. On a Monday before he came in you would always share the latest state of your cancer or any worries. I liked it that you could share with me, you are still doing this Steve, helping me with my losing you.
The way you were so grateful for everything we did for you, you didn’t just expect it. Even your weekly washing, you loved it all nicely ironed; you were always so clean and smart.
Your love of nature, the sea, mountains, fish, sharks, animals of all kinds, flowers and sunsets, especially as seen from your bedroom window.
Your ability to accept all the help you needed at the end of your illness; you were so dignified it was a pleasure and an honour to care for you.
How you loved us to move your legs, to exercise you. My poor darling, how did you manage to go forward with all that you were losing? I guess because you accepted where it was all leading and saw no point in wasting energy being angry, it would not have helped you. Your gentleness and courage made everyone admire and love you so much.
The way you could think so deeply; always a deep thinker Steve, looking out of the window into the garden with your music playing.
Your pride in your body, your physique. You were late to mature but thankfully you had a fine young body by the age of 24. So handsome, although you didn’t recognise this, the girls did, you had no shortage of girlfriends. How great the loss of your physique and libido was for you. “Look at my legs mum” “My tackle is disappearing, it is half its size” “I can’t even get an erection anymore” “why don’t I crave sex anymore?” You shared all this with me. So proud, yet wise beyond your years in courage to take it all and mourn your own losses.
Your gratitude and pleasure when Rose or I massaged your feet, legs, arms, neck and back.
I loved you so much for being able to mourn your own loss and let us all mourn with you.
Your ability to cry gently out of happiness and from disappointment too.
Your search for your spiritual self. I was so proud to have been part of that, Steve, to see your spirit grow strong as your body grew weaker.
Your acceptance of my need to touch and kiss you. I wish there had been a special girl in your life to love, hold and kiss you too. Tina did and a good job she was generous with her caring and touching.
Being able to lie with you, cry with you, share with you and comfort you when you had nightmares or where your loss was too great and you needed me to grieve with you.
Thank you for sharing your life with me Steve. It made me feel so special and close. You could have lived to three times 24 and we would never have had the opportunity to become as close as we have with your dying peacefully in the way that you did.

July 25th 1998

I’m almost back to normal physically, Steve, During your illness I could do very little except look after and care about you and your friends. I didn’t cook, clean iron or garden (unless you wanted me to and were watching!) I only cooked for you. We got Wyling in to clean “you are a pretty girl” you said. She is lovely and so gentle and quietly spoken.

I couldn’t exercise. I went to school for a couple of hours a day because you wanted me to – it was normal. I kept myself dressed well and made up because you would have been upset if I had not looked after myself. I only did it for you. Now I have to learn to do all this all again, for me.

It is all coming back, Steve, cooking, cleaning (I cleaned the kitchen cupboard today!) washing, ironing, sewing, gardening, enjoying going out and TV again. I have even started to exercise again. I have used my exercise machine, been swimming and walking and been out on the bike. I’m even looking forward to going to Yorkshire for a week this summer. I know you know all this but it is good to write it down because it charts my progress for me. I am fully involved in work again. It is the holidays but I’m working everyday to get ready for the OFSTED inspection in the second week of September. I have moved rooms at school and have taken the chance to do a full audit, you would be so proud of my “housekeeping, everything sorted, filed, and labelled, including 81 video tapes!” The only thing that still eludes me is my libido. I want sex but feel nothing. Poor Richard, he needs it so much so I go through the motions. I haven’t deceived him. I am honest about how I feel. It is not mental. I love being held and touched and stroked and loved, I just don’t feel sexual.

We are going to the hospice today to give them a cheque for £1,090.50. The same went to Macmillan Nurses. How wonderful my darling, £2,180.00 raised in your memory. How I wish you were here now instead of my giving people money for you. It will be very good to share my photos, etc, with Ros and the nurses. They all have such fond memories of your courage and strength and were so glad you died peacefully.

I’m looking at y our photo now, Steve. I love you so very much my darling; you’re the best. It still hurts so much Steve, please help me, I need your strength. I need to go forward again. If only you were around somewhere on this planet.

REMEMBERING STEVE

March 1999
Foreword to ‘Remembering Steve’

In the days, weeks and months after Steve died my grief never left me; only the way I grieve changed. Different stages came and went, in huge overwhelming waves. I had no idea what to expect. I was not prepared for the different ways human beings handle sorrow and loss. I only knew the way I cope, day by day. Looking back it all seems very selfish.

Steve was no longer there. At that time, all I could do to keep him in my life was to talk to relatives and friends about him. I needed to share. Share the kind words that had been written to Steve and his family, and look through the photograph albums. My husband Richard, said “It was like sticking pins into yourself”, but I found sharing an enormous comfort and I am so grateful to those many people who came to share with me.

I was also able to find some comfort through writing. After Steve died, I made cards and I wrote to all his relatives and friends. Then I wrote to Steve. Pages and pages of pain, anguish, love, all mixed with relief that the horror was now over. It just poured out, all the fear of the last six years. Pages of happy memories, pages of dread and hopes. Pages remembering the bitters sweet of the last three months. Through all this, the cycles of grief went round and round. Searching, anger, hysterical sobbing disbelief, numbness. I always returned to Steve and what he had wanted. He wanted me to try to be normal again, to return to work. He knew it would be hard for us all without him. Slowly, I began to be a true part of life again, not just going through the motions. As the pain lessened, the files and albums remained untouched. The need to write daily subsided.

One warm July night, alone in the garden at midnight, the words to express a beautiful memory of Steve came into my head. I wrote a poem. On another occasion, sitting next to an old man in a wheelchair and later, seeing young men in the pub was so heartbreaking that it triggered ‘The Way You Were’. I had begun to write this little book ‘Remembering Steve’. The memories and emotions nearly always came into my mind at night, just before I drifted off to sleep. There was an urgency to write my thoughts down immediately, as in the morning they are gone or fragmented. The words came in short prose and poems, almost jerked from me.

I have put all these thoughts down to prove to Steve and myself that I am recovering. So why do I need to share these words? I have produced something creative and I want to finish it off properly. This format has given me the chance to share Steve again; by reading my memories, you are sharing and remembering Steve too. Hopefully, it will help others who are going through grief and loss. Perhaps it will also help those many professions who have chosen to care for those like Steve and his family. “Out of darkness into light”.