Cancer In Young Adults ... Through Parents’ Eyes

Narratives & Stories

Matthew's Story

Matthew was diagnosed with Ewing’s sarcoma at the age of 12. His family now run a charity (Matts’ Beacon) based at the Royal Orthopaedic Hospital in Birmingham which raises funds for research into bone cancers in youngsters.

14.08.75 – 31.05.97

Matthew was first diagnosed with Ewings Sarcoma at the age of twelve. He was told exactly what was wrong with him, and also knew that he might die. His attitude was incredible. He wasn’t afraid of dying, and he endured his treatment with such courage. He wanted others to know that cancer was not something to be afraid of. We firmly believe that he recovered from this first bout of bone cancer because of his strength and stubbornness.

He was given the ‘all clear’ at the age of eighteen, and we held a huge party to celebrate. We all believed that he had beaten this disease. (However, in retrospect, I also believe that we all knew it would eventually kill him). Matthew himself often said that he would not live to be an old man.

The cancer returned in November 1995. This time a huge tumour had developed on his breastbone. It was as big as a rugby ball – it had squashed his right lung, and was crushing his heart. Again Mat endured the indignity of chemotherapy, and the long slow treatment back to health. At one low point during his treatment, he told his older brother that he was ready to die. He had had enough. The treatment was draining his energy. He was tired of being unwell. He wasn’t afraid of death at all. But Nathan, his brother, begged him to get well. He told Mat that we all loved him and wanted him to live. So Mat decided to beat this disease yet again. Several times he was admitted with symptoms of pneumonia, and was always confident that he would get well. At one point, he got an infection in the line in his chest. The doctors gave him Codeine as part of his treatment, and he became seriously ill. His body began to swell. He looked dreadful, and when he was at his lowest the doctors realised he was allergic to the codeine. He took a while to recover, but was soon home again. After six chemo treatments he had surgery to remove what was left of the tumour – an horrendous operation where his chest was opened and the tumour removed.

Mat was in hospital just five days. He had his operation on the Wednesday and was home on the Saturday. He must have been in terrible pain, but he insisted that his brother and his dad take him to the pub that same day. He quickly recovered. By November 1996, he was having radiotherapy to kill off any residue and often insisted on driving his own car to and from the treatments. Someone always went with him, but he stubbornly wanted to be in charge.

By Christmas he was well. The doctors were all astounded at his remarkable recovery. I know that they didn’t expect him to survive.

He found himself a new girlfriend, and began work experience, making himself a computer in the process. He was better than he had been for a long time. We really thought he had beaten cancer again.

Then he began to complain of pain in his kidneys. Tests revealed a small cyst, which the doctors said they could remove. Mat wasn’t perturbed by this. “Well if necessary they can take away the kidney – I can manage with one”.

Before they had change to do anything about the kidney, the cancer overtook things. Mat awoke screaming in agony. He had never ever before let us know when he was in pain – so I knew it was serious. That morning we went by ambulance to the Royal Orthopaedic Hospital and Mat was immediately taken or x-rays. I knew that he was dying. I was his mother and instinctively knew that he was not going to survive this.

Mat also knew – he told the doctors, he told the nurses. He didn’t want his family to know, but I knew. I cannot explain the pain, the utter helplessness that I felt. I went home and left Mat to the care of the doctors, but two days later we fetched him home. He was to return to the Woodlands once more. He spent two more days undergoing tests, useless, hopeless tests that were needed to confirm that he had no chance at all. On the Wednesday we were all asked to attend the hospital, and were told by a party of three doctors, a nurse and the Macmillan nurse that Mat was dying. He took the news with the usual courage. He knew already anyway.

We left the hospital and on the way home he said to his dad, “Let’s go to the pub, dad. I want to tell my friends myself. They have to know that it is going to be wonderful. It’s the right time to die”.

The next seven weeks were spent allowing Mat his own time and his own space. Letting him make us laugh at the arrangements he was making for his own funeral. He asked friends to carry his coffin. He didn’t want his brother to do it. He chose six of his closest friends and made them promise not to disappoint him.

He said that we all must wear bright clothes, he asked for helium balloons to be put in the hearse alongside his coffin. He wanted all the cars decorated with balloons. He chose his hymn – Jerusalem, and asked me to choose another one of my favourites he insisted. He also chose the songs he wanted playing. ‘Who wants to live forever’ by Queen was to be played as we entered the church. ‘He ain’t heavy, he’s my brother’ – because he wanted his brother to cry and knew this was the exact song to make him. He said he had another song which only Nathan knew about, and after his death Nathan would let us know what it was. This song had to be played as we all left the church. A few hours after his death, Nathan told us – the song was ‘Always look on the bright side of life’ from the Life of Brian (Swear words and all).

Mat carried on with life cheerfully, never complaining, always laughing. He lived life on a smile and kept telling us all that he was going to a wonderful place. “Just imagine I’m going on a aeroplane, but I won’t ever come back” he used to say. (He had gone to stay in Australia with his aunt along at the age of ten, and said to imagine that was where he was going again). He said it was going to be a great adventure. He truly was unafraid.

His girlfriend remained with him. She was very strong for him, and he enjoyed her being around. She would take him places when he was unable to drive, lifting his wheelchair into the boot of the car. He tried to do the things he wanted to do. He went carting twice in those last few weeks, laughing and loving every second of it. He bought an electric scooter when he finally was unable to walk far, and sped around the street like a child with a new toy. He looked old and ill, but he made us laugh every day. We miss his laughter, we miss his wonderful sense of humour, and we miss him every second of our lives. When he died a light went out. We can never rekindle it. Mat was very special – and we often wonder why someone who loved life as he did had to endure so much pain, and suffer so much. We remember with so much joy the things he did. He was always up to mischief, always having the last word, always having the last laugh.

Just six days before he died, Mat collapsed. He couldn’t get up, and his dad and his brother put him to bed. The next few days were awful. He had pneumonia. He was dying in pain, and not complaining, but trying his best to make us laugh. How do you laugh when your son is dying?

Mat finally gave up his fight on Saturday 31st May 1997 at ten past one in the afternoon. The most wonderful memory I have of this day is that I had left him holding his brother’s hand. Someone had made me a drink. The house was full of people. His friends had called round one by one wanting to say goodbye. No-one ever expected this day to arrive. He had always beaten this disease – they all expected him to sit up and shout “fooled you!” But he didn’t. I was out of his room just drinking this drink, when my niece ran in and said “Mat wants you”. He had been semi-conscious until then. I ran to his room, stroked his hair and asked, “What is it sweetheart, what do you want?” And he looked at me and smiled and his eyes rolled back and he was dead. It was over. It was as though he had to say one last goodbye to me.

You ask what effect it had on our lives?

Living all those years with the threat that the cancer might return was like living on the edge. There was always that fear and it is painful, terrifying and unexplainable, knowing that it might strike again. As a family we had to endure this. Mat was always the strong one. “I know one day it will kill me”, he said. But he was never afraid.

His brother was so very close to Mat. He was away at university for three years, and said he always had Mat on his mind. There was always that fear as I have explained before. Nathan always believed in God. His belief took a U-turn, when Mat became ill. To this day he doubts that there is a God. He still believes that there is something more powerful than us, but cannot explain what is it. He says that he feels relieved that Mat is dead. There is no more pain for any of us. We know that Mat is better off. Nathan feels comfortable with life now. He misses Mat more than any of us. He has never been able to mourn. He doesn’t cry anymore over anything. He has built this wall around himself, trying to be strong, but scared of the wall crumbling and himself with it. At 27 years old he admits he is frightened of crying, because he doesn’t think he will be able to stop.

When Mat died Nathan was the one who remained strong. He took over, and did the things his dad should have done, because his dad has been unable to cope with losing Mat. My husband has too many regrets, and says he should have had more time for Mat. He has never put his arms around me since Mat died and tried to comfort me. He has tried to become strong, but inside you can see that he hurts. Only now three years after Mat died is he beginning to talk about Mat. Both he and Nathan often laugh about the things Mat got up to. But I wish Nathan would cry, and I wish I had my husband back the way he used to be. We have become separated by our grief.

Mat’s sister too has withdrawn into herself. She has become hurtful on occasions. She tried to be adult, but deep down there is still a little girl who hurts. Her life was thrown into turmoil when Mat first got sick at the age of twelve. She was nine years old and because I was at the hospital with Mat a lot, she spent over a year virtually living with her nan. She got spoiled and it shows. She had to sit her A-levels just two days after Mat died, and didn’t do as well as she expected. She has, however, continued on to university where she is training to be a teacher – her lifetime ambition. She hates being too far from home and has obtained a place (doing her PGCE) at Bath, around 120 miles away. I am holding my breath until she finally gets there. I am afraid for her.

And myself, I fortunately had a good job – I got leave while Mat was ill. And I am sure if I didn’t have my work, I would have become ill. I do too much, and now we have the charity. We work tirelessly. We don’t make a fortune, but we hope that Rob Grimer and his research team can find better treatments, and hopefully cures for bone cancers.

Mat’s short life was affected beyond anyone else’s. He was at the age of 21, aware that he was dying. He must have gone through the terrors we all experience when we think of death and dying. (Although I can admit now that dying holds no fear for me). He had little chance of achieving his goal in life – to work with computers. He loved his computer. Each time he saw light at the end of the tunnel, he became ill again. He never had much chance of doing anything with his life. He enjoyed his girlfriends and had many. He even became engaged, but broke this off when he got cancer for the second time. Cheryl wasn’t coping well with his illness, and he gave her the opportunity to get out of the relationship. Before he died he admitted that he still loved her, but could see that she didn’t understand about the illness.

He passed his driving test first time and had several cars. He wrote his first one off, twice. His second one was stolen and this was the first time I ever saw him unhappy to the extent that he cried. He owned two minis and finally got a lovely new Peugeot 306 just after he was diagnosed with cancer for the second time. His illness never stopped him doing the things other lads of that age did. If he couldn’t drive himself, he got his brother to do it for him. He loved the pub, he loved playing darts, and loved ‘the crack’, the life in the pub. He drank two pints and was drunk. He loved red wine.

He loved night-clubs, he loved music, he loved bowling, driving, winding up his brother (especially winding up his brother). He loved food. Steak, chicken nuggets, bacon sandwiches, beefburgers, crisps, buts, sweets – he loved everything. He would eat peanut butter from the jar with a spoon. He would hoard biscuits, and sweets in the cupboard beside his bed. He would keep his brother awake all night, watching movies and drinking red wine. He would insist on eating steak at three in the morning, knowing full well that Nathan had to go to college the following morning, and he himself could lie in. He never stopped eating and he never got fat.

He was not fazed by his illness. He never said “why me?” Every day of his life, he would put his arms around me and say, “give me a love, mom”. I miss that more than anything. But strangely enough he made many predictions before he died, all of which have amazingly come true.

He told us he would die on a very hot day. It was tremendously hot. He told us he would go with a bang. The rear tyre on his scooter exploded with such a bang that the foundations of the house shook, just an hour after his death. He said he would try to let us know that he was OK. And we are still haunted by him. Things go missing, even a huge 18 inch urn which I have on display in my lounge, went missing for ten weeks. I thought someone was joking with me. But just before Christmas it appeared in the most ridiculous place. Every corner, every cupboard, every part of the house had been searched and it just appeared one day. Keys frequently disappear from places where we know they have been put, my husband’s darts have moved virtually in front of our eyes. We love it, he is still here.

I feel that Mat was special to us and to his friends. His life was meant to be short. He gave us so much love, and although we miss him every day we know that he is OK now. He is laughing at us, and smiling with us. We do silly things now. His grave is a riot of colour, beautiful windmills, and silly toys are placed on his grave. There is a sketch of Mat’s face on the headstone, and we all swear his smile gets bigger each time we visit him.

I cannot fault the treatment of the doctors, and the nurses. I would have liked more information about how the illness was expected to progress, but since Mat’s death I have searched the internet, and I feel that some of the information would have been too great to bear. The doctors were always honest with Mat. If he asked a question they answered him honestly, knowing that he couldn’t be fooled. He knew too much about himself. He loved to be home, and would insist on finishing his chemo at home. The final chemo drug could be administered by pill and he found this out and insisted on having his last dose of each treatment at home.

We all feel enriched by having Mat as part of our family. Our lives are better, more fulfilled. We have few regrets. We just have to learn to cope with life without him. This can only be achieved with time.