Narratives & Stories

Sean's Story

Sean was aged 17 and still at school when osteosarcoma was diagnosed. Like Matthew and George he was treated at the Royal Orthopaedic Hospital.

Account of My Son’s Illness

When Sean first became ill, some instinct told me that there was more than met the eye. Cancer had crossed my mind immediately and was at the back of my mind. However, he was seen by doctors who had not diagnosed him, and so he was not treated for it for a long time. I was trusting the doctors’ wisdom, thinking they must be right.

It is uncanny what happened. One of the reasons I thought it might be cancer at first, then went off the idea was because a friend had had a similar story with her boy ten years before, but there were too many similarities with her life and mine to be just a coincidence. I would not tell this friend for a long time when we knew about Sean because of the similarities. This did affect me, cushioning me, making me very positive and also guilty feeling. My husband took Sean to the GP of his choice (his friend). Sean told my husband, I found out later, not to let the doctor fob him off – it was serious. My husband believed the doctor who said, it was all right. Later my husband encouraged Sean to sue the doctor(s), who he blamed. The doctor was at fault, negligently medically, but we were at fault, morally too. Had my husband and I been communicating, Sean may have told us more and sooner; I could have impressed our concern to the doctor more deeply.

There came a point with Sean when investigations accelerated and then we were told it was cancer. I felt shock, guilt, that I had not acted on my instincts but was very positive. By the acceleration of events I should have thought it was cancer (my husband did) but I had gone off this idea, thinking it was infection or something, like the doctors.

We felt helpless – like children. I had been able to talk to my children about sex, but this was different. On the way to the ward I kept seeing ‘oncology’ signs and said to a nurse I did not like seeing those signs. (I was beginning to wonder then).

The staff were wonderful, saying they would help us all they could and they did. I was impressed with the needed help I got from every type of service in the hospital – and connected.

A MacMillan nurse – Clare introduced herself. She is wonderful, the awful shocking – having a MacMillan nurse was final. You only have a McM nurse for one reason. We could not deny the situation however much we wanted.

A social worker – Hannah introduced herself. I had had no idea that Sean (or me as his carer) would need one. Hannah was brilliantly helpful. Hannah understood all problems, everything, and found ways of remedying problems – practical, emotional, social, financial, etc. I would have been lost without Hannah who is very caring. Everyone leaned on Hannah – all patients and relatives.

I felt guilty about Sean as though I had let him down. I suppose that was helplessness and grief. My three other teenage children coped very well but they were affected by the strain to some degree.

Sean took the news (aged 17 then) very well. Perhaps he was protecting us. He did ask nurses lots of questions and must have been worried. What I noticed was that all the young people (including Sean) on the ward seemed very mature and wise.

Sean was positive. My husband was. I was. We all were. We all gave each other positiveness some of which was inherent. Sean, I felt was picking up my vibrations and I was his. Part of my ‘mothering’ was being matter-of-fact and Sean mirrored this. I had gone to pieces when first told but tried to conceal my anxiety from Sean (who probably realised). Sean liked to play jokes on people. He was good at that so this made me and many others laugh a lot.

The worst time for me was when first told and the first time ‘hot spots’ appeared on a scan. The first ‘hot spots’ were infection originated as the surgeon suspected. When Sean much later was coughing, each cough, was like a wound to me. At the first ‘hot spots’ around which the time of commencing litigation I had intense grief and asked for counselling which was of a helpful supportive nature.

Sean did feel weak at times with the chemotherapy, but despite all he went through, surgery, radiotherapy, stem therapy etc., I think his hardest times came later.

My husband and I were abrasive to each other with the strain. I am suffering loss now.

The illness was gradual, so we adapted to the situation gradually. Sean did look worried at times. I tried to reassure him by body language and action. He was half child and half man. I was concerned about getting reassurance wrong and found it difficult a times to talk in case I accidentally made him feel worse. I would tell Clare and Hannah how I felt. Both were very good at talking with Sean.

Sean was a lovely person. I am his mother and every mother (and parent has the loveliest child there is). Sean initially said he knocked his leg on the newell of the stairs – very much later he changed his story saying he “crashed at ice-skating”. He was adamant about his stories but I think he was looking for explanations for the pain. I think my own feelings are normal and are really just the helplessness of looking for reasons why and do not and did not dwell on them.

Sean’s school and some of his friends were brilliant. They helped him and it must have been hard for them – so young, half-children themselves.

In between therapies Sean continued to play drums in his group. He did not have a girlfriend, but many girls (and boys) were fond of him.

The whole illness was a strain and particularly clinics. I could see the expressions on parents’ faces were the same as I felt – waiting for the results, dreading the thought of bad news. Clinic queues are cruel mental torture. It is a wonder that parents are sane (and they have other children with needs too). I coped because of the tremendously good support I got off Hannah and Clare mainly (I think other parents did this too). All round understanding, support and care are much better than they were for example thirty years ago, and that helped.

I would cry at times, at moments of stress and when told about the prognosis. However, I remained very positive and so did Sean. On separate occasions two nurses said I was the same as any other parents (looking for blame, etc). I would have been positive anyway and I was prepared for anything but I was certain Sean would survive because of the uncanny similarities between me and my friend.

I do have a spiritual belief that there is a God who cares for everyone and everything and that helped. At least two nurses said I was strong “how do you cope?” and others said that too. I said my spiritual beliefs helped.

I also seem to have met a remarkable number of parents who have lost a teenage child or young adult, usually through cancer, and although very upset I refuse to feel sorry for myself or monopolise grief.

Sean needed radiotherapy to his skull and nearly refused to have it at the last minute because of hair loss. Playing in a group he was in public view. In the end he had the radiotherapy and was left with a bald patch. This was also an embarrassment because he could not go into night-clubs with friends as he did not want to take his cap off. Arrangements were made for a hair piece.

I felt very protective about Sean. He did his A levels, passed the driving test, passed music exams, and more. Now he has gone. Seeing all the girls who liked him reminds me of my loss. I used to love the waves he gave me as he drove off in his car and his lovely smile each time. In the soap on TV ‘Coronation Street’, the fact that Natalie has lost her son in the story helps me a tremendous lot as I no longer deny Sean has gone too.

Sean’s sperm was saved and left it to his partner (assuming he had one). I have spoken with the Sperm Bank and it will be destroyed. That is the law and I think it is right. (I am Roman Catholic and was a bit worried about what would happen – ethics, etc).

Sean’s illness went very well, then suddenly unexpectedly ‘hot spots’ appeared on his lungs again and he went downhill from then on, worsening four months after they appeared. He did not respond to any treatment. Everyone was disappointed because we all thought there was a good chance the cancer had been zapped. He was sickly after all the treatment and the illness and Clare, who had signed Sean off her books, reappeared again.

We were all under a strain and it showed. Each one of us put on a brave face (I can see through everybody). Sean assured me at one stage he was quite all right (aged nineteen now) but I could tell he had been crying. My daughter off-loaded to her friend who told her mother who told me. My eldest boy was away from home but got a bit ‘boozy’. The school were very good to Angus, my youngest – just fifteen. I assured Angus his needs were important too. He had seen the brunt of Sean’s illness, sharing a room with Sean, .Angus coped well. He was attentive to Sean and good company. I was concerned about Angus and had wondered should he go and stop with my local friends (for Angus’s sake). All nurses told me not to arrange that; Angus would cope better being involved with Sean, and they were right. Hannah and Clare were very supportive to us all. I and Sean off-loaded to Hannah and Clare (separately). Sean also off-loaded to his friend which is what he wanted.

Clare and Hannah had a long chat with me to anticipate future needs as well as the present ones and to offer all sorts of help. I knew I could not ask for any kind of help. I came to the conclusion that the best way of helping my husband was by helpful actions and non-verbal communication.

People from the church were good to Sean and me. They have understanding ways of doing things. I appealed for their help and got contact arranged.

When Sean and I were told it was definitely terminal by the doctor, he said he had thought about death. We were told very nicely with a nurse present. There was a lot of eye contact inter-changing between us all. He was disappointed and we both cried afterwards – not a lot. Sean said “oh well, there is no point in getting upset”. I put my arms around him and hugged him and said “I had wanted to do that for ages”. The oncologist had wanted me present when speaking to Sean, so I knew what he was going to say. Doctors do not see relatives for trivial reasons.

Sometimes Sean’s friends would ring him and sometimes Sean would say he was to ill to see them. This may have been the case, but I always though Sean was better when he did see them (the friends being polite always telephoned first).

At home I though Sean could be too isolated. Then, his old schoolteacher, his brother’s form teacher suddenly took an interest. Hannah was doing all she could to help too – arranging a trip to Lourdes which is what Sean wanted. Clare was also supportive. This schoolteacher was a Godsend. He arranged for Sean to go out with friends for a meal. This was wonderful for my Sean – the socialising and the interest of this teacher. The teacher saw him several times. Sean did not like seeing the district nurses too often as they reminded him (not intentionally) of how ill he was. He did not mind Clare or Hannah.

When on the ward, I gave and got support from other mothers.

The illness progressed rapidly and it became evident that the end was near. I had a cry on my own, then felt I had to be strong as I was Sean’s mother. A strength did come over me, and the nurses were helpful and supportive. I looked at the situation objectively, detached as well as being involved. I had acted this way throughout the illness from time to time and this helped me cope by weighing up the situation.

Sean realised he was near the end, but the doctor told him too, very nicely. The doctors also, were very attentive and trying to find ways of helping him. They and the nurses made him very comfortable. A priest came to Sean several times and that also made Sean feel secure (and me). Hannah and Clare also came (but we didn’t know Sean was going until just after they had gone). Other staff came to see Sean, who knew him, and this ‘normalness’ really helped Sean (and me).

As Sean was deteriorating (before this stage) moves were being made for him to visit Lourdes by Hannah. Although he did not make it, because the trip to Lourdes was set in motion he was given hope, something to look forward to, much needed help.

Sean and I were very close. He needed me. I was with him all the time. He told me he felt weak and ill. The doctors did make him comfortable and everyone was caring and good. Although in this state, he still watched Australian soaps on TV and even managed a joke not long before he died. It was a genuine positive joke too.

He died peacefully on Christmas Eve. Later I cried, but more with exhaustion than grief or shock. Later his headmaster and teachers came round. They were very helpful.

Sean’s school group and my husband arranged the funeral. I preferred to stand back. Everything was done beautifully.

I was all right at first after losing Sean, but after a while my concentration and memory began to go. I lost a cheque book (later found it) got hit by a bus and put stamps in the washing machine. This is not like me.

It is nearly four months. There is a void. I think reaction is setting in but comes and goes. A girl who was in his group has sent as Easter card. I am loosely in touch with her and the group leader (aged thirty four). Both are still very shocked. Diane says she just cannot sing with anyone else drumming because it is not Sean. She is intending to arrange a charity concert for the hospital because of Sean. She may have me in it – I can sing folk. She also visits Sean’s grave and talks to him – it is easy reach for her. This may sound awful, but I have not visited Sean’s grave yet. It is an awkward journey for me, but I do pray for him. My spiritual beliefs help. Hannah and Clare continue to be supportive, and I need them. I have waves of sadness. A friend on the ward lost her daughter a few weeks later.

Ever since Sean died, I have been putting on a brave face. I am affected. I do as little work as possible around the house. My other children accept my explanation about Sean going. The school is very good to Angus who appears to cope well. I have been getting real abdominal pains but I think they are stress-related. I cannot read a novel or follow a plot on TV but I can read a textbook and follow documentaries. I have tried to distance myself with a part-time course. The course has helped the bereavement, but the bereavement has not helped the course. The tutors have been very understanding, so I think I am beginning to succeed in the course (after two failed assessments, I passed the third).

Friends are good. Some understand more than others. My husband appears to be coping. He probably off-loads to his school nurse as well as on me in round-about ways.

This has added a strain to our relationship. Really, both I and my husband need help separately as well as together. I think we should part. What do I mean by “help?” I do not really know, and I do not think anyone else does either. I suppose the answer is understanding.

I have not had bereavement counselling yet, but I probably will. I am more often than not tired. I am not the same person as I was. I do not mean that negatively. A good friend of mine, a mother of three, came round yesterday and we casually started talking about God and death. I pointed out I hoped my spiritual beliefs are true (and not just beliefs) and that I was not frightened of death. She said “spiritual beliefs” are true but she would be frightened of death. (I am middle aged and have enthusiasm to live). I said I saw things differently to her because I had lost a child. I do feel part of me has died, but this is probably shock. I am trying to resume interests. I am going to sing for at least two charities, solo. There is an awful lot to sing, so I am very excited. I have been asked to help distance learning (voluntarily) and that is very good for me.

Sean’s illness and going have ‘burnt me out’ and I am not up to visiting my handicapped brother who now has no visitors. It is a shame, but I have written friendly letters and will visit when I can.

I socialise at a local cancer group. One day I would like to help bereaved people. There are many, many people in my position, probably worse.

Sean’s needs and welfare were more important than my loss. He grew from a child to a man, then I lost him. My friend who lost her daughter, said her other one said “She and Sean would be chattering away happily together and with others where they are now, and looking at us”. I believe this too. Sean and young friends used not to ‘believe in organised religion’ as they put it, but confronted with mortality, spirituality became important and took organised religion seriously. He was a beautiful person. Everyone loved him. I have lost a good friend too. It was a pleasure to care for him.

I had told my other children and their (and Sean’s) friends that they should not be afraid of death (or life) or they would be insulting God who loves and cares for us all and all things.

Easter 2000