Narratives & Stories

Tim's Story

Tim was diagnosed with testicular cancer while in his second year away at university.

Our Story – Emotional and Physical

On December 18th 1995 our son Timothy (then aged 21) was diagnosed with Testicular Cancer. (He was a school friend of George Easton’s and had been devastated when George was first diagnosed the previous Easter). Tim was in his final year at Reading University studying Pathobiology, and was researching into Prostate Cancer. This made him more knowledgeable than most about his diagnosis and treatment.

From September to December he had been having chest problems and was treated by the University Medical Centre for Pleurisy. No medical tests were done to confirm this diagnosis, it was only when Timothy finally collapsed at 02.00 hours coming home from a party that he was taken to casualty at the Royal Berkshire Hospital for a check up. It was at this point that chest x-rays were finally taken and Timothy was advised that his condition was serious and merited further tests. He was told he had cancer, by the doctor, when he had no family around him to discuss the problem and wandered around the streets of Reading before going back to the hospital to be admitted for yet more tests.

He had rung us the previous day to advise us as to which train he would be getting home for Christmas. The next phone call we got was at 06.00 hours on the 18th to say he was in hospital for tests and would not be on the train after all. We were not aware of the problems he was having and did not know which hospital he was in. There was no message on the answer phone when I got home from work so I started making enquiries from his flat mates and managed to trace him to the Royal Berkshire. His flat mates were very careful as to what they said over the telephone, and the hospital would only confirm which ward he was on. The sister said he was down for further tests and would ring when he was back on the ward. Timothy had left instructions that he would break the news, and he would decide what we were to know, a policy he followed throughout his illness.

The diagnosis was confirmed that afternoon and again Timothy was on his own. He had the problem of ringing us and explaining to us what was going on, something he found extremely difficult, and dealing with his own emotions in a sterile atmosphere. We drove to Reading overnight (abandoning our sons Daniel 18, and Edward 16 at home). We arrived in Reading for the doctors’ rounds at 08.00 hours Treatment was to start immediately, they could not afford the time to remove the tumours before giving chemotherapy. We then had to explain that Timothy was a student and could not go back to that type of accommodation after chemotherapy. The doctor was very sympathetic and advised us that she would consider all the options whilst still testing and diagnosing the full extent of Timothy’s cancer.

Late in the afternoon the doctor advised us that Christies had agreed to treat Timothy but as we had driven overnight we should rest and take him up the next day. Meanwhile they would scan Timothy overnight and we could take the films up with us. We left Reading with all the films, and Timothy, at 08.00 hours on the 19th, due to arrive at Christies at 14.00 hours to see the specialist.

Unfortunately due to a sequence of events beyond our control, and the doctors in Reading, we were not expected at Christies. Also the consultant at Christies had been double-booked with patients as it was the week before Christmas. However, after a heated discussion and the threat that we would go straight back to Reading we were allowed to stay. When the consultant saw the scan films he advised us that the cancer had spread through Timothy’s lungs and onto his liver. He was to be admitted immediately and chemotherapy would start in the morning. (The consultant later visited us on the ward and apologised for our welcome, explained the situation, and left us far more amicably than we had met. The treatment and advice subsequently given to us and Timothy has been second to none). If all went well he would end his first session of chemotherapy on Christmas Day and would be allowed home that day.

Timothy had been due to fly to India on Boxing Day for a holiday as his girlfriend, now fiancée, was out there doing voluntary service. If he had gone out to India the doctor said he would not have returned. He was initially given a 20% survival rate by Christies, Timothy later admitted that the survival rate had doubled since leaving Reading !! This is when he advised us that the doctors were under orders to tell him everything first and he would decide what we were to be told. It was very hard to watch our child take all this on himself. We wanted to wrap him up in cotton wool, but he needed space to fight it in his own way.

Before starting the chemotherapy Christies arranged for him to go to a fertility clinic at St. Mary’s Hospital in Manchester. Being young and at the time unattached he did not want to waste the time but just get on with the treatment. With persuasion from us and his consultant he did go to St Mary’s first and hopefully he will accept it was the right decision, even though it was made by us!! We met the doctor handling Timothy’s day to day treatment during the first week to discuss what was going to happen. Though we were all in shock some of the information did sink in. We were advised that 80% of testicular cancers could be cured but that Timothy had been in the 20% bracket to start with, but now had a 40% chance, still not a good Christmas present. He was to have five days of chemotherapy at Christies and come home for three weeks before starting another cycle.

It was not easy for him to come home when his friends were in Reading and school friends, apart from George, dispersed around the country. We had to clear out all his belongings from his digs and adjust to having him home again. His friends were marvellous keeping him in touch with events, writing, telephoning and generally keeping his spirits up.

After three months of chemotherapy he went in for a stem cell transplant. This involved three weeks in isolation and six times normal strength dose of chemotherapy to destroy his white blood cells. He was very ill and watching him suffer alone and so far away was heart breaking. Finally he gave in and allowed his mother to stay on a camp bed in his room, but how she wishes he had her stay sooner. We had to give him his freedom to handle it all his own way, but it was not easy to take that step back.

As well as travelling up and down the M6 to Manchester to deal with the physical problems, we had to sort out the emotional side. We are lucky in Lancaster to have CancerCare at Slyndales, but they had little to offer a rugby playing 21 year old – jewellery making and art classes did not appeal to Timothy. However he formed a very close bond with one of the male counsellors with whom he could unburden the problems he did not want to worry us with.

At Easter we were told that all was well and abandoned for a month. We all felt like deflated balloons, since Christmas we had been on a treadmill of treatment, our lives completely taken over by cancer and now – nothing. It was very scary.

In the summer Timothy returned to Reading, picking up his studies exactly twelve months after diagnosis. That was when the roof fell in again – reactive depression had set in with a vengeance. All his friends had graduated and he could not see the point in studying if he was going to die. The University Medical Centre offered him Prozac, but no one to talk to for three months. Tim’s tutor pulled strings and got him a university counsellor. (His own daughter had suffered lymphoma while a medical student). The counsellor was so devastated by what Tim told her that she offered to take him home and look after him! (She had previously only dealt with homesick first years). The local cancer care counsellor only wanted to discuss her cancer!! We spent a lot of time on the telephone and ended up buying Timothy a car so he could escape back home to see his counsellor up here whenever he felt the need. His mother wanted to stay with him in Reading to help him through and get him through his finals, but he would not have it and we had to respect his decision.

He lived at home for another year studying for his PGCE. He is now in his second year of teaching and getting married next year. Four years on he is generally well, but we had another scare this Christmas. The excessive chemotherapy has affected the blood vessels in his hips and he is now, at 25, looking at a double hip replacement. He has found this very hard to take as he can no longer play his beloved rugby. However as his consultant said without the chemotherapy he would not be alive to face this new problem.

Even now we feel the experience of cancer is with us, not far below the surface. Without the support and prayers of friends we could not have got through it. George and Timothy helped each other through, although sadly for George he lost the battle. Talking about our experiences to anyone who will listen is our way of easing the pain. There seems to be little support for the young sufferers.

Finances

Whilst trying to deal with the physical and emotional sides of the illness we also had to fight the bureaucracy of Lancashire County Council and the Government.

I rang the LCC Education Department as soon as possible after the New Year to advise them of the situation. They said that as Tim had dropped out the whole of his grant would have to be reassessed. We assumed that as he had completed a term that the reassessment would be from January – this proved to be wrong. The grant was looked into for the whole year and both Tim and his brother received demands to repay the grant they had spent in the Christmas term. The reassessment showed that due to the fact Tim had dropped out, they could not receive any grant for that academic year. We lodged an appeal against the decision as the money had been spent in good faith and we did not see why we should be penalised because of Tim’s illness. This did not stop Lancashire sending out final summonses and threats of court action whilst the appeal was being considered.

We also tried to enlist the help of our MP over the problem, he was of some help in pushing our cause and we did win our appeal after his intervention. However when further problems developed our MP would only quote Government documents at us.

As Timothy had no means of support or income we decided to apply for incapacity benefit. This was refused on the grounds that he had not paid enough NI contributions. We then applied for income support but were refused on the grounds that students could not claim income support because they were getting a grant. We then went back to LCC and discussed the situation with them, however as far as they are concerned Tim was no longer a student and could not therefore receive a grant.

We wrote to our MP again on the subject and he sent us documentation showing that the local council can continue to pay grants under exceptional circumstances such as severe illness. We went back to LCC who advised us that they only administer grants on behalf of the government and they had been advised that in our case Tim was no longer a student and a discretionary grant could not be paid.

We then went back to the DSS and decided to appeal against their decision to refuse to pay income support. Armed with all the information we could gather, and a letter kindly produced by Reading University saying Tim had abandoned his course permanently, we won our appeal. (The university did add later that the letter did not preclude Tim from finishing his course if he ever wanted to return. Part of the argument from the DSS was that you had to abandon your course permanently with no intention of returning). Tim then received income support for the rest of the period of his illness.

Whilst we could have afforded to support Tim during his illness he was feeling depressed that his illness was costing us money, he was having to ask for every penny he wanted to spend and had no independent means. Once he was getting income support he felt he was in charge of his finances at last. The other concern was that without the income support certificate he had to pay for all his prescriptions and all his travel costs to and from hospital – not a small sum of money over six months.

Whilst we had the energy and means to fight all the way, from copy correspondence received other people were have the same problems as us. We do not know if they succeeded or not, but there must be a lot of people who have failed to get the financial support they require.

Jeremy & Lesley