ANOTHER JOURNEY - DAWN SHOTTON FROM THE UK WRITES ABOUT THE JOURNEY UNDERTAKEN BY HER HUSBAND JOE SHOTTON, WHO WAS DIAGNOSED WITH A GBM IN MARCH 2000 AND PASSED AWAY ON 9 MAY 2002.

Dear Denis,

I feel as if I know you through your website, I have visited it so often during the last 2 years for help and advice.

My husband, Joe Shotton, was 43 when he was diagnosed with a right frontal lobe GBM grade 4 in March 2000, after suffering headaches for about 8 weeks. His tumour was successfully removed on 31/3/00, but we were under no illusions when we were told the severity of the tumour he had. He was told to reorganise his priorities, have holidays and live his life, as he would not grow to be an old man. You will know the feeling of being told this only too well. We were devastated and felt like hiding away those first few weeks.

Joe worked away from home before he became ill, but he decided he didn't want to go back to work and felt he wanted to spend his time at home with our daughter Emily who was only 3 at the time. He started radiotherapy treatment in June 2000 and this continued every weekday for 6 weeks. He coped with this really well and only suffered from occasional tiredness. The worst thing for Joe was the side effects of Dexamethasone, eg; very round face, pockets of gristle at the back of his neck and behind his knees, also weight gain and lack of muscle on his legs and arms.

After this was over, we went on holiday to Florida so that we could take Emily to Disneyworld, I panicked about taking him away on holiday, but Joe was so determined to go, he always loved his holidays and with hindsight I'm glad we went as I now have some lovely memories of that time.

Joe continued to be very well in all respects right up until Sept 2001, when he just "did'nt feel right". He said he did'nt feel the way he had a few weeks before. They arranged a CT and sure enough the tumour was back, a 4cm mass. Joe's oncologist arranged to start him on chemotherapy the following week. He started taking Vincristine, Procarbazine and Lomustine on 4/10/01, this was repeated every 6 weeks. He took 3 lots of this without too much trouble, but when he went for his 4th session, he was unable to have it because his platelet level was only 74, instead of 100. We went back the following week hoping to have the 4th dose, but again the platelets were too low, this time 99, but still under the 100 limit. The following week it had recovered enough for him to have the 4th dose, this was given at the end of February 2002.

During the Jan and Feb of 2002, Joe's headaches were increasing to the point where he would have at least one every day, which he treated with co-codamol and his regular Dexamethasone. Towards mid March 2002, his headaches were beginning to respond less to his painkillers, he would want to take more before the time limit was up. One day he woke and his left hand felt numb, I told him he was slurring his words slightly, as if he'd had a few pints. I went to work and he phoned me an hour later to say he felt much better and he was'nt slurring. However, later on in the afternoon he rang me again, to ask if I could pick him up from the hospital where he had been visiting his dad, with Emily. When I got there I was shocked at how grey he looked, he said his head was agony. I took him home and he went to bed after taking yet more painkillers. After an hour I checked on him, he had got up to be sick and his headache had'nt improved, the pain was travelling down his neck. I phoned the hospital to ask for advice, I knew that his symptoms were all signs of increased pressure. The hospital told me to increase his Dex and ring back in 1 hour if he had'nt improved. Joe took the Dex, but threw up about 5mins later. I phoned the hospital back, they told me to take him in.

By the time I got him there, after a 40 minute journey, he could hardly walk, but was determined not to get into a wheelchair. The staff were waiting on the ward for him and quickly got him into bed. He was totally confused and hardly spoke, except to beg them to take the pain away. I was so scared, I really thought he was going to die.

The next day he was no better, he was confused and was adamant the man in the opposite bed was his dad. The doctors received the results of an MRI scan Joe had had 2 weeks before, (this had been to see if the tumour was responding to the PCV chemo and to see if he could start Temozolomide if it was growing). The scan showed that the tumour had grown and had produced a fluid filled cyst, which was responsible for the pain Joe was in. The doctor said they were waiting for someone from Neurology to have a look at the scan, but she thought that they would probably do another crainiotomy to drain the cyst and relieve the pressure. By that evening Joe seemed a bit brighter, we saw a Neurosurgeon who confirmed they would perform another crainiotomy. They moved Joe to Neurology that night.

The next day they sent for Joe for surgery but the sister on the ward had let him eat, as he wasnt on any surgery lists. The surgeon later came to see Joe and said he had been really angry with the sister for this mistake. He told Joe he would definitely do the op the next day.

The following day Joe had his second crainiotomy, the op only lasted about 2 hours and he was on HDU until the following afternoon. He was talking and able to do all the tests they asked him, without any problems. The Neurosurgeon said he had drained the cyst and taken away some of the tumour, but because of the position of it he could'nt remove too much because of some important blood vessles.

When he was moved onto the ward, he felt very well considering what he had been through, he felt better than he had after the first op and was very eager to get home. After 2 days on 2nd April 2002, they let him go home. At first he said the most strenuous thing he wanted to to that summer was to cut the lawn, but after 2 weeks he decided to paint the outside of the house. He was such a determined and stubborn person, I knew from experience that there was no way I could talk him out of doing it. So off he went to buy paint. He managed to paint the back of the house, up ladders, without a thought for his illness. He continued to have headaches all through April and they became much more frequent until they were almost constant.

On Thursday April 27th 2002, he could'nt stand the light, he kept his eyes shut and his headache was unbearable and he could hardly stay awake, he was terrified the same thing was happening again and that the cyst had filled back up. I took him into hospital, they put Joe in a room on his own, so that he did'nt have to have any lights on. They increased his Dex, he had been on 4mg per day, they put him onto 12mg per day, they also gave him Oromorph and Co-Proximol for the pain. The following day they did a CT scan, this showed that the cyst had'nt come back and there did not appear to be any difference in the remaining tumour. Joe was elated, but I was confused, I wanted to know why he was having all of these symptoms and having to take morphine and increased Dex if the tumour was'nt growing. I felt no one was giving me any answers. Over the weekend Joe seemed quite well, he was still on regular Oromorphe and 12mg Dex, plus Co-proximol, but the light did'nt bother him so much. However, his platelet level was only 25 and he was covered in dreadful bruises. His legs seemed to have become even thinner.

On Monday 1st May he saw his oncologist, who explained that although the CT scan did'nt show any changes, he felt the tumour was infiltrating other areas of the brain, including the part that controlls sleep patterns. He said that this would not be visible on a scan. Joe felt he was finished after hearing this. He had always had the belief, that the tumour only grew back in the original place. Even though we were told at the start that this would happen, I think he blanked it out and that kept him going. The oncologist told him that if his platelets did not recover, he could not have Temozolomide.

Over the next few days his blood platelet level got no higher than 41, he became paranoid, extremely angry with me and the nurses and refused his medicines. He stopped eating and drank very little. He was adamant he was going home and said he was going to discharge himself. He said the nurses were trying to kill him and said I was just as bad as they were, he said I was enjoying seeing him like this. This was'nt Joe, I felt the tumour was causing him to react in this way. I knew in my heart that he was dying, but no one would tell me. One of the nurses said she had nursed a lot of patients with GBM and said that once they started to go downhill, they went down very quickly. She tentatively said that Joe did'nt seem to be responding and every day brought a different symptom. I think she was telling me what I needed to know. That was on the Sunday 5th May and by this time Joes neck and back were agony, I took him outside in a wheelchair but even the slightest bump was causing him great pain. The next day he was a bit calmer but lay very quietly when he had visitors. He kept telling me he would take his last breath in this hospital. At one point he needed the toilet but would not let me get help, it took him about 20 minutes to get out of bed, but with sheer determination he hauled himself up and went to the toilet.

On the Tuesday 7th May they did an MRI scan. When I got there the Dr said he could'nt discuss the results, but he did say that the Palliative Care Consultant was coming to see us that morning. I followed the Dr out of Joes room and he again said he could'nt discuss the results, but that I should prepare myself. I knew what he meant. The fact that the Palliative Care Consultant, who covered several different hospitals in the area, was coming to see us was confirmation enough. Joe was very calm and the anger of the previous few days had disapeared. He took his medication and ate a bacon sandwich that morning. He was still very quiet, but when the Palliative Consultant asked if he knew what was happening to him, he nodded and said that he did, but he did'nt want to talk about it. As had been the case for about a week he kept his eyes shut and said very little. I read him the sport pages of the newspaper and kept him company.

The next day when I went in he had changed again. I told him how much I loved him, how special he was, how thankful I was for being part of his life, he tried to talk back, but I could'nt understand what he was saying. He kept touching his head, I asked him if his head was sore, he nodded, I asked if he needed more painkillers, he nodded again. The nurse gave him more, this sent him into a deep sleep. I phoned my mother and asked her to get Emily out of school and bring her to hospital. When she got there I took Emily into Joes room, she got a shock when she saw him, but I put her on my knee . She asked when Daddy was coming home and I told her that Daddy was dying, the hardest thing I've ever had to say, but something that I had thought about often over the last 2 years, now I had to say it for real. She cried her little heart out, but I told her that she had to tell Daddy how much she loved him because he could'nt speak to her, but he could hear her. After that she came in and out of his room all that day as if everything was fine. But at night time when it was time for her to go home, I told her to say goodbye to Daddy and tell him how much she loved him and to give him one last kiss. I could hear her crying all the way down the corridor as my parents took her away.

Joe's brother John, his wife Mandy and I stayed at the hospital that night. Joe responded a bit that night, by squeezing our hands occasionally. We kept telling him how much we loved him. I slept in a chair by his bed and listened to his laboured breathing.

The next morning, Thursday 9th May 2002, the nurses changed Joes position, so he could lie on his back. Once they did this he started breathing differently and made the most terrible noise with every breath. The nurse assured us he was in no pain, she explained it was a noise everyone made in the final stages, but unfortunately the younger and stronger the person, the worse the noise was. She said Joe did'nt know he was doing it and it was more distressing for us. She also said it would'nt be long now. I did'nt leave his side for a moment, I cried and kept telling him how much I loved him, how glad I was that we had had such a wonderful life together, that I would bring Emily up in the way we had wanted and that I only wished that he had never got ill. John and I told him it was alright for him to go, not to stay for us, that we would be fine. He needed to go to the next place.

Joe died at 11.40 that morning.

The next few days went by in a blur, but Joe still helped through this, as a few months before he died, we discussed what he wanted for his funeral, as he wanted to make it as easy as possible for me. He picked the hymns we had at our wedding and the passage he wanted read out. So in arranging his funeral, I felt as if I was carrying out his wishes and that gave me great comfort. Emily also decided she wanted to go to her Daddys funeral, I asked advice and our GP, a child bereavement officer and our Vicar, all felt it was right to let her attend. She even picked another hymn to be added to the service, "Morning Has Broken" which she had learned at school.

Joes funeral was on 15th May, our Vicar had estimated that a lot of people would attend, but I was overwhelmed when we arrived at our village church in Warkworth, Northumberland and the vicar told me it was "standing room only". Apparently, there were approximately 400 people there. A great testiment to the person Joe was, how well he was loved, liked and respected. The service alone raised £848 for the Northern Centre for Cancer Treatment at Newcastle General Hospital. When a friend told the Vicar how lovely the service was, she said it was, but it had been very hard.

Afterwards, at Joes request, I held a reception at the Sun Hotel in our village, where we had had our wedding reception. A friend had said she had been driving through our village just after the service and was met by a sea of black suits coming up the main street, on the way to the reception. Even given the circumstances it was nice to see all of our friends, Joes colleagues, who had travelled from Scotland to attend and friends from Joes footballing days. Everyone had a story to tell and a hug to give. I had been dreading the reception, but once there, it was fine and was a wonderful occasion. If Emily remembers nothing of the rest of the day, hopefully she will remember a big party and being the centre of attention.

Emily and I are trying to get used to a "new kind of normal". Some days are ok and others I feel consumed with grief and can hardly stop crying. Emily is sometimes quick to tears and sometimes it is as if nothing has happened. Wherever he is I think Joe will be proud of the way we are coping.

If you want to put this on your webpage, so that I may help other people going through this nightmare, please do so. I hope I havent rambled on too much, but I've never written to anyone about this before and once I started I could'nt stop! Sorry!

With love and thanks for the information you have given me and so many others.

Dawn Shotton. E-mail: dawnjoe@shotton95.freeserve.co.uk

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