Cancer In Young Adults ... Through Parents’ Eyes

Narratives & Stories

Paul's Story

Paul’s fight against Hodkin’s disease from the age of 21 to 26 is told through extracts from the diary of his mother kept at the time of his illness.

Sunday 16th December 1990

I’ve decided to put pen to paper to help release my feelings. I usually do this when writing in Scotland and showing my emotions with mom and dad through my letters.

This time, it’s different. Paul is not well. He returned home, on November 15th from his ‘round the world’ visit to Canada and Mexico. For a week he appeared lethargic and we put this down to jet lag. Mom noticed his swollen face and I pretended not to notice.

However, he told us he had a lump in his neck and also that he was itching. A visit to the doctor offered the suggestion he had picked up some mite which was causing the itching but the lump was causing more concern. He sent a letter to the hospital marked urgent which provided Paul with an appointment last Thursday. Between the first visit to the doctors and then Paul picked up the flu bug which was around – a dreadful cough and sickness. He told the doctor about his face swelling and the doctor suggested this was linked with his lump. He prescribed antibiotics to get rid of the cough but these failed.

I began to feel concerned. I came home at lunch-time just to be with Paul. I felt I needed to be near. Last Thursday Paul went to the hospital with Mike. I came home early but no-one was here. They arrived with sombre faces and I knew there were problems. Mike had to go to a meeting and as the evening progressed I learned the news.

The lump was a tumour … he had to have a body scan – it could be TB. His x-ray revealed many more lumps – the lymph nodes were all swollen. The devastation at hearing the news you never wish to hear is unbearable. How do you keep cheerful? Do you ask more questions? Who do you tell? Where do you find strength? Where do you go to break down? Most of all – how do you keep Paul going?

My questions were all answered by Paul himself. What strength and courage. What wonderful heart! He’s so brave. He says let’s find out what it is and get rid of it.

Margie has been a tower of strength. I called on Thursday when I needed a friend. She was so strong. She told me of a friend who had Hodgkinson’s Disease – all similar symptoms. Let’s hope its not, but if so – it can be cured.

Today is Sunday. Tomorrow Paul has to visit the hospital for a biopsy – then we know. He had a scan Friday afternoon and drank a litre of ‘poison’ following some orange sludge!

This test combined with blood tests taken on Thursday and tomorrow’s test should give us the details. Whatever – we will fight it. He’s so strong and has such a friendly nature everyone will help.

I’ve decided to write to keep my feelings in control How does any mom feel knowing her son may have a terminal illness? These last few days have taught me so much. I appreciate all that others have felt before me … I’ve always sympathised but never understood.

My thoughts of the last few days would horrify many. I’ve thought of death, of God – Who I reject totally and even more so, of the meaning and purpose of life and of my family – I must keep Jacqui and Mike strong. Do I give up work or do I need my money to provide all we need? How do I keep everyone off Paul’s back? His friends are great. Chris, Adam, Rob and Nigel. How much do they know? How much will they help?

Tomorrow – we will know more. If it’s good we will celebrate. If not we fight on – I’ve made up my mind we’re going to Iceland – to celebrate Paul’s life – hopefully one which will go on for many years.

My eyes are full again and I find I am still not totally saying what I want. Please be OK. Please. I love you Paul.


Its about 9.00 p.m. at the end (or nearly) of another day filled with hopes, fears, determination and frustration. Will write when I come up to bed as I don’t want to leave Paul alone.

About 11.00 p.m. – The day began at 5.30 when I could not lie in bed any longer. Couldn’t get the future or what it held out of my head. Woke Paul at 6.45 and arrived at the hospital about 7.20 a.m. Fiasco. they forgot about Paul sitting outside the ward – a mix-up between staff.

He went to the theatre dressed in nightie and mountain boots. What a picture. Until then I had managed to keep in reasonable control of my emotions but once alone I cracked. I went to mom and dad’s and cried. Through tears later I was able to get my act together and rang the hospital at 11.45 – still in theatre. At 12.15 he was out and sipping coffee. I returned to find my amazing son looking good and recounting tales of the theatre under local anaesthetic removed one lump, grey and the size of a chestnut. I was elated to find him so well. Left the hospital, returned later to find him sinking a little but still very positive about coming home. After an encounter with the house doctor, a phone call to the specialist, Paul was allowed to come home, pending a phone calls in two days with the results of the biopsy. Scan proved good and bad news – still bad news in the chest, good – no problems lower down.

He’s home and suffering but kept occupied by endless visitors and phone calls. My thoughts from now are positive – we will see him through this together. Iceland here we come!

Friday 21st December 12.00 a.m.

It’s taken until today for me to write again. I couldn’t express my thoughts or my every emotion. Today I have realised its the winter solstice and as every good Celt knows we celebrate Yuletide and the brighter days ahead of us.

Picking up where I left off – the facts were that Paul had to wait for a phone call from the specialist to hear the results of the bodyscan and biopsy. As I said news of the scan were mixed. The biopsy was alarming but could have been one million times worse. The call came at 4.00 on Wednesday afternoon. He has Hodgkin’s Disease. The lump is a tumour of the most benign kind but is infecting the rest of his lymphatic system. We have to visit the Cobalt Unit to see the consultant at 11.00 Thursday morning. I wept and loved him and told him everything Margaret had told me about this disease. It can be cured. And it will be. The family are great. Dave had called to spend an hour with Paul on Wednesday afternoon and Helen and Ian and Stephanie have all called in. On Wednesday evening Paul decided he was going to the pub to join Mike and Dave and as I watched him walk out the door, tall, straight, with his head held high I knew he would be fine. Such strength. On Thursday, only yesterday but so much has happened, we went to visit the Cobalt Unit. I know I was apprehensive and Paul even said he didn’t like the sound of it. Inside we encountered pleasant, placid, tea making voluntary workers and a decorated waiting room. Everyone who came in for treatment seemed to have a deliberate manner about them, some lady relaxed with her cup of tea and her head held high. What these wonderful people are coping with is something you cannot know unless you experience it by my goodness they do cope. Paul finally saw the consultant at about 12.00.

Friday 9.10 p.m.

I had to break off as Paul came down. I don’t think he would approve of my writings. Come to think of it – what’s it all about? I suppose I needed to talk at first and then I couldn’t and now I must be overcoming the initial shock to even question it! I have decided to continue because one day it may help us or others to overcome similar problems.

I still return to the events of the week. I waited outside while Paul heard the news. Two nurses asked me if I wanted to join him but Paul wanted to face it on his own. I suppose I would have said silly things but I wished at the time I had been with him. I know now that once again his courage was far greater than anything I could ever come near.

He came out and told me simply and clearly that the cancer was also in his stomach. the treatment would be chemotherapy – drugs and injections. He could possibly be infertile – this seemed to have devastated him – his hair probably wouldn’t drop out and he began his treatment today. I asked about side effects and the nurse explained that it varied with everyone, probably sickness, diarrhoea (can’t spell it) nausea and tiredness. My thoughts returned to Mike’s dear mom and the dreadful sickness and nausea she experienced. Paul seemed very shocked but positive and we plodded over to the Path Lab for a blood test. This was over quickly and we were sent to the Ward where the chemotherapy was to begin. We went downstairs to a warm, comfortable waiting room, which had been made as homely as possible. Here we met a lady, her husband and baby. She was obviously very distressed and I began to realise that this dreadful disease has no respect and can strike anyone. Once again we sat and waited. I noticed Paul seemed shaky but still OK. The lovely Indian nurse came and chatted and gave Paul a few more details about what to expect. She said continually that if we wanted to know anything or if we just wanted support we only had to ask. Paul went off with a lady doctor and I felt my lip quiver and tears coming again. Boy, have I had this feeling a few times this week. I seem to cope when I’m with Paul but those few moments after he goes out or I leave our house – I seem to reflect and become tearful. He returned from his treatment sporting yet another plaster on his arm. He explained he had had an injection into a vein of some strange liquid which the doctor declined to tell him its name. Said it came from a plant like periwinkle or something! We left the hospital with an appointment to return next Thursday and tablets (four types) to be taken for a fortnight. I know I was shocked by the day’s events and Paul was looking paler and paler. We returned home to try out the tablets. At last Paul gave me a few instructions for the first time he expressed a few feelings. He insisted that he should continue his life as normal as possible and he didn’t want everyone to know all about him in case they treated him differently. I knew this would be difficult and tried to explain that everyone was asking because they cared so much. However, I decided to respect his views and have requested that folks ring Marg and ask after Paul and I’d told school I’ll keep in touch but please don’t call. We were bother very mixed up at this moment and I decided to try to head off my dear dad who I know would be calling to see how we’d got on. Too late. He began to ask questions and Paul bit his head off. He stormed up the road, swore at a driver, went in the garage and slammed the gate. I couldn’t believe it when he said “and now I’ve upset your son – he said he didn’t want reminding”. Poor Paul and poor dad. I explained what had happened at the hospital and dad just sat silently. I explained Paul was cross with the world and trying to come to terms with his illness. Mom was lovely and understanding – very different from the night before when I upset her I guess everyone’s upset and mixed up. What right have we – there’s nothing up with us. Paul’s the one who counts.

Paul dozed a little as the afternoon went on and Mike came home to be with him. I knew they’d talk and so I went off Christmas shopping. I returned to find a very pale but bright son determined to be OK. Paul and Roadie came to visit an invalid and surprise to us all he said “where are we going? I’m going with you”. Off they went. I was dumbfounded, very worried and very proud. I went to fetch Jacqui from Merry Hill and recounted the days events to her. She’s lovely – she listens to me when I go rabbitting on and on. I was very tired but waited for Paul’s return. He came home about 11.00 looking even paler and tired. He set off for bed leaving Mike and I for our first real chat. Mike is brilliant. He too is determined that life continues as normal. His chat to Paul was of benefit to everyone – I think we must keep going as normal – and if being as emotional as I am is being normal. Then I’m OK.

I realise that I am being totally selfish – all I am continually saying is how I feel, what I think, etc. I promise I’m not – if I could take away Paul’s illness and have it myself I would. Why should someone so young, so happy, so fit be struck with illness? Life is cruel. We’ve always said bad luck strikes Paul and he has to fight for everything – well once again its hit him with a vengeance.

Today is Friday and Paul got up about 12.30. He looks better today – more colour and obviously better in spirit. he said he couldn’t get to sleep and so slept in in the morning.

Think I’ll finish now in case he comes home. Everything’s going to be fine.

Saturday 22nd December 10 p.m.

Well once again my brave son has ventured out to get on with life. He went out last night too. Chris and co. are taking care of him. He has some damn good mates.

We are watching and waiting apprehensively for the side effects of the drugs. Thursday provided a very pale, tired face an appetite but loss of desire to drink. Change of taste. Yesterday a sore and dry throat with a tickly cough. This maybe part of his previous cough or something new. However, Paul’s colour has begun to return but his face seems less swollen. Today Paul’s mouth is sore, he says his feet feel sore. He feels sick but isn’t and is managing to eat small amounts to take his tablets with. This afternoon seemed to provide some difficult moments but he would not complain and determined to keep himself busy. I’ve had most of my Christmas presents wrapped!!

Strange feelings today. A couple of times I’ve felt elated as I think of the future and what we can do or where Paul could go. Seems strange. Only a few days the future was the one thing I would not allow to enter my head. I know the future, especially the next few months will probably be very difficult – how can we keep Paul’s positive spirit working? – The boredom and frustration must be dealt with. I am also realising that tension can creep in and I must not allow my selfish reactions to take hold. Mom and dad will need support too. I must not be a burden. I have considered leaving work, resigning my post and many other alternatives but I now have one ambition – to save enough for Paul to go to Iceland. I need my money for that. I’m afraid school will have to suffer but as little as possible. I shall get organised.

Wonder what tomorrow will bring? As Mike says, it’s a waiting game. He’s wonderful – very calm and placid on the surface – no doubt full of turmoil beneath.

I have a wonderful family and I feel sorry for anyone who has to face such a problem alone.

Most of all, I want to say today is the first time I feel in control and this is just because I know I have the finest son ever.


Another day almost through. Paul has decided to stay home. He says his chest is hurting. He is complaining of difficulty biting – he says he feels his teeth will fall out. He is struggling a little but has continued to plod on with everything put before him. We fetched our annual Christmas tree this morning from Keepers Lodge. A week ago I thought this would be Paul’s last Christmas. I’m tearful again but able to write it down. I couldn’t a few days ago. I’m determined we shall be there next year and I know from the silence in the car as we returned we were all full of mixed emotions and thoughts.

Mike seems troubled today. It’s always difficult with Betty here and she seemed crazier than ever. How Paul kept his patience I do not know. I can see Mike planning things out almost determined to be too normal! We must support each other.

That’s all today. The next dew days will be full of activity – I dread January and the long months ahead. I hope that we can provide Paul with the support he needs. We have to.

Christmas Day 3.30 p.m.

Merry Christmas. It has been OK so far today. Paul has been great. Determined to join in the typical family routine and crazy traditions. He was very depressed yesterday, most especially when he came home from his night out. He obviously was feeling down because he couldn’t enjoy himself as much as usual and it seemed to distress him very much. However, today is good. We’ve had some lovely presents and I feel we are all appreciating each other’s company. Mike is relaxed at last. yesterday too seemed to see the pressures and stress getting at him. I thought he was going to crack up. Lovely Jacqui is being golden and showering affection and gentleness on us all. We are lucky to have such a great relationship. I know we all have something to fall back on when the going’s tough.

Paul’s mandolin is a great success. I hope it will provide amusement and occupy some of the endless hours ahead. I feel closer to my sister than ever before in my life. Why should trouble do this to us? I suppose we’re all too selfish worrying about the unimportant things in life. A week ago I was dreading today. Today I am enjoying it. Roll on next Christmas.

Thursday 27th December

One week since Paul’s first treatment. In some ways it has fled in others an eternity. I seem to be thinking about each minute and being aware of what Paul is doing, how he is feeling, looking and reacting. It’s almost as when he and Jacquie were tiny and as their mom I knew every move, mood and reaction. I feel very, very emotional today. Perhaps because I know things are it’s a sort of weird relief but still knowing your son is very ill is worrying and exhausting. I welcome the space when he’s not around but miss his desperately – just as when he was small. I hated leaving him with someone else. He and Mike have gone to the pub to play darts. Whoever can believe that he has been to the hospital today for his injection. What courage and spirit.

Last night we talked after returning home from George’s and amazing Boxing Day party with Betty even dafter than ever. Paul talked openly and assured me (and himself) that he was in control. He was determined to keep busy and occupy his time over the next few months. Spanish classes are first on the list, swimming is a possibility, weight training to keep him in trim, as well as a job if he can find one. We’ve agreed that I spend a little time off work on his hospital day and apart from that he says he can cope. He admits to lack of patience – he won’t suffer fools lightly. We must keep Betty at arm’s length! Adam has called again. He came yesterday. Rob spent Christmas Day afternoon playing Subuteo at our house. These two and Chris are great. Paul’s worried about telling the London crowd. He says he can’t write and he dreads telling them. I’ve offered but he says he’ll do it then the time comes.

As a mom I am beginning to appreciate even more those two very dear people up the road. I think I’ve taken them for granted over the last two weeks. When I’m down I go up there. When I’m happy, I go up there, when anything – I go. They accept me as I am. Without them and my dear family I’m nothing. There are so many people who are less fortunate than me – I wonder how they cope?

Friday 28th December

Paul has been wonderful. He’s taking his multitude of tablets and laughing. He’s spent an hour and a half singing and playing his guitar as loudly as possible. It sounded wonderful. Almost as though he was waving two fingers at the world and getting on with life. I hope he doesn’t come down with a bump. He’s gone off up to Chris’s to play more guitar and then out for a drink. I’m going to sleep. The first time I’ve done that before Paul was safely home. Things are good.

New Years Eve

Well the year has ended as it began – with illness. George was poorly and in hospital last January – I never thought he would live and he did. This time its different. Paul will get better and better and despite my initial doubts I know he’ll be OK. The last couple of days have been strange. He’s been in excellent spirits mentally but the medication is having strange effects. He’s complained about pins and needles in his fingers and today the red blotches struck with a vengeance and his face is very swollen. He complained of feeling his pulse racing in his head and then promptly lay down and went to sleep.

He’s gone out – to celebrate the coming of the New Year. He’s got guts. Wish I had half. I’m very mixed up as I know midnight will be difficult – guess I need to get my act together. Resolutions – I’ve hundreds.

January 2nd 1991

Well, we begin another year and my thoughts are of the future again. The immediate future. Paul’s finishing his tablets tomorrow and then we watch for a different type of reaction. Let’s hope he’s not too poorly. He’s been really brilliant. He arrived home about 3.00 a.m. on January 1st – we were all worrying but in my heart of hearts I knew he was OK – in fact no different to normal New Years. We all struggled through yesterday. Managed to go to the pub for a quiet drink with George. He is a dear friend. Paul played darts with Chris all night. His friend Nick called and they chatted for ages. I think Paul told him of his illness and hopefully this will help with the London crowd. Karen called today and Paul said Denis (Nick’s girl) had been in touch. I am overwhelmed by the loyal friends he has. People go on about this uncaring world but I know because of Paul’s own caring attitude to life his friends have responded. Even Derek rang this evening to let Paul know where he was going – just in case he wanted company. I think Jacqui finishes work on Saturday. Perfect timing to take over. Not so much that Paul needs looking after – just company – both serious and silly!! I reckon I’ve been both extremes. The medication is having strange effects again today – this and needles and numbness in toes and fingers and even a cold nose. He’s complained of backache and weariness – I reckon that’s the three hours of darts last night after little or no exercise for ages.

My dear Mike is plodding on. He was very emotional on New Year’s Eve – more than I’ve known before. Yesterday and today he’s very quiet and wrapped up in his own world. I wish he’d express his feelings. Once again Margie has been wonderful. I don’t know what I’d do without her. We’re all smiling about Helen’s wedding – I hope she’ll be happy. Well – shan’t write much more – I don’t feel I need to. Let’s hope that there’s few problems ahead.

January 11th Midnight

A bad day. I hadn’t realised that I could feel so depressed after such elation. Paul is suffering. He’s finished his first two weeks tablets and now is suffering – either the come down off the drugs or the effects of the disease or more likely, a combination of both. He’s struggled today and still been determined to keep going. We went to the DHSS and sorted our sick pay, etc. At least he doesn’t have to sign on. We’ve both pretended how good this is and told everyone the good news. He’s pretending for me and me for him!! He’s gone out tonight despite feeling delicate. He feels bruised all over and I don’t know how to help. Wish I could wish next six months away.

Sunday 13th January 8.00 a.m.

I am writing again not because I need to but because I felt I should attempt to keep the record straight about emotions, frustrations, visitors and Paul.

Following on from where I left off, was a week of Paul seeming quite well physically (relatively) apart from numbness in his fingers and toes and the occasional big face after he had a drink. The Monday and Tuesday were bright and cheerful as Jacqui stayed to keep Paul company. They are really good friends. I must be most fortunate to have such loving children who actually really care for each other. On Monday one of the building agencies called to offer Paul the chance of an interview for a job, £15,000 car. Paul decided he’s had a go – and whilst everyone was saying “good ol Paul” etc, I was worried. I knew it meant long hard hours, lots of driving and Paul away from home. This was a job for a fit man and I hated admitting that Paul wasn’t. The interview was fixed for Thursday 10.00 a.m. This meant getting up at 6.30 and travelling on three trains to his destination. Thursday morning came and Paul said he couldn’t do it. The disappointment he felt having to actually admit he couldn’t cope was very distressing. Poor Paul. I admire him even more because of the courage it takes to admit out loud that he couldn’t cope. I wanted to stay with him but had to go to work. I couldn’t get him out of my head all morning and dashed off at 12.00 only to find a bright, cheerful young man playing and singing with his guitar. What resilience. How he can bounce back I’ll never know.

On Thursday evening, Paul’s friend from London arrived and has been with us ever since. They’ve managed to go out boozing and visit the pub to watch Wolves play. Last night Paul looked very much the worse for wear – he needs a good sleep and a couple of days without beer!! His face is puffy and blotchy and he looks exhausted. Standing at a football match takes some doing if you’re not well.

His friends are wonderful. He was with Chris on Wednesday, on Tuesday John and Heather came to see him, on Thursday Nick came, they went out together on Friday and on Saturday. Nigel and Neville came. They are great people. I don’t know how to ever thank them.

The frustrations came through the post. The DHSS sent a stupid letter asking why he’d claimed since November 30th and only informed them on 3.1.91. Said they’ll have to reconsider his claim. No cheque has arrived. The taxman has caught up with him. Disappointing but inevitable. I am annoyed for Paul’s sake but angry that we live in a society that is as inefficient as this that there is little communication between departments. I don’t know whether to go up and complain – write or leave it to Paul. I’ll ask him. Whatever would happen if he was living alone – trying to keep well, pay rent and they stop his money through their inadequacies. It makes my blood boil.

Well, Paul’s treatment recommences on Wednesday. We begin another cycle. Let’s hope that we see the same positive, wonderful outlook from Paul – he is the best in town!!

February 3rd

Well, here I go again. Its Sunday lunch-time and probably the first time I’ve been alone for ages. I’m mixed up about what’s happened and the right order but I’ll have a go.

Paul’s visit to the hospital was encouraging but exhausting. We waited in the radiotherapy unit to see the specialist after Paul gave his usual blood sample. The waiting room was full of pensioners. I began to feel depressed that so many of these people would not get better. Paul will. The doctor was pleased with Paul’s progress, so much so he doesn’t want to see him till March. We went for the usual injection in the ‘comfy’ room and as usual Paul’s veins did not want to know. We followed this with a visit to x-ray and awaited Paul’s turn. We sat in a corridor being redecorated and a hive of industry as old, closed wards were being opened for the possible wounded from the war. I became cross that if there was money for this to happen, then it should be available all the time. An old lady lay on a trolley crying and begging for water – so distressing. These visits are so depressing and exhausting. We returned home about 12.30 only for me to discover I had left my glasses at the hospital!!

I think Karen arrived the next evening and Paul took off with her for the evening. The next few days were busy and on Saturday Jacqui, Chris, Paul and Karen went over The Chase in the mini. Good to see Paul driving again.

The following Wednesday second round of treatment which was traumatic for Paul. His veins had decided ‘no way’. Hot water bottles and massage later they finally gave in. The nurses told me that he was a great guy – others would have cracked up by now instead of joking though. I’m so proud.

Jacqui’s company has been so good for Paul and she seems to know his every mood. I’m afraid I cracked up this week for no reason. I just went to work on Wednesday and cried and cried !! Don’t know what happened as everything seemed so good. Perhaps the strain of Betty, giving my first pint of blood, a visit to the Eye Infirmary and trying to do my job well, as well as admitting I’m very middle-aged got to me.

Everyone was great at work, mom and dad let me cry it out, Jacqui said I mustn’t let Paul see me like this, Marg was great but said I had to get a grip and Mike told me I needed to change my attitude!! This last one hurt but was true. It’s pretty difficult though I look in the mirror and see a mess. I’m not doing my job properly and I know it and I know others do too. One more week and its half term. I think I’ll get my hair cut and buy new clothes – sounds corny but perhaps it’ll help.

So you see – this piece of writing is once again very selfish – I need to get a grip. Paul can so I must. He’s gone off to York with Chris. He went on Friday and should be back tonight. No phone call as usual! Things must be OK.

Mike and I are finding it hard to know how much to ask Paul. He made it clear on Thursday that we are asking him about every move he makes. It must be infuriating to someone as independent as Paul but we need to know to keep ourselves sure he’s OK. I must learn to shut up!!

Perhaps I should have written before today. I feel better for putting pen to paper again. It helps to clarify what is important.

I can’t wait for Paul’s return, hope its not when George and Betty are here. He seems reasonably OK – sore and still suffering the big face but still determined that life goes on. He’s joined the Posada’s darts team! The Homestead have asked him to join them too. I think it’s wonderful!

Mike had a call yesterday from Graham. Dave had told him about Paul. Mike too has some very good friends. Only silly Ken has shown himself for what he is. How can he behave as he does to Mike at a time when true friends forget trivia – he’ll always be the same – so disappointing for Mike though.

Simon rang Paul last week and I’m so relieved. Paul thought such a lot of him and was wondering how to talk to him. I think Simon was feeling the same. Such a smile came around the door when Paul came back from the phone.

I’ll finish now. Thanks paper for taking my thoughts again I feel better!!

Saturday 9th February

Its half term and I know we have a very mixed week ahead of us.

Paul is OK but I keep waiting to see more signs of progress. I must not be impatient. I suppose he’s doing much more and therefore existing at a level of tiredness with which he can cope. He’s still remarkably brave. He spent a super weekend in York and then felt very tired. He’s been out most nights and spent a crazy hour playing in the snow with Roadie. Just like two little 10 year olds. I think he’s given his body a real battering.

His mates are still wonderful. Even as I write Adam is asleep in the living room! It’s about 9.00 a.m. Paul came home from the pub last night and said “Alec wants some help in the bar today”. He’s delighted. Hope everything’s OK. Does Alec know Paul is poorly and will if affect Paul’s sick pay? Neurotic mother mithering again!! Paul will sort it out and stop me from fussing I expect.

We visit the hospital on Wednesday again and I can see Paul tensing himself up for the visit!! We’re awaiting a call for a body scan too. Another trauma for Paul again.

Paul’s had a letter from Chris in Australia. I’m so relieved, he ran out of cash. He could be far away and very ill instead of here at home. Its taken a lot of courage but Paul can now talk (when he wants) about his illness and has managed to write to Chris about it. I wonder if he felt a sense of relief and strange perspective on life as I do when I’ve written.

That’s all for now. No serious problems just a lot of very patient people needing to see Paul getting better.

Tuesday 19th February

I don’t know how to write at the moment or if I want to put down on paper some of the negative thoughts which have gone through my head recently.

Last week was very mixed despite me knowing it would be, I found it very traumatic.

Paul coped well in the pub and earned himself a tenner. The next few days were good and Paul seemed quite OK if a little pale and with dark rings around his eyes. Wednesday was bad. We went to the hospital as usual and Paul gave his usual blood sample. Then to the ‘comfy’ room and half an hour sitting with a hot water bottle on his veins so the injection would not be too difficult. It was very deep and made a big hole in his hand. The bad news to my intelligent son was he had to have another x-ray not a scan. This he interpreted as meaning three was no improvement. From then on the gloom set in. We returned and all went for a lunch-time drink as it was half-term. I wish we hadn’t! Paul was not able to cope. He was red, blotchy and dizzy. We returned home and he said he felt poorly. He decided he wouldn’t drink this fortnight. The next two or three days the gloom became greater. He wouldn’t communicate and I could find no way to inspire him. He went out with Rob on Thursday and Friday afternoon but no good and then he went out on Saturday and became very morose. On Sunday he perked up and played darts but lost. He went out saying he would lose because he had lost his confidence. However he came in a little brighter. He has now developed the trembles in his hands and says he feels shaky inside. Tomorrow we have to go again for more – hope he copes. A ray of sunshine is Jaqui, her return has provided Paul with a young, very positive approach. He fetched her from the station and then went for a ride today. They are such good friends.

As I said, my thoughts too have been very negative not helped by hearing of four death in the last week. Mike’s aunt Olive died, Bert from Cornwall, old Jo Perry and Janet. Even watching Eastenders has been distressing as I keep watching Mark and his fluctuating moods.

Wish the next few months would fly away and Paul would get better.

Wednesday 20th February

Well today is good. Paul’s treatment was OK. The doctor reassured him the shakes he has been feeling is normal, the x-rays and their results go to doctor. So she could say nothing more. Jacqui is here and so refreshing. Her lovely outlook and her presence is inspiring Paul. He’s even played his guitar tonight and I’m smiling!!

Monday 25th February

Paul is fine. He has shown a complete change of mood and once again is being very positive, very intolerant of fools such as me and making every effort of enjoying the company of his sister, his friends and the darts teams. I don’t know how serious he is, but he’s been to the Poly Shop and come home with details about a Geography Degree – sounds really wonderful. Jacqui’s trying to set up a little business and Paul is encouraging her. He took her out to Ironbridge and even coaxed the mini up Long Myndd!! Afraid the crazy one is me. I am not coping. My job is tough at present and I know I’m not as efficient as I was. My heart is at home and school comes second or third or further down the line. Life is hard between Mike and myself. Mike is under the same pressure as me and I can see his way of remaining sane is to carry on whatever. He needs to stick to routine and this provides security. I have tried to support this. However, I want some love and attention too. Perhaps I am not giving enough but I haven’t any more strength. That’s all I can write now as I’m a bit mixed up at the moment.

2nd March – Saturday morning

Spring is here and hopefully bringing all the good things that are associated with it.

Paul has been great in spirit but suffering from bruising and soreness to his legs. He’s been very stiff and finds walking a discomfort. He never ever grumbles. Since completing his tablets last Tuesday he’s been able to have a drink, and join his mates. This weekend should be entertaining. He was out with Rob and Chris last night and I know they were still here in the early hours as I think I heard a mandolin playing!!

Sad news from Chris’s family is that his mom has to have a mastectomy on Monday. Poor Jacqui is finding it tough after being the bright spark amongst us all. She’s now in the middle of two families with the same problem. However, I know she’ll help Chris’s folks with her wonderful common sense.

My week has been pathetic to begin with. Following my last pitiful cry at the top of the page I got worse and shouted at Betty and Mike at the weekend. I felt so tense and could not cope or should I say did not want to cope with her. We have to a point where Sunday is no longer a day off. I know it puts more of a burden on Mike and his dad but just now I don’t want to know.

Well, that’s all for now. This saga is turning into a story of self pity. I will overcome it.

Wednesday 13th March 10.00 p.m. A difficult day

Since last putting pen to paper I have been a complete idiot – a selfish stupid confused woman – moving to someone who was so insecure it was unbelievable – to a very caring wife and mother (which I hope I always was) – to someone who had sorted out her priorities – to today where I know where these priorities really are.

I’ve had a rough time – confused over Mike’s attitude towards me in preference for George and Betty. It hurt – the enclosed letter will express my feelings adequately at the height of the crisis.

Paul, in the meantime was coping wonderfully although expressing concern over his neck. He would not contact the hospital preferring to wait until today. The darts teams have been a wonderful way for Paul to get involved with real life and offer his services. He has all the same emotions when playing as anyone else and manages to overcome his fears.

For the last two weeks Paul has enjoyed the company of his friends as well as Jacqui and Chris. Today provides with problems – Can’t write at the moment as I am confused and need to reflect before I write.

Tuesday April 2nd

It seems a very long time since I wrote but I think I’ve been very frightened. My heart is telling me Paul will be OK, my head is telling me the same but I am seeing a son who looks poorly. I know this is a very long job with many setbacks, but I wish he was OK. The last time I wrote I was devastated as was Paul because the specialist implied the treatment was failing. He’s since suffered the most dreadful fortnight of sickness (or feeling so and looking ill). His arm is hurting and swollen due to agonies with his veins.

Still he battles on. What strength I shall never measure up to. He never grumbles, even works at the pub and plays darts better than most.

I dread April 19th when Paul visits the specialist again. He’s even said “what next mom?” I told him of possible hospital stays but I don’t really know.

His wonderful friends are still here. Chris and Adam and Nick from London are brilliant I shall never be able to repay them.

Jacqui and Chris are marvellous and Jacqui’s little venture into a business is getting us all excited.

I just want to take Paul’s illness away and have it myself. What has he done to deserve this?

Tuesday 16th April

Hello again. I need to put my pen to paper once more – this time to say that everything will be OK. I feel at last that hope has outweighed the gloom and this time I’m not writing it just to make myself believe it. I know the mountain still has to be climbed but I know it can be.

Paul’s wonderful attitude and his determination to deal with this dreadful disease in his way will win through.

Last month was really rough. The doctor had said it was worse and stepped up the treatment. What hell for Paul but he coped. About ten days ago his hair began to come out with a vengeance and caused Paul obvious demoralisation. His arm was swollen and his hand hurt and we discovered he had a thrombosis in his veins. However, all this pales into insignificance when you hear that the consultant reckons the lumps are smaller. Last Wednesday we heard the good news. What else he said – I don’t know. Paul still deals with his illness himself. The treatment was as torturous as ever and Paul slept the afternoon again. Tomorrow he returns for dose 2. Let’s hope he’s OK.

The hair loss is disturbing but friends and locals are saying he’s OK and laughing about it.

The darts team continues to provide a good source of entertainment and friendship but most of all what would we do without Adam? He’s been so loyal and supportive in spite of his own problems. Simon is coming up from London tomorrow – I think he’ll have a shock. I hope he can cope. My wonderful family are the most precious things on this earth. Each one backing up the other. I feel at times that I’m the weak link. I know Mike sees me as a burden – he even listed me as one of his problems – I’ve tried to be stronger since then. I need too offer Jacqui more of an ear rather than pour my troubles out on her. I try not to burden mom and dad but that’s difficult as I’ve always leaned on them. Margaret has been the most unexpected prop – I suppose because I never though she would offer as much support as I thought I could give her. She never did in the post so why now? I’m not sure but probably working in a caring profession has mellowed her. Even Dave has changed. Lovely Celia has been a darling sharing her troubles with us – she is a strong woman but needs help herself.

I have begun to save for Paul’s trip to Iceland. I’m determined it will happen. When I first wrote about it – I was afraid he wouldn’t make it and if he did it would be when he was very ill. Now it’s realistic and its for when he’s well enough to physically get the most from the trip. I’m positive it will happen.

I usually write when I’m far away in Scotland. My thoughts continually wander to that lovely place. I wonder if Paul will want to come with us. It won’t be much fun with just us two for him but I hope he’ll come. Maybe he’ll organise a trip for himself. I’d better get my cash organised.

Springtime does offer hope. Our garden is good and provides me with lots of answers. I watch plants that were strong and exciting, fade into insignificance for a while and fight the elements and then return stronger and more beautiful than ever. I know the challenges Paul faces can only make him stronger. He’s always had that strength necessary to cope – despite the shakes in assembly and he even overcame those – he’ll be one hell of a man at the end of this. I watch him with pride.

Saturday 20th April

I’m very emotional today. Even watching the marathon preview made me cry! I’ve been shattered for days. I think its the relief, if that’s what you call it, that I really believe Paul will make it. I’ve stopped being proud and determined and saying things I hope for rather than believed – I’ve gone quiet and know Paul will MAKE IT!! He is amazing. this week I’ve watched again. We went to the hospital for the usual visits to the Path Lab. and Chemo. This time they took blood from Paul’s wrist! What a nerve wracking time. We waited for ages in the ‘comfy’ room. This time Paul coped well but was obviously distressed. He was very sick at home. Simon arrived and was like a tonic for Paul. He stayed till Friday 4.00p.m. He’s a nice kid who was obviously shocked and equally impressed by Paul’s courage. I hope he calls again. Jacqui’s venture into business is providing us all with another train of thought. It’s so exciting for her and she’s so radiant at present that it is rubbing off on us all. She is lovely. Paul is thrilled for her and totally supportive. She is providing us all with hope for the future.

Saturday June 22nd

It’s a very long time since I put pen to paper. I’m sitting in Jacqui’s shop listening to Hill-Billy music surrounded by the perfume of wood, dried flowers and peach oil. It’s heaven.

Paul is still plodding on with his illness. Although he has seemed progressively better in strength. I am still unsure of the future. Most of Paul’s improvement seems to be due to his own determination to live life as normally as possible. He is truly brilliant. His treatment has changed but its still absolute hell for him. He now goes once a fortnight for a series of injections which make him very tired and very nauseous and causing severe indigestion.

Last week he ventured from home to the I.O.W with Simon, Mark, Kathy and Karen. He camped!! It’s the first time he’s stayed away since before Christmas and he handled it OK. Last night he went out to 21st party. I remember him receiving the invite and saying he wouldn’t be able to go because of his hair!! Well that’s not causing him undue distress anymore – they even call him ‘curly’. I’m so proud of him. He’s a shining example to everyone – the folks in the pub are superb. They support him totally. Tonight he’s off to London to play darts. Can you imagine? He’s amazing. He even talked of giving a huge party when he’s better. For the first time – he is seeing the end of his illness and thinking of being well again. What strength.

Jacqui’s shop has been a life-saver – its allowed me to get out of the rituals of school work and home and the worry over George, mom and dad and everything else that gets at me. This place at Ironbridge seems to take me up and away from responsibility and gives me space.

July 3rd Wednesday night – July 4th 1.15 a.m.

I’ve sat up and waited for Paul. What a day. His veins have finally seized up. The could not find anywhere to inject the poison and have decided to insert a ‘driver’ into his chest either today or tomorrow to pour the chemicals in. No more injections.

I know what stress today has been and I know the shock Paul felt when they told him. Sometime in the next few days he’ll be sent for, for a local anaesthetic and they will insert this tube so he can cope for the future injections. Tonight he came home and said how wonderful Kath and Alex are and how understanding and then he cried on me for the first time. Somehow I knew I had to wait for him. Mike said last week that Paul embarrassed by his drinking! I was shocked. I have only pride for him whatever he does – he goes out and lives! That takes lots and lots of guts – especially tonight.

I love him so much and he’s nearly better – today seemed to crack him up – Knowing he was so near yet so far. I must find lots more strength to keep him going and back Mike up too. Tonight I need to sleep – tomorrow will be a long hard day! Mike is restless – I must sort him out.

August 13th

Sitting in a lovely house at South Erradale on holiday. The decision to come and leave Paul and the family far behind was long and painful. Mike desperately needed a break but I wanted to stay home. I know this holiday will build us up for the months ahead. Since I last wrote the emotions have been many. Paul had his ‘Hickman’ line fitted to enable the ‘poison’ to go in easily are for them to extract the blood too. He was marvellous. They wanted him to stay in overnight but he insisted on having a local anaesthetic and coming home. He almost regretted it as they took much longer than anticipated. However he coped as he always does with his wonderful strength. For a while all seemed well and Paul was looking and seeming stronger than ever. He was working hard and the DHSS have upped his weekly benefit to £47 odd. That helps a lot. Then I had a phone call from Queen Elizabeth Hospital to arrange an appointment for him. What a shock. I worried what was wrong. I rang W-ton Royal who assured me, no problems just a routine confirmation of treatment. Paul said sister had told him the same and that was that. We were both very apprehensive but when the day arrived the shock Paul received was too much. They want to have him in the QE for 4 to 6 weeks when he will have intensive chemotherapy on his chest helped by giving him some bone marrow which they take out some time earlier. Why weren’t we warned? Paul has been in control of the situation because he knew what was happening. The shock they threw at him was unfair. We questioned the reasons for the treatment. Why? How did they know this was necessary? We found out on Thursday when Paul went for his regular chemotherapy treatment. It seems they x-rayed him when inserting the Hickman line and found the lump in his chest was not going as quickly as it should. Paul wants a chat with the specialist, but as usual with Paul, luck was not on his side. He has to wait until the 21st as doctor is on holiday. That’ll do except that we are away.

This latest incident has made me realise that the future can never be sorted out easily. We thought he was doing so well and he is but not as good as we need. The questions raised are many. Will he be OK after this? If not what next? How do we keep supporting his wonderful strength of character? The bone marrow transplant involves isolation for four weeks in hospital followed by avoiding pubs, clubs, crowds, etc. The very things that have given Paul his wonderful strength. The support of those wonderful people at the Homestead is terrific.

As I say, I should really be away from home but the future months are going to be tough. Being here has given me space to consider the future and the alternative paths we may have to follow.

One little ray of sunshine has arrived in the forms of Jess. Paul brought her home on Sunday. She worships him. She is the funniest little dog I have ever seen. I have already learned to love her. She’s given Paul lots to think about as she will not leave him!

Monday 30th September

A long time since I put pen to paper. Tonight I feel I must.

Since I last wrote in Scotland saying we needed to regenerate our batteries I realise now how true that was. I have had renewed vigour to cope with work and home as well as keeping things in perspective.

On September 5th – Paul visited Birmingham again. He saw a doctor called Mike who recommended to Paul to go ahead with the bone marrow transplant as well as explaining clearly what it involved. The following day we visited East 3A Ward where Paul underwent a test to check his bone marrow for the purpose of using it later. He was brilliant once again. I spent the day wandering around the hospital and university grounds only to return to pick up a ‘drunken’ Paul. He had had Pethedine which made him float!! He was very sore for a few days in the hips as they’d drawn out samples of marrow from both hips.

Two weeks later he was contacted to go to have the ‘harvest’ on Monday at 2.00 p.m. I returned home on Monday lunch-time to hear they had not got a bed until Tuesday morning! Poor Paul – the anxiety and the build up were shattering and then to hear he had to wait another day – wow – we wouldn’t believe it. On Tuesday morning Mike took Paul over to Birmingham and I was neurotic. I couldn’t bear not being with him. I rang the hospital at 12.45 and they said he was in another ward and to visit late evening. At 3.15 Paul rang to say he was home – he had a chest infection and he had to return two weeks later. They gave him antibiotics to clear the infection but they did not work. Last Wednesday Paul visited the Doctor who gave him more antibiotics which once again do not seem to be working.

Today is two weeks on and Paul had heard nothing from the hospital. After several calls and no response for Paul this afternoon, I rang this evening only to be shocked once more by the ill fortune and inefficiency which has struck again. I asked and explained Paul’s situation to the sister on duty. She asked who his doctor was and when I told her – she said he’d left! She thought he’d probably left instructions in Paul’s notes which hadn’t been picked up!!!!! I couldn’t believe my ears. She said the doctor on duty tonight was only standing and that tomorrow Paul should call the doctor after 10.00 a.m.

I am appalled, disgusted, shocked and desperate. Don’t they know it’s Paul’s life they’re leaving in a file and forgetting. I shall stay home in the morning to sort it out with Paul. I am determined to get him better. Mike too is shocked and angry. We must sort this out.

Wolverhampton offered a sort of security – Birmingham has lost that person contact. I think I’ll ring the sister (Tracy) and ask her to visit. I hope it will help.

I can write no more – I’m angry, worried and upset and know I must find strength for Paul. What he hell are they playing at!!

Saturday 5th October

This has been a very difficult week. My anger turned into deep concern and a great deal of worry and anxiety. On Tuesday morning I rang the doctor who said he had fixed up for Paul to in on October 7th and in the meantime for Paul to go to W-ton to get his chest cleared. I rang the specialist and got as far as his secretary who was a little difficult at first but finally agreed to help. W-ton rang Paul at lunch-time and he went up to the hospital in the afternoon. The doctor there said he had no chest infection and sent him home!! Paul was distressed as he hasn’t stopped coughing all week and since then too. Why wouldn’t they help? Wednesday and Thursday were more depressing as Paul has become more poorly and I feel his sense of security has been lost and with it a lot of his confidence. Yesterday, Tracy rang, thank goodness and she says they definitely want Paul in on Monday probably to stay for all the treatment. At last – she has a good manner and I feel Paul trusts her. That’s what’s needed now – a trusting and caring time rather than anger, frustration, and that feeling of being left .

Wonderfully, Paul’s friend Mark is here to stay the weekend and will keep Paul’s mind occupied for some of the time at least. I’ve watched Paul suffer very much the last few days and if he’s been thinking the same thoughts as me he’s had a lot to cope with. I’ve been fussing over him too much I know and there’s times I’ve cried for him. Just driving along or walking with Jess have been lovely times when I’ve let doubts creep in to my head. I have to be positive again but now? I’m going to Jacqui’s shop today. I think it will help I’ll make the best arrangements I’ve ever made.

Tuesday 8th October

I’m sitting at Paul’s bedside in the QE Hospital. He’s very sleepy but knows I’m here. He’s had a bone marrow ‘harvest’ and that means the go ahead for his extra chemotherapy treatment. At last I am so happy and relieved. I was beginning to despair whether the hospital would ever get their act together. At long last. Yesterday was worrying until the doctor last night said he would make sure Paul was looked after. From then on both of us, well, all of us felt relieved. The last few weeks have been lonely and insecure and that was how I felt. Paul must have been beside himself. Well, hope with me again and stronger than its been for ages.

Mike and Jacqui are at home with colds and won’t risk visiting – I could not keep away. Don’t know what tomorrow brings for Paul. Certainly lots of soreness and discomfort but worth it. He may move into the isolation unit if its OK. Not sure yet though as no-one seems to be talking today.

2nd January 1992

Here I am again. This time I need to put thoughts down to get them out of my system. Paul is in the Bone Marrow Transplant Unit in the QE Hospital. It’s his 18th day in this tiny room which has become his prison. He’s suffering such hell that I cannot believe his ability to cope. He is so poorly. We knew it would be rough but this is something else. I have been very down these last few days but today I am positive – despite every set back that’s hitting him he is still getting there – and will soon be up and well. I know it’s a long, long road ahead but he’s going to make it. Where can I find the strength to help him? I’ve been pretty useless so far other than being here with him each day. The medical team are working so hard behind the scenes – this time they have a new problems – his lungs again are causing a problem. I know the risks when this happens but I’m sure he can fight it. His intelligence and lack of tolerance of fools is shining through alongside his courage. He’s just consented to another bronchoscopy! He went through hell first time but they’ve assured him he won’t remember a thing this time. About 3 o’clock the doctor will come and do it here in this room. One of the nurses will stay and hold his hand. They are wonderful. Later he has to have a new line for injections fixed up on his chest. Despite all these problems he seems a lot better today.

Saturday March ??th 1992

Apart from one brief writing which I cannot find at the moment this is the first time I’ve had the courage to write.

The last few months have been traumatic but provided us all with the knowledge that life is precious and we will fight for it and support each other forever.

On Wednesday this week the doctors at the QE implied that Paul was OK. They didn’t leap in the air and say outright but cautiously and carefully told him that he was doing well. Doing well! His chest x-ray was clear to us but obviously they could see little white marks which are scars and other things.

I suppose I should go back to last October when the darkest days began.

After the bone marrow harvest Paul as sent home because of a chest infection and referred back to W-ton for investigations. This turned out to be a dreadful experience for Paul – a bronchoscopy which involves inserting a tube and various instruments into the lungs via the nose and throat whilst you are partly conscious.

It was the most horrific incident – Paul was shocked beyond belief. I shall never allow that to happen again.

Then came the waiting for something to happen but nothing did. I rang doctor’s secretary’s continually but was continually fobbed off until I rang the doctor at the QE and asked for his help. He agreed to talk to Paul on the phone and offered reassurance. Paul in the meantime was becoming really ill he was having no treatment, his cough was continual, his eyes were black, he was dizzy, weak and very helpless and worst of all – frightened.

The security of knowing people were doing something for him had gone. I was desperate. I felt it was deliberate as they could help him no more.

However, the doctor fixed up an appointment in November when we encountered the sombre Dr. P. What an experience. He was almost rude – but knowing him more now we know he was very, very concerned. He arranged two sessions of intense chemo, blood transfusions and further appointments.

Paul’s hair which had just begun to show again promptly collapsed again!

One bright spark amidst all this, Paul met up with a happy-go-lucky girl called Jo who offered him a further reason to live.

Then came the call – to go in before Christmas and spend Christmas undergoing treatment. Paul resisted at first but was finally persuaded to go ahead. Tracy (the sister) confided later that he really would have not have made it had they left it any longer.

December 16th

Paul went in to his cell! It was not that unpleasant with several home comforts and the highest standard of nursing imaginable. The chemotherapy lasted seven days with all its horrific side effects. We got used to the nurses and their routines, the names of drugs, we’d not heard of became familiar, the doctor’s faces were examined for any hint of worry etc, and generally we became part of the hospital machinery. Poor Paul was attached to it as they poured one drug after another into him. He developed a severe rash as a reaction to one of the chemicals, he became swollen and lumpy because of all the fluid he was carrying.

On December 23rd he received his own marrow back. It arrived in liquid nitrogen cooled to -190o C!! It was warmed to body temperature and put back via the Hickman line in about 30 minutes. For two or three days Paul was fine. Christmas Day was unusual but quite jolly considering.

Stephanie’s baby Amy was born and although tiny 1lb 8oz – she provided Paul with someone else to think about who was fighting for life.

By the weekend after Christmas Paul’s mouth and throat became unbearably sore, his saliva dried up, his tongue was huge, his skin was bright red, his eyebrows bleached white and life was very, very, painful. His temperature rose and fell, his blood pressure was low.

By New Year’s Day – he was so poorly. We did not know then but his mind had begun to switch off the memory of the days to follow. He still talked lucidly, sensibly, asking questions continually about the treatment he was receiving.

He had a severe pain in his back and his breathing became laboured. He was only comfy propped up by pillows in the chair beside his bed. On the Saturday they diagnosed pneumonia. The fear we had all dreaded was realising. Saturday night and Sunday were tortuous. We watched as Paul was fighting the battle of his life. he was not connected to so many drips – they could not give him all the blood products he needed as well as to fight the pneumonia.

Doctors came and went, the nurses never left Paul’s side. He was attached to a machine which monitored oxygen levels and this would trigger a bleeping sound below 85% – for much of the time this was in action as Paul’s oxygen kept falling below 80%.

On Sunday night Paul was struggling for every single breath only seeming to find any any oxygen from the very top of his lungs. A new doctor appeared dressed in his evening suit who had obviously been called away from dinner. He was head of intensive care. He was called to see if Paul should be transferred to Floor 5 – almost life support machines. He talked to Paul in front of us and as usual, Paul, that remarkable young man we all know and love, held a sensible conversation with the doctor. I know to this day that conversation saved his life.

The doctor come out convinced Paul was not ready and the priority was to drain the fluids from his body including his lungs. This task began and Paul was wonderful, trying to co-operate, hold conversations and still keep going. He drifted in and out of sleep all through Monday, at one time insisting I kept talking even though he could not respond. On Monday evening Mike sat at his side and read to him. He seemed to set on getting well. We went home on Monday night and after a phone call at 12.30 to the QE I went to bed satisfied he was getting better. I rang again at 6.45 to be told he was stable. I decided not to go to the hospital early with Mike but to go a little later about 10.00 to have a shower and get everything sorted at home. At 9.30 the phone rang and Kerry suggested we went to the hospital urgently as they were reviewing Paul’s treatment.

I rang Mike who went over first and Jacqui and I followed. I shall never forget seeing Mike on the car park waiting for us. They had told him Paul has a virus known as CMV – a pneumonia for which they had no drugs which would work. Mike was devastated – he sat in my little mini and cried. We all did. Somehow though I had to be with Paul and was determined never to leave his side again. We went to the ward where Dr. H explained it all to me. She implied we had lost him – he would go to intensive care – then life support until the end. I don’t think she reckoned with Paul’s spirit. I am sure his intelligence had the power to tell his body to overcome it.

Another man came from intensive care and again Paul could converse intelligently. “I don’t think we want you yet”, he said! I was determined they were never gonna get him. His breathing seemed slightly easier. Jacqui and I stayed at the hospital that night and I went over at about 7.30 to see him.

I watched and waited as the nurses fussed and checked and changed his drips and generally were everywhere. Suddenly Paul seemed to wake and he said – “that’s the best sleep I’ve had for ages”. What a statement. At the time we hadn’t realised he couldn’t remember a thing since a week before. On Wednesday afternoon while Jacqui was with him Dr B arrived again and shook him by the hand. Doctor’s came from everywhere to look at him. This continued for a few days as the dawning came to us all and again hearing the statistics – one in ten bone marrow transplant patients contract CMV and of those that do, one in a hundred survive.

The blood department and liver department asked for some blood to examine for research.

The following weeks were slow and endless but Paul remained so positive it gave me such patience. Visitors increased and finally Paul was out of isolation. It was a wonderful moment to see him walk down that corridor. His legs must have been in agony but he held his head high and did it.

Most of what I have written is fact not feelings. I could not have written down the things I was thinking. My greatest fear was the emptiness we would feel without him and the loss of such a wonderful person to influence others as he has done.

Slowly and steadily we built up hope, hourly to begin with, then daily, then weekly and then to the future.

The emotions we all experienced were all there except one and we that celebrate that fact.

Paul came home and coped quite well at first then a cough developed again and he found himself back in hospital with another pneumonia this time. That stay in hospital was awful. The food was bad, the whole attitude was wrong and compared with the nursing attention of BMT it was a stark contrast.

However, home again and very determined. The pills he was taking were making him sick and after a few days he took his own treatment into his own hands. Worried though I was, Paul’s psychological mood was more important than any drugs. He proved correct too. This week he seemed more poorly again and on Monday and Tuesday his cough was dreadful and the sickness returned. My fears were building up again – has the disease returned? That question hung over me until Wednesday when Paul went for his check-up.

The morning was endless but worth all the waiting – the x-ray was clear. All the coughing and sickness were nerves. Paul too was afraid of what he might hear.

He has no medication from now – just convalescence. His weight is 8 stone 10 lbs. – we must build him up. All the stomach problems and chest problems refer back to the chemotherapy.

On Friday night, the four of us went to the Homestead together. I was so proud of him and still am.

The future is good – I know we have a long way to go – but we’ll get there. We’ve learned so much from Paul – all of us that know him.

March 20th 7.30 a.m.

Just a line before I go to work Paul was 23 yesterday. A milestone I thought he may never see.

Thursday 26th March/27th March 1.00 a.m.

Just realised its Friday morning. I cannot sleep. I have many things to write. Paul is doing well. Since his last visit to the QE he has made wonderful progress both in health and attitude and spirit. He has stopped being sick at last and is managing to eat, he has found energy to enable him to train with his weights and he has managed to go out.

Up until tonight I have been really, really delighted with his progress. And I still am! W-ton have let us down again. He was supposed to have heard from both dieticians and the chest consultant but absolutely nothing has happened. Fortunately – he does not need them. Paul himself decided that he did not need their help and its a good job too.

Sadly today I write because I need to put my feelings on paper. I cannot understand what is going on. Mike is being unpleasant, no, unsympathetic towards Paul. I cannot really explain and do not know what to do.

Paul has said tonight that as soon as he is well enough, he’s leaving!! I’m devastated. I know I’ve smothered him but Mike is the opposite and made him unwelcome. He says for the last two weeks Mike’s made it clear to him that he’s not welcome. I can’t believe this. Only a few weeks ago Paul was near to death and suddenly, now he’s alive he’s not wanted !!!

What is he playing at!

I know we all need to adjust and it’s been difficult with so many people visiting our little house to accommodate everyone, but surely its worth the sacrifice. I don’t know whether I’m right or wrong but I cannot accept Mike’s attitude. When we were 23 we wanted to be free to live out lives as we wished. To be with friends, to go to bed late, to be noisy, etc, etc. Paul has no choice at present other than to depend on us, but he wants to begin to live life as a normal 23 year old. What is Mike up to? If Paul goes because of him – I shall not forgive him. From now I shall watch – I’ve let Mike know how I feel tonight and if there’s no change I shall react as in the past. I only wish I was younger.

I wrote in the past about the difficulties families faced when illness came. I had failed to see the problems which could arise as things got better. I can see Mike’s viewpoint a little, as he does not want his life disturbed. What he fails to remember is how he has disturbed others in the past. Also Paul is trying to pick up the pieces of life whilst still being ill – he has a long, long way to go yet and still needs the security of our home to build odd.

He has my blessing all the way.

I think from now on I need to consider not only Paul’s future but my own. I think I’ll help Paul find a flat or somewhere so he can go to Poly if he wants. I couldn’t bear him to leave W-ton yet I know we’ll go eventually but I don’t want him forced out by Mike – I want him to go when he’s ready.

All this will mean a change in attitude to life, money, holidays, etc. I fear for the future. Only last week I was so happy and for the first time for so long the future looked good suddenly, I don’t know. The one thing I do know is that Paul is OK and that is the most important thing of this. His cough has even gone too. Next Wednesday April 1st is another hospital visit – I know all will be OK. Paul just needs to see the end of his Hickman line – then golf – darts and the world opens up.

Shall be positive from now – life is precious – mine too – and I mean to live it.

Its now March 1994

I pick up my pen for two reasons. Firstly to explain and update the events of the last two years. Secondly to express my feelings once again. This time it’s different …....... as you will find out.

Following Paul’s bone marrow transplant we witnessed a slow but steady improvement as Paul put on weight (a little), his hair grew again and once again his wonderful attitude and determination to enjoy life continued. He went for regular check-ups at the QE and by June they were please with his progress but concerned by cloudy patches at the top of his right lung.

He experienced the trauma of a lung biopsy at East Birmingham Hospital where he proved to be a difficult patient on an understaffed ward. Meanwhile we had organised a holiday in Ireland and were determined to go ahead.

Since the end of June Paul was experiencing back pain but no-one seemed concerned. He tried various painkillers and by the time we went to Ireland his discomfort was intense. He didn’t want the results of the biopsy until we returned home – determined to get on with his holiday. It was a time I shall always remember. The house wasn’t up to its usual standard but it provided us with a base only yards from a local pub, of the likes I shall never experience again. Such lovely young people we met and they were an example of how life should be like.

However, the holiday wasn’t without its medieval problems. Paul’s wound on his chest following his operation became infected. He visited the local GP in Gastle who was marvellous. He saw Paul almost every day of the holiday and helped to clear up the problem.

On returning home Paul had an appointment at Birmingham to find his results. Amazingly he was told his lungs were clear and the shadows and problems in his lungs were just dead tissue! We celebrated.

On the following night, Paul said he was having a party two days later. What a party. I think everyone in Oxley came to our house that night.

Paul’s buoyant mood continued but so too did the back pain. He and Chris went off on a back-packing holiday in Ireland. He returned looking tired and serious and I didn’t realise why. On the following Wednesday in September he had to go to the QE for a check-up. As usual I had time off work and drove him over there. Just as we were parking the car he told me he had a new lump in his neck. I was shocked but determined to try to be strong for him. He saw the consultant – Tracy, the sister was devastated when I told the news. They said there was nothing more they could do to help and referred him back to the specialist in W-ton. This seemed like the end of the world.

I can’t remember how long it was before Paul hear from the specialist but throughout October and November Paul underwent weeks of very powerful radiotherapy on the neck and top right lung. His hair fell out on his chin and chest and his skin became burned and sore but basically Paul coped well on these days he went for treatment. By the end, he was tired but still positive until he was told “that’s it”. No more could be done! We were concerned about his finances and when we received help – the Social Services said he could get the higher level mobility allowance because had had less than six months to live. This was supported by the doctors but no-one actually told us this. This was devastating but something we all managed to come to terms with. Paul was amazing once again. He planned that if this was his last Christmas, it would be good. He chose his presents carefully. Everyone that meant anything to him were thought about and considered. He wanted another party and again – the whole of Oxley turned up once more.

The Christmas holiday was followed by an amazing holiday in Tenerife. Sid let Paul, Chris, Adam and Rob go out to his time-share for a week and they had a ball!!

Paul’s tablets were beginning to take effect. The steroids were encouraging his appetite and feeling of well-being. He was trying to live every day to the full. His friends were amazing. Such support for a friend in need I have never seen.

We never knew what each day would bring. Jacqui was so devoted to Paul. She cared for his every need. She was so close she knew his every movement, reaction and even his thoughts just as a mother watches her baby. The strength of Jacqui kept me going. Mike plodded on, hanging on to routine almost determined to say nothing must change. But it was changing. Paul’s pain increased and increased. He was chain-smoking and pouring Jameson’s down as fast as he could. No-one minded and everyone understood. Adam and Phil were brilliant. They were here two or three times a week as Paul became too ill to go to the pub.

By Easter, the four walls of the house were beginning to become like a prison for him. So holidays seemed the answer. I forgot to mention the team of home support from the Hospice were also coming in and they provided us with the security to go away by finding doctors and nurses who would help if we needed when we were away.

At Easter we went to Torridon for a week. It was wonderful. Paul really believed it would be the last time he saw the mountains. My memories of that week will always stay – Eric Clapton music, looking mountains and Paul seeming happier than he had been for months.

May was tough. Paul’s pain was still increasing – so was the morphine. We went away again to Aberdovey. We found this lovely farm with a single caravan overlooking the estuary. Paul was really poorly and we managed to find a doctor who increased the morphine yet again. Phil came up to stay with us. He was such a support. Jacqui and I were now injecting Paul with heroin to kill the pain.

June came and while I went to Borth Youth Hostel with the kids from school, Mike, Paul, Phil, Christ and Simon went back to the caravan. It was a scorching week and Paul carried on smiling with the help of his friends. Night and day were confused and he slept whenever he was out of pain. When he was awake he was so drugged up it was often difficult to understand him but we carried on living and loving him and talking about tomorrow. In July we had firstly a weekend at Marg’s caravan and then a week. Until then we had never expected Paul to still be alive but there came some little rays of hope that if he’d overcome the six months and more he could continue.

Paul’s mind was incredible. He began to try to walk a little more and decided to go upstairs to build up his leg muscles and even managed a walk around the block and then to the Post Office. Tracy suggested he chatted with the physio at the hospice and also suggested aromatherapy. A visit to the hospice and a corner seemed to be turned. The Physio showed him exercises and techniques to relax and the lovely aromatherapist was brilliant. I’d never believed in such ‘rubbish’ before but seeing Paul relax after his massage was something else. Next, Paul talked to Tracy about his looks and his weight and she told us of a new doctor at the hospice – Dr. R who had new ideas about drugs and their effects. We met this doctor who explained the side effects of steroids and similar drugs and it seemed that many of Paul’s ailments could be due to the treatment rather than the illness. Most of all this man gave Paul hope. I remember him saying, “in three months time you’ll begin to see the benefits”. He was the first person we’d encountered who gave him a life, however short it may be, he spoke about a future.

Jacqui was there. Jacqui was always there. She was calm, sensible, caring, understanding and the most loving sister and daughter you could ever imagine. We left her looking after Paul while we plodded through our daily routines. She watched and cared and gave everything. I shall never know how to repay her. I suppose repayment is the wrong word because she did it for Paul but I suppose she was an example to us all and everyone who met her.

We had organised yet another holiday in Scotland. With such short notice we found accommodation hard to find. We ended up near the Kyle of Lochalsh and although some of the holiday was OK – it proved too long and tiring. Paul slept most of the time.

On returning home the aromatherapy treatment continued and Paul’s strength and outlook changed. The steroid reduction was just beginning to take effect. Paul began to walk further and began to live again. He even managed a few visits to the pub. Chris visited in the afternoons and Adam and Phil were brilliant companions.

Alec organised a trip to Ireland and his wonderful friends took him, supported him and cared for him. You cannot imagine a greater bunch of folk.

The one day, a little miracle happened, Teresa who Paul knew at Infant School came to school to do some observation prior to a post graduate course in teacher training. She wrote Paul a letter and then came to visit. Then she came again and again … and she’s still here.

Paul was besotted. Someone loved him just for being Paul. His illness paled into insignificance. He went out for meals, the theatre, the cinema and between September – November life appeared to be bliss. He had his down moments, his quiet moments and Jacqui was always there to listen, to advise, to coax and to care.

He continued to reduce his steroids until finally they were finished but his appetite waned and he stopped eating meat and he began to feel poorly again. He became tired, picked up a nasty chest infection and just before Christmas he was in need of a blood transfusion. Once again Dr R was brilliant. He managed to take samples and fit the vein-flan in Paul’s arm prior to the transfusion.

His weakness and illness and accompanied itching all seemed to point to Hodgkin’s returning with a vengeance. While he was at the hospital – the specialist saw him and more of less said “what are you doing here – you should be dead”! He contacted Dr R and inferred that maybe Paul was – no cancer because if he had still got it he shouldn’t be alive. Paul was excited but confused and none of use really believed it. He began to cut the morphine which by now was 1400 mg a day. Slowly he reduced it. Xmas came and went and then a holiday in Badachro over New Year. Paul still seemed tired and coughing. On his return – more blood transfusions but now he was scarcely eating.

Dr M from New Cross, the chest consultant was now involved and persuaded Paul to have a bronchoscopy in February. He managed this after much persuasion – Just realised Paul had pleurisy mid-January and was in the Ward recovering when Dr M came on the scene. He next persuaded him to go to Birmingham Easter for another lung biopsy. Paul agreed and to everyone’s amazement – the results were brilliant – no cancer!! However, once again Paul was weak and getting weaker and sleeping most of the time. His speech was confused and he was dreadfully tired. Dr R visited our home and admitted Paul to hospital. This was mid February – and we were all so afraid. His blood oxygen level were only 60’ish, his heart racing, blood pressure low and a severe chest infection.

However, the amazing character we know and love pulled through yet again. Results of tests kept coming through all saying no cancer. What they did show was a rare chest disease called BOOP – obstructive pneumonitis which they could treat, but at present not prevent. On returning home we witnessed an amazing miracle. Paul was alive and living life as normally as he could. Dropping tablets steadily and slowly and beginning to sort his life out.

He had a car on the mobility allowance scheme and moved into Alec’s house in Beech Road with Teresa. Such a wonderful time.

Its not been all easy going since as his chest has played up a couple of times and he had an attack of stress or nerves which caused a panic attack. This all now seems under control and after a chat with Jane the hospice Counsellor, Paul is coming to terms with life without cancer.

I hope my story ends here. I know the time ahead will have its ups and downs but after 3 and a half years I know I’m a better person that I was, I know I have a lovely family and I know I have a son who has a lovely girlfriend to care for him and that he is going to live!!!

8th May 1994

Wednesday August 2nd 1995

Paul died two weeks ago, 19th July 1995.

Although I did not write after he left home and lived with his lovely wife, Teresa, there were many times when I wished I had been able. Sometimes through pure joy at seeing Paul’s happiness and others through the knowledge that he knew he had not long to live. The last two months have been the hardest. Leaving Paul in his own home yet knowing that was where he wanted to be tore me apart. We have since gone through all the ‘if onlys’ in the world but nothing can bring him back. I know that he will never have to suffer some of the awful indignities severe illness can bring and it is that and that alone which helps me come to terms with his death. He knew what the score was and that wonderful mind stopped the rest of us giving up our lives for him. He gave his for us.

Thursday August 14th 1997

On Wednesday August 6th 1997 Mike and I took Paul’s ashes up to the lonely lake on the side of Cader Idris. A place where he and Mike had laughed and relaxed and washed their hot feet in the cooling waters of Llyn y Gadair. Mike knew the exact spot and knew all along this was the perfect spot for Paul.

We left Paul’s ashes amongst the rocks on the shores of lake.

I know he would be happy to be part of that beautiful mountain. I need never say goodbye because I know that he’s up there watching the brave, the weary, the crazy and all manner of folk who pass by or just look in awe at the splendour of the mountain.

How much better than being buried in a hole in the ground! Freedom.

Sue adds 8.6.04

We know that we are closer to each other because of Paul’s illness.