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My previous illnesses are negligible. In June 1990 I was 28 years old. I found a pea sized lump in my right testis. There was almost immediate denial/shock – an ‘it will go away’ attitude. Every day became a compulsive routine – knowing it was growing – no pain – living with this thing. Apart from the size I did not let it affect my day – I had successfully blocked it out of my system. The weight of the mass meant that it started to affect my walking pattern. I was frightened of facing this thing especially as many of my parents friends who were diagnosed with cancer had gone into hospital for an operation only to have died very quickly afterwards as the cancer had spread post operation. I also in some strange way believed that when the time was absolute I would get it sorted. That time came in May 1992 – some 23 months later. I had completed a 26 mile sponsored walk and suffered massive back pain. I did not relate this pain to the swelling lump. After a further four weeks of unbearable pain my flat mates rushed me in to Kings College Hospital A&E at 1.30am. I had been crying in pain and nothing would take it away.
When I presented to the duty registrar with lower back pain he asked if anything else was wrong. I owned up at this stage and showed him my swollen testis. By this time it was about 4 ½ inches long by 2 ½ inches wide and very heavy. His first observation was that it could not be anything sinister – he gave me more Three days later I went to my own GP. On seeing the problem he alerted his team and one by one they came to ‘have a look at me’. It was really from this moment that I realised my body no longer belonged to me – I was medical evidence. The GP to his credit got me into Guys Hospital the next day for Ultrasound, which showed that it was a non discernable mass with no testis visible. I was operated on two days later.
An orchidectomy had been scheduled but the mass proved too large for this type of removal. My scrotum had to be cut to remove the large mass. Pathology revealed a teratoma. I then was put under the care of the nuclear physics department and irradiated for a bone scan to see if the cancer had spread to the bone, especially my back. The pain was being managed by three-hourly iv pethadine.
Once I was home to convalesce, I received the phone call from Guys saying I had no secondaries and the back pain was probably sciatica. Five further weeks of convalescing did not help my pain and eventually it was so bad my parents took me to the A&E at Southend General Hospital in July 1992. They obviously treated me for acute sciatica as indicated in my file biked down from Guys. I was transferred to Rochford Hospital for management and observation.
On one occasion as I went to the toilet I bent down and felt as though I had been cut in two. I was paralysed from the waist down and very scared. Two lumbar punctures followed which revealed bone metastases in L4, L5, S1. I was rushed to Oldchurch Neurological Hospital that night by ambulance in Romford and told I had secondaries. Until this time I did not know. I was scheduled for a laminectomy to free the spinal cord from the invading cancer. I was told that I may never walk again.
I remember waking up from the anaesthesia with a large pressure pad on my lower back – I was catheterised. I found I had feeling in my upper legs only and the rest was numb. I spent a total of ten days in Romford and really tried to push myself. I remember the pain was still there but it had eased. I was transferred back to Southend General Hospital and assigned to Dr. Alan Lamont who would be managing my chemo regime. He started me on iv BOP VIP – the acronym for the drugs used – Bleomycin, Cisplatin, Volterol and Iphosphomide. The regime was due to last for six sessions, each of five days via infusion. There would be a two week gap in between each session to allow the body to recover. My blood tumour markers – afp (alfa feta protein) was 850 at the start. By treatment one it had fallen to just 7. My body could only manage three of the BOP VIP sessions due to its intense toxicity – especially the Iphosphomide.
Paradoxically, it was probably the toxicity of the regime that helped save my life. Alan Lamont described my treatment as though I was an expensive china plate and the chemotherapy was a hammer. The hammer had to strike the plate with enough force to crack it and not break it. On reflection, I realised just how difficult that actually was to achieve with the tendency not to ‘hit’ it hard enough for fear of breaking.
The remainder of my three sessions were BEP – Bleomycin, Etoposide & Cisplatin. (I would later get to meet Tom Connors who developed the drug Cisplatin and its derivatives at a conference).
I completed the remainder of my chemo regime, despite vomiting up to forty times a day and total hair loss by the 2nd treatment session. In fact it was the loss of my hair which had a profound effect on me almost to the point of distraction from the seriousness of the situation I found myself in. There is something terribly shocking about waking up each morning and finding huge clumps of hair on your pillow. I had even grown a beard prior to my treatment and that, together with all my body hair fell out too. Of course, the chemo regime as described above can be fatal in itself. Each of us as patients are effectively part of a clinical trial as we all react to the drugs in different ways. During my 2nd treatment my platelet count dropped to single figures (usually > 140). Platelets form part of the body’s clotting agents in the blood so I had effectively become a Haemophiliac and confined to hospital whilst receiving platelet transfusions which display its own problems with raising body temperature.
My platelets did rise but the next hurdle was that my left leg developed a DVT (Deep Vein Thrombosis) in the femoral artery due to my sedentary position caused by the paralysis. This was a very touch and go situation and Alan Lamont had to make the decision what to do. He was determined to proceed with the chemo but realised that at any time the clot may move resulting in a pulmonary embolism which could be fatal. He took my parents into his consulting room to tell them that I might not make it through the night with a 50-50 chance and that if I did not continue to receive the chemo I would die anyway. Armed with this knowledge he continued with the chemo iv in my right arm and introduced iv Heparin in my left arm.
Heparin is a powerful anti-clotting drug which breaks ups the clotted blood vessels. My left leg had swollen up like a translucent balloon. Although I was out of it for much of this part of my treatment I do remember the concerns which were around me from family, friends and hospital staff. I was put into an isolation ward because of my low resistance to further infection. I knew that isolation ward could mean death but was not I remember two chaps in the ward, Tom and Trevor. Tom a young 70 year old whose wife came to visit him every day. She had to organise a hoist for their home on his return as his cancer had left him immobile too. His wife was lovely and he was the life and soul of the ward. Trevor was a 23 year old and a lovely chap. He had Non-Hodgkin’s Lymphoma and his mum was there every day with him. He looked well’ish when he was admitted and the three of us chatted often. When I was moved to the isolation ward he came in to see me on my birthday on 27th October 1992 and wish me well. Four days later he died in his mother’s arms. Tom died too. I didn’t understand to be honest. I looked ill, they looked OK. They died and I survived. I have always tried to be grateful for that but felt strange when contemplating the outcome – As the DVT seemed to be under control and my platelets recovered somewhat I was let home in the first week of November to have a belated birthday celebration. I was 31. Going home was a major issue for me – and my Mum! Faced with having become institutionalised and totally dependent on the help and support of the medical staff for all my needs and medication, I felt extremely anxious about being home even though it was what I really wanted. Mum was confronted with a huge bag of medicines, all of which had different doses and frequencies. She drew up a medicine chart and coped brilliantly and within a couple of days I felt at home again. My stays at home were about 2 weeks. This was my first time home in 5 months My afp tumour marker had been taken frequently to determine the chemo effectiveness. After the first 5 days infusion my afp had reduced to acceptable background levels. Whilst this was a good thing, the reading is directly affected by the chemo so the other 5 treatments needed to proceed to really hit the tumour. Looking back at the treatment, all chemo has its risks and each one of us is like a guinea pig for the particular regime we are given. Kidney function is so important as the ability to deal with the chemo and additional fluid intake is paramount. Your heart, whilst obvious, is key in dealing with the and invasion of the body of both the cancer and the chemo.
By the time the sixth and final treatment was delivered it was Christmas 1992. I have always loved Christmas and been like a kid during this time since I was a kid! Getting to Christmas well was sort of a target. No one said it was – we just all knew it was. I knew the treatment would be over on December 23rd.
That day arrived and I went home to return the next day to see Alan Lamont for a consultation. He said that as far as he was concerned I was free of the cancer and I should enjoy my Christmas as much as I could on a seafood diet – see food and eat it!! He also requested that I return on 5th January to start a 6 week daily dose of external beam radiotherapy targeted on my spine. He said this would be a ‘belt and braces’ process like an additional insurance policy against the return of the cancer. He had skilfully guided me through troubled waters to this point so I booked in on the 4th Jan to be marked up and tattooed. I am the proud owner of three tiny pin-prick tattoos which enable the Linear Accelerator (LINAC) to be correctly positioned each time thus targeting the right spot to the right depth.
I remember going to the off license with my Mum & Dad in my wheelchair. I was about 9 stone having started my treatment at 13 stone 10 pounds. I think I managed to keep my sense of humour throughout but felt so weak and did get frustrated at not being able to do those things I really wanted to. I was on over 100mg twice daily of MST (Morphine Sulphate) together with a whole collection of assorted drugs. Despite this I had a craving to buy 12 bottles of wine – and I don’t really drink!! Must have been the drugs! I also bought some models to make – the thinking was I wanted to keep my brain working hard and to work with my hands. This eventually led to me buying my first PC. Christmas Day of 1992 was obviously a joyful occasion. I had effectively been given the ‘All Clear’. I was so sick the whole day though and couldn’t eat I don’t think I realised until writing this the massive impact it was having on my family. It must have been horrible for them – the uncertainty seeing their son and brother going through such trauma. For the next few weeks I had to battle with Thrush – often a by product of a cytotoxic regime. It seemed to take over my body completely. My throat and trachea were covered in milky white spots. I could not swallow or speak effectively. I had to have food pureed and lived on soups which I could barely get down. The medication I took did not seem to work. In addition I started to develop an intense bed sore on my right elbow from my continual ‘propping up’ on my arm. It was so bad that the bone was showing through. It had quickly become infected and ugly. A special anti-fungal dressing was applied with a seaweed base. Its objective was to kill the infection, remove the dead skin and encourage new growth. Whilst the elbow was regenerating the thrush was getting worse. Eventually, Southend Hospital tried a new 7 day regime of medication at £40 per pill! Within 3 days I felt so much better and by the end of the seven days the thrush had gone. My elbow started to respond to the algae dressing too as there was a time when it looked like I The six weeks of radiotherapy meant daily visits to the hospital. A two hour round trip for about 3 minutes of cooking time! After the six weeks treatment I was on monthly follow ups, which included chest x-rays and tumour marker blood tests. I was scheduled to meet the physiotherapist to discuss my rehabilitation protocol. The physio, like the rest of the medical team who had treated me, was amazing. All of the staff at Southend General who looked after me and my family so well need special mention. The physio was as determined as I was that I should walk again. I can recall the first occasion I sat in my wheelchair in front of the wall bars contemplating standing up for the first time in nearly a year. I grabbed the bars and pulled myself up. My legs did not feel like my own – any sensation had long gone. No feeling at all from my knees down. There was a sort of dull ache/pain in my feet but not one I recognised. I termed it a super-sensitivity but I could step on a nail and I would not feel it. Grabbing the wall bars started my mobility rehab. I know I was determined during this phase to walk again even though at this stage the prospect looked bleak and a very long way off. Daily visits to the physio meant that I had to focus on achieving small targets – how long standing, wall bars up and down etc. My first step at the wall bars was very emotional. A little lift of the leg backwards and then collapse back into the wheelchair. I wanted to walk again – I really wanted to run again but was never sure that could ever Progress was slow but over a year I learnt to ‘walk again’. A completely different walking pattern had to be developed using my quad muscles as levers as I had no dorsiflexion (foot mobility). This meant I had drop foot and a tendency to trip over as I shuffled along. As I moved from the wheelchair to crutches the whole world seem to take on a new perspective. I had been a chap in a wheelchair and people treated me differently, now I was at least upright again. It made me understand how we can as a nation assume so much about people by the circumstance or the way they look without bothering to actually get down and Crutches were replaced by sticks which I used for a good two years. My sleeping pattern was generally that I slept more than I was awake as the drugs were still fairly strong to counteract the pain that I felt on a daily basis. You learn to live with residual pain that you can do nothing about and to that extent the body is a truly remarkable and resilient vessel. Even though my feelings never returned in my lower legs I regained 5% motablity activity which enabled me to ultimately get off the sticks to just one stick and then none. So what did I learn? Well the most important is that I should have gone straight to my GP on the day I found the lump in my testicle. There is every chance that I would still have had the testis removed but equally I may not have been paralysed and it may not have spread to my spine. Having said that, each one of us faces a journey and my journey is such that I can now tell my story to hopefully encourage others to go to the GP and be encouraged that our medical profession and staff are excellent and that people do survive and recover from even the most desperate situations

Source: http://www.digi-medical.co.uk/blog.pdf

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