| Ambrose, Vice-Chairperson of the charity Lymphoma Support Ireland, was diagnosed with non-Hodgkin's lymphoma in 1983. Here, he tells his story about his experiences and treatment. 'In July 1983, I was a 26-year-old buyer for a retail company. I epitomised the story of someone without a care in the world. If only I had realised it. I was married with a young son. After a few moves and promotions, I had risen from being a trainee manager in a store to being in the spotlight at head office and travelling the world buying stock. (It's not all it's cracked up to be.) 'It was on one of these trips that my illness first manifested itself. I was in Taiwan for part of my trip when I had a bad night in my hotel. In hindsight, I'd probably had a bad few weeks, but kept going, not noticing anything specifically wrong. On this night, I couldn't sleep. I tossed, sweated and had severe pain in my back, which I couldn't alleviate, no matter which way I turned. I survived through the night until a "respectable hour" and, at 6 am, I rang the hotel reception to get a doctor. Many years before, I had pneumonia with a touch of pleurisy. The symptoms were the same, so I wasn't too concerned. When the doctor arrived, he diagnosed "neuralgia" - back pain - and prescribed two tablets. I was picked up from the hotel by our company's agent, who did nothing to reassure me by saying not to take the tablets, as he was probably a quack! 'I continued the next week of my trip and returned home, feeling not much better. After a couple of days, I went to my local doctor. I had now had this flu/pneumonia for 3-4 weeks and it was not going away. He listened to my chest, took my pulse and temperature, etc. All the usual things. Nothing obvious. But, thankfully, he decided on a second opinion. Within a few days, I was having a biopsy, the results of which quickly had me in hospital. I was told I had non-Hodgkin's lymphoma, which meant nothing to me. No one mentioned cancer, and I didn't know it was. It was a long time before I associated the two together. My concern was that, if I was coming in next week for treatment, how many days would I be off work? 'A lot of what happened over the next while is confined to the dim mist of my mind. Some went past me, some I just forgot with time. Old age? Chemo Brain? I was diagnosed with non-Hodgkin's lymphoma (poorly differentiated lymphocytic lymphoma in the mediastinum) on 28 July 1983. I started with chemotherapy. I had no real idea of the extent of my NHL, but the doctors seemed confident that they could cure me. I believed them. I trusted them. They were the experts. I believe that this attitude, that it was all for the short term, stood me in good stead. 'The treatment was six courses, the first starting on 17 August 1983 and the last in November of that year. By the end of this time, I was in remission and feeling better, but what a shock the preceding months had been! Everyone reacts differently to chemotherapy, from those who almost take it in their stride, getting treatment in outpatients and going home to feel a bit sick overnight, through the moderate who get quite sick, to the extreme. Me, I got my first course on a Thursday and woke up again very, very groggy on the Saturday. In between, I had been oblivious to the goings on in the ward and missed the ward rounds. The only sign of life for two days was the urgent reach for a basin and the violent retching. Throughout all my treatment, I took chemo so badly; I was never able to take it as an outpatient, like many of my peers. I could not have made it home. Many times, I had to call for a basin as the chemo was infused. 'The next few months became a rollercoaster of chemo, steroids, bursts of energy and fatigue. The steroids made me bloated, eat like a horse and energetic. Coming off steroids, I was drained. I spent many days lying on the sofa. I had no strength even to go to the front door. I became completely dependent. My son was only four, so thankfully was not aware of what was going on. My wife gained a strength she did not know she was capable of. She had to take complete responsibility for everything that had to be done, as well as travelling on two buses each day to visit me when I was in hospital. I no longer had the inclination to worry about bills or shopping. My wife had to take over looking after the family finances. I didn't have the concentration required to look after it. Anyway, I was no longer able to hold the pen to sign cheques - one of the side effects of the jungle juice. The feeling going from my finger tips. The pain in the joints. Treatment-induced mood swings and no hair. Thankfully, now all distant memories, many of them only recalled when I talk to current patients. 'I had a lot of pain during my chemo. Due to the growth in my chest, other organs became displaced. With the reduction in the tumour, these organs began to push back into place. Boy, did that hurt! After the third course of chemo, I felt like... Well you know what. I'd had three months of sickness, pain, loss of hair and loss of feeling, and my taste buds weren't what they used to be. Then two young doctors called me into their office to show me the before and after X-rays. The large orange was now the size of a small golf ball. They were so happy for me. I'm afraid that I didn't share their enthusiasm. If it was working so well, why did I feel so bad? We've all heard of doctors taking the Hippocratic oath. Well, here's what he said in about 400 BC: "For extreme illnesses, extreme remedies are most fitting". They seem to swear by that one too. 'I finished the year and finished my treatment. The check-ups went from once a week to once a month and, in the spring, I went back to work (keen, wasn't I?). At this stage, I wanted to get back quickly - I suppose I still didn't realise the full extent of what I had been through. I also had to prove to myself, and to others, that I was still normal. That I could still do it. I also felt an obligation to my employers. They had been very good and supportive to me when I was ill, and I didn't want to abuse this. I wanted to get back to work as soon as possible. 'Since my chemo had stopped, I was getting stronger, but there was still a fear and uncertainty about every ache and pain, sniffle and cough. My wife still worried about this for many years. I would often visit the hospital for, or between, appointments, worried about the latest, normal, minor infection. You start to become your own worst expert. I remember on one occasion going for my check-up, convinced that I had relapsed. The routine was to arrive in the morning, get your bloods taken, have your X-rays done and return after lunch to see the doctor in the clinic. I was given my X-rays to bring to the clinic. I looked at the X-rays and could see the shadow I had feared. I was too distraught for lunch and strolled nearby to occupy my mind. I came upon a small church, and sat at the grotto. I cried and said a prayer - not my forté. This was it. It couldn't be beaten again. I'd had my chance. I made my way back to the clinic, where I was reassured that my bloods and X-rays were fine. I just had flu. A little knowledge is a dangerous thing. I remember crying over imagined fears on another occasion. It was shortly before Christmas and I sat in the bedroom on the rocking chair with my son on my knee. He wasn't aware I was crying because I wouldn't see Christmas or see him growing up. Wrong again. 'By June of that year, 1984, I was called back to the hospital because I had flu again. The bloods, X-rays and doctors said differently. I had relapsed. I tried to convince them it was inconclusive, and that a week's course of antibiotics might clear it up. I went back to work to tell them I would be off sick again. I broke down crying. I think they thought they wouldn't see me again. To be honest, I thought they were right. A week later, I started three months of chemotherapy. No hair, no appetite, no energy. Back in remission. Then I had three months of another drug as consolidation chemotherapy. By December, I was free and I was well. Again. 'My consultants were hinting at an autologous (self-to-self) bone marrow transplant (ABMT) - something I knew nothing about. The transplant would use my own marrow. I did not need to get a donor. The theory was that my NHL was so aggressive and I had relapsed so quickly that the chances were I would relapse again and that any such relapse would be more difficult to reverse. All those lumber punctures and myleograms had shown that my bone marrow was OK. It was the rest of me that was screwed up. 'In January 1985, I started 11 treatments of radiotherapy. It helped keep the cancer at bay and, hell, I wasn't doing anything anyway. In February and March, I had sinus problems and had antral washouts. About as pleasant as all the rest of the stuff. Anyone who has had their sinuses done will know that the sound of breaking is not fun. I once went into shock and had to be wheeled back to my bed 20 feet away! Enough said. 'Anyway, this was 1985. No booklets, no support groups, no Internet. St James Hospital in Dublin, Ireland, had got me through the last two years and now thought an ABMT was my best option. They had done about 10 allogeneic transplants but never an autologous. I didn't ask how the 10 had gone. I was offered the option of having the ABMT in the UK, where they had done several. At the end of the day, I had to have faith in the team that had got me this far. I knew them and they knew me. As an auto, my greatest risk was infection while my immune system was wiped out, but they were confident they could control this. On 1 April 1985, I had a bone marrow harvest and, although it was a bit of a pain in the behind, I was running/hobbling around after two days. I had another six weeks of getting used to a normal life again. My eating had returned to normal and I had my hair back again. You know, just when you thought it was safe... 'On 17 May 1985, I started my high-dose chemo and my auto graft was done on 27 May 1985. My twenty-eighth birthday in isolation. I didn't care. I don't think I knew. My response to the chemo was predictable. I spent a lot of time sleeping, not wanting to communicate or watch TV. The food and vitamins were all IV. Towards the end, the constant body inspections, mouthwashes and bowel problems became a drag. Earlier, I hadn't noticed. Against my better judgement, the hospital team wanted me to start eating. Their view was that, if I started to eat, I would get stronger, get better and be able to go home. Mine was that, if I ate, I would get sick. Eventually I could stomach (sorry!) certain foods. Plain stuff - packet mashed potatoes, rice pudding, milk shakes. These were my saviours. 'On 12 June, I got out of isolation. My doctor scared the wits out of my wife. When she arrived to visit, he threw open the door of the isolation unit in mock rage to tell me I must eat more. All she could think was that the door must be closed to keep the germs out! Nowadays autos are not even isolated! The consultant's visit reassured me that the graft had taken and 'now we know how to freeze it'. While not quite true, it shows how close to the forefront we were. I left the isolation unit and walked down the corridor to a little seat outside the door of the ward. My son was sitting there. I hadn't seen him for a few weeks. Children weren't allowed onto the floor. I was bloated, had lost hair and was in my dressing gown. I sat beside him and started to talk to him. He didn't recognise me. 'The next week saw all the bits the doctors were checking go in the right direction and I was discharged, with lots of instructions, on 19 June 1985. And they wanted to see me again soon. Very soon and very often. 'And the rest, as they say, is history. And for anybody recently having done this, yes, the check-ups do get less frequent, the appetite returns, the hair and the feeling in the fingers and toes all return. And, like everything else in life, your memory of the experience fades and your priorities slip back to being about the everyday concerns that everyone else has. By having an auto, I know I had it easier than if I had an allogeneic. No graft-versus-host disease for a start! I have stopped my annual appointments and am on no medication. I can't say I'm back to 'normal', because you can't have had cancer twice and a bone marrow transplant without it affecting your outlook. Life's too short to worry about little things. I try to be more tolerant (although fools are still hard to suffer) and understanding. You just never know what other people are going through in their lives. 'In 1995, I heard a mention on the radio for a 100km walk in Lapland with the funds going to the Bone Marrow for Leukaemia Trust. It came at the right time for me. I wanted to give something back. I started collecting and, with great support, we soon exceeded the required target. I did my 100km walk. If you've never done one, this is a great bonding and humbling experience. You meet wonderful people, most with a story to tell, a reason to be there, a way they have been touched. 'About a year later, I got a letter telling me of the Bone Marrow Transplant Support Group. Bit late now. I didn't feel I needed them any more, but maybe I could help someone else. I am not unique. Many people every year have bone marrow transplants and are doing well, but it is something most people in the street don't come across. It's good to talk. 'I'm now active in the support group and involved with the newsletter and the website and, if nothing else, I try to be there as encouragement to those who are just at the start this road. I have bought the T-shirt.' |
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