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Roasted, toasted, dosed and boasting - a story of salivary gland cancer.|
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Back in 2000 I lived in Berlin and taught in Wolverhampton. Over the year I'd noticed a sore throat and some difficulty in swallowing, and eventually took it to doctors in both countries.
Eventually I started to feel a lump in my neck, and took it to a Berlin ENT specialist, who ordered an MRI scan, which showed a lump that wasn't cancerous. But it kept getting bigger and the doctor was concerned because he didn't know what it was, so ordered another MRI scan. Same result, doctor puzzled so sent me to hospital to have it out. The day before the operation they came and told me about all the horrors that might happen. Hospital surgeons do that. The told me they might cut the facial nerve, I might lose the power of speech (difficult for me as a tv announcer and university teacher, they might do other damage. They sure laid out the whole of the bad side. I went to sleep thinking of drooling. Woke up after the op, could feel everything was still there, was happy until next morning. Summoned at 0730 to the consulting room of the ENT specialist. I sat there fixating on at sn exploded drawing of a human ear in all its detail as he explained to me that the'd asked the night before for a biopsy, and it confirmed what they's thought: the lump was malignant, and that they would now work out what to do about it. Part of my mind was trying to work out who I knew that had an ear like the one on the wall, whih semed to me to have extra folds in it. The more shocked part of my mind was dealing with having cancer. I never asked, and they never said, what were the chances of survival. I was determined to have whatever treatment there was, and if it didn't work then we'd do the next thing. I made the worst phone call I've ever made to my wife. She went into total support mode, and stayed there. I hated being in hospital. You're not in charge of your life in a hospital. Others are. They decide what you'll eat, what you'll drink, when you'll sleep, and they keep coming round and asking you questions about your weight and when did you last have a bowel movement. I didn't want to be there, I wanted to be home. They had a rule that in-patients had to be in the hospital overnight, which meant I was allowed out in the evening so long as I was back by 9 pm. An hour each way in the subway, an hour at home, but it seemed worth it to me at the time. They were talking of surgery, and maybe radiotherapy and chemotherapy.I figured that couldn't be too bad. Then one evening, just as I had got back to the flat, they called and said I had to return at once. All the way back I was in deep stress - had they found some other horror from the battery of tests they did? Were they just going to say it was incurable, and tell me to go away and withdraw all my long-term investments? What they did say was that they had decided not to operate because they weren't convinced they could get it all, and therefore it wasn't worth taking any of it. Radiotherapy. They make a green nylon mask like a fencer's mask but molded to your face, to hold your head in place under the machine. Your're wedged into position with this mask, and the CLINAC machine delivers its dose according to a detailed and carefully constructed program. I was to have 39 days. This is a lot. For the first five days I thought this was a doddle. Easy-peasy. What's all the fuss? I was staying at home and just going in for the radiation treatment. Sitting on the subway, looking at all the other people that didn't have cancer. Looking at young couples enjoying each other and not having cancer. Looking at old people full of their lives and not having cancer. People in advertisements doing their thing and not having cancer. You could fall into self-pity thinking like that. I fell into determination that i wanted my life back, and to become again a person that didn't have cancer. And I did silly things to suggest I had a life after cancer. I bought our family domain name for ten years. I started looking on the Internet for a retirement property for when I would leave the University and the tv station at the end of 2004. They painted positioning marks on my chest, and told me I wasn't to wash them off, and that I couldn't have a shower, which wasn't fun. Then they told me I had to stay in for a week to do chemotherapy. This involves drip-feeding a substance into the bloodstream that made me feel really sick. Every day for a week, so that on the final day of the week I had to be wheeled in bed down to the basement for radiation treatment, and I'd developed the "patient shuffle" that I'd noticed on other patients - the slow timorous slippered progress through the corridors, pushing my drip-feed before me. I didn't even get up and get dressed that day, just stayed in the green hospital gown all day. just like a sick person. By this time I was being fed thru a PEG - a tube in my belly - and my mouth was so sore I couldn't speak. It got a lot sorer, and there was to be another week of chemotherapy, and more radiation. They agreed I could be an outpatient during radiotherapy, and for the first weeks I rode the subway to and from the hospital. Later I persuaded the insurance to stump up for a cab fare, because I wasn't certain I could avoid vomiting in the subway. Never did, but I certainly felt like it. Finally it was done. I was roasted and toasted, dosed with cisplatin (the chemo of chemotherapy) felt like something nasty you find stuck under the edge of a table at McDonald's, was 25 kg (I think about 60 pounds) thinner, looked like I'd gone to sleep under a sunlamp, walked like an old man and couldn't talk. My wife would come in full of interesting things to talk about and I would suck another ice-cube and tell her 'not now'. Once more into the MRI machine. I gather the new ones are much faster, but I was there with the old 15-minute jobs - lie on your back inside the tube, headphones on but playing the kind of music I usually get up to change, and the machine wheeps and screeps as takes clever images of inside you. Waiting then to see my team leader, Dr Hoecht. With his assistant, Dr Nausener, they'd devised, revised and implemented my treatment plan, and I owe my life to those brilliant and dedicated men and the technicians and nurses that carried out their program. It was Dr Hoecht who one day used the 'cure' word to me, and when I queried it said "We are looking for a durable cure for you". I handed in the MRI scans, and we went out into the hospital grounds, found a pond of squealing frogs and were slightly comforted by all the little froggy lives going on around us. Even the frogs didn't have cancer. Dr Hoecht started out by asking me how I was, and I exaggerated that I was fine, which I wasn't because my mouth hurt like hell, I was dizzy if I stood up fast, I'd never been so tired in my life, I couldn't eat and none of my clothes fit. But yes, I was fine in comparison to the alternative. He said "You should be because there's nothing wrong in any of these scans. That was June 2001. Since then we've had mainly ups and hardly any downs. Regular scans have been clear, apart from the shock of being told I had an enlarged thyroid and had to have ultrasound scans of it. Foolishly I looked in the internet for the description of my thyroid problem, mis-translated the German and became convinced that I was destined for months of treatment with a needle as long as my arm pushed though my neck. But it wasn't like that and the thyroid is fine. Three months after Dr Hoecht said I was in remission we flew out to New Zealand (where I was born) to look at a retirement house. I recall standing on the drive of one place thinking that I had never seen anything so beautiful, but that it was rather isolated and perhaps my wife wouldn't like it, and anyway the bathroom was from hell. She meanwhile was sonedering how to persuade me that it wasn't really too isolated and that I could perhaps come to terms with the bathroom. I retired last year, the medical team did a complete re-staging, and I arrived in New Zealand with a stack of scans to show to the NZ doctors. I've since seen the local consultant and he used the "cure" word in his latest report. And Sandra and I will celebrate our 40th wedding anniversary in August - here in the house we both liked at first sight, now made over and with two new bathrooms! I'm fit, well, laying hardwood floors, running a radio station, enjoying living in the most beautiful place in the world. I still have problems eating and swallowing. Sometimes food goes down, sometimes it doesn't, and I'm now a slow feeder. Sometimes I have lots of taste, sometimes I don't. I have candida albicans in my mouth which is a bugger. Diflucan helps keep it under control. I sometimes get mouth dryness - xerostomia, and I'm hesitant to eat a lot of things I used to like for fear they'll hurt. But hey, I'm still here and have every intention of staying here for years and years to come. However inconvenient the side effects of the treatment - think of the alternative. My treatment was at Benjamin Franklin hospital in Berlin. They are great people that work there. And I did learn a whole lot of medical-technical German... Philip in the Bay of Islands |
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Hello Philip
Thanks for your story. It will be a great encouragment for others to read and know that there is still a life, despite the problems that treatment brings. Best wishes Vinod Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice. "If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally." Lao-Tsu, Tao Teh King |
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The Mouth Cancer Foundation Online Support Group
Mouth Cancer Forums
Members Forums
Introduce Yourself
Roasted, toasted, dosed and boasting - a story of salivary gland cancer.