We have to go back thirty years. Some time early in the summer of 1981 I was staying with friends in Dorset and we went swimming at a beach just along the coast from Winfrith Nuclear Power Station. I probably swam for about an hour and a bit. I still remember being a dolphin, doing countless handstands in the water, coming out a hundred percent water-logged.
By September 1981 I had booked a doctor’s appointment for a sharp pain deep in my right shoulder, but cancelled it at the last minute as the discomfort had stopped. An x-ray then could have saved much damage.
I did my O-levels that autumn term. By early January 1982 I had a persistent cough. All night every night. The doctor had prescribed a couple of courses of antibiotics. I suffered from breathlessness with painful lower ribs. I had difficulty touching my toes in PE when everyone else seemed to be flexible and bouncy around me. I wore woolly tights under my jeans yet they were still falling off me. I had not had a period for a few months. Did I care or really notice? No, because I was crazily fixated on cycling ten miles out to Hildersham to ride a gorgeous strawberry roan pony and did not want anyone to stop me. Never mind that I would stop regularly at the top of the Gog MaGogs to cough up blood. I was fifteen, nearly sixteen.
I remember the PE teacher at school telling me angrily to stop coughing during assembly. Eventually I could not breathe properly and was forced to bed. My GP was on holiday. Another rather decrepit doctor came to the house and wrote out prescriptions for more antibiotics. Two weeks later, on the 23rd February, my GP came back, took one look the toxic state of me and called an ambulance.
In Addenbrooke’s Hospital they drained my lungs which were three quarters full of fluid. I remember having a tube inserted between two ribs in my side and laughing incredulously at the horrendous greeney pus pouring from it into a bucket. It did at least lessen the discomfort and I almost enjoyed the experience as I had a bit of a crush on the young doctor doing the job.
The notes say ‘One litre of pleural fluid was withdrawn 12 hours following admission and this contained large numbers of eosinophils and lymphocytes, some of which had lymphoblastoid appearances and binucleated and multinucleated cells characteristic of the serosal cells of the pleura.’
After a week of X-rays, CT scans, mentionings of Pleurisy and Pneumonia they diagnosed a centrocytic, centroblastic Non-Hodgkins Lymphoma. They did a biopsy at Papworth on March 2nd 1982 of my anterior mediastinal area (the chest) and : ‘a large tumour was exposed, part of which surrounded the internal mammary artery which bled sufficiently to warrent a transfusion of 2 units of blood.’ It was so entrenched they could not take much out. The best bet was to try to kill it with chemo and radio.
I have all the notes, awkwardly typed and tippexed in the style of the time. The scariest part says: ‘it is not certain whether the presence of pleural effusion containing a large number of lymphocytes makes it absolutely certain that the pleura are involved in the disease process. If this is so, the patient has Stage 1Vb of the disease and the prognosis is rather poor.’
Take note, my kiddies! You so easily could not have made it into this world.
The following paragraph says ‘The patient and parents have been told one diagnosis although a more detailed analysis of the possible prognosis has been given to the parents alone.’ Eek. I did notice people were being a bit odd around me. Rather too nice and spoiling me. But no one ever told me it could have been that bad.
After three weeks in hospital, I went home. My mother nursed me tirelessly. She has always understood ill people. I will tell you a story about my Mum. She spent three weeks in hospital with Scarlet Fever when she was three. The first day she came home, the whole family ate lunch around the table, and then she was sent up to bed. Nobody went up with her. She remembers going up on her own to the cold bed. She was three.
I look back and see what she did for me as a true labour of love. She would cycle into town first thing to buy fresh food. Unfailingly upbeat and energetic, she would bring me porridge, fishy on a little dishy, small portions of vegetables, plain and simple. She brought me fresh pyjamas and sheets, warm flannels, water, lavender bags, books. Never in a bad mood, she calmly and determinedly with all these things transferred her strength to me. The good old-fashioned approach, even for then. But I know it made all the difference. Leaning on her, I could soon manage laughably slow, very short walks of about twenty yards along the river. Each step took us about seven seconds. Then we would stop to breathe.
My mother has obviously always thought Mother’s Day is a pile of commercial crap, who doesn’t, but hey Mumaloo, Happy Mother’s Day!
(The name Mumaloo comes from a postcard that my Dad sent home from far-off climes, when I was about four, that said
‘Mumaloo oh Mumaloo,
Guess what Dadda’s gonna do?
Sail away across the sea
And be back in time for Sunday Tea.’
He always was well good at poems, my Dad!)
My strength increased. I remember the felt-tip pen markings on my chest for each radio session. I can recall the intelligent kindly eyes of Dr Rees as he pointed out murky shadows and dark streaks on X-rays. I can still feel skinny shaking fingers of nervous medical students on stomach and glands and breasts.The Vincristine caused intense crippling pain in my head as soon as I raised it off the pillow. I spent several weeks head down but played the flute in that position and read a lot. Tentatively back at school part time, I remember bursting into exhausted tears during registration one morning, and my kind teacher rushing out for a pot of tea. A ‘friend’ said ‘Is it true you’re losing your hair?’ stroked my head, and went ‘UGH!‘
I visited the Haematology clinic for two years, every Thursday morning . We felt freakily lucky to be in Cambridge with the best specialists in the field. There were people coming to this sought-after clinic from Yorkshire, whilst I just had to buzz up the road on my new moped! I can still see now the waiting room, the poor grey-faced peeps. The way seriously ill people move, conserving energy, the weakness. The way the relatives curve themselves round their loved ones, trying to take their pain from them. The patience with which these people wait. I heard the quiet sighs of frustration, but I never once saw a patient get stroppy or demanding to be seen. We all felt grateful to have such clever people affording us the fruits of their arduous training. We would await our turn.
My mum came across some articles about clusters of Non-Hodgkins Lymphoma and Acute Lymphoblastic Leukaemia in young people who had swum near Winfrith power station. Similar clusters were being found up in Cumbria around Sellafield. We kept looking into that, and I still believe nuclear contamination caused my illness.
The irony of it all now? That the cure then has been the cause now. My new cancer is in the same place as the radiation I had then. But I had thirty good years. I’m not complaining.