It's two weeks today since my diagnosis. Yesterday we went back to see the consultants and get the results of the investigations that had been done over the last fortnight. It was not as dreadful as it could have been although we would have been better reassured if they had at least looked at the chest x-ray.
There were two doctors there at first and they each outlined their treatment option. First the cutter. He could cut open my cheek have first measured up my jaw for a stainless steel plate. (They were going to 'break' my jaw to ease access and then screw it together again.) After that the surgeon would remove the tumour and surrounding tissue, graft on some skin from the inside of my wrist, graft some skin from my abdomen onto the wrist, sew everything back up together and bob's your uncle .... I was told that the pain would be controlled by strong analgesics for a few days after which domestic painkillers would suffice, I will be fed by a tube into my stomach and would start to eat for myself only 3 or 4 days in, the scars would not be evident and the risks of droopy lip and stuck tight closed mouth were easily exaggerated. It didn't sound too bad!!
The ray-gun man then outlined his approach. They will take out any questionable teeth right round to the upper and lower incisors. After that they zap me, every day and sometimes twice a day except weekends. Everything is fine for the first week or two - then things start getting unpleasant. The mouth begins to get ulcerated, the cheek feels sunburnt, the mouth dries up, the tongue gets swollen, the place where the lips meet dries and cracks, the beard stops growing on one side of the face, hair drops out at the nape of the neck where the rays emerge and more and more and still 3 weeks of torture to go. I could see me lying in bed in the morning with a mouth that felt as though it had been filled with boiling tar, not wanting to drive down to Cheltenham for yet another dose. I found it hard to imagine that anyone would choose this option if there was a choice. The ray-zapping causes such damage to the jaw-bone and soft tissues that future injuries will heal only very slowly if at all - hence the prior removal of teeth and the ban on boxing for the future. I really don't think I want to tackle this!
I asked about 'alternative therapies' and drew a gallery of blank, somewhat disapproving faces at the suggestions of hydrogen peroxide therapy, treatment with urea or shark cartilidge, ultra huge doses of vitamins and other dietary variations. Then I mentioned light therapy. This drew a more approving response - "We don't do that here!" Not too helpful you might think, I certainly did - but they did give me the contact details of a consultant at University College Hospital - London. Now you might not believe in omens or fate or destiny or anything like that but I could not but fail to be heartened by the fact that I was born in UCHL. They managed to get that bit of my life right so maybe there's hope now as well. I got in touch and by the miracles of fax, alumni, badgering, answer phones and hot pursuit I managed to get an appointment next Wednesday afternoon (18th July). The doctor is the head of the National Medical Laser Institute but is also an oral surgeon so hopefully I'll get clear, unbiased advice about the pros and cons of each treatment. The Photo-dynamic therapy sounds as though it could be helpful. They inject me with a light sensitive dye that attaches to cancerous cells only. Once it's had time to circulate they blast the affected area with high intensity light. The dye then gives up an oxygen atom which goes on to kill the cancerous cells. Healthy tissue is not effected and there is only one treatment. Downsides - the cheek will feel burnt for a while and I will remain photo-sensitive for about 6 weeks which means I will have to avoid bright lights, sunshine and so on. Another problem is that the light can only penetrate about a quarter of an inch so if the tumour is too deep the treatment will not be appropriate. At the least I hope to get unbiased advice about which type of treatment is more appropriate.
After that - back to Worcester Royal Infirmary on Tuesday 24th for a final decision if it hasn't been taken already. So, more waiting, a second opinion, an alternative treatment which, if appropriate might be less traumatic and invasive than anything else on offer and a good few weeks of unpleasantness to look forward to. And plenty of hope.
If you're in a similar position to me - good luck.
Ron
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