ILT's story

ILT had cancer of the tongue some thirty years ago. This is his story.

My personal account of the events and experiences regarding my medical history and its treatment can best be described in three parts:

  1. The initial trouble A malignant rodent ulcer on my tongue

  2. The treatment Radiation. Deep x-ray

  3. The aftermath The lengthy surgery and dental treatment required and received up to the present time

1. The initial trouble

The initial trouble was an ulcer on my tongue some thirty years ago. I thought at the time it would clear up, but after using mouthwashes and various detergents it did not. It soon became necessary to see my GP, Dr Whammond and later his partners Dr Forsyth and Dr Belsey, who very quickly referred me to a consultant at the then Victoria Hospital in Keighley.

An appointment was made for me to be seen the next day privately. This happened to be a Saturday, and I remember that after he examined me the consultant immediately phoned a specialist at Cookridge Hospital in Leeds, who arranged to see me at Victoria Hospital on the following Monday. This duly took place, and after further examinations by the specialist, Dr Worthy, and Dr Berry; it was decided that immediate treatment at Cookridge Hospital was necessary. It was arranged to start the following Wednesday. On the Tuesday Dr Worthy took a piece of my tongue for analysis (a biopsy). The ulcer tissue proved to be malignant. I recall the biopsy was a very painful procedure. I was then measured up for positioning on the deep x-ray apparatus. This was essential so the beam could be targeted in exactly the right position on each of the ensuing treatments.

2. The treatment

I was told this would be given over a period of 3 weeks. One week of treatment, one week of rest and a final week of treatment. I was also told as the treatment progressed I would become gradually physically worse and that I would lose some facial hair where the x-rays penetrated. They were right, for towards the end of the treatment, which was completed without a break, I was in a very sorry state. My moustache, which I had worn from my teens, had disappeared (and incidentally has never grown back) and my mouth became increasingly sore. I must mention at this point that shortly after the treatment started, Dr Worthy decided that a tooth in my bottom jaw was impeding the treatment and would have to be removed. So an appointment was made for me at BRI on the Saturday morning to have this done. I recall that what should have been a fairly straightforward extraction proved to be a rather difficult encounter. In effect, after two or three attempts and one or two breakages, it was thought to be complete. I mention this because after the radiation therapy this was where the aftermath started. As I said previously, after the treatment I was in a very sorry state. My mouth was very badly burnt, as I recall to the extent that when I closed my mouth my lips were literally sealing together. Eating and drinking were almost impossible for the next ten days or so and my life was a virtual nightmare. I was kept under observation for the next few weeks and eventually things settled down and life became more tolerable, after about six months I was given the good news that the treatment on my tongue had been successful and the tumour had been cured.

3. The Aftermath

As time went by I became increasingly troubled by a lot of pain and discomfort in the part of my jaw where the tooth I previously mentioned had been removed. So much so that Dr Worthy referred me to the late Mr Penny at St Luke’s Maxillofacial Unit. Here started what was to be a lengthy investigation and treatment of my lower jaw. Lots of x-rays were taken at regular intervals and it was eventually realised that a radionecrosis (bone death) had started. It was thought at first that this would eventually stop spreading and the surgeon would be able to remove the dead bone and that all would be well. Unfortunately this was not to be and the necrosis kept on spreading, until a decision was made to remove the affected part of my jaw. For this the plastic surgeons, Mr Crockett and Mr Barclay, were called in. They decided to cut away the affected bone and replace it with a bone transplant from my hip. Plans were made and, after much deliberation, a date was fixed for the operation to be done. Details of the operation were explained to me, and I must admit it seemed so complex that I could not comprehend how on earth it could be done. The reality was that it had to be done.

Here started what I think was the most traumatic part of my life. I was admitted to J1 ward at St Luke’s Hospital, which for the next three months or so was my permanent residence. The operation was carried out. The first part was the removal of the dead bone. This resulted in the loss of tissue in that area of my jaw, which needed to be replaced with a transplant flap from my forehead in order to provide a satisfactory location for the ensuing bone transplant. The first transplant was a failure, which was a big disappointment. The second, however, was more successful, and after a period of healing was ready to receive the replacement bone. This was taken from the top of my hip bone, which apparently was a similar shape to the piece, which had been removed. To do this, the surgeons has to make a framework of stainless steel rods and pins which were screwed into my head and what was left of my jaw. This was necessary in order to hold the bone transplant rigidly in place until the rest of my jawbone accepted it. It was not a pretty sight, and for some considerable time I could not move my jaw at all. During this time I had to be fed liquid foods through a tube, I was very grateful at the time to the nurses for the variety of liquid meals they were able to make for me.

Eventually the transplanted bone began to live with the adjacent bone and the supporting metal framework could be removed. I regained movement of my jaws and soon was able to eat more solid foods again. I said earlier I had difficulty comprehending the complexity of the operations. Not surprisingly, I lost count of the number of times I had to visit the operating theatre. One nursing sister told me at one time she thought it was twenty-eight. At that time we were winning, so it seemed worthwhile. It had been explained to me that I would be rather badly scarred particularly on my forehead where the skin flaps were taken from and also that I would be toothless for some time until the transplant had completely healed. It is worth mentioning that one of the oddities of the operation was that part of the second flap used in the transplant was taken from my temple. This had hair follicles growing which continued to grow in my mouth for quite a few years. This created a rather amusing problem because I could not manage to cut the hair, and had to attend the clinic at regular intervals for haircuts inside my mouth. After some time Mr Penny decided it was time to try and make some dentures, at this time Mr Roberts, the maxillofacial technician, and his staff were called in, I must explain here that Mr Roberts is something of an expert when it comes to making artificial limbs and things. His skills were brought to bear. After much trial and error we had a set of dentures that were reasonably serviceable and cosmetically brilliant.

Since then, Dr Joshi has joined the department and has made me another set. I have had some success with chewing food, but still have a lot of difficulty in swallowing food with my dentures in place. So, I usually take them out at meal times. Over the years I have managed to enjoy food and learnt to compensate for my reduced chewing ability with a knife and fork and by choosing softer food to eat.

Recently I have experienced difficulty with drinking as I find myself dribbling from the corner of my mouth. This can be a bit embarrassing, mainly to myself. A few weeks ago at Dr Joshi’s suggestion, I went with Mr Carroll to see Mr Foo at BRI head and neck clinic to see if he thought anything could be done surgically to improve this. However, it was decided that, owing to the heavy radiation I had undergone in the past, it would not be prudent to try plastic surgery at this time.

To conclude: at the end of the day, and by and large, I consider myself extremely lucky to be writing this and enjoying my good health as I approach my 78th birthday.

Best wishes.

ILT

18 October 1999