DA's story

Message board member

DA had cancer of the tongue. This is his story. He mentions some favourite foods, which seems to work well with dry mouth problems.  

CAT GOT YOUR TONGUE DEREK? NO, CANCER DID!

Here I was an early retiree from the printing industry. I was 64 years old with time to enjoy lots of golf and travel, and lived with a beautiful sparky woman called Susan. Yes, I also enjoyed a drink and smoked cigars.

All of a sudden in 2001 life changed for me when little things started to happen which I paid no real attention to. My throat became sore, swallowing a little difficult, and my speaking changed. I had been diagnosed with high blood pressure and had medication, which had caused some side effects. So I assumed that this was the root cause of my new problems. I read the leaflets with the tablets and apparently they could cause similar symptoms to those I now experienced.

In April, on holiday in Arizona and Nevada I struggled with the food, coughed a lot when eating, and started losing weight. What should have been a wonderful time became stressful. On returning home I went to the doctors after finding a lump at the back of my tongue. I was advised to visit my dentist who took out a decayed tooth adjacent to the area and found this to have created an ulcer. Since my dentures too were no longer fitting properly, these were relined to help me eat a little easier.

However as this did not ease the symptoms my GP arranged for me to visit the Oral Surgery Department at Halifax Royal Infirmary. Here, I had a biopsy and a scan following which an immediate appointment arranged for 17th July with Mr Worrall at St Luke’s Hospital, Bradford.

Dr Worrall gave me the news that I had cancer of the tongue and that from a surgery point of view he would have to take drastic action (shades of John Diamond). The alternative presented was to undergo a combination of chemotherapy and radiography at Cookridge under the care of Dr Coyle. I saw her on the 25th July and I was told in no uncertain terms that the treatment would not be easy. Taking the two options available, this second option seemed to afford me a chance to continue to be able to speak, eat, in a near normal fashion, I agreed to this course of action although nervous of what was to come.

So I had a week of chemo starting the 8th August, and started the radiotherapy on the 22nd August, for 5 days a week for 7 weeks, and with a further day of chemotherapy in the middle of this. When the treatment began I was nervous but the staff were all marvellous and reassuring, the chemotherapy didn’t cause too many upsets to my system although the steroids given at the end of the course made me very aggressive for a few days! Then after fitting for the mask, I started the radiotherapy. This was going to be the most difficult part of the treatment and I was told to expect weeping skin with difficulty with eating from a very sore throat. I was told to find ways of eating high fat foods in order to maintain weight throughout the treatment as loss of weight particularly around the face could have affected the mask fit that in turn could have meant displacement of the beams to the area to be treated. Hospitalisation towards the end was also a possibility.With all these factors pressing in, I decided that I would try to be positive and survive the treatment with the minimum effect or damage. My advice for those about to have the treatment: apply the cream, wash face and neck in treated areas with care as instructed.

Another thing I did was to drink chilled water after every treatment in the belief that this might take the heat away from the tissues inside my mouth and throat. (There is probably no scientific reason for this to work but I felt that it might!) Every time I was under the machine I asked that "it" make me better, silly I know talking to an inanimate object but who cares! I am proud to say that I managed to avoid the dreaded neck dressing and managed to maintain my weight even though my partner Sue was driven berserk in finding foods which I could swallow, having to provide in real terms ‘his’ and ‘her’ foods at every mealtime. I understand that the treatment does not appear to suit everyone, but I ask that if you have to undergo it embrace it, not fight it or fear it.

So now, here I am in December 2002: still alive thanks to everyone. I married Sue in a wonderful 2001 Xmas wedding surrounded by friends and family and have had new teeth provided by Dr Joshi with an inbuilt smile.

I have been left with a permanent dry mouth and some damage to my tongue structure, which affects my speech, a little. To reduce the dry mouth effect, I use an artificial saliva spray. Recently I have found a chewing gum called Biotene that is wonderful for creating a moist mouth with a longer lasting effect. I also apply fresh pineapple from time to time to cleanse my tongue and have bought a tongue scraper for this purpose also.

Eating has its moments, as swallowing can be difficult dependant on food. But I now have a very varied menu with great success, the secret is lots of gravy (in my case onion based) and sauces on meats, fish etc. Throughout my treatment I always started the day with Porridge with Honey and Raisins; this I continue to enjoy. Potatoes can be difficult to eat, and chips can be very dry to taste. However, we have found alternatives: Aubergine or Courgette chips, cut to shape and coat with flour then fry till golden, these are beautiful and moist to eat. Wholesome soups are also on my list for lunchtimes and Avocado with garlic and olive oil dressings also go down a treat. Tiramisu for a dessert hits the spot.

My main wish throughout has been that I would still have the ability to talk, socialise and enjoy my time with Sue playing golf and travelling. Through the science and the skill of all my specialists and carers, I have all that and I thank them for all they have done for me.

Derek A