Peter's story

For me it all started in June 2003 when I noticed a small lump in my neck while shaving, it was clearly swollen glands. I thought nothing of it and assumed it would go away. After a couple of weeks with no change (no other symptoms) my wife insisted that I went to the doctors. A week later (earliest appointment available) I saw a young new doctor, who had a look and instantly decided to refer me to my local hospital – Broglais, Aberystwyth.

Shortly afterwards we went on a pre planned holiday, on our return my appointment was waiting for me – another 2 weeks wait. I saw a Mr Mamood who is usually based at Carmarthen but has a surgery at Bronglais. He felt my neck and drew some fluid from one of the lumps. He then inserted a fibre optic camera up my nose (after so many times this is now routine to me) to take a look at my throat. He wasn’t pleased with what he saw, he told me “something is there and we need to take a closer look”. At this point I instinctively knew that things were about to get serious. He telephoned his secretary at Carmarthen and I was booked in for the following Monday “for a biopsy”!! Now my wife was waiting for me in reception and I had to try to put a brave face on it, I didn’t succeed. I knew what was coming and couldn’t handle it – no time to get used to the idea. We got home and the phone never stopped ringing, all the family wanting to know how it went and then not knowing how to react.

So off I went to Carmarthen for a 2 day stay (2 hours drive from my home) and I still didn’t know what to expect. The staff were all really good and Mr Mamood explained what was going to happen. Basically there was something on the very base of my tongue and he wanted to take a bit for analysis. None of this seemed particularly bad and I was home in 2 days as expected. Shortly after this I had a call from the hospital asking me to go in for another couple of days for some more tests. They did the lot, CT, MRI, camera down the throat into the stomach etc. I had the latter many years previously and wasn’t looking forward to a re-run!

While is hospital this time, Mr Mamood came to see me just before I was discharged. He confirmed that I had a malignant tumour on the base of my tongue. He also told me that because of its location the only possible treatment was a major dose of Radiotherapy followed by surgery to remove the infected glands in my neck as these were seen as a secondary infection. The implication was that if this treatment didn’t work then I might lose my tongue. I should say at this point that at 49 years old the prospect of any of this did not appeal to me. I have lost count of the number of times I have been asked if I am a smoker or heavy drinker. I have never smoked and only drink in moderation.

Now while all this was going on we had our house on the market (Mid-Wales), we had accepted an offer and were hoping to move to Spain. Of course, all this went out the window. We did decide to go through with the sale of the house. We purchased a smaller property in Shropshire. This meant that I was transferred to The Royal Shrewsbury Hospital and had my first consultation while we were still living in Wales. The whole approach here was totally different, my wife stayed with me during every consultation and we were seen by a group of consultants including Mr Thompson, Mr Smith and Mr Srihari, plus many others including Catherine the Macmillan nurse. Apologies to those whose names I cannot remember. The first thing they wanted to do was have me in for another biopsy so they could see for themselves! So, another stay in hospital and all that goes with it. They had me in the following week and then it was just another anxious wait for the results.

They confirmed the first diagnosis but they wanted to adopt a totally different approach. Mr Smith & Mr Thompson wanted to use laser surgery to remove my tumour and then remove the glands on the right side of my neck. They would give me about 6 weeks to recover and then I would have Chemotherapy followed by Radiotherapy. They explained that the laser surgery was still relatively new in this respect but assured me that it held out the best prospects for me. The only problem was that they didn’t have the required equipment at the hospital and needed to hire it in. In the meantime I was to have a ”peg” fitted to help with any feeding problems later on. A couple of weeks later I was in for my operation(s). All prepared and ready to go down to the theatre only to be sent home because the equipment hadn’t arrived. The doctors were very apologetic – not that it was their fault. So another wait while the equipment was organised again. They were very good and kept me informed all the way. I had a call about 3 weeks after the first cancellation asking me to go in to see them. Because of the problems getting hold of the equipment they had asked a consultant (Mr Pracy) at the Q.E. in Birmingham if he would take me on as his patient - the Q.E. already has the required equipment. He agreed, and so it was another short stay at the Q.E. for another biopsy – at this rate none would be left to operate on! At this point things get a bit confusing because Mr Pracy agreed that the laser operation was the best way forward but some days later he rang me and told me that the “group meeting” had decided that the best thing was to remove the tumour surgically through the side of my neck. They would then attach a flap to the base of my tongue made from flesh removed from my wrist. He said that the Royal Shrewsbury Hospital had the facilities do this so I would be transferred back to them! Some days later I was called in to see Mr Smith & Mr Thomson again at Shrewsbury, they were still convinced that the laser surgery was the best for me. I decide that they were right and so it was back to waiting for the equipment to be obtained.

It was towards the end of October (2003) when I finally got the call to go in for my op. I think I was in the theatre for about 6 or 7 hours, they did my tongue and then the re-section on my neck. The laser thingy is inserted through the mouth and caused a little damage to some of my teeth. They decided that I wouldn’t need a Tracky, so that was one bit of good news. They told me they had removed a piece about the size of a golf ball from the base of my tongue and that 1 of the glands remove from my neck was a grade 3 tumour. Everyone was really amazed at the speed of my recovery from the operation, I could still speak and eat and drink a little and thought that it would be all plain sailing from then on, I was very mistaken!

My Chemotherapy and Radiotherapy started towards the end of November. I was to have 3 sessions of Chemo as an in-patient and 33 doses of Radiotherapy. The making and wearing of the mask wasn’t something I enjoyed. These 2 treatments really took it out of me especially towards the end, as, due to the Christmas break on some days I had 2 sessions of Radiotherapy. This was just about the lowest point in whole episode and it was far worse than I expected. Treatment finally finished early in January his year, all I had to do now was recover. My “peg” was being used to its full potential with many cartons of Ensure going down it daily. The following 2 or 3 months are a bit of a blur really, only punctuated by regular visits to see my consultants – camera up the nose again!

So now, just a year since my operation and 10 months since my Radiotherapy ended I suppose I am recovering well. My Peg was removed about 3 months ago and I’m about 18 lbs lighter than before all this started, I really need to put on a little more weight. I rarely have Ensure now and am eating quite well. I still have little taste and my mouth is still very dry but my biggest problem at the moment is being unable to open my mouth very wide. They tell me its due to the Radiotherapy. I’ve had physio on it with little improvement. I still have all my teeth but they don’t look to good and my gums have receded, also due to he Radiotherapy.

My checkups are now down to every 8 weeks and will continue like this for another year. Every time I go it’s the camera up the nose again. The Consultants say it all looks like brand new! I suppose I should count myself as being lucky but that doesn’t seem quite the right thing to say. I don’t suppose things will ever be the way they were but you just have to get on and make the best of things as they are. Through all of this the hospital and staff at Shrewsbury have been superb but I can’t help thinking that things could have turned out very different if I was treated in Wales. I have to thank my wife for putting up with me, I’m sure that at times I have been lees than pleasant to live with!

Regards, Peter