The Ipswich Head & Neck Cancer 


Support Group



The Journey Through Cancer Together...

We aim to support Patients, Family, Friends

and anyone who has been affected by
Head and Neck Cancer

 


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My name is Dave Wilkins I was diagnosed with tongue cancer in September 2009


I was diagnosed with tongue cancer in September 2009. Whilst visiting his GP, Dave mentioned in passing that he had a sore throat and was finding it difficult to swallow bread. The GP arranged for Dave to have an endoscopy. This found a growth on the back of his tongue and further investigations confirmed this was cancer. Dave had laser surgery first, which removed 70% of his cancer. He then started a six week course of radiotherapy with a dose of chemotherapy once a week.

Having my radiotherapy mask madeTo make sure I stayed perfectly still during treatment, I had to have a mask made before I started radiotherapy. First, I lay on a treatment table in one of the radiotherapy rooms. A square of plastic mesh about 50 cm by 50 cm was heated up in very hot water and placed over my face, neck, shoulders and the top of my chest. It didn’t burn but it was very hot! As the plastic mesh cooled down it collapsed into the contours of my face. The 3 technicians then pressed it down, making it a perfect fit. As it was mesh I could breathe easily during the process and see through the holes. But as it cooled and began to harden it contracted and pulled on my skin, becoming quite tight. Before the process had started the technicians had asked me if I was claustrophobic. As the mesh hardened around my skin, I could understand why they had asked - it does feel as though it is pressing in on you. The finished mask was then used to ‘fix’ me onto the radiotherapy table to make sure it fitted accurately. So my radiotherapy could be planned.

Radiotherapy treatment
When I went for treatment the radiographers helped me into the mask and fastened it to the table with clips. Occasionally, when setting the mask up, they had to alter its position a couple of times, so that I could breathe comfortably. I had to keep my mouth closed and so it was really important my nostrils were free or it was really uncomfortable. I was always asked what music I wanted to listen to and was happy when there was Jazz on offer. I was reassured that someone was watching me the whole time. I knew I only had to raise my hand if I needed anything. The worst days were those I had the chemotherapy. I had to be at the hospital early and so these days were long and tiring.

Side effects
I had a number of side effects which got worse as the treatment went on. They also continued for a few weeks after it had finished. My throat and mouth became increasingly sore. Although I could eat and felt quite well at the beginning of the treatment, by halfway I needed to use the feeding tube that had been put into my stomach. My wife Pat would use a syringe to give me a food supplement about 7 times a day. I found that Saturdays would be my worst days and I would be unable to do anything. But by Sunday afternoon I would start to feel better only for treatment to start again. I lost a stone and half over the 6 weeks and had trouble with a dry mouth, loss of voice, mouth infections, the skin around the radiotherapy site, heartburn, pins and needles, pain and hair loss - or in my case beard loss. But these were all either managed by medications or got better after I finished the treatment.

Getting back to normal
I finished my radiotherapy on the 10th November and my aim was to be able to eat Christmas dinner, which I did although the food was soft and cut up small. It has taken me a while to recover and I now have less stamina, but my voice has returned, deeper than before and my beard has grown back, less grey than before! My treatment was a success and I am very grateful to my GP and the hospital for acting so promptly. I also received incredible support from a volunteer “survivor” at the hospital at the time of my diagnosis. They had been through the same journey as I was just about to embark upon. I am now on a Macmillan Cancer Support Training Course which has allowed me to commence as a volunteer “survivor”. So I can now help and support fellow sufferers from the moment of diagnosis and throughout their course of treatments.

Dave is now an active member in our support group and volunteers in the Ipswich hospital ENT Clinic to help newly diagnosed patients.

THE MACMILLAN CANCER SUPPORT COURSE

The day I was diagnosed with tongue cancer my wife, daughter and I emerged from the room where we had received the dreaded news from a dedicated team of professionals to be passed onto a volunteer who had survived a similar experience. He was able to advise me and give us the confidence and strength to face up to what was going to be a difficult journey over the following months of treatment and recovery. Along the way I met two other volunteers and between them all they answered most of our questions and problems and helped me and my family immensely.When they suggested I might like to join them I didn’t hesitate because I realised I also wanted to use my cancer experience to hopefully help improve cancer care for some others.However, before I could start to involve myself I was told I had to apply to attend the Macmillan Cancer Support Course, accredited by the Open College Network, which has been developed in order to offer training to people supporting others affected by cancer. My Course is being held at Wymondham near Norwich, and consists of five units which are:
*Effective communication skills
*Introduction to counselling skills
*Working with loss and bereavement
*Cancer awareness
*Health and wellbeing
We are asked to attend four days teaching for each unit which are delivered at two days per month and to submit an online portfolio and learning journal at the end of each unit. We are each required to identify a Mentor and Amanda Ford kindly agreed to accept this position on top of her already near impossible work schedule. So my grateful thanks Amanda!I discovered that learners (I am one of 14) receive a lot of support and encouragement from their trainers and the Course co-ordinator and motivation and enthusiasm has been high throughout. The other learners are nurses, counsellors from other hospitals and hospice care workers so there is a good mix of professionals and volunteers to share the learning experience.I am now 60% through the Course and as I have progressed through the Units I have discovered strengths and developed useful skills that have helped me gain confidence in my abilities and responsibilities and has already changed the way I think about and approach things so I have had to be prepared to examine and reflect on my own beliefs and how it can affect the way I react with people. I quickly appreciated that one of the most important skills to acquire is the ability to really listen to the client and how to respond and the different methods of communication with the advantages and disadvantages of good and poor communication.I must say that I have found the Course to date invaluable because I have consciously tried hard to utilise the skills I have been taught each time I have been requested to talk to and help a cancer patient on those Wednesdays since I started volunteering duties in the Head & Neck Clinic at the hospital. I just hope these chats have been as useful to them as mine were to me when I was first diagnosed with cancer and also throughout and following my treatment. Now that would be a most rewarding and satisfying outcome.