Providing information and support for head and neck cancer patients, their carers, relatives and friends.
THE NATIONAL HEAD & NECK CANCER SUPPORT GROUP
How it all started
In May 2005 I had a mouth ulcer, not unusual for me, however this one wouldn't heal. My dentist and GP were concerned and referred me to an ENT Consultant. He took a biopsy. I was not duly worried as I had previously been biopsied and the results were negative (cheek biting etc) which is usually the case. This time however it was a malignant tumour, a Squamous Cell Carcinoma on the tongue. Being ignorant of mouth cancer I thought a simple visit to the hospital as a day patient, a scalpel and a painkiller would sort it out. I then met my Consultant and “The Team” consisting of a Plastic Surgeon, Oncologist, Anaesthetist, Dietitian, Speech Therapist and a Macmillan Nurse. I now realised I had a big problem. Subsequently there were X-rays, tests and an MRI scan. I suffer from anxiety attacks so to be placed head first in a metal tunnel for 30 minutes wasn't great. I felt like a kitten in a tumble-drier. The upshot was that I needed surgery to remove the tumour.
Why did this happen to me? The simple truth is that, in common with other patients, the root cause of my mouth cancer is not known. Although heavy smoking and drinking are cited as main causes, it is apparent that these are not necessarily pre-requisites - I am a non-smoker and only a moderate drinker. As to lifestyle, I was a busy self-employed florist, a golfer playing twice a week, a keen gardener and a dog walker. Certainly nothing there to suggest that mouth cancer was a risk. This is why the work of Heads Up - the head and neck cancer research charity www.heads-up.org.uk - is so important.
The long journey of treatment
In September 2005 I was admitted for my surgery. The operation overall took about 13 hours and involved a number of procedures. To gain access to my mouth, my jaw had to be split and to assist breathing due to oral constriction a tracheostomy was applied. The primary tumour was then removed together with a margin of healthy tissue - just to make sure . Lymph nodes between the jaw and collar bone were also removed as these are potential sources of tumour spread. To reconstruct the removed area, tissue and blood vessels were taken from my forearm and muscles taken from my neck. My jaw was repaired with a metal plate and screws.
I was not an attractive sight on awakening with stitches from my lower lip to throat and staples around the throat, tubes from every orifice or so it seemed and a plaster cast heavier than me on my arm. My husband visited every day despite working in London and I was never alone from visits from friends and family who were brave and never hinted how terrible I looked. Day by day a different tube was removed. I was taught to speak pressing on the “Trachy”. I was drip fed and then given a gastric tube to feed myself. Unbelievably after 2 weeks I was able to go home.
My District Nurse came in daily to check on me but after a few weeks, on having a leak in a neck wound examined, it was discovered that I had contracted MRSA. Back to hospital for further surgery and a course of heavy duty antibiotics. After ten days I was allowed home with a PIC line, an intravenous tube which would allow my District Nurse to continue the antibiotics course on a daily basis.
As a follow up to my original operation I was scheduled to have a course of radiotherapy in November but the MRSA treatment delayed this until mid January 2006. For 6 weeks every day I attended hospital. Every day one of my friends, who had formed a rota, turned up to take me to the hospital. It was a round trip of about 45 miles and including time at the hospital took up 4-5 hours of my day. Basically that was all I could do in the day other than sleep and take painkillers.
The pain in my jaw however was still severe and in May an X-rays revealed that the metal plate in my jaw had collapsed with the consequence of a non-union. Back to hospital again for more surgery, this time from the Maxillofacial team who gave me a new metal plate but also took a bone graft from my hip bone to create a new section of jaw bone.
Home I went again with a stitched up face only to have adverse reactions to antibiotics resulting in trips to A and E. I've since had tooth abscesses immediately above the jaw plate which had to be removed in hospital and have had 2 scares where mouth ulcers have appeared and have been removed by laser. This is only day surgery but there is a long, sore recovery where eating ordinary food is not a consideration.
As I write this in December 2009 I am part way through a series of consultations with an orthodontist which should result in me being fitted with a dental plate that will enable me to bite and chew. Until this is completed I can only manage very moist foods such as soup and yogurt but topped up with Ensures, a dietary supplement.
How this has affected my life
Obviously this whole experience has had a huge impact on my life. I have retired from floristry (at least from a business perspective) and now spend more time in the garden and with my German Shepherd, Molly. Whilst I have not quite given up golf I did have a long lay-off and now can only manage the odd nine holes but I have stayed in touch with my golfing friends who have all been very supportive.
One very big plus coming out of this whole experience has been my involvement with Heads2gether which I helped found with other patients and survivors. This has meant that my journey has not been alone and I have gained much support and encouragement from the group. Many of the members are now close friends who are always there for each other. Then of course there are the social events which are just fun, fun, fun.
One thing that I have to say is that I am indebted to the team who saved my life and despite my many hiccups during my recovery, I am extremely grateful for their care.