Providing information and support for head and neck cancer patients, their carers, relatives and friends.
THE NATIONAL HEAD & NECK CANCER SUPPORT GROUP
In November 2005 I had an infected wisdom tooth removed. For some months all was well, but after about nine months the socket became sore, and wouldn't completely heal. I went back to the dentist and she referred me to the John Radcliffe Hospital, Oxford, Oral and Maxillofacial Department for investigation. I also had a recurring ulcer. After further investigation and a biopsy, a squamous cell carcinoma was diagnosed in my lower left jaw.
My consultant was extremely positive, and told me he would cure me. Although obviously very shocked and frightened, I chose to believe this, and put myself in his very capable hands. The whole ‘Max Fax’ team were encouraging and optimistic and I was kept informed every step of the way. I was told I would need surgery, and maybe radiotherapy, but this was not certain.
I had a four week wait before surgery, during which I had MRI and CT scans, in order to determine whether the cancer had spread. It hadn’t, I was very fortunate. I then attended a MDT (multi-disciplinary team) meeting, and a pre-operative assessment.
During the MDT meeting, which as the name suggests, comprised, a surgeon, CNS (clinical nurse specialist, Macmillan), specialist registrar, speech therapist, orthodontist, dietician, occupational therapist and a few others, my treatment, surgery, and aftercare were explained in detail. Any questions I had were answered honestly, and I never felt under any time pressure. The whole meeting must have taken two hours, and I felt that anything I asked, however small, was given consideration and thought. I was also able to telephone the Macmillan nurse after this meeting at any time for any worries I may have had (quite a few of those!)
Surgery took place a week later, and lasted about 8 hours. I spent 2 days in ITU before being transferred to a ward. I had a bone graft from my left hip and a tissue graft to repair my jaw after the removal of the tumour, and artery and vein were taken from my left arm to create a blood supply in my mouth and neck. My jaw was then strengthened with metal plates and screws. The tissue graft was taken from my left arm using a radial free flap, and was covered with a plaster cast which was removed after eight days. I also had a skin graft from my left thigh. A gastric tube called a PEG (Percutaneous Endoscopic Gastrostomy) was inserted into my stomach through which I was fed and medicated.
The first few days on the ward were quite difficult as I tried to come to terms with all that had happened. I could only move my right arm and right leg when I first woke up, and had to have therapy to start walking again as the bone had been taken from my hip. This happened quite quickly, but was painful for some months.
I was able to return home after ten days, but, unfortunately had to return to hospital four days later for further surgery as I had an infection in my neck and mouth. This took some time to heal, and I was not allowed to eat for a further eight weeks until the infection had fully healed. Eating was very difficult, I had to learn to swallow again, and liquidised food was the order of the day. Very gradually this improved, but took a great deal of patience and perseverance (not my strongest qualities!). I am now able to eat most foods, but am slower than I used to be and eating in public is not always easy.
Although I felt I had recovered well, my emotional recovery was substantially improved by joining HEADS2GETHER. Meeting people who had been through the same thing and had similar problems to overcome was a milestone.
I first heard about Heads2gether from another member while in hospital. At that time it was a very new organisation. There is usually a mixture of people at our get-togethers, some are newly diagnosed while others may be post treatment. Of course, partners and friends are always welcome.
People are often referred to the group by the Macmillan nurses in Oxford and Reading. Sometimes a patient hears about us when they pick up one of our leaflets or see one of our posters.
Head, neck and mouth cancer is comparatively rare, it is not easy to find someone else with whom to talk and discuss treatment, and, very importantly, life after treatment. Heads2gether enables people with this common bond to come together and not to feel isolated. In the three and a half years since joining Heads2gether, I have met people who are now firm friends, and it is a big part of my life.
I am on the committee as Social Secretary and organise events throughout the year.