Rachael lives in Mid Wales with her husband, Alex, and their children Freya, Torin and Finn. She was diagnosed with cancer in her tonsils and neck in 2003, at the age of 33.
From the moment you hear you have cancer, things are never quite the same. Cancer becomes your life for a while; it occupies your thoughts and your life revolves around treatment. You may never forget it completely, but it does recede and life does return to normal, impossible as it seems at the time.
Whilst the news was obviously a shock, in a strange way I found it easy to accept because something could be done, they had plans for treatment by the time they told me. I am sure everyone reacts and copes differently, but I was determined I would get through it and would have undergone anything necessary. I had a wedding planned for ten weeks later anyhow, and didn’t want to cancel that if it could be helped!
The details of the operation discussed that day in the office were fairly graphic, but for me, I wanted to know everything. I was lucky to have consultants and nurses who were prepared to spend the time going through the details and would answer questions patiently, again and again as I forgot.
The treatment began and I handed over my body for the first sets of needles and tests. The ‘big’ operation was scheduled for two weeks later.
I remember waking up quite early the morning after the operation in ITU, thinking ‘ well it’s done now; from now on it gets better’. Initially, my mouth felt like it had been smashed up with a sledgehammer and roughly reconstructed. It didn’t hurt, but my tongue must have been so swollen, it couldn’t make sense of the inside of my mouth. There was always a chance that the graft in the mouth wouldn’t take, and the procedure would have to be repeated with the other arm. I was always very relieved those early days when the ultra sound device picked up the pulse of the artery, meaning it had been a success. I didn’t fancy starting from scratch again if I could help it.
There was, on the whole, no real pain, only discomfort. The nurse talked me through everything as he gradually took me off the ventilator and removed needles and tubes from my hands and arms – unpleasant, but quickly over. It was difficult not being able to talk back because of the tracheotomy. Things obviously didn’t feel normal, but what was normal given the circumstances?
These occasional problems were to last, to some extent, even once I got home. I could endure any amount of pain, but I had to talk myself into not panicking whenever I had difficulty breathing. Initially this was caused by fluid which had built up on my lungs, because of the long time I was under anaesthetic. The tracheotomy tube would feel semi-blocked.
I got used to the feeling of having my lungs ‘hoovered’ with a suction device to remove the fluid, which inevitably led to a coughing reflex. Even this was preferable to the feeling of laboured breathing. But as the days went on, I grew used to this, and to the feelings of tightness round the tracheotomy in my neck, which felt very constricting at times. The effectiveness of the anti-inflammatories and pain killers seemed to gradually diminish, the hours of relief given felt shorter and shorter as time went on, but as I got used to the feeling, it became more normal and easier to accept. Once it was familiar, it was fine.
What were the other inconveniences? They were generally minor. I longed for the few hours a day when I wasn’t attached to the food drip. I was fed 15 hours out of 24, it made it difficult to move around.
When I moved on to ‘real’ food again, even though it was more to see how things were functioning, rather than for nutritional purposes, it felt like a big step forward. My tongue used to swell with each spoonful, and ideally I needed to pick at things gradually over the day in my own time schedule, rather than the set mealtimes.
My return home was begun with a ‘day release scheme’. At first I used to just head down the hospital cafeteria for a drink, then my first heady taste of the outside world was down at the ‘Little Chef’ nearby!! For all I was wanting to get home, the hospital was still a safe place where you didn’t have to think and I was shattered. You become very quickly institutionalised without realising it. I had 2 further days at home, returning to the hospital at night, before leaving completely. It made the transition a lot easier.
The first week passed with no noticeable change, but by the end of the second week, I could sense a difference. The side effects did kick in, no matter I was determined they wouldn’t. But they certainly weren’t unbearable. The third week was the hardest, the end not yet in sight. I began to hate the vague smell I associated with the treatment. The staff were great. I enjoyed the time spent with them, they were very personable and brought light relief to the situation. The final week brought double areas of treatment on my neck and on the final day I had four. The next day was our pre-wedding treasure hunt and party organised by friends locally. I was shattered but so pleased to see friends and colleagues again, many for the first time since the operation. They had gone to so much effort.
The treatment I received has been excellent from day one. There is a whole support network working together for you; the consultants, doctors, cancer nurse specialists, speech therapist, dietician, dental team, physiotherapists, amongst others who follow you up and see you on a regular basis. I appreciated that the consultants had time to see me in person every day whilst in hospital, and their faces became familiar and approachable. All the staff on the ward, including cleaning staff and porters were so friendly and kind, they made a potentially unpleasant time very bearable. Bizarrely, I have many fond memories of my time spent there.
After my treatment, I felt that I wanted to make a small gesture to show thanks for the amazing care I’d received, and hopefully help others get the same help! Some friends and I did a coast to coast bike ride, and it was lovely that the pupils at my school took part in two sponsored walks, raising thousands of pounds to support our local services.