Patient Stories

Cath's Story

I have always been fit and healthy, exercising regularly - circuit training, swimming, pilates, spinning, eating healthily, a non-smoker and occasionally having a few beers at weekends. At 56, I thought I was in good condition and never considered that I would have cancer.

I had suffered with painful ulcers on my tongue for 30 years but had them checked regularly at UHW Dental Hospital in Cardiff. I was discharged in 2011, but unfortunately did not get the next ulcer checked. A small lump appeared but I still waited a couple of months before making an appointment with my GP, which I now regret. Although the lump had not grown much or caused me any real problems, the cancer had plenty of time to grow before a biopsy was taken.

In November 2012, I was diagnosed with Head and Neck Cancer. I had a tumour on my tongue and in the lymph glands on both sides of my neck. The tumour had spread to the back of my tongue and 80% of my tongue had to be removed along with the lymph glands in my neck. Fortunately, the cancer hadn't reached my voice box. I thought that the replacement flap which was to be fitted would do a similar job to what my tongue had done. I was optimistic that the operation would result in minor changes to my lifestyle until I realised that the flap was fixed and was there to fill the space where my tongue had been. The flap would not move other than a small muscle movement at the back where the remaining 20% of my tongue had been.

"I had a tumour on my tongue and in the lymph glands on both sides of my neck. The tumour had spread to the back of my tongue and 80% of my tongue had to be removed along with the lymph glands in my neck."
That December, I was operated on at the University Hospital of Wales in Heath, Cardiff. All of the cancers were removed but the flap failed because the blood supplying the blood vessels was too weak. A week later that flap was removed and during the following week I had another operation to fit a replacement flap, which thankfully was a success. Skin had been used from my thighs to make the flaps as my arms were too thin so at least I have matching scars from my knees to thighs on both legs!

I'd had a feeding peg fitted a few days before my surgery to help me to get used to cleaning it and sleeping with it. I was fed and hydrated through this peg for three weeks until I was eventually able to sip a glass of water and have a cup of tea (absolute bliss).

In January 2013, I began a course of Chemotherapy (Cisplatin) and Radiotherapy at Velindre Cancer Centre, Whitchurch, Cardiff - one dose of Cisplatin at the start of six weeks of radiotherapy and another dose three weeks into the radiotherapy. I had a total of 30 doses of radiotherapy. Those six weeks and the weeks just after were probably the worst for me. The chemotherapy made me very sick. As quickly as I was feeding with the peg, I was then throwing it all back up. My weight became a concern as I was just over 7 stone, but slowly I managed to put on a few pounds to placate the nursing staff at Velindre (heavy car keys in my pocket helped).

The physical changes to your face from Head and Neck cancer can be quite shocking - the scars are very noticeable but slowly the swelling settles down, the body adapts and begins to heal ... and little by little you enjoy life again"
After all the treatments had finished, I avoided going out if people were having a meal as I felt uncomfortable around food, but with the help of family and friends I slowly overcame this. My speech has probably caused me the most stress as communication is sometimes difficult due to the fact that I cannot pronounce certain words or phrases. This can cause complications in certain situations (especially on the phone), but again I'm slowly coming to terms with it and my brain is quick to think of alternative words that I can say and be understood. My social life has changed dramatically - the fitness regime which I loved has gone but a walk with our dog now gives me just as great a pleasure.

The physical changes to your face from Head and Neck cancer can be quite shocking - the scars are very noticeable but slowly the swelling settles down, the body adapts and begins to heal. You learn to speak again, to eat and drink safely, your taste and sense of smell slowly return, you laugh and smile again (if a little crooked), you even sing along to the oldies on the radio (very badly indeed) and little by little you enjoy life again. My wonderful family and friends still help me through the darker days when tears of frustration and sadness get the better of me and there's still the reassurance and support I get from the incredible Head and Neck Team who have helped enormously with my recovery and peace of mind.

I do miss my old life, the one where I could chat forever and eat whatever I want but this new life I've been given is going to be just as good and just as precious.