Cath’s Patient Story
“You have a malignant tumour” the words that you half expected but never ever dreamt you would hear. Mine was cancer of the tongue and saving the tongue was not an option.For years I had suffered ulcers on the tongue and had them checked out without problem, but in 2012 this last ulcer became cancerous and I didn’t spot it in time. 80% of my tongue was removed along with my lymph glands, skin from my thigh was used to make a flap to assist my swallowing and speech, a feeding tube in my stomach kept me hydrated and well fed for 3 or 4 months until I could swallow for myself. Chemotherapy and Radiotherapy followed soon after the surgery and my wonderful family and friends helped me through the darker days when tears of frustration and tears of sadness were getting the better of me, and then there was the reassurance and support from the incredible Head and Neck Team who helped enormously with my recovery and peace of mind.
The physical changes to your face from oral cancer can be quite shocking, the scars are visible and “in your face” but slowly the swellings settle down, your body adapts and begins to heal. You learn to speak again, how 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 radio again (very badly indeed) and little by little you enjoy life again.I do miss my old life, the one where I could chat forever and eat whatever but this new life I’ve been given is going to be just as good and as precious.
Cancer Patient and Face up Trustee – Joanne Hawkins
I am a wife, mother and grandmother.
I am also a former armature Welsh jockey, trainer and racehorse owner.
I am a cancer patient.
From my battle with cancer I have had to learn to walk, talk and eat again. I didn’t think I would see my first grandchild. I didn’t think I would marry my long term partner. I didn’t think I would ever be able to ride my horses again. But I have overcome what once seemed impossible and been lucky enough to accomplish all of the above.
I have always been active, both with my own horses and within the racing industry chairing panels of Stewards at Chepstow, Bath and Ffos Las Racecourse. I previously ran the London Marathon, incidentally for a cancer charity, I trained my horse Power King for point-to-pointing and I ride out daily. I love skiing, spinning classes, circuit training and hiking. I work four days a week and go horseracing on my days off. I have never smoked, drink in moderation and have a healthy, balanced diet. Cancer was something I never thought would affect me.
However, in September 2011 I was diagnosed with head and neck cancer. The extensive surgery, reconstruction and rehabilitation which followed was life changing for me and my family.
After a referral to Mike Fardy, consultant oral and maxillofacial surgeon, and his team at the University Hospital of Wales on November 24th, 2011, I underwent radical surgery to remove an aggressive carcinoma in the anterior mandible.
The surgery involved removing my lower jaw and reconstructing it with a custom made titanium plate. The plate was fitted to a large piece of my fibular bone taken from my right leg. The bone was then broken in three places and screwed to the plate to form my new jaw. Tissue from my leg was used to reconstruct the floor of my mouth. A skin graph from my stomach was used to repair my right leg. Finally, to aid my recovery a tracheotomy was performed as I started the process of dealing with the trauma of a radical 10 hour surgical procedure.
To date I’ve had 117 hospital visits, 16 hours of surgery, hundreds and hundreds of stitches, needles and blood tests, 72 home visits from the District Nurses, MRI scans, CT scans, ultra sound scans, ECGs and the help of therapists both physical and physiological.
Successful surgery is only the first step in recovering from these most harrowing forms of this disease. The after-effects of surgery, especially facial disfigurements and loss of speech can have devastating effects on patients. They strip you of your identity, self-esteem and rip away your confidence, leaving you feeling humiliated and isolated.
I thought it would be one operation and I would recover and get back to normal I never stopped to think that I would have to approach my recuperation with a positive attitude and focus on the future. Trying to rebuild your normal life after such major surgery is difficult.
Despite all of this, I consider myself to have been lucky. The help and support and the exceptional work done by both Mike Fardy, maxillofacial surgeon, Liam Addy, prosthetic dentistry consultant, and all the multidisciplinary team that work so dedicatedly together for the patients was fantastic. Because of their work, along with the unquestionable love and support of family and friends…
I AM A CANCER SURVIVOR AND I HAVE MY LIFE BACK.
I have been blessed to see my family grow with the arrival of my first grandchild. I have recently married my partner of 9 years and I am able to ride my horses and work in the racing industry again.
The advice I can give now is that there is a way forward. You will have times when you give way to tears and ask ‘why me’? You will be scared and will feel overwhelmed with fear. You will have dark moments when you simply cannot see a way forward. But you will find a way. You will deal with all that unfolds in front of you and with the help and support of people who have experienced the journey, you will also move forward with your life.
As a head and neck cancer patient, I have experienced first-hand all the difficulties you may be facing and I am happy to help in any way I can. I have joined the team at FACE UP CYMRU as a Trustee, but more importantly as a patient.
With help and support we can all move forward.