I discovered one day a freckle on my right cheek – I left it alone until a friend said I should get it checked. I saw Mr. Ilankovan and he diagnosed face cancer – a tumour and I could lose my eye. My husband had recently died and I was not prepared for this shock. I had my face reconstructed and also some cosmetic surgery.
I was introduced to AboutFace and have met some wonderful friends and my new life started again – I have been given great strength and hope I give others the same from my experience. AboutFace has given me confidence – knowing there is always someone there.
My journey started in August 2007 when I went to see my GP because of a hoarse voice and a lump on the right side of my neck. My doctor decided to refer me to the ENT department at Bournemouth Hospital, after more tests and a needle biopsy on the lump, I was told that I had to have a MRI, then biopsies on my tongue and nasal passages as soon as possible - these would be done at Poole Hospital - so I signed the consent form and then went back to work not really sure what was wrong with me. I had my biopsies on 4th September then waited for the results. My appointment was for 18th and my husband came with me, when my name was called we walked into Mr Cox's office it was full of people that was when I thought this is serious. Mr Cox told me I had a secondary cancer on the right side of my neck but that the primary site had not yet been found. I was told about the operation - a radical block dissection of my neck and also another tongue biopsy which would be in 2 weeks.
I can’t really explain how I felt - I suppose it was surreal as if it was happening to someone else. I did ask Mr Cox what my chances would be if I did not have the operation - his answer shocked me. He said that the cancer had already spread and I might only have 6 months to live. I signed another consent form and took a booklet about the operation and left his office. Mr Cox said he was sorry it was not good news but that he would do his best for me. In the space of one month I had gone from a care free existence to being faced with a life-threatening illness, I turned to my husband and said “I can't believe I have cancer” his reply was “not just you - we have cancer”.
My cancer and what was ahead really hit me in the early hours. Not been able to sleep I started writing down my feelings - fear, anger, and how I would cope. This was the start of a journal which helped me all through my cancer journey, updating it every night with good and bad days. My operation was on 1st October, they found the primary on the base of my tongue. My treatment afterwards was intense chemotherapy and radiotherapy. I was lucky not to have an operation on my tongue. The treatment was hard and very tiring but I kept working as much as I could when having chemo’ and all through my radiotherapy as it kept me feeling in control of my cancer. I am a positive person and dealt with the side effects as they happened. My husband was my ‘rock’ and my employers were very supportive giving me time off for my treatment. I do have a scar down the right side of my neck which I show with pride as I am a head & neck cancer survivor.
I joined AboutFace in 2010 to give something back and to support other head and neck cancer patients. Knowing that you are not the one only who has been through H/N cancer and the support that continues is invaluable, this support was proved to me when in 2011 when I was diagnosed with breast cancer. I did not need to find a breast cancer support group as I had all the support I needed from the About Face volunteers.
I am happy to give my time to AboutFace helping to raise awareness and also helping out on various stalls to raise funds. I hope that when new patients come to our centre and see the lovely people who have also ‘been there’ they are given hope that they too can beat cancer.
Lastly I have a poem in my diary that I really believe in - this is it:
Cancer cannot cripple love
it cannot shatter hope
it cannot corrode faith
it cannot kill friendship
it cannot destroy peace
and it will not win
this I truly believe.
In 1989, I noticed a small, flat mark on my forehead but it was not until 1994 that it was diagnosed as cancer and was surgically removed. I thought that was the end of it. In 1999, I had to be referred to the Head and Neck Unit at Poole Hospital when a second cancer was diagnosed. Unfortunately the tumor had grown inwards and I had to face losing my nose and septum. At the time of this operation the first part of reconstruction began.
Unfortunately 6 months later, in 2000, a small, third cancer, had to be removed from the bridge of my nose. As a result of this, reconstruction had to be ‘put on hold’ for a very long time. It was difficult for me but I shall always be indebted to the dedicated medical team who helped me in every possible way. I learned how to use camouflage makeup which helped to cover disfigurement, scars and discolouration and helped me to get out and ‘face the world’.
After a very long seven years, in 2008, I was ready to have further reconstructive surgery which was completed finally in 2010. I am so, so happy with my new nose! When I reflect on my life in 1999, I was ‘jogging along’ steadily, as we do, when, suddenly a life changing bombshell landed in my lap – or perhaps I should say, my face. It had a name – Cancer.
I have spoken of the medical/clinical side of the bombshell. What about the mental/emotional/social elements of ‘the fallout’. We can all put on a brave front and even convince ourselves we’re doing OK but at some point, what goes deep should be addressed.
All aspects of our life can be affected and changes need to be put in place. I, like many others I know who have been through cancer, did not have time to deal with how they were coping or feeling – too much was going on! It was at a later date that we dealt with the emotional fall-out. I believe we may suffer some degree of post-traumatic stress. We do not always want to share with those we love deeply – we want to protect them an surprise, surprise they feel the same – they don’t want to ‘bring it all back to us’!
Often it is better to talk to someone who has been there when the time is right for you. That, for me, was my introduction to AboutFace. On a personal level, past of my own recovery has been to undertake specific accredited training to support people with cancer and I continue to keep updated today. Support is a two-way thing – for those seeking and those giving. I feel privileged to be a volunteer and offer one to one support. When the time is right, contact us. For me where one door closed another door opened – with a ray of About Face sunshine!
It all started in 1993 with my husband Delm having something as innocuous as a sore throat which, after every course of antibiotics, came back again. After a lot of investigation, including the removal of a tonsil, a tumour was discovered on the base of his tongue. At least now we could start fighting back. Chemotherapy and radiotherapy followed and then a radical neck dissection which also meant the nerve to the shoulder was removed. Delm was a big squash player and he was told he would not be able to play again as he wouldn’t be able to raise his arm – he soon proved them wrong and went back to his squash and golf.
Delm opted for annual check ups and for 8 years all went well. We went off to America with friends and drove from Chicago down to New Orleans on our “blues and jazz tour”, arriving at 4 p.m. the day before 9/11. While we were away, Delm had an annoying earache so dosed himself up with paracetamol. We had a wonderful holiday. When we returned, Delm went back to the hospital to report the earache and was given a scan. Sadly, the results came back and showed that his cancer had returned with a vengeance.
At this point we came under the wonderful care of Mr Ilankovan and his team – how lucky were we? Surgery followed where Delm’s tongue was replaced with stomach muscle and he then had to learn to swallow and speak again – which, of course, he did. His goal was to eat steak pie – which of course, he did.
During a stay in Poole Hospital, Mr Ilankovan took us to meet Ian Catley, as they were setting up “The Butterfly Appeal” with a goal to raise £250,000 so that a property could be bought near the hospital as the “AboutFace” house. At the time it seemed an awesome task – yet, here we are with an amazing centre opposite Poole Hospital which offers such a valuable service and does so many other things. When Delm was in intensive care or on the ward and I had to spend so much time hanging around on my own, very often distressed, I would have given anything to have been able to walk across the road for a cup of tea and a bit of TLC. An incredible achievement.
Delm was an amazing man – much loved by not only by me, who married him when I was 19, and his wonderful children, David and Laura, but by so many people whose lives he touched. He was such a fighter and enjoyed life to the full. The fact that the Priory church had standing room only was a testament to this. We were fortunate that Delm was able to spend his last days in his own bed at home, looked after by his family and supported by the fantastic nurses from our local surgery and the Macmillan Unit. He left us, peacefully, early on 22nd June 2008. It has left a huge hole in our lives. We talk about him all the time and he is still a big part of our lives.
I felt very privileged to be asked to be a Trustee of AboutFace as my chance to “give back”. I enjoy my visits to the drop in on some Tuesday mornings and I have met so many lovely people. My barn dance is now an annual event and I am fortunate that my employer, Santander, will match up to £3,500 raised. This is such a wonderful charity which offers so much support and much much more. I am very proud to be part of it and I know that Delm would be very pleased at how the charity has gone from strength to strength.
I suppose nobody is really ready to be told that they have cancer, but it was certainly a shock for me the first time. I was in my 3rd year at university, and was 2 weeks away from my final exams, and, more importantly for me at the time, 3 weeks away from my 21st birthday. A few weeks previously I had had an operation to remove a benign cyst from the back of my mouth, and I was back at the William Harvey Hospital in Ashford for what I thought was a routine checkup. “I’m afraid, when we removed the cyst we found a hard lump in the middle, and after testing it, we discovered that you have muco-epidermoid carcinoma.” I’m not really sure what followed, I remember crying and a kindly nurse handing me a glass of water, and then I remember suddenly being out in the car park of the hospital and phoning my mum, trying to make sense of everything. My parents were amazing. They dropped everything and came down to see me, and basically took control of my life for the next few weeks. I think I sat my final exams on auto pilot.
The consultants were happy to postpone my surgery to remove any remaining tissue until after my exams, which meant for a few weeks I could try to forget all about it. I don’t think I dealt with the situation very well. I decided that I didn’t want to tell people around me what was happening. It’s a very difficult thing to do, telling people you have cancer and I felt guilty about those friends that I had told. They were all sitting their final exams like me, and I didn’t want to be a burden to anyone, so I kept quiet. In the summer of 2003 I had an operation to remove any traces of the cancer, and then over the next few years I got back on with my life. I went to Cambridge to train as a science teacher and then got a job at a girls school in London. Life seemed really good, and although I always had the cancer at the back of my mind (I was still having six-monthly check ups) it was becoming less a part of my everyday consciousness.
Then in November 2008, that all changed. I had moved down to Christchurch, Dorset a few months earlier to get out of the hustle and bustle of London, and to be closer to my family, when I noticed a sore patch at the back of my mouth. I assumed it was a wisdom tooth coming through, so booked an appointment with my dentist. He looked at it and told me it definitely wasn’t a wisdom tooth, and that normally he would not worry about it and send me on my way, but because of my history, he wanted to be certain, so he sent me for an MRI scan at Bournemouth hospital. I think at that point I knew that my worst fears had come true, but I had to wait until the week before Christmas for my suspicions to be confirmed. The cancer had returned and was growing right at the back of my mouth.
I was referred to My Ramchandani at Poole hospital and he proposed a huge operation to sort it out once and for all. The plan was to open up my mouth by cutting down from below my ear down the underside of my jaw. They were then going to remove the tumor, along with part of my jaw bone, and use skin and muscle from my arm to patch the hole. Then they would take skin from my stomach to patch the newly made hole in my arm! It all sounded a bit far fetched to me, and I think it took a few days for the enormity of the operation to set in, I certainly sounds ridiculous, even now when I think about exactly what they did! The operation was going to be happening at the back of my mouth, which meant that the area was going to be very swollen for a long time and this caused two main difficulties; the first is eating, and so, two weeks before the operation, I had a PEG tube fitted. This is essentially a tube which goes straight into your stomach, and it allowed me to be fed with liquid food in the weeks after my operation. The second major difficulty is breathing, so during my surgery I had a tracheostomy tube inserted into the base of my throat. This stayed in for about 5 days after my operation. Now, don’t get me wrong, I understand that breathing is quite an important function (I am a biology teacher after all) but the tracheostomy tube was by far the most unpleasant part of my whole ordeal, it was uncomfortable, and got clogged up, which meant it had to be hoovered out in a process that made me feel like my lungs were being sucked up out of my body.
I eventually went in for my operation on the Thursday 29th January 2009. The operation lasted 13 hours after which they kept me fully sedated until the next day. My first memory is of waking up in intensive care with a large group if doctors around me, I think they were quite startled to see me awake, the sedative was supposed to wear out about midday, but I was wide awake and fairly alert by 10am in the morning. This was just the start of me proving to the medical staff that I am not really very good at being told what I can or can’t do. By Friday evening I was out of intensive care an into the High Dependency Unit. On the Monday, my tracheostomy tube came out, and I managed to misbehave again by telling a small white lie to the nurses about how the physiotherapist had said it was fine for me to walk about the ward (I think her actual words were that she would be back tomorrow to take me for a longer walk around the ward to get my legs working!). My attitude was that since I have been walking successfully on my own since for 26 years, I wasn’t about to start asking for help! By the time I got up to a real ward and the fog of the morphine had lifted, I began to see the comical side of my new appearance. My face resembled a puffed up balloon, I looked like I had gained 12 stone over night, and I had a strange array of bright blue stitches along my neck which made it look like I was the victim of a botched beheading!
After just 10 days in hospital, I successfully negotiated my release, although I was under strict instructions to behave myself and rest. I think the greatest moment for me throughout the whole experience was about a month after the operation, when I had a swallow test. I had eaten nothing for an entire month and the first thing I was given was barium gel, which looked like wallpaper paste, and didn’t taste much better either! After being told I could finally eat, I went back to my parents house and enjoyed a cup of tea accompanied by a chocolate mini roll. Never has anything tasted so amazing, and chocolate mini rolls will now forever hold a special place in my heart. Obviously, getting the news that the operation had been a success, and that I wouldn’t need radiotherapy was also quite amazing, but still, nothing compares to that first cup of tea and the mini roll!
Throughout my whole time in hospital and my recovery at home afterwards, I was constantly overwhelmed by the support and generosity of my friends and family. Unlike my first diagnosis where I tried to keep it all to myself, this time I made sure everyone knew, and whenever I had a down day, I knew that there were dozens of people at the end of the phone who would take me out, provide a shoulder to cry on, or even just come over to my flat to have a cup of tea and watch a trashy movie. Knowing that I had so many people rooting for me and wishing me well, really gave me the strength to get myself back together again. And the AboutFace Centre has also really helped. It is great to have people to talk to who have ‘been there, done that,’ and I often pop in for a cup of tea after my appointments at Poole to have a chat about what is happening.
It was quite nerve wracking going back into school after 3 months off, but once again, the people around me amazed me. Everyone at work was brilliant and so supportive, even the students seemed pleased to have me back, and after a few curious questions about where I had been, and why had I returned with odd scars all over me (if I’m not in the mood to talk about my cancer, I tell the kids I was attacked by a crocodile whilst snorkeling off Hengistbury Head!), things slowly started to go back to normal.
It's strange to think that all this happened five years ago, the scars have all started to fade, and apart from the fact that I have no sense of taste in the right side of my tongue, life has now returned to normal. When I think back about what I went through, it has definitely taught me to not take life for granted, if there is something I want to do, I will make it happen. It would have been very easy to can lie down after my diagnosis and feel defeated, feel sorry for myself and ask for pity from those around me, this was certainly the easiest option, and at times quite a tempting one. However, I see life as a series of challenges, problems that you have to overcome in order to get on with the things you want to do and this is the route that I decided to take.
I think one of the things I have learned is that life is unpredictable, and anything can happen to anyone at any time. Mouth cancer used to be a disease which was associated with older patients who had a history of smoking, or heavy drinking, but more and more young people are now being diagnosed, and we need to make sure that the early warning signs are detected and that young people are aware of the disease and educated about what to look for. AboutFace are definitely helping to raise awareness, and I am enjoying the opportunity to help out with their work.