I decided to let the cancer do its own thing. This did not go down well with the very professional Mr Kemp, which I fully understood. He wanted to save my life. Mr Kemp referred me to Dr Ritchie, an esteemed oncologist from the Beatson Cancer Centre in Glasgow. Dr Ritchie explained that she could not give me Radiotherapy until my tumour had been removed. She was aware of my earlier decision and told me about Professor Gerald McGarry, an ENT specialist in the Glasgow Royal Infirmary, who had pioneered operations on other patients. I was up for that so an appointment was made for me to see Professor McGarry, affectionately known as Indiana Jones!
Physically and emotionally, this was the most painful time of my life. I walked the floor every night in severe pain. The pressure in my head was unbearable and at times I felt my head could have burst. My nose and face were packed with swabs to support the composite, allowing it enough time to fully bond. I was unable to smell or taste anything for eight months. Due to the Radiotherapy, I lost my hair in three places which gave me big bald patches at the back of my head. I had my hair cut short and used lots and lots of hairspray to try and hide the bald patches!
Despite suffering more than I had ever expected, I wanted to stay strong and positive for my family. I knew I had to beat the cancer. I had to survive. Professor McGarry and his team along with Mr Kemp monitored my physical progress very closely. When I was well enough, I was fitted for my Radiotherapy mask, something I had never even heard of before. I felt totally unprepared and I was terrified. My tumour was very close to my Pituitary gland so the precision and accuracy of the beam was utterly crucial. This meant that for five days a week, for seven weeks, I had to go to the Beatson, put the mask over my face, have it stapled to the table (to ensure I remained still), be left in the room alone, keep my eye pointed away from the beam (to avoid cataracts) and persevere through the treatment. The mask, which had been moulded to fit my face exactly, was very claustrophobic. The mask felt suffocating and disorientating and on one occasion I suffered a panic attack. In hindsight, it was a necessary evil but being strapped down, unable to see, frightened and alone was a truly horrific experience; but it saved my life.
After my Radiotherapy came another blow. In my post-op check, a full body scan revealed a lump on my fallopian tubes. I had to undergo another surgery to remove my tubes. After all of this, at a point where I felt totally exhausted and beaten down, I started my skin grafting treatments on my face. By this point I had completely lost my confidence. I had horrendously low self esteem and questioned every decision I had to make, no matter how trivial. My physical journey was well underway but my emotional scars were as raw as my surgical wounds. I couldn't look at myself in the mirror. I didn’t go out. I felt alone, like no one would understand. I felt broken. I felt I had let my husband down. I felt disfigured. My darkest thoughts still haunt me to this day. Even now, writing this page to help other patients, I find reliving this time in my life unbearably hard. It is a difficulty words cannot express. In this time of fear, loneliness and heartbreak I discovered there was no Head and Neck Cancer support group in Scotland; no one for me to turn to, no one who could understand and no one who could show me that there would be life after this cancer.
Unlike with most cancers, the effects and scars of Head and Neck Cancer cannot be covered by your clothes or by your make up. They are visible for everyone to see, to stare at and to judge. My cancer was emotionally debilitating and physically scarred me, but the real heroes are those who have been far more affected than I; people who have lost an eye, have Laryngectomies, have lost the ability to speak, have lost extensive parts of their face and worse still, those who have lost their lives. We will walk for all of them. I am one of the lucky ones, I survived.
Throughout all of this time I was incredibly well looked after by the various clinical teams I encountered. Physically I was improving. I realised that what I was going through was NOT unique - there were other patients suffering too, who were they talking to? I wanted something positive to come from my nightmare, so I spoke with Professor McGarry, my ENT specialist nurses, Amahl Mathie, (my fairy godmother!) and the lovely Lesley Sabey, and persuaded them to help start a Head and Neck Cancer Support Group in Scotland. I was introduced to another patient, Nelson McFarlane, and together we founded the Heads Up Support Group for patients and carers. Now in its third year, Nelson, myself, and some wonderful friends (Kel, Lynne, and Eiric) have pulled back from the support side of the group to allow us to focus on raising awareness. Whilst Heads Up continues to flourish and look after our patients offering much needed support, Heads Up Awareness, has been afforded the time to push forward in our endeavours to promote understanding and education of the public on the necessity of regularly checking yourself, ensuring early diagnosis for the best possible outcome.
I do hope the message from my experience of having cancer is: if you see or feel something on your head, - neck, mouth, face or body that is not the norm please make time to see your doctor and get it checked. Having come through my journey, challenging and heart-breaking as it has been, I am here. I am alive. I saw my son get married. I got to meet my beautiful grandson. Now it is time for me to start another journey...one which includes hiking boots, walking poles and various other items like sleeping bags, biodegradable toilet paper and blister packs that are completely alien to this city girl! Prof McGarry gave me a second chance and saved my life. Now I’m stepping completely out of my comfort zone (and my stilettos!), to tackle the Great Wall of China Trekking Challenge to help RAISE AWARENESS and vital FUNDS for Head and Neck Cancer Patients in Scotland.
