I was 43 when the wind was knocked out of not only me, but my whole family. To begin with, I had not heard much about tongue cancer as I had never seen any posters or heard adverts about it. I was a runner at the time and careful about my diet. I had never smoked and didn’t drink a lot of alcohol. Yes, I had a stubborn ulcer that didn’t want to heal, but I was prone to ulcers. I had been in pain for six months before I could get the appointment, which was a cancellation, incidentally, because no referral had gone through.
I had a very painful biopsy taken and waited for my results. When we arrived for the results, neither my husband nor I expected to hear the words: “I’m sorry, my dear, but you have tongue cancer.” The shock was something else, to be honest. We were given about 20 minutes in another room to take stock, as I was a blubbering mess at this point.
From there, we were escorted to another area of the hospital where we met our team. During the next few hours, we not only learned that I had tongue cancer, but that I was going to be having life-changing surgery to remove the side of my tongue, with it possibly being rebuilt from a skin graft from my non-dominant wrist.
I may well have a tracheostomy while in hospital. I had to prepare myself that I would have to learn to talk, eat, drink and swallow again.
To begin with, I was in denial. Then I was filled with shame as professionals were telling me I would have to stop smoking. I had never smoked and felt I was being stereotyped constantly.
My first point of contact was always my clinical nurse specialist and her partner in crime, my dietitian and without these professionals, I would not have been so sane, to be honest.
I had my surgery a month after my diagnosis, and this was nine years ago. I had the side of my tongue removed, and my surgeon decided I could “make do” without having my tongue rebuilt.
I also had a neck dissection, so my “war wounds” were very visible. I also had radiotherapy, which involved having a full-face mask made and a PEG feeding tube fitted into my tummy for when I struggled to eat, drink or swallow during treatment.
We often hear about the Holistic Needs Assessment, don’t we? How many times should a patient fill this out?
I filled it out once, and this was before radiotherapy started. After an awful experience at work where I was forced to give a verbal presentation to save my job, my mental health took a huge knock, and my clinical nurse specialist arranged for me to see a speech therapist, to not only help with my speech impairment, but also my lack of self-esteem and confidence.
I was told at the end of my treatment by the visiting speech therapist that I could manage without speech therapy.
My personal belief on this is that all head and neck cancer patients should be allowed to have not only speech therapy but also psychological support, as this cancer pathway is brutal.
Truly brutal. Not only did I look different with my visual scarring, but I sounded very different and at times am not clear at all with my speech.
Through my journey, and the patients and family members I support as a patient ambassador for the Mouth Cancer Foundation, I know I am not alone in my mental health struggles.
We must all contend with how we now look and sound. Many of us are no longer able to enjoy and eat the same foods we used to, as this changes due to the changed anatomy of our mouths and the effects of treatment.
Only 50% of head and neck cancer patients can return to their jobs. I persevered with my career in education for eight years post-cancer surgery and treatment, but I admitted defeat last year due to all the late effects I suffer with, with no support.
This is why I started campaigning for more late effects clinics for head and neck cancer patients, with the hope that mental health is finally addressed, along with the 60-plus late effects that many of us are left suffering with.
Holistic Needs Assessments need to be carried out once a year for patients, as patients can suffer long after their treatments finish, no matter what cancer they have had.
It is all very well filling out these forms, but the issues need to be addressed as well. We need the treatment path to be about diagnosis, surgery, treatment and late effects, as we all deserve a quality of life that is lacking afterwards.
This is why I’m backing the Daily Express’s Cancer Care campaign, to ensure all cancer patients get mental health support both during and after treatment.
