Karen

Karen

How old are you?

48

Where are you from?

Rochford, Essex.

Profession, if working?

Full time Nursery Assistant in a nursery school attached to a school.

What type of cancer do you have?

Tongue cancer.

When and how was it diagnosed?

I was diagnosed in February 2016, when I was 43, after being in a lot of pain from an ulcer that appeared on the side of my tongue in August 2015 which persisted and then became a hole in the tongue by the time I was seen by a nurse at my GP surgery in October 2015 and a referral was made to ENT department at my local hospital. I went to my dentist too during this time in case he could file my teeth down, in case that was why my tongue wouldn’t heal. He said I may have to chase my referral if I hadn’t heard anything by Christmas, which is what I had to do in the end. No appointment had been made for me; finally after sobbing down the phone to a lady who took pity on me, I was offered a cancellation for early February 2016. By this point I had been on a soft diet for months. A painful biopsy was taken and the following week a specialist saw me to give the news I never expected to receive.

What treatment have you undergone?

I had surgery early March 2016 to remove the side of my tongue and a neck dissection, then in April I had a PEG fitted before having 6 weeks of radiotherapy. Six months after radiotherapy finished, I had more of my tongue removed (underneath this time) as my surgeon thought my cancer had returned after finding another ulcer underneath my tongue after I had complained about being in a lot of pain again. Luckily the cancer hadn’t returned, I was just very run down and had an aggressive case of oral thrush.

Did you have any of the obvious risk factors?

No I have always been a healthy person, never smoked, didn’t drink much, always looked after my body; being a runner, so came as a bigger shock to find out this was my diagnosis and then to find out nobody could tell me why I had been diagnosed afterwards was disappointing and frustrating to be honest.

What did you previously know about head and neck cancer?

To be honest, I had never heard of “head and neck cancer”; I had heard a little about mouth cancer but only in association with old men getting it especially if being a heavy smoker or drinker, I haven’t seen it advertised much at all. This is why it is so important to see more adverts about mouth cancer and get the awareness out there so people can seek the help early.

What support have you received?

I had brilliant support from my cancer nurse and dietitian throughout my cancer journey, both went beyond the necessary with me and afterwards too. My cancer nurse runs a local support group which runs 4 times a year and through this made contact with a wonderful speech therapist who helped me with tongue exercises to assist with swallowing issues caused by late effects of radiotherapy and with my speech to give me more confidence. The radiotherapy team were brilliant and always so patient and compassionate, especially during the second half of treatment as I started to deteriorate. I also had fantastic support through family and friends, especially my running club, they took me to appointments, cooked meals for my family and ensured I never ran without company and even drove me to club sessions so I could still be involved. The best support ever though was from my husband who took everything on board and helped with every aspect of my treatment, even being chief PEG turner every 10 days as I couldn’t bear to do that; he checks my mouth if something doesn’t feel right as sensitivity is different after surgery and radiotherapy; he tastes tests food or hot drinks so I don’t burn my mouth if we are out and about and will make phone calls on my behalf; he keeps a check on all my dry mouth products to make sure I have enough to keep me going always.

Is there anything you would like to say?

I feel I have to say that I was extremely lucky in that I had a lot of silver linings in my cancer journey – I didn’t need to have my tongue rebuilt, so no skin graft was needed and no tracheotomy, no teeth were removed before radiotherapy, I didn’t have to have chemotherapy, I was able to run throughout and my PEG was removed just before we went on our first family holiday abroad in years. However, it needs to be said that life after mouth cancer is tough, in more ways than one. I do have it easier than most but I still struggle on a daily basis. I get very tired from talking all day, certain things affect my speech, eating can be hard work, I avoid talking on the phone when possible because I am not very clear. Life isn’t the same, running isn’t the same, but then you have to look at life differently, so I do as much as possible. I eat food that is easy for me, I still choke and I take longer than others to eat and need plenty of water while eating. I no longer use a sports watch for running as it takes the pressure off my speed as I am now a slow runner and use products to help with dry mouth and running really dries out my mouth. If I am tired, my speech is slurred, the cold air makes my tongue numb so that makes me less clear. Make sure you check your mouth once a month, and if anything doesn’t feel right, don’t ignore it, get it checked out by a doctor or dentist and make a nuisance of yourself. I make sure I raise awareness of this awful disease as I don’t want anyone else going through this and living with the after affects. It also needs to be said that you get amazing support while you are going through this journey but the families are still dealing with it all long after all the treatment finishes. It takes a long time to recover from the cancer diagnosis and how it takes its toll on the family. I think in particular with this type of cancer there are self-esteem and self-confidence issues which aren’t always addressed…you look and sound different. However, as I say to other survivors that I help and support, we are all in the same boat and all need to support each other, we get it and are there for each other. Please just be vigilant with your own mouths as they are amazing and should never be taken for granted.

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