Behind the mask

Breast cancer is a well oiled & funded marketing machine. HNC (head & neck) will likely take over from cervical cancer but we don’t talk about it. Here's the day that I did.

My time in radiotherapy

Breast, bowel & prostate cancer is the sexy cancer.

I nearly did something today that in hindsight I would not have been happy with tomorrow.

All these people banging on about this woman who has breast cancer and how bad it is for her and let’s do this and let’s raise money and let’s get everyone on their high horse about it.

I was so close to saying “yeah she’s got breast cancer, whoop dee doo” .... at least she can eat, at least she can drink, at least she can go back to her job. She can go out for dinner and enjoy food, any food, wine and a cup of tea.

At least she’s got her social life, she can kiss, she can talk, she can whistle.

I was so angry and I thought it’s so unfair that at times I’ve wished I had breast instead of this cancer.

Then I feel guilty.

It came from no where this anger today. Month nine and still no food, no eating and another sore throat. Has anyone else ever felt like this?

I wrote this on the 1^st August 2019 to an online support group.  I was 5 months out from treatment for stage 4 Oropharyngeal cancer. I had 1/3rd of the base of my tongue removed, a neck dissection (30 lymph nodes) the removal of a tumour the size of a couple of small walnuts and both my tonsils. I wasn’t eating, I was pouring artificial formula into a PEG tube in my stomach and I was at war with the world.

Despite my trepidation in voicing how I was really feeling, (I mean who says they wish they had breast cancer ?) turns out a lot of other head & neck cancer people felt the same way. Their stories equally Herculean, full of emotion and the severe impact treatment had or is having on their life now, those lucky enough to have survived.

All this triggered by a woman on the news complaining of a small tattoo used on her breast to indicate where radiation was to focus.

Some of us are not proud of our thoughts, me included, but I remember thinking, you can cover that up, wear a top, you can’t cover up facial disfigurement, the inability to swallow, talk, or drink & eat in public.

It’s not a sexy cancer, it’s not a common cancer, we don’t have the clout, we don’t talk about the life long side effects as a result of being given the gift of life itself.

The mask is a part of the treatment process. I was lucky, it didn’t faze me too much, it was uncomfortable yes, they immobilise you on a table by screwing the mask down over your face. You can feel your eyelashes brushing the inside. This mask is made using mesh plastic which is moulded to your exact facial / shoulder requirements. I used yoga meditation to get through the 15 minutes of radiation whilst others had panic attacks, claustrophobia and ongoing mental issues effectively locking them in an emotional jail long after the treatment had finished.

This radiation burnt you internally and externally, producing 3rd degree burn like scarring and fibroids that would unleash their worst further down the healing track.

I have heard public support stories where women with breast cancer were getting cooked meals and housework done from charities. These available options being discussed whilst partaking in tea & asparagus rolls in a cancer care group.

We can’t talk, eat and breathe at the same time. We don’t receive glossy and targeted marketing campaign roll outs. If someone famous is diagnosed with HNC (John Farnham, Martina Navratilova, Val Kilmer, Michael Douglas, Stanley Tucci) it gets a bit of air play, but unless the person feels comfortable in making it better known, we remain under the radar. It should not take being a world famous movie star or singer for this cancer to receive the recognition it deserves. It’s side effects are life changing and also carries the highest depression and suicide rate of any cancer in the world unsurprisingly.

We carry our disabilities and scars forever, some even being told they deserved it due to its location, you must have been a smoker, a drinker or both. More often than not, these days it is caused by HPV and that leads to a whole lot of other guilt, misinformation and frankly misfortune. Something even to this day I am still coming to terms with.

As a group, we are isolated and in need of help or at the very least understanding. Some of us don’t look sick, some of us have a hidden disability, in my case swallowing, some of us do this alone as a single person and some have support networks in spouses and friends.

We are not like other cancer patients, particularly after radiotherapy. Sitting with other cancer patients who are eating, drinking & talking .. we sit in stony silence, not daring to try eat or drink in case we choke, or worst vomit. I know many people who ring a bell after chemotherapy treatment finishes, I didn’t. It wasn’t offered and I was still trying to pick my way through the minefield of radiotherapy. I was warned, it is a brutal treatment. The radiography department being the most disliked department due to damage they inflict according to my radiologist. They weren’t kidding, even writing this blog has taken its toll. I have had to stop and compose, redirect my thought processes.

Our medical teams need to remove the cancer if they can, without destroying basic human functions like eating, drinking, speaking, smiling, breathing & appearance.

The cancer is so visible to the world in those of us with scarred faces and no teeth. This cancer is such an interruption to our working & social life if we can't eat properly and speak clearly. We can’t just cover it up with strategically placed scarves and jackets, eventually we must eat and socialise in public again.

A small tattoo of a cross is such a small inconvenience in the grand scheme of things.

My social eating checklist is available here