youAll cancers are horrible and can be fatal. You never quite know if one of those dastardly little cells got away after treatment.

But head and neck cancer has its own particular horrors.

Massive surgery

The all day surgeries necessary to remove the cancer in the mouth, throat and elsewhere and then reconstruct the holes left behind are like being hit by a bus. People have their jaws replaced by leg bones and titanium. Their tongues replaced by tissue from the forearm. These are just some of the body parts which are swapped around to give a patient as close to normal function as possible.

And each removal of tissue then has to be covered with a patch of skin from somewhere else. I’ve got a big scar on each wrist and two wrinkly white patches on my thighs where layers of skin were removed.

Social media star Elly Brown has had horrific HNC as you can see by her large fibula flap scar. 
She has dedicated her life to normalising this and helping others. 

The trials of this surgery are numerous: the tracheostomy, the suction, the humidifier and numerous drain bottles, the Fortisip going down the back of the throat from the nasogastric tube, the diarrhea (I prefer this US spelling) from the antibiotics, the inability to eat and drink for a week or two or more. The Doppler device checking the “flap”.

Will the transplanted tissue maintain its blood supply? Will I have to go back into theatre? When will the trache come out so I can talk again?  In pain and discomfort, you can’t communicate with staff unless you can find your note pad that has fallen into a fold in your bed.

I remember thinking I would die of thirst in that hot February of 2014 when the air conditioner couldn’t cope. I fantasised all day about how I would enjoy a drink of water if they ever let me have one.

These long stays in hospital after a grueling surgery are probably more tolerable if you have a partner to sit by your side. Many of us don’t have this. We might be in the older age group where our partner has died or is unwell. Is there anyone apart from a spouse who has the time or will be there by your side on an ongoing basis?

My thing about these all day surgeries is that the patient is subject to a huge amount of anaesthetic and morphine and masses of antibiotics. God knows what else. It’s a horrible time, probably similar to all major surgeries but with an extra cruel twist or two. 

Loss of basic functions after surgery

People lose their voice boxes, parts of their tongues, their jaws, and sometimes the nose, an eye, an ear. What follows is a battle to become socially acceptable despite scars and losses. It’s bloody hard.

I’m quite a fragile flower in some ways. I shut myself away for months after my last surgery because my lower lip had collapsed and I had no top teeth. My speech was slurred. The  dental plate was uncomfortable and needed to be taken out at regular intervals.

When I was younger I dreaded getting breast cancer or bowel cancer. I hate what breast cancer does to people but oh how nice it would be to hide our cancer under our clothes and go back to work or social events, able to talk and eat normally.

Chemoradiation

I’ve almost run out of energy to write about chemo and radiotherapy, also very common treatments. Most people have radiotherapy as an insurance policy after surgery and people with HPV throat and tonsil cancers usually or often have chemo to soften up the tumour and radiation to blast it. 

My radiation was adjuvant only and not too bad although accompanied but the usual extreme pain, loss of taste, weight loss etc. For me, it wasn’t as bad as surgery.

I’ve seen other people go into a sort of tunnel of pain for a few weeks and very slowly come out of it into normal life with permanent effects like dry sensitive mouth, swallowing problems and dental decay. The dental decay seems less severe these days in the younger patients, as patients are better followed up and educated. 

HNC patients are known to suffer more depression that patients from other cancer groups because HNC is so visible and affects speech, eating, appearance and socialising. A significant proportion suffer from some sort of PTSD because of the rigours of treatment, especially being bolted down by a mask each day for 30 to 40 days.

Head and neck cancer can lead to isolation. We are herd animals and if we are deprived of social contact we can wither away. 

It was worth it though and I consider myself lucky.  I can still talk, smile and eat some foods. I do think, however, that a LOT of people would be horrified not to be able to bite and chew, Never again being able to pick up a piece of food and eat it. Unable to eat socially apart from in a VERY limited fashion. No viable bottom lip – not that I ever wore lipstick.

The surgeons and oncologists who treat us are awesome. We might get grumpy with them if they are not good communicators or feel as if they didn’t allow for optimal reconstruction but without the research and learning that has gone on over the last fifty years or so, where would head and neck patients be? I was so relieved to learn that my tongue could be reconstructed. My body didn’t mind giving up some wrist or thigh flesh to bridge the gap.

There is a greater need for follow up to help us deal with the after effects, though.