Meeting the team

Yesterday was A Hard Day (capital letters).

Even now, I’m not entirely sure where to start processing it. Writing the two last sentences alone has taken me about half an hour.

The day started out with us waiting, as so many days at hospitals do. He was frustrated. Having been told we were meeting with the surgical team at 9am, we were then given a series of misinformation (you’re being admitted today, you won’t be able to see the surgeon today etc) before the day finally started. A series of meetings with assistants, nurses, anesthetists, and the surgical team.

The tumour is bigger than we thought. When it comes to size (which is how they classify oral cancers) it’s a 4. That’s the biggest. It hasn’t metastasized but it’s incredibly aggressive and at a very advanced stage. It’s slowly making its way down to the lymph glands in his neck. On Monday, he will have a glossectomy – a 12-hour operation where they will remove a large part of his tongue and then reconstruct it using muscle, veins, and an artery from his arm. He will also have all the glands in his neck removed.

When he comes round from the anesthetic, it’ll just be the beginning. He’ll be in intensive care for around 4 days, and being checked every half an hour. Not only will they be washing out his mouth, but they’ll be checking his tongue to make sure that it has blood flow.  He’ll have a tracheotomy and a cannula for around a month. He’ll have drains on his neck for the lymph glands. He’ll have a scar running from ear to ear. His arm won’t heal properly for 6 months.

He’s young to have this operation. Very young. The average age for diagnosis of this type of cancer is 62. He is 32.

The doctor gave us the statistics for full recovery from the operation. They don’t make for pretty reading. 50%. There’s a 1 in 2 chance that the operation will work and he’ll be back to full life expectancy. The surgeon was incredibly quick to reassure us that youth and previous good health was on our side.

It was a sad and frustrating day. Following my “I’m so strong” post, yesterday I wasn’t so strong. Yesterday I cried. A lot. But, of course, I cried on my own, away from anyone who might be able to see me or give me comfort. (Apart from with him. I cry in front of him and have no embarrassment about doing so. I know he doesn’t mind)

I think the thing that got to me the most was the language barrier. My French is ok. I can talk to friends, I can order in restaurants, I can give directions. When it comes to understanding cancer diagnoses, however, it’s not something that I can find in my little French dictionary. I had so many questions which I wrote down and which were then translated into French with the help of him and his sister’s girlfriend. But, once it came to sitting in the room with the parade of medical staff, I retreated. I listened, I tried to translate, I got things wrong, I got things right, and everytime anyone asked me if I had any questions, I would mutely shake my head.

It was a long day. Last night all the friends gathered together for a BBQ and petanque session. It was a chance for him to tell his friends the full extent of the diagnosis and enjoy what might be his last night having fun for a good while.

I left early. I needed to recharge.

 

The journey begins

They’ve been there for months. Years, he says. A couple of small ulcer-like things on his tongue. Just sitting there, not doing anything. Until six months ago.

The change was gradual. I noticed he was eating with a little more care. Sometimes, he struggled to pronounce certain words. But hey, don’t we all when we’ve got an ulcer?

Then, quite suddenly, the change was acute. He drank and ate out of one side of his mouth. And then he stopped eating very much at all. Occasionally, he’d yelp, gasp, and hold his jaw, tears in his eyes. In the morning, I’d hear him almost sob with pain.

“Have you gone to the doctor?” I’d ask, all naivety. Doctors can solve everything.

“They gave me a cream, it’ll be alright.”

It wasn’t alright.

Three weeks ago, he finally had the appointment. They cut out three chunks of his tongue. Just to be sure, they said, they wanted to check for everything.

I tried my best to resist the lure of Dr Google but, of course, my head was soon filled with diagnoses. Flesh-eating bacteria. A cold-sore like viral infection. Cancer.

Cancer.

We got the results back two weeks ago. Two little words: “cancerous cells”. It sounds so small, so easily dealt with. Cells? They’re tiny, what harm can they possibly do?

It turns out those tiny little cells can quite easily turn your life upside-down.