Going up the down escalator

He’s been in the operating theatre for around 2 hours now. Only another 8-10 hours to go.

The first thing they will have done is the tracheotomy – that tiny little cut and tube that’ll allow him to breathe until he learns how to do it again himself.  The two surgical teams will then spring into action.

One team will be working on the tumour-ectomy (which, I’m sure, is just a word I made up) and removing the lymph glands in his neck. The other team will be working on his arm, cutting out the muscle and skin for his new tongue as well as the vein and artery for circulation (thought: will he have a hairy tongue?). Bits will be attached to other bits. Other things will be cut and replaced. Tubes will be attached and machines will be hooked up.

At around 9pm this evening, I hope to get a text telling me all went well.

In the meantime, I am frustrated and angry. I’ve just learnt that the sisters went to see him at 6am before he went into surgery. I understand they’re his family, I get that. I’m just annoyed that they didn’t even bloody tell me. Ask me whether, just maybe, I might want to go and see him before he went under.

And it worries me. My mother has been worried on my behalf that I might be pushed out because I’m not “family”. I reassured her all would be well. All I’ve heard over the last three years is how I’m part of the family. These last two weeks, it’s been my role to coordinate, and plan, and ferry, and explain. I thought I was firmly on the “family” list. Apparently not.

Granted, it’s the younger sister who just mentioned it to me. It may be that she went on a whim and didn’t think that other people might want to know. I know she’s been hit hard by the news and hasn’t been coping particularly well. She tells me she just went in to “see him, give him a kiss before the operation”. I need to remember how young she is (not in age, but sometimes in maturity) and that she’s not sure how to deal with the whole thing. I pray for patience and understanding.

I don’t think she realises that it’s exactly the kind of thing I would have loved to do this morning. That turning over and not seeing him there created a gaping hole in my morning routine. I’m afraid I was rather short with her over text message when she told me. “It doesn’t matter” I said, “I’ll see him some other time.” She tried to justify it. “It was early, we couldn’t sleep, we didn’t know whether we’d be allowed to.”

It just highlights the massive gap I suddenly see. A gap which until this morning I didn’t think existed. It’s hard to put into words (but since the whole purpose of this writing lark is to get my head in order, I shall try) but it’s almost like…

She asked me how I slept last night. As it happened, I slept like a baby – I haven’t slept so well in ages. So I told her that. And now I feel guilty for sleeping. Should I have stayed awake all night worrying? The rational side of me mocks how stupid that is. What will it change? Will your tiredness help you support him? Is this a competition to see who’s in the most pain over this whole situation?

No. I slept because I was tired. Because there is nothing I can do now – it’s in the hands of the hospital and of him. I need to make sure I’m fully functioning and ready to face whatever’s coming.

I feel like the gap that’s opened up is about coping strategies. The family copes in one way, I cope in another (helloooo blog!) and neither is right or wrong but I feel like they’re judging me for not being in floods of tears the whole time, for sleeping at night, for getting on with my day job.

And so I don’t know where I am. I just have his messages to me last night before he fell asleep.

Sleep well tonight my love

Be brave for the next days
I’ll do my best to get better as soon as possible

Even in his pain, this wonderful, selfless, kind man is thinking of me.

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.


Speedy Gonzales

About an hour after I wrote the last post, we both had our first proper cry since this whole thing started. Him, because the PET scan was more difficult than he thought it would be. Me, at the shear frustration of wanting to be able to help him, not knowing what to do, and consequently getting annoying with him when he couldn’t tell me how to help him. It’s also tough when the whole family is always telling me “you’ll look after him, won’t you”. Well yes, I will. But how?

It’s the first time I’ve shown him how I’m feeling about the whole thing. The first time I’ve allowed him to see even a tiny chink in the armour. As a friend notes, it was probably a good thing for both of us. For me, it was a release and for him, it shows him that he’s not the only one struggling.

Things are moving along quickly now. We had another call from the hospital last night. His meeting with the specialists has been moved forward to tomorrow and then on Monday, he’ll go in for his operation.

The details aren’t clear yet (and I presume it’ll all be made clear when we talk to the consultants tomorrow) but it looks as though they’ll be taking out half his tongue (half!) and stripping his lymph glands. It’ll be rebuilt using the muscles in his arms (personally, if I were the doctor, I’d go for his thigh or calf muscles… he has more definition there!)

He’ll have a tracheotomy to breathe for the first week and, I assume, he’ll be fed through a tube for the foreseeable.

He has finally admitted he’s scared. And so I am.

I know this operation is a GOOD THING. I know it means they’re taking out the cancer and that this is the first step on the road to recovery. I know that it’ll be difficult and a long time until we’re back to normal. But it’s scary.

It’s scary that the operation will take nearly 12 hours. It’s scary that he won’t be able to talk or breathe or eat on his own. It’s scary that I don’t know how I’m going to be able to support him.

I’ve made the hideous mistake of looking things up (now that I know what’s going on) and that is making things worse, if possible. This is a big surgery. He’s going to look different, he’s going to sound different, he’ll have different tastes, it’s going to be a LONG LONG journey.

But the only thing that keeps me going at this stage is that I have him, and he has me.