Sororal love

I don’t have any siblings. I’ve never minded (probably because I don’t know any different) and have never felt as if I’ve missed out on anything.

He has two sisters – one younger, and one older. Now, while I understand they love each other, I can’t get my head around how dependent the sisters seem to be on him. I don’t understand how he is almost deified by them. It seems weird and a little creepy. When he was first diagnosed, the younger sister took a couple of weeks off work as she couldn’t cope. Now, even though he’s on the mend, the older sister isn’t sleeping. When pressed on the reason, the mother said it was because the older sister was worrying. I don’t get it. I don’t understand I don’t think I’m ever going to bother trying, to be honest. Let them be weird if it gets them through the day.

No, the real reason I’m pissed off today (seriously, just the smallest things are sparking me off at the moment – I must be an absolute joy to be around. Good thing is, I have only the cat to judge me) is to do with visits.

I know, this seems like a rather petty thing to be pissed off about, but there we are.

The fact is, visits are tiring. Having to a) be awake and b) explain the same things over and over to different people is tiring. For some reason, I seem to be the only person who understands that (or, if others understand, they don’t seem to care that much).

My frustrations at the moment are caused by two main things. 1. The number of visitors he’s having in a single day and 2. the fact that no one seems capable of planning anything.

First rant: the number of visitors

He has a steady stream of visitors who pop in, when it suits them, to say hello. This is LOVELY. It absolutely is. I’m secretly proud of how loved he is. I am not saying that I should be the only one who’s allowed visit him, no.

However, I really feel that we should try and restrict the number of visits so he doesn’t have 15 people descending on him in an afternoon. He’s too nice – he’ll never say no to anyone, no matter how he’s feeling. I’m worried that this’ll have a negative impact on his recovery.

Rant number two: the lack of planning

I’m a planner. I like plans. I like systems. I like schedules. I don’t like it when other people don’t have plans or don’t see the need for plans.

I try and let everyone know when I’m planning on visiting him so that they can go and see him another time. Over the last couple of days, however, I’ve been expected to change my schedule to fit in around other people. “I’m going to go in at 2pm today,” I will text. “We’re going in at 2pm,” will come the reply from one sister. “His grandmother and I are going in at 3pm,” comes the response from another.

Today I had planned to see him only to be told that he’s got 4 people visiting already. None of them will cancel their plans and so now I’m in the situation where I have to tell the person I love the most in the world that I’m not coming in to see him. I’m trying to explain that it’s not that I don’t want to come but that I want him to get better. To get better, he needs to rest, not have to deal with a queue of visitors.

Of course, what I don’t tell him is I’m sitting here close to tears in frustration and anger that, once again, I am making concessions and sacrifices that no one else seems to want to make.

I miss out, again.

 

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My brain is stupid

He continues to make absolutely stunning progress. This is the third day after his operation and he’s sitting in a chair by the window, talking. TALKING! Yes, he sounds a little bit like a robot as he talks through the tracheo, and yes, he’s not speaking English yet (TIL, English has sounds in it that French doesn’t – think “th” and “sh” – that are very hard for people with low mobility in their tongues to say).

I’ve just left the hospital and I feel… despondent. Weird. Shunned. My brain is being a pain in the arse, in other words.

But, this is the place where I get all these brain farts down on paper so they don’t fester and I don’t go to see him tomorrow feeling this shit.

So, why do I feel this crappy? Again, I went to go and see him with his mother. I like his mother, I do. But when we visit together, I take a back seat and let her chatter on when all I want to do (and this is a little weird now I think about it) is just sit and hold his hand and not even talk. Just be happy that I still have him. Obviously, with his mother there, that’s just not possible. So I sit, I smile, I ask the occasional question and I let the French wash over me. He sat, with a slightly glazed look on his face.

So, why do I feel this crappy? He told a friend to come and see him today. Theoretically, in the high dependency unit, it’s only supposed to be friends and family. That’s ok, the friend said he was a cousin. It’s nice that he gets to see his friend – he hasn’t seen him in a good long while (said friend doesn’t live here). They’re best friends.

So, why do I feel this crappy? His eyes lit up when he saw his friend. He smiled. I could see the old him. He couldn’t get rid of us fast enough. “Bye Maman,” he said. He spoke a few cursory words to me but his head was full of his friend.

So, why do I feel this crappy? I felt like a spare part. I felt like I wasn’t wanted, like he could have quite happily spent the time he was with me with someone else. I felt jealousy. Someone else was muscling into my space with him – this little bubble I’ve somehow created (out of nothing, I hasten to add – what kind of moron am I?) in an incredibly short amount of time where I am the one who cares for him.

This is all bullshit. I don’t have the exclusive rights to his time, his love, or his smile. I am not the only one he cares about. Our universe does not consist of just the two of us.

I guess what I’m trying to tell myself here is to get over it. Because he’s happy to see his friend and doesn’t want to talk to his mother anymore, it doesn’t mean he loves me less.

I am an idiot.

Mild relief

Isn’t it funny how your brain can build things up and build things up until they’re a monster waiting for you to fight? It’s impossible to think that you’ll ever beat this gorgon in your head. You try and prepare but ultimately end up feeling defeated even before you’ve begun.

That’s how I felt yesterday.

I’d done my reading, and I thought I knew what to expect when I made my way into the high dependency unit. I was wrong.

Yes, he was lying there surrounded by machines and tubes. Yes, he was swollen, his arm was in a cast, and there was a Frankenstein monster-esque scar running from ear to ear. And yes, he looked small lying there (as all people seem to do when lying in hospital beds. Are they bigger than normal beds or is it the situation?)

But he was also unequivocally, undeniably, wonderfully, HIM. Although granted, a him who was dressing up as Desperate Dan for Hallowe’en.

pg-24-desperate-dan-pa

As we came into the room the machines started beeping as his heart rate and blood pressure increased, but he smiled at us with his eyes.

He looked so… well. So strong.

He took us through what the doctors had said through a combination of sign language and scribbles. We ooo-ed and ahh-ed over the criss-cross of staples in his neck. And then he showed us his new tongue. It’s incredible. It’s astounding. It’s… a tongue. A real tongue (albeit a swollen one)

And it moves! Modern medicine is a miracle. (I found out later that while they think they were able to get all the tumour out and cut out about 3/4 of the tissue, they managed to save the base of the tongue which does a lot for mobility).

I can’t begin to tell you how much of a relief it was. Granted, he was incredibly tired still, but he wasn’t the monster I had built up in my head. We didn’t stay for too long – even the smallest things like writing tired him out – but those 10 minutes did more for my mental health than countless hours on the phone with friends (with no offence meant to my friends – their support has been invaluable).

I walked out of that tiny little room and felt that a weight had lifted. I know this is just the beginning and, maybe, I caught him on a good day. But this first viewing gave me hope. Hope that in the end, no matter what he looks like or how ill he is, ultimately he is still the beautiful, funny, kind man I love.

Je suis fatigue

I don’t think I’ve ever felt so continually tired as I do at the moment. Despite sleeping well (something I try not to tell people lest they think something’s wrong with me – “Why is she sleeping? She should be up worrying?”) I still woke up this morning feeling like I’d been hit by a truck. Nothing in comparison to how he is feeling, I’m sure.

The sister called me last night at around 7:30pm to tell me that he had come out of surgery, was in recovery, and that all seemed to have gone well. By well, I suppose they mean that no additional complications arose and the operation passed by as it should. She sounded almost giddy on the phone. And the text his mother sent was joyous. But, as I heard the news and took it in, all I felt was a sense of fatigue and resignation as we move into the next stage.

I had a good cry down the phone to my father last night (and countless friends) as I tried to understand why *I* wasn’t doing cartwheels of euphoria. Shouldn’t I be thrilled that this first part, the dangerous part, is over? But no, all I can think about is the next step. I guess this is my way of coping. I have to keep reminding myself that this isn’t a competition. There is no winner of the “who loves him more” category. There is no such category. We all love him – me, his family, his friends. And he loves us back (albeit in different ways… at least, I hope so!) And, while we all love him, we all have different ways of coping with this thing we’re going through.

I am reserved, quiet, withdrawn while I try and process everything and plan for the future. His family are demonstrative, emotional, and impatient. I am slowly trying to learn that there is no one good way to be.

(side note: as my father rightly pointed out on the phone last night, I take after him in my outlook and, it seems, the family takes after my mother!)

I’ve just called the hospital. He passed a good night – well, as good as a night can be when you’re woken up every half an hour by a nurse poking your new tongue – and I can go and see him this afternoon.

This is the part that’s scaring me at the moment. Not for me, but for his family. Anyone who knows me in real life will know that I’m a planner. I’m a reader. I like to know things. And so, of course, over the last couple of days, I’ve been reading up on the operation, the side effects, and how he’s going to look and feel following such a major surgery. I am prepared (I think) to see a man bedecked with tubes and drains and machines. I am prepared (I think) to see a man who’s so swollen he’s bound to be almost unrecognisable. A man who won’t be able to close his mouth over his new tongue. A man who’ll be so tired and in so much pain that this visit is more for my own morale than his.

Today is going to be another long day.

 

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.

 

Stiff upper lip and all that

The British are known for their stoic attitude to most things. Your meal may be cold, tasteless, and, for some reason, hairier than Mr Twit’s beard but as soon as the waiter arrives to ask you how it is…

“Delicious,” you’ll enthuse. “Best thing I’ve ever had! Please sir, I want some more.”

I’ve come to realise this isn’t the way everyone reacts to bad news (something I intend to explore in another post)

This tendency towards fortitude, however, comes with its downsides. As the calmer member of the extended family, it falls to me to be a voice of reason. I am the one who organises, who gathers and disseminates information. I am the one who’s expecting to know what’s going on. I’m the one who’ll support us all through this.

And who is supporting me?

(oh god, is this going to turn into a whiny post where I feel sorry for myself? I sincerely hope not, for all our sakes.)

Let me put it another way.

I see it as my JOB to keep everyone going. To be composed. To gather the facts. To come up with plans. If not for me, for him. With everything that’s going on, he needs that still small voice of calm breaking through the cacophony of doctors, machines, family, and work.  He needs something solid he can rely on. And that’s me. And it’s not a task I’m shying away from. I don’t know any other way to approach it.

But sometimes, just sometimes, I need to vent. Which, I suppose is why when someone suggested writing everything down, I went to bed and my brain was buzzing with ideas, with things I wanted to say.

I find it very difficult to ask for help. The few people I’ve told about the cancer have been wonderful – offering moral, physical, and mental support. Which I, in turn, have rejected. Because it’s not who I am. I have some weird notion which tells me if I accept help I’ll be seen as not coping as being needy. Now, of course, deep down I know this is all bollocks but hey, you can’t help the way your brain thinks sometimes, can you?

And so here it is, my way of coping. My way of complaining without letting anyone know about it. My way of not being as strong as I like to pretend I am.

And I think that’s ok too.

(note: this post was written before we knew he was going in for an operation on Monday)