by Raz Shaw
I had ordered them to stay away but they came anyway. Of their own accord. And they weren’t tears, they were oceans and they thrashed against my aching bones and started to drown me. And I didn’t fight it. I knew I didn’t have the strength. And anyway drowning would end the pain and that can only be a good thing. But they wouldn’t stop. The tears wouldn’t stop. And the pain wouldn’t stop. And the choking wouldn’t stop. I managed to pull myself together enough to phone Paul – him from the Paris shower shampoo story. Paul had just been here this afternoon and, quite frankly, he is one of the greatest. And he listened to the wailing and the grief and the self-pity and the clichés, and he said all the right things and just let me verbally vomit it all out. The wrenching vomit seemed to release the grip. Not totally. But enough to allow me to take back a modicum of control.
When I put down the phone, I could at least breathe a bit. Just a bit. The pain was still enveloping but it had left just a tiny bit of room. A tiny bit of room for me to try to get me back. And I took to my bed and the calm gently began to resurface. And the calm very slowly led to a renewed feeling that can only be described as joy. Joy that an addict feels when they admit to themselves that they have hit rock bottom and the only way forward now is forward.
I could breathe and I was certain that I would never feel pain as bad as that again. I was certain that I had dealt with the worst and beaten it down. I had no idea what was to come but I did know that, whatever it was, after this moment I probably had the strength and the insight and the breath to deal with it.
And some sort of serenity after the epic, emotionally charged storm began to emerge. And what does a person most need at such a time?
Golf.
That’s right, I said golf.
Ryder Cup golf to be precise.
The Ryder Cup at Oak Hill, Rochester, NY, to be totally exact.
I loved the golf. Still do. Funny but true. Especially the Ryder Cup. It entrances me. The Ryder Cup is escape in its purest and most brilliant form. And it’s 1995 and Europe have started to be really good. And it’s a team of champions. The beautiful Seve, the not so beautiful but ever heroic Monty, the cunty but brilliant Nick Faldo, and that cheeky old dog from Largs, Sam Torrance.
For those of you who haven’t a clue what I am talking about right now, shame on you.
And that was the other worst thing about being in hospital over this weekend. I was going to miss the Ryder Cup. And at this precise moment it wasn’t just about the golf itself, it was about a need for a distraction of distinction on the scale of gambling or the OJ trial. My genius mum had a plan. She went out and bought me a little mini earphone AM radio thingy. Now, these days there are so many devices and apps I could find to listen to it with, but twenty-odd years ago there wasn’t much choice, and a little mini earphone AM radio thingy was as good as anything.
And so I took to my bed.
Just as that calm was resurfacing, a new pain was rising. The pain of Ryder Cup anxiety. I lay there and magically got lost in the golfing ebb and flow. And I was transported once again. It was going to go right down to the wire. Seve lost his match, but Ryder Cup King Monty, cunty Nick and big Sam all won. There was just enough time for one final cliché on this momentous day. It was time for an unsung hero to bring the cup home. When Jay Haas missed his putt on the 18th, Philip Walton was that hero and in Rochester, NY, the European Ryder Cup team exploded with elation and relief.
Three thousand four hundred and sixty miles away at 1 a.m., in his bed at the Royal Marsden Hospital in South Kensington in London, a young alien cancer boy released his final outburst of emotion for the weekend. An outburst so loud and impulsive that it not only woke up half the fellow patients on his ward but induced more than one nurse to come running to his bedside to see what was wrong. Nothing was wrong. The European Ryder Cup team had defied the odds and won.
And after the tumultuous cliché-packed weekend cancer boy had had, he felt ready, willing and much more able to do the same.
RATION THE RELATIVES
Having my amazing friends come and see me after the wedding and my unexpectedly emotional response to their leaving made me realise something fundamental. If I don’t want to see a particular person when I’m fit and healthy, do I want to see that particular person when I am in a hospital bed with a life-threatening illness? No. Thank. You.
Listen up!
If you are thinking of going to visit someone in hospital, think long, think hard:
1. Are you close? By that I mean, are you actually close? Think long and think hard. Is Ill Person someone you hang out with on a regular basis? By that I mean, is Ill Person someone you actually do hang out with on a regular basis?
2. If Ill Person is a relative, is he/she someone you look forward to seeing on family get-togethers, or is he/she someone you dread being left alone in the same room with? Think long and think hard.
3. What does Ill Person really think about you? This is the moment to have a real proper look at yourself. Look long and look hard. Are you looking? Imagine what Ill Person might actually think if they knew you were coming to visit. Go on, really think about it. Be honest now. Will they dread it? Will they? Is the answer a big fat yes and you just can’t admit it?
4. Every family has a nightmare relative. Are you the nightmare relative? Think long and think hard. Is it you? It IS you, isn’t it! Face it! If you want to show compassion, if you want to show Ill Person that you are thinking of them, DON’T VISIT. That’s a ton of compassion right there.
If you answer the wrong way to most of the above questions, tell Ill Person that you are thinking of them. Tell them you were thinking of visiting them but you thought better of it. You thought Ill Person would appreciate some peace and quiet. Then you’re quids in. You have outed yourself as a nightmare but in the same breath shown you are blessed with self-awareness. You, the nightmare, have made yourself feel good and you have made Ill Person feel good too. By not coming. Good job!
Even if you’re not the nightmare, your prime reason for visiting Ill Person should be for them, not for you. That’s a really complex consideration and not easily defined. It’s like giving someone a present. We give someone a present because we want to make someone happy. The happier we make them, the better we feel about ourselves so inevitably we get quite a bit of reflected glory from it. If we give that person a present and they love it but they don’t say so and don’t say thank you, does it take the shine off it somewhat? I think it does. It probably shouldn’t, but it does. Because we are not given the gift of gratitude and we haven’t been granted the opportunity to be puffed up by the knowledge that we have been generous and made someone else happy.
So when you are thinking of visiting – more to the point, when you think you want to visit – just stop for a moment and consider if your visit will make Ill Person’s day better. If you truly think the answer to that question is yes, then do it. Make that visit.
Of course, you might be delusional. A lot of us are. You might believe that you don’t need to think about whether you would make Ill Person feel better by visiting them because you know that you will. When the truth is you won’t.
And of course delusional people don’t know they’re delusional, otherwise they wouldn’t be delusional.
So if you’re reading this and you have thought about it and think: ‘Yes, my visit will make Ill Person feel better, definitely,’ you may be delusional or have delusional tendencies, so think again. And again. If the answer’s still yes, then you are either blessed with self-awareness or you aren’t. I can’t be sure. Nor can you. But Ill Person knows. Oh yes. Ill Person’s heart either sinks or soars when you walk up to their hospital bed.
Look hard at Ill Person’s smile. Is it fake? Is it forced? If you think it is, don’t stay for long. That’s all I’m saying. I wouldn’t dream of accusing you of being delusional. Just don’t stay for longer than a minute.
If you walk up to Ill Person’s bed and they don’t even crack a slight smile, it is
a good sign. It often means that Ill Person is indeed really happy to see you. You are someone they feel comfortable with. Someone they don’t feel they have to fake a smile for.
Of course, sometimes a frown means a frown. Sometimes a frown means ‘NO, NO, I can’t believe you have visited me and I sure am not going to make any effort to hide my disdain.’
It’s a complex thing. Visiting etiquette.
When I was playing the part of the Ill Person, my rule was always that I didn’t want anyone visiting me who I felt I had to make any kind of effort with. Doing cancer takes enough effort as it is; I didn’t need to be forced to make more effort than I had to.
Sometimes, however, in the role of Ill Person, it makes you feel good if you make the person visiting you feel good. The knowledge that that particular visitor had to force every fibre of their being to face up to this cancer thing that you have in order to come and visit you is often humbling. They were backer-offers who fought themselves and didn’t, in the end, back off. You might not be certain that that’s the case but you can detect it and, when you do, it feels good. Of course, that soon wears off if that visitor is an absolute fucking bore.
And as the Ill Person, there’s one skill you need to really perfect: how to make your visitor leave without making them feel too shit.
HOW TO MAKE YOUR VISITOR LEAVE WITHOUT MAKING THEM FEEL TOO SHIT
It’s only natural that a visitor brimming with delusion will force you to come up with a cunning exit plan for them. A wanted visitor either knows the right to time to say adios or is quite happy for you to tell them directly. And that’s the point. It’s just easy. And that’s all Ill Person wants. Ease.
Sleep is a fine ‘please leave’ tactic that has been applied successfully for hundreds of years. It works like this:
The unwanted visitors arrive. (Delusionals don’t hunt alone. They need a companion to egg them on and confirm their delusion to.)
Ill Person is lying on the bed.
The Delusionals sit too close to the bed and are drivelling on about some inane nonsense or other.
Ill Person is fake smiling but has zoned out years ago.
Ill Person closes their eyes.
Ill Person mumbles in an incoherent and ill way.
Ill Person tosses a bit. Ill Person turns a bit.
Ill Person allows the mumbling to gradually disappear.
Ill Person starts to heavy breathe a bit.
The Delusionals are still droning on.
The Delusionals stop droning on. Eventually.
Ill Person can feel the Delusionals’ stale breath far too close.
The Delusionals are still invading Ill Person’s ill space.
‘He can’t keep his eyes open, poor thing, shall we go? We should go. Um… ER… ill person, ill person, we are going now, we’re gonna go. So… Hope you feel better… erm, enjoy the grapes and the word puzzle book thing… erm… bye, ill person... we’re off… bye, ill person. Bye.’
Ill Person times it perfectly. Just as the Delusionals have turned for the door, Ill Person mumbles in a semi-sleep voice: ‘Bye… thanks for the grapes and the word puzzle book thing.’
THE DELUSIONALS EXIT HOSPITAL LEFT
And they’ve gone and you managed to exit them without making them feel too bad. What am I saying? They’re delusional, they don’t feel bad at all. They feel great.
The irony is that when you have ‘wanted’ people to visit, you can genuinely fall asleep and it isn’t awkward at all. In fact, ironically, what you want is to be able to fall asleep for as long as you need to and your visitor still to be there when you wake up. And you not to feel guilty that you have fallen asleep on your visitor. While you’re asleep, your wanted visitor will happily read a magazine, go out and make a phone call, have a cigarette, have a coffee, have a wank, even pop out for a walk and come back. And wait till you wake up. Your wanted visitor knows that you want him/her there when you wake up. Delusionals take sleep as an affront. It’s a sign that they should leave. So they sort of do know that they’re not wanted. They are Delusionals in denial!
BACKER-OFFERS
Conversely, there are friends who you want to be close to you at this time but who for whatever reason can’t deal with it and just back off. I had a close friend at the time who was one of the first people I told about my diagnosis. I phoned her on her mobile. She was driving. I said she should pull over as I wanted to tell her something and I didn’t want her to be driving when I told her. She pulled over. And I told her. Unusually for me, I was fairly joke-free about it.
I told her I had cancer. A thing called non-Hodgkin’s lymphoma. A cancer of the lymph glands.
I told her that the doctor had said that if you were going to get cancer, this was a good one to get.
I told her that the survival rates are good. Seventy to 80 per cent.
I told her not to worry.
There was a long silence on the end of the phone.
Followed by audible sobs.
She told me that she didn’t know what to say.
She told me that if I needed anything, she was here for me.
She told me that if anybody was made to beat this thing, it was me.
There were more sobs.
She told me to take care. She told me she loved me. She hung up.
I didn’t hear from her again for over two years.
I make no judgement. I understand. I really do. People back off. They do. It can be somewhat disappointing. And sad. But that is life.
Even my mother had one or two of her friends who didn’t quite know how to deal with me being ill or how to talk to her about it. They went silent. Rather than have to confront their own discomfort. She found that odd. She also found it a bit sad. And it is a bit sad. But it’s also very human. It is too much for some people. They feel so out of their depth that to retreat is the only option. I honestly don’t think they know they are doing it.
When someone that we love spending time with – and we feel would be a tonic at a time like this – retreats rather than comes forward, we can’t help but feel confused, frustrated and a little bit betrayed. We can’t. But we also mustn’t let it fester. We have to remind ourselves that some of those people have probably been sitting at home agonising about how best to get in contact. And it’s paralysing them. To such a degree that they end up doing nothing. The nothing they are doing is eating them up with guilt.
I heard about numerous people who wanted to send a card to me but didn’t because they had wrestled for ages to find the right thing to say. And couldn’t. So they eventually gave up. Which is understandable.
It is easy to think that in these circumstances there are right words and wrong words. There aren’t. Any words will normally do. Just the knowledge that you have glanced a thought my way is enough. So the ‘I don’t know what to say’ notes and the ‘I have no words’ notes are just as comforting as something more eloquent.
Of the cards I did get, I particularly liked those which used some kind of gambling metaphor.
‘My money’s on you.’
‘You’re a sure bet for recovery.’
They took my addiction and threw it right back in my cancer face. Now those are my kind of people!
Dealing with other people and visitors when you’re ill is indeed a complex and often challenging thing. You do have to take care of the carers sometimes. It’s part of your job. And it is complex.
For instance, no matter how open you try to be or want to be when you are ill, no matter how inclusive you are, it seems really wrong and selfish sometimes to tell people of the loneliness that is eating away at you. I don’t exactly know why. Someone has put themselves out physically and emotionally to come and see you while you are sick. This might be one of the hardest things they have done in a long time. Every fibre of their being was telling them that they couldn’t face it. It was too hard. They longed to back off. But, they fought that particular battle with themselves and won. They made it here. By your cancer bedside. They
feel good about themselves for doing so. For wrestling with their own taboos. And facing up to them. To you. When they make it to your bedside, you tell them that you feel singular and alone. Well, thanks for that. They love to hear that their visit hasn’t helped you one jot. Great. Fucking great. They leave feeling really shit about themselves for being unable to make you feel even a tiny bit better. Brilliant!
And so you spend a lot of energy creating an environment in which the people you want visiting you feel comfortable enough to actually visit. And sometimes the act of a person pushing past their desire to back off and uncomfortably finding themselves by your bedside not quite knowing what to say is not annoying at all but actually beautiful and replenishing.
Two such people were Carla and Katie.
Carla I knew better because we’d had a brief work fling about a year before all this cancer stuff happened. Katie was also someone I worked with. Katie was strange. I quite liked strange. Katie and Carla were friends.
The first time I had been admitted to hospital was a dark time. Confusing. I didn’t want to be there. Everything about it was bizarre and uncomfortable. I was in a ward. I was surrounded by ill people. The place stank of illness. I didn’t want to be there. Did I say that already? I hadn’t quite yet figured out how to be in that kind of environment.
I shall grimace, I shall cry. I shall sulk. That is how I shall be.
It was 3 p.m. I was dozing on my bed. I grimaced as I dozed. I had my clothes on. I wasn’t going to wear pyjamas. It was daytime, for fuck’s sake. I was dozing and sulking. I opened my eyes. There were two figures at the end of the bed. There was some kind of gel over my POV movie lens. I was in a doze and now I am in a haze. It was a classic post-doze-haze! It took quite a while for the haze to dissolve.