Tag Archives: polyglandular failure

Mel Moon – a Sick Girl dicing solo with death away from the Edinburgh Fringe

Mel at home yesterday, with husband Chris

Mel at home yesterday with husband Kris

Comic Mel Moon is being admitted to hospital this afternoon and she is having her throat cut in the operating theatre at 9.30am tomorrow morning.

The Edinburgh Fringe is going to be even more chaotic than usual this year, with some shows not appearing at all and a lot of acts performing at different times and in different venues to what is billed in the official Fringe Programme – all because of the Cowgatehead debacle. (See past blogs if you have to.) But some shows, dates, times and performances have changed for other reasons.

Back in a blog in February this year, Mel talked to me about her show Mel Moon Dicing with Dr Death which was to be co-presented with Philip Nitschke of Exit and would discuss her (since changed) decision to commit suicide with advice from Exit.

Now Philip Nitschke is billed as doing the Dicing with Dr Death show solo.

Why the change?

“These things happen,” Mel told me, when I went to her home in Sussex yesterday afternoon. “As is often the case when you work with someone you don’t know, things don’t always work out the way you would hope… I dunno… We were so different. So very different. Even down to some of the things we believe in. Now there are two shows. I wish him the very best of luck. He has put a lot of money into it. We got the Caves for him as a venue and he’s staying there.

“I am doing my show at the Counting House, 8th-30th August at lunchtime – 12.15pm – thanks to the amazing Alex Petty, who ran to my rescue and offered me a fair old chunk of venues.”

“So you,” I said, “are doing your own solo autobiographical show on much the same subject. Which is called…?”

Sick Girl – same title as the sitcom Kate Copstick and I are working on for a TV production company.”

“And now,” I said, “you are going into hospital for an operation…”

“Yes. I’ve been through a bit and I’ve never really been scared before – not scared-scared… but… I spent a good chunk of time wanting to die. And now I don’t want to die. So it would be Sod’s Law if this was the thing that did me in.”

“The operation is going to take nine hours?” I asked.

“That’s the maximum,” Mel explained. “They told me the minimum will be 5 or 6 hours but to expect 9 because of the complications I bring to it.”

“Why the operation?” I asked.

“It’s a combination of factors. I had a car accident in 2008 which caused a bit of disc damage in the neck. Three or four of them dislodged, but it was fine. It was no big deal. I was young, I had a few injections for pain and eventually it stopped hurting.

“Then I got this disease – PGF (polyglandular failure) – and started living off steroids… What do steroids do? – They weaken the bone. In high doses, like I’ve been taking for the last three years, they certainly do. So I’ve been taking a couple of other drugs to protect the bones, but it’s not done enough because there was a weakness there already.

“So all those little discs have started to break up and now they’ve taken ones either side with it, so I’ve now got a neck that is slamming on all the different root nerves. So I don’t feel my hands. They’re just numb. I have no real grip and, if I hold my hand in any position for too long, it starts to twitch. And now I don’t feel anything in my lower arms, so I have burns on my arm where I have leant on the iron without realising.

Burns and a cut on Me Moonl’s arm

Cut & burns: Mel’s un-feeling arm and elbow

“There’s no point them doing a bone graft because I still have to take the steroids and, in a few years time, the same problem would happen again. So they’re going to take away the damage in the neck and rebuild the neck using some titanium rods and some of these… I saw one… it was like a blue disc. I don’t think the discs are titanium, but I’m not sure.”

“The rods are replacing a bit of your spine?” I asked.

“I guess so,” said Mel. “The truth is I have not pushed for too much information.”

“I don’t think I would want to know anything,” I said.

“In January,” explained Mel, “I went for what I thought was a routine appointment to discuss having the next injection, because I’d been getting a bit of pain. They’d been giving me injections in the neck. Even though I didn’t feel my fingertips, the nerve pain deep in my arm was bloody awful.

“It was an orthopaedic surgeon and he said: I’m really sorry, but the option of giving you injections has gone. We need to operate and we need to do it quick. If you have it done, we can’t guarantee that the problem will go away, but we can guarantee it won’t get any worse. If you don’t have it done, we guarantee you will lose your hands within a year.

“So I signed the form, got out of there, cried my eyes out and made arrangements to have it done. It’s my throat they’re cutting. That’s the bit that gets to me.”

“They don’t,” I asked, “go in via the back of the neck where the discs are?”

“No. They say it’s safer to go round the front. That way, they’re less likely to hit the spinal chord. They cut on a crease in the neck and I’ve got loads of them from my fat.”

“Worth it, though,” I said.

“There are two incentives for the operation,” Mel told me. “One, obviously, is I don’t want to lose my hands. The other is I would really like to reduce the amount of morphine I take.”

“How much morphine do you take?” I asked.

“A shitload. I divide it between two doses. I’m on slow-release morphine. So, in the morning, I take between 70 and 90 milligrams. And I take some at night. So between 180 and 190 milligrams a day.”

“And you still get some pain?”

“Yes I do. I have different type of morphine for breakthrough pain but, if I took that as well, I wouldn’t be able to talk, so I use codeine, which I find as beneficial.”

“How long will you take to recover from the operation?”

“Well, they want you out of there as bloody quick as possible. The SALT team (Speech And Language Team) come to see you the next day and, as soon as you can speak, swallow and have your drains out, you can go.”

“I would keep schtum,” I suggested.

Mel Moon performing on stage

Mel Moon performing on stage

“No, I want to get out of there as quick as possible. The hospital I’m in is in Haywards Heath. But they’re moving to Brighton so, if I don’t recover in eight or nine days, I’ll be moved as well and I don’t want that.”

“Have you a poster or flyer for Edinburgh yet?” I asked.

“No. I thought I was doing the show with Dr Death, but now I’m doing my first solo show with no sponsor, no poster, no flyers. I don’t know how I’m going to pay for anything, including my accommodation, but the Independent newspaper asked me to write an article for them.”

“About the disease?” I asked.

“About everything that’s happened,” said Mel. “I was so excited. It should be published next week.”

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Filed under Comedy, Medical

‘Sick Girl’ Mel Moon Dicing with Dr Death for Edinburgh Fringe Comedy

Mel Moon with her Bassett hounds

Comic Mel Moon at home with her Bassett hounds yesterday

In this blog last month, critic Kate Copstick mentioned that she was involved in an Edinburgh Fringe show about suicide with Philip Nitschke of Exit and stand-up comic Mel Moon who, Copstick said, “suffers from a horrible endocrine disorder. She joined Exit with a view to topping herself before she turned into a puddle.” So obviously, yesterday, I chatted to Mel Moon.

“What’s your disease?” I asked.

“PGF – polyglandular failure, but mine isn’s auto-immune.”

“POLYglandular failure” I said. “Every bleedin’ gland?”

“It’s like a big series of collapses,” explained Mel. “It basically means my endocrine system shut down.”

“And,” I said, “this is curable because Western medicine can cure anything…”

“No,” said Mel, “it’s not curable.”

“But it’s not necessarily terminal?” I asked.

“It kills,” said Mel, “but it’s not terminal because ‘terminal’ means there’s a natural progression to death whereas, with my disease, it would be very sudden. It would just be BASH! – Game over. My life is shortened as a result of the medication I take. That’s just the way it is – part of the risk of taking the injections that mean I’m able to get up and about.”

“And your partner Chris gives you 14 tablets every morning?” I asked.

“Yes, to get me going and then I take over. In the afternoon, I take another 6 tablets and then another 10 at night. And I also have an injection at 6 o’clock every day.”

“In your bottom?” I asked.

“No. The behind injection is the emergency one, which is a bit weird – I’ll be incoherent, dizzy, babbling, unable to make sense, but I’ve got to inject myself in the behind. Whereas the other injection that’s not life-saving is dead easy.”

“And your Edinburgh Fringe show in August is with Philip Nitschke, who is the founder of Exit?”

“Yes.”

“Not to be confused with Dignitas in Switzerland?” I asked.

“You don’t go to die at Exit,” explained Mel. “They advise you on the tools to die at home. Most people don’t want to have to go to Switzerland.”

“If you do a comedy show about this,” I suggested, “it’s going to be a difficult idea to get the balance right .”

“Yes. We do want to preview it a lot,” said Mel, “because, with the content being quite sensitive, we are going to need to tweak it to make sure nobody is overly affected. What we don’t want is to glamorise the subject in any way – and we certainly don’t want people coming to the show who think they are going to receive an education in how to kill themselves. It is not about us projecting our views onto them.

“We want to preview it at some good comedy venues, because that’s the audience we are aiming for: the everyday person who is a bit curious and I guess death is the ultimate thing we’re curious about – we know it’s going to happen.”

“You used to be a musical comedian,” I said. “How long have you not been gigging now because of the illness?”

“I took two years out,” said Mel, “but I’m back working now.”

“And the experience has changed your comedy?”

“Massively. You can’t go though something like this without being changed. I still love nothing more than getting out the keyboard and singing a few filthy songs. I love it and I love getting up there and being funny about things that don’t really matter. But I’m not playing any music in the Edinburgh show; there’s no comedy songs, no comedy poetry.”

“You originally intended this as a sitcom,” I said.

“Yes. A sitcom called Sick Girl, which would look at the hilarity of a complete family unit having to cope with something tragic. Every family at some point has experienced tragedy and that’s where the comedy is. There’s a lot of humour there. In how they deal with it. It’s whether they fall apart.

“The actual fact is your family fall apart before you do. My mum actually said these words: Why is this happening to me? I remember looking at her and thinking: This is not happening to you, it’s happening to me.

“I distinctly remember saying to her when I got diagnosed: Don’t tell anybody. I want to get this through my head first. Cos grief does two things. It can act as a repellant: people just run a mile from it. Or it can magnetise those that really like to bask in grief. I saw my sick friend today. Oh, it’s awful… Oh, it must be so hard for you. Can I have a picture? – Can you bollocks! No, I’m pissing blood in the toilet at the minute.

“I wanted to discuss that: friendships and relationships and how they are severely affected when someone faces something which may take their life – what happens with your partner, your kids, your friends. They all want the best for you, but they can come at it in a completely inappropriate way. Everybody thinks they can cure you. Have you tried nettle tea… I read a book: you don’t want any acid in your diet… Someone said: You know, a lot of people take marijuana for pain. And I thought: I take that much bloody morphine every day I’ll give it a go. But I can’t say it had much effect.”

“You’re prescribed morphine?”

“Yes. I’m on oxycontin – which they call the posh man’s heroin because it’s pure – and oxynorm. Two types of morphine – slow release and fast release.”

“So what is the structure of your show with Philip Nitschke?” I asked.

“It’s called Mel Moon Dicing with Dr Death and it’s about a doctor/patient relationship. Most doctors want to heal you, whereas this doctor actually assists you in ways to snuff out your life. It’s like a dual autobiographical account of our stories in chronological order. There is a tiny section about who I was before and then we move into my diagnosis and other reasons people might choose this particular way. Then we move into medications and drugs that help and also ones that… get the desired result.”

“Can you legally say that on stage?”

“Well,” replied Mel, “everyone knows that (she named a drug) is the number one choice for that sort of thing. But you can’t get it. It’s impossible to get it. So we can freely talk about it.”

“How will you present the show?” I asked. “Both of you standing on the stage together?”

Philip Nitschke

Philip Nitschke, founder of Exit – aka Dr Death

“I will be at one side of the stage. He’s at the other. The spotlight interchanges between the two of us, with a central point where we can step in and do something together. And we can use a screen behind us to show photographs.”

“And this is in the Comedy section of the Fringe?”

“Yes.”

“Why?”

“Well, come on. What’s the best friend of tragedy? Comedy. They’ve been together forever. Pathos is a wonderful friend of comedy as well. There is nothing funny about death and, believe me, I would know. We’re not laughing at me or what Philip has done with other people. We are laughing at the general reaction to the things that have happened and also, when you give an autobiographical account of something like this, the comedy is in the detail.

“It might not be funny that someone has to have a life-saving injection in order that they don’t snuff it and leave behind two small children, but it is funny that someone has to draw a cross section in a biro pen on someone’s backside because otherwise they don’t know where to give the injection.”

“You told me the other day,” I said, “that you might have a problem with one section.”

“Yes, there is one section that I’ve tried reading out to my family and, as yet, I’ve not made it through without crying. There are some sections of the show where I’ve deliberately flowered it up a little bit to make it easier for me to deliver.

“It’s about the night I made a decision to end my life. You could put years between me and that moment and it will always be emotional and I have to get up there on stage and somehow not get emotional to allow the audience to.”

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Filed under Comedy, Death, Drugs, Medical, Suicide