Wednesday, 15 December 2010

Cameron's cuts

Warning: contains mixed metaphors. The following piece gets away from me a bit: I started talking about a barber, then monarchs, then moved into a house, moved into madhouse, and visited a toy shop, but then it is Christmas.


Prime Ministers sometimes get confused and think they’re Absolute Monarchs. (Remember Maggie Thatcher on the steps of number ten announcing: “We are a grandmother.”? The poor old deluded absolute eejit, sure God love her.)

So David Cameron may have gone to Eton but I’m afraid now his whole Upstairs Downstairs world is looking a bit topsy-turvy as he has taken a job as a civil servant working for us tax payers.

He’s our butler managing our resources, but he’s no Jeeves coming up with elegant solutions. He and his ilk have one solution that they apply to everything willy-nilly: “the logic of the market” also known as “the economics of the madhouse”.

Into this madhouse they take something like our flawed but wonderful NHS and look at it and think about what to do with it.

Then like Bagpuss and his crack team of toy-menders, they walk around it, singing “we will fix it, we will fix it” but really they can’t understand what they are looking at because they are all in BUPA.

But these Tory boys don’t let ignorance stop them from having a jolly confident bash at sorting it out: usually with a rallying cry of “cuts!” followed by a frenzied attack with scissors.

We can’t let these rampaging posh wallies destroy such a hard won precious progressive resource as our NHS just because they aren’t capable of understanding its value.

Being a melodramatic drama queen I’m tempted to go round to number ten with a good sharp pair of scissors and a perforated line drawn across my throat announcing: “Here, Cameron, start your cuts here, because I’m costing the NHS a wee fortune.”

It’s what they’re doing anyway if they make four per cent cuts: they’re killing people.
This is barbarism.  

I’m heading off now this morning to the Royal Free to start my very expensive chemotherapy. I have no idea what it costs but I know that Dr Alison Jones has fought to get it for me. And I know that I am not doffing my cap and receiving charity. These drugs are paid for from my taxes and your taxes in a progressive system that Beveridge dreamt up to ensure universal access to healthcare for all.  Don’t let Cameron fuck it up on us! Please!

Tuesday, 14 December 2010

My bra is half full

I’ve just had a grand night’s craic with my wee sisters, Deirdre and Maureen who’ve come over from Belfast for a few days to keep me company. They had a stowaway with them. A magnetic ladybird with a note reading:

When you open this letter
And I jump out
Do not be frightened
Do not give a shout
Twas to you I was steered
Never thought you’d be feared

P.S I’ve brought my own food
So please be good
To you this will be bought
So whatever you say
Say nought! Xxxxxxx

It’s own “food” is a quare size of a wad of Ulster bank notes!

Now I haven’t been watching Colombo for all these years without picking up a few deductive skills and all signs point to Granny Kelly. Thank you so much to my doting Granny who has been entertaining me all my life. These whimsical packages are maybe more age appropriate fun than your former party trick of doing a headstand whilst sticking out yer false teeth. Granny, you might be turning sensible!

So as we had a surprise guest on a rich diet, John made us his best French onion soup ever! It had a garnish of fresh thyme! He’s getting very posh in the kitchen and we are turning into John Diamond and Nigella Lawson. Luckily I’ll soon be turning into Harry Hill so I can take the piss out of us before we get too middle class.

I really appreciated feeling well all evening as I’d been feeling pretty rough all day thanks to this persistent hacking cough.

And feeling well gave me the chance to talk through the complaints I have about aspects of my care. Often I feel I’m not being properly looked after by the NHS. My inner catchphrase is “I bet Kylie Minogue never had to do this!”

There’s no denying that Dr Alison Jones is a secular saint and Ruth (cannae find her surname) the breast care nurse at the Royal Free is wonderful but there seems to be a lot going on with my treatment that nobody in particular has responsibility for and that’s very frustrating.

Last week at a time of very stressful treatment, when I had been warned to expect side-effects of confusion and lack of concentration, it was up to me to figure out how, when and where to get my prescription for the steroids refilled. No one had told me whether I was supposed to go my GP or try to approach a hospital doctor. No one had told me when they would run out or when to start cutting down. In my addled state, I called Ruth and asked her. She wasn’t sure initially but got answers very quickly and I got my prescription in time.

This is where family support comes in handy. Before having five children, my mother was a nurse and knows her way around a hospital. Without her gently nagging me to make phone calls and without her making some calls too, I wouldn’t have got half the bags full of prescriptions now helping me.

Another invaluable family asset is my sister-in-law Laura Love (pronounced “lorra lorra love” as per Cilla Black). Laura is a pharmacist and has provided more practical help and advice for my cough than any of the docs who just say, “Your lungs are clear” and offer no help.

Laura had advised me to try an inhaler and after last Thursday night when I was coughing so hard I hurt my left oxter and the inside of my right thigh, I decided to try the GP on Friday. I turned up in the waiting room feeling slightly deranged and insisted on being seen right away as I needed to then head to the Royal Free for the radiotherapy and I really wanted to get an inhaler before the weekend. It’s embarrassing to have to be that assertive but luckily I’ve tempted as a medical receptionist so I know it’s not impossible to burst in and assail the doc. And I find a mad look in the eye is great for queue jumping (or getting two seats to yerself on the Megabus).

The very pleasant and efficient receptionist, Chris, coped with my demands with good grace and I didn’t have to wait long to see the GP who was sympathetic. Looking at my notes he could see I’d had a seizure resulting in a hospital admission but he hadn’t yet had any communication from the Royal Free to say I had a brain met or any information on my treatment.

He listened to my chest and told me it was clear. He said he didn’t think an inhaler would make any difference but I insisted and it has made a big difference to the force of the coughs: after a blast I no longer feel like my lungs are trying to make my reluctant limbs do star jumps which is a blessed relief!

So what do the people without an army of smart female relatives do? That is a frightening prospect.

Many times over the past year-and-a-half since my diagnosis of breast cancer I’ve wondered what it’s been like for Kylie Minogue. Beyond my initials (my cousin Bronagh was very jealous), I never expected to have anything in common with her and I probably still don’t as I imagine she is being very well looked after.

A few aspects of my care, I would describe as needlessly traumatic due to no one taking responsibility: my needlessly stressful egg collection before chemo, my needlessly stressful tooth loss during chemo, my awful stay at the Whitechapel Hospital.

There’s stiff competition from the summer of 2009 for the prize of “the worst moment of my life” and I’m crying now writing this because it has just struck me that all those moments were entirely avoidable if only it had been someone’s job to take care of me and guide me through the treatment.

And then there’s the mysterious scan that was cancelled in November 09 and never rebooked. The doctor that did my last biopsy mentioned this to me on 25 October this year. First I knew of it! If only someone had taken responsibility for that, who knows what difference it would have made to my prognosis.

Maybe it’s time to start a bit of campaigning to make sure the next women diagnosed aren’t needlessly put through this tumour mill and ground down.

But here, this is getting wild depressing hi. So how about a distracting list of all the daft nicknames John Higgins has come up with for me. Vote for your favourite!

  • Crapunzel Crapunzel
  • Kelly Savalas
  • Chemo Sabe
  • Wally Ann

And of course John Higgins takes his job of taking care of me 100 per cent seriously. I can feel myself starting to channel Bette Middler to pay him cheesy tribute so I better go. Quickly!

Saturday, 11 December 2010

the bionic cultchie winds down

My radiotherapy is over! Yay! And apart from being frazzled and knackered and having severely impaired organisational abilities (alas I am currently unable to pair socks or use cash or remember if I’ve taken pills), I feel very relieved to still recognise the inside of my head as my own and not some other Worzel Gummidge accessory although the radio in the waiting room had different ideas on the transformative effects of the process. It was playing Queen’s Don’t Stop Me Now:

I'm burning through the skies Yeah!
Two hundred degrees
That's why they call me Mister Fahrenheit
I'm trav'ling at the speed of light
I wanna make a supersonic man of you
Don't stop me now I'm having such a good time
I'm having a ball don't stop me now

I’m very glad they have stopped me and I’m very glad to be cutting down these steroids. I’ve had enough of being the bionic cultchie. I have an inner sloth to consider.

So that last treatment was no bother at all. The radiotherapists were all buzzing about their Christmas do. There was a party atmosphere in the treatment centre and it felt like a different place as they were telling me that 30 of them would be squeezing into one changing room to get ready.

I asked what happens to the mask now and they said I could take it if I wanted. I said yes please, I’m in need of a colander for the Brussel sprouts.

Coming events I’m now bracing myself for are: hair loss over the next few days and then the start of my chemo on Wednesday. But sure I’ve done it all before so I’m well prepared and Mullan, after all is the anglicisation of O'Maolain, from the Gaelic word "maol" meaning bald, so really it's in the breed of me.  

In the meantime I’m hoping to have a romantic weekend, go to a sale at an art supply shop, and maybe write an essay on hair.

Thank you for all the messages. kxxxx

Wednesday, 8 December 2010

When soap's not hygienic

Jolene, Jolene, Jolene, Jolene
I’m begging of you please don’t take Dolly’s man

Yes, the emotional intensity of this week was brought home to me on Tuesday when Jolene was playing on the radio in the waiting room and I was gripped by an urgent concern for Dolly Parton’s plight complete with physical symptoms of anxiety on her behalf: my shoulders went into ear-warmer position and my stomach tied itself in a pretty gingham bow. Luckily this was short-lived and soon replaced by my crabbit request:

Dolleee, Dolleee, Dolleee, Dolleeeeeee
I’m begging of you get some dignity

I’m understandably going a bit mad here but I have vast experience of coping with madness so I think I’ll be okay.

The stress of the diagnosis of the brain mets, plus the anxiety around the treatment, plus the psychiatric disturbances associated with the steroids I’m on, plus my bipolar tendencies, plus my sticky compulsion to hoover-up any loose guilt or responsibility lying around: all these factors have come together beautifully to make tonight’s attempted sleep very weird indeed.

I decided to try a sleeping tablet (although I’ve been suspicious of them for years ever since my sister Brigeen once hallucinated that I was our uncle Column McIlhinney getting into bed beside her).

The pharmacist today warned me about sleep hygiene and the need to avoid stimulus before taking the tablet. I thought I had heeded this advice, but apparently watching Coronation Street in disaster film-mode is a sleep hygiene disaster!

I was tossing and turning and moaning and groaning about losing wee Max in the street! Yes, in my disturbed state I thought I was that Becky McDonald.

My initial identification with the character of Becky started a while back when a doctor told her the heartbreaking news that she wouldn’t be able to have children. This sense of camaraderie soon dried up, however, when five minutes later she was over this news and applying to adopt.

Now, I can only speculate that my recent acquisition of both a blonde wig and a glamorous tracksuit must’ve let her back in to take over Tyler Durden-style whilst I slept. But I think her possession has actually helped me exorcise some stress. And writing about it has definitely calmed me down.

Apologies to poor John for worrying him sick and scaring him into thinking I was going to have another seizure. It wasn’t me it was Becky McD!

The London Look

Henry tries a new look

Here Henry tries out one of my wigs: "the aunty Patricia". He heard it worked well for offsetting a big nose.