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.

Monday, 6 December 2010

cancer fighting duo

Look at the neb on that!

The vulnerable sausage

Cheers comrades! (Comrades are, incidentally, what my Granny Kelly calls odd socks, as in: “Where’s the comrade of this fella?”) I haven’t enjoyed this level of support on a journey since I did the 2006 Belfast marathon in an Olympic five-and-a-half hours. There were wee old men in shop doorways on the Falls Road saying: “Go on the girl ye! Only ten more miles till go!” But I only speeded up when the lorry collecting the traffic cones overtook me. My athletic sister Deirdre, who was kindly hanging back with me, was mortified! Still, I raised a whole £60 for Women’s Aid including 2p from Paul Devlin.

Your comments have helped me get through the first day which was always going to be the scariest.

For some reason I initially couldn’t fathom, I had a wild craving for sausages before the treatment. Then I remembered. The docs have been asking me if I’ve had any vision problems as the tumour is in the vision cortex. This has caused me to dwell on stories my boss, Ian Macrae, has told me of his childhood experiences at blind school where he and his partially-sighted class mates would steal sausages off the plates of more visually-impaired children. Noooooo!

It is a worry alright, but really sure it’s a great excuse to eat sausages.

Sated, I headed off to the Royal Free with my “indecently young looking” mother. She didn’t bring her tea-towel map of the tube this time and she was able to tell me that Alan Bennett lives in Camden Town.

I was worried that the familiar grey trudge down to the hospital from Belsize Park was going to be the most depressing part of the day, transporting me back to the dreary start of 2010 but luckily north London this side of Christmas doesn’t seem quite so grim hi.

A business-like radiographer explained what was going to happen with the machine and the mask. I asked her about what level of brain change I should expect and she said: “Well, everybody’s different. There will be swelling, but I know of one woman who had applied to join MENSA a couple of times before her full-brain radiotherapy and only succeeded afterwards!”

So then I had four cheery young women in uniform put a mask on me and pin me down. Carry on Cancer is obviously a film begging to be made.

One of the radiographers recognised me from my previous treatment and was very warm and friendly. I reminded her that we had once discovered a shared fandom of Stewart Lee though I doubt if her devotion stretches to making her husband imitate his sexy verbal delivery. Phwoar. John has even written a song called It Wasn’t Me It Was Stewart Lee which I try to sing to the tune of Wish I Could Be Like David Watts.

The mask was very tight but the ten minutes went in quickly and I managed to suppress my cough and relax during it with the help of some fancy mindfulness techniques of approaching difficult moments with curiosity. Oooooh! Smug enough for ye?

Afterwards my head felt like it was having squeaky candy floss stirred around it very slowly. I was the most relaxed I’ve been in a while and I thought I might actually be able to get some sleep tonight.

Then on the tube home my belly speeded up like a cement mixer and I thought I was going to see those sausages again but it settled down after a couple of hours. A couple of hours of not feeling hungry? Weird but I’m pretty relieved. Kxoxoxo

Sunday, 5 December 2010

hello everybody

My dear da, brother, sisters, grannies, cousins, comrades, aunts, uncles, wonderful friends and supportive eejits,

Thank you so much for your texts, emails, phone messages, cards, boxes of shite, visits, blessed candles lit, novenas and meals. Feeling so loved and knowing you all want to go through this with me has given me a huge boost of morale. However, the whole ordeal is so overwhelming that I’ve found it hard to keep everybody I love informed of what’s going on. I had the idea for this blog as an experiment in harnessing your support to help me cope with what’s now to come. Hopefully, I can post updates on how the treatment is going and benefit from your virtual wit and wisdom in response.

A quare gunk
“Jeepers, but that’s a ‘quare gunk’ hi,” is what my sister Brigeen said to me on the phone on hearing the news that I have secondary breast cancer.

Now for anyone unfamiliar with the oul’ Mid-Ulster Cultchie patois here’s a couple of definitions lifted and adapted from The Ballymoney & Moyle Times:
Quare – (queer) big, massive (see 'gunk')
Gunk - shock, often used in conjunction with 'quare' (meaning big or massive). Example: "He got a quare gunk when she told him she was leaving him."

So yes, there’s been a quare and continuing series of gunks since 25 October as different metastasis have popped up.

It’s been difficult to talk about, so some of you are getting the grim info drip drip by third hand and I’m sorry about that.

The quarest gunk
And I can’t believe it’s only been a week since the very quarest gunk of all: last Sunday afternoon, 29 November, John and I were watching TV when I couldn’t figure out how to work the remote control, then I couldn’t speak apart from to say “er…er…er” and then the next thing I remember is three ambulance people standing over the sofa asking John my age. When he told them “35” I was very shocked and horrified by this information and denied it most strenuously with a vociferous “no way!”

So this seizure that I can’t remember having is the most terrifying thing to ever happen to John, but to me it was a very curious unique experience. I couldn’t remember John’s name or my name but I was able to tell him that I loved him.

Have you seen the episode of The Simpsons called The Springfield Files? I was like the happy-shinny drugged-up Montgomery Burns emerging from the forest saying “I bring you peace”.

I was taken to the Royal Free hospital where a deadpan young ginger A&E doc tested my reflexes by (horror of horrors) getting to grips with my stubbly legs and chipped-varnished toenails. I was mortified but I’m sure he’s seen worse and everything seemed to be working okay (personal grooming aside).  

On Monday I had an MRI. I was in no hurry to get the results as I was quite happy to hope for a non-sinister explanation for the seizure. However they wasted no time in telling me I have a tumour on my left occipital lobe.

This now rules me out of taking part in the clinical drug trial I was due to consent to on Wednesday 1 December, but my terrier of an oncologist, Dr Alison Jones, has managed to wangle the funding to get me on this same as yet unlicensed drug combination anyway. As John says, “If God is a woman she’d look very much like Alison Jones.”

I’ll be starting on the Capecitabine and Lapatinib combo on Wednesday week and hopefully the side-effects will be under control in time for the planned Mullan Christmas trip to Spain.

A face for radio
This week, starting this afternoon, I’m having radiotherapy on my head every day for five days. They say it may cause confusion and changes in concentration so look out for a change in the style of this blog. I may inadvertently become an avant-garde experimental wordsmith.

It’s also going to make my hair fall out again. I’m gutted to be losing 12 months of luscious regrowth. My lovely hairdresser cried!

I was quite out and proud with my bare head last time. Hopefully I can manage that again, but just in case this time I’ve got two wigs.

For some reason this week of radiotherapy is a much more daunting prospect than the chemo. Maybe it’s because I found the radiotherapy I had last year a much more depressing experience than the chemo. Radiotherapy seems more of an impersonal production line process: it’s a daily ritual of going into the basement of the hospital, waiting in the waiting room, changing into a gown, and lying down on a machine that looks like a giant olive-coloured blender from a 1950s kitchen of the future.

I wonder if being a radiotherapist there must be a pretty alienating job as you don’t get to develop much of a rapport with patients.

This time I’ll also be pinned into a mask moulded to my face in case I move during the zapping. It looks like one of those mesh fencing masks: “En guard, pesky heid cancer!”

So as an experiment in coping, I’m thinking of treating this week like a creative project from back in my foundation art course days. I’m going to bring my camera, and draw in my wee reporter pad, and try to engage with the people there.

It’s feeling a lot less scary now hi! I might even have a laugh. Thank you for letting me vent!