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!
Love,
Kellyxoxox







20 comments:

  1. Hi Kelly, Danella here!! I just heard your news last night! Went on fb just now and saw ur blog I had to folow it of course!! Wot a wonderful idea, I have laughed and cried you are so witty!! I'll keep reading, I hope everything works out of you all! My thoughts and prayers are with you all! Love Danella xoxo ps hope to see you soon xoxo

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  2. "Queer Gunk” meant something entirely different in my school playground...

    Your blog just made me laugh - and cry. I have been sniffing and spluttering as a result of a cold - and my conk was unpleasantly drippy anyway. Now I am one big drip. (But you knew that anyway...)

    It was great to see you over the weekend, Skelly. Hope today isn't horrible…

    Myself, the missus and the kids love you. (Even Lily, now that she's reconciled herself to the fact that she can never win!)

    Take care, my lovely.

    Edward

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  3. I cried till I laughed. That forgetting-your-name episode reminds me of a good-taste joke:

    DOCTOR: I’m afraid you’ve got cancer and Alzheimer’s.
    PATIENT: Could be worse; I could have cancer.

    Anyway, I know the OED is no match for The Ballymoney and Moyle Times. But it says:

    gunk: noun [mass noun] informal an unpleasantly sticky or messy substance.
    -- ORIGIN
    1930s (originally US): the proprietary name of a detergent

    Which is a load of gunk. It also says gunkhole is a verb (no obj., with adverbial of direction) meaning to cruise in and out of difficult-and-dangerous-to-navigate shallow inlets or coves.

    Keep on gunkholing,

    Stephen xxo

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  4. My only experience of er, er, er-ing at the telly-box was not so much due to a tumour as it was a torpor, self-induced, via Guinnesses. Fortunately when help arrived for me, my legs were beautifully waxed and toenails bright and shiny red. I'm sure your doc was more interested in getting you up and at 'em again, all the same.

    As for not remembering anything, what's a name anyway, especially when you knew who you loved. Sure isn't that worth an awful lot.

    You'll be in a fencing mask, in the basement eh? Sounds like a movie scene. Well you might as well buckle that heid cancer's swash, since you'll be in the garb.

    Looking forward to hearing more from you, possibly in avant-garde style. Maybe in haiku?

    Stephen (Other Stephen, not Brother Stephen)
    xo

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  5. Hey well missis, I read this on the train and you made me snotter gurn and laugh at the same time and I woke up a poor wee sleeping granny who was snoozing away in the seat beside me. Mind you I probably did her a favour as she could have missed her stop otherwise. She looked a bit startled though...

    I love your blog, written of course in your own inimitable style, and hey...ee cummings fashioned a whole career out of avant-garde experimental musings...why not you? I always enjoyed your writing, from way back in the day when you used to write for the Vacuum :) There is always a market for Mullan wit! (or do you use your married name now? I'm not sure!)

    Good luck with the treatment my dear and sending you lots of love from snowy Belfast (it looks magical at the moment, but fecking cold)

    Karen xxx

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  6. Hi Kelly
    Such terrilbe news this Quare Gunk.......
    .. But we are Fighters! Us ladies xxxx
    I for one will follow your blog and also prayer for you and your family ,.
    Put all good things into your body to fight of the bad ....
    (((((((((((((((((( HUGS )))))))))))))))))))) XX

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  7. You have always been an amazing person, now more than ever your light and great whit shines through. I dont know where you get your strenght from but I hope it stays with you. If you ever find yourself loopsing grip of this strenght im sure you will fnd it in john, your family, granny and us you wee cousins. All my love and prayers. Catch u soon xxx

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  8. There's a lot of love in the room tonight Mullan. All deserved, you wonderful thing.

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  9. Hi big cuz!
    I loved reading your blog. Being horrified at John telling the ambulance dudes your name whilst you are having a seizure made me giggle - is that wrong of me? Your sense of humor has not been dented luckily for us. :)

    As Collette said you truly are an amazing person, you've always been someone I looked up to since I was wee and you drew me that picture of Kylie Minogue I thought you were just ace! Oh and then I remember you drawing me Prince as well - even better!
    When we lived in Belfast you looked out for me and were always on hand with advice - I seem to remember you trying to explain to me what was going on in the Gazza Strip and being shocked that I really didn't have a clue!! (did I spell Gazza correctly?) HaHa nothing changes.

    Stay strong Kelly, thinking of you every day, love you lots and lots,
    Chat soon,
    Bronagh
    Your younger cousin, (sorry couldn't resist it! Hee hee)

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  10. Wonderful warmth and wonderful wit...your blog is much like your good self Mullan and we want more of it!

    Hope this weeks not too awful for you.

    Love
    Tori xxx

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  11. Kelly M! You never cease to amaze me. You really are such an inspration and a very witty one. I love the blog idea. Now I know what to get granny for Christmas....wifi and Internet classes.Sending you much love and well wishes. I best go as daddy bear is itching for a read. The prayers continue!! Beso grande!!! Una k xx

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  12. Hi Kelly,

    Liking the blog idea! Just want you to know that I'm thinking about you and I hope that treatment is progressng well.

    Steven R

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  13. Hey Kelly,
    your an inspiration to us all, your strength is amazing! All Rafferty/Martini lot send our love. Good luck with your treatment and hope it doesn't make you feel too bad.
    By the way, did you happen to buy your wigs at the little shop down the road from yours? I forget what the shop was called. I thought the one in blue was very fetching:-}
    Lots of love,
    Catriona xx

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  14. I had a seizure once. I woke up in an ambulance, with a man demanding my name, which for the life of me I could not remember. I tried to stall for time by pointing to the wall-mounted defibrillator and saying "Gosh, look at that thing". He didn’t buy it.
    You are a funny, witty and wondrous woman, dear thing, and we all love you very much.

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  15. Am crying at my desk. If someone comes in and sees me and I loose my professional ice-queen rep I will hold you entirely responsible Kelly Mullan. You are pretty amazing chick. You know I don't do the God thing but I'll get Ma McElherron to go flatout on the Novenas for the next week - she loves a good old pray. She'll throw in the odd one for Alison Jones too. Stick with it like the thran wan you are my lovely. Lisa Mc (fellow VDA escapee) xo

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  16. Hi Kelly,
    Just read this and in the tear-shed.
    You are a marvel, truly.
    Blog is a very good idea. We want to know how you are doing, but not bug you or the JPH.
    Please do vent. Lots of love, Mike

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  17. I can't believe Mike built himself his own tear-shed. I do my cryin' in the rain so it's sods law it's been snowing for the past week.

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  18. Pah! You call THAT a tear-shed?

    It's not even a weep-hut!

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  19. My dearest Kelly. I am hooked.
    To know, know, know you is to love, love, love you. And I feel very privileged. Capecitabine and Lapatinib (or Cappers and Nibby to you) sound like great guys by the way.
    When I was young I had a Johnny Mathis album called 'Tears and Laughter' - happy songs on side one, sad songs side two (a concept lost on CD format). Until now, no one has captured the poignancy of marrying these two emotions... be it through song or blog - it's now Mathis vs Mullan.

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  20. Kel, look at all the mullans/Kelly/McKenna's in one blog here for u! u r my inspiration, a truly beautiful person but so modest 2. But then when u throw in ur witty comments it makes us all laugh, i'm sending all the positive vibes i have to u, for u 2 say " on guard pesty cancer " now bugger off!!!! Love u Kel xo

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