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!