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!











7 comments:

  1. In context, of course, those nick names are all HILARIOUS. This id not the right context howevr...

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  2. Poor Kylie. They say short people have big personalities but not so in her case. And she's never met Mr Right. God (or whatever they have in Australia) decided to bless her instead with the right to an excellent standard of medical care, should she need it. I'd like to second that cheesy tribute to John 'wind beneath wings' Higgins - funnier than the aforementioned Stewart Lee AND he does impressions (Cliff Huxtable and Max Bygraves are my particular favourites). He is a wonderful man.
    Will be thinking of you back in the ol' chemo quarters tomorrow Kelly. Hope this session doesn't play havoc with your tastebuds - they need to be shipshape for all that turkey 'n' tapas next week.
    Love you Kelly and if you do want to hit the campaign trail we'll be right beside you.
    Gwen x

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  3. I like the sound of this Granny Kelly. Could she teach me her handstand trick? I'm sure that would make me very popular at parties :)

    Glad you had a fabulous time with the siblings and the lovely John, and best of luck tomorrow me dear... lots and lots of good karma to you kxxx

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  4. You need to submit this for publication me darling Kelly. Let me think about where. All members of any health care team needs to read this. Administrators need to read this. Unfortunately you are not alone in your experience but I know few who could articulate it so well. Do you mind if I repost this? A fair number of my friends are health care providers. Lovelovelove. Vida

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  5. I quite like Wally Ann. Timeless!
    May I also add "agggggggggggggghhhhh and grrrrrr" by means of empathetic anger and frustration?!
    Best of luck for tomorrow Kelzo! (thought I´d fire a nick name into the mix as that´s tonight´s running trend)

    Le grá go deo, Úna x

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  6. My heart’s in two. But our doting granny?

    Dote –verb (used without object)
    1. to bestow or express excessive love or fondness habitually (usually fol. by on or upon): she dotes on her eldest granddaughter.
    2. to show a decline of mental faculties, esp. associated with old age.

    The former, I hope, you wee dote. Also, don’t worry about the small seizure the other week. Lots of people have Wii fits. Honk.

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