Saturday 3 December 2016

Dublin, London, Paris, New York.....Newcastle???

That last little bit of cancer needs to be fried, or melted, or poisoned, because it can't be cut out. 

To be honest, while I realise cutting out is the be-all and end-all when it comes to this kind of thing, I do find it is quite a nuisance when it comes to having a fully functioning body. It turns out that your body is pretty good at doing what it does, and when you start hacking pieces out of it, it doesn't react too well. Scar tissue, bowel shortage, liver regrowth - they all cause their own little bit of trouble. But, fair enough, quite a bit less trouble than flesh- and organ-eating cancer. All I'm saying is that a body diminished by surgery isn't as efficient as an intact one, in my experience. 

So the boyos cannot cut out this last bit, and that makes me just a little bit pleased. Only because they assure me that they can find another way to get rid of it. 

The options are stereotactic radiotherapy, electroporation, intra-arterial chemotherapy and possibly something else but I lost track a bit in the conversation at that point. 
What they didn't tell me is that the first one is also known as the Cyber-Knife, and the second one is the Nano-Knife. I don't know if the third one has a cool-sounding nickname, but since it won't have Knife in it, it would be hard to see how it could beat the other two. 

So, which is better? 
Cyber = techy, other-worldly, a bit mysterious
Nano = tiny, precise, possibly something to do with Mork and Mindy (or the Presentation Sisters. Either way, two impeccable pedigrees).

The other deciding factor is where I can get these done.

CyberKnife - fancy private hospitals in Dublin (which my insurance doesn't cover). Or Beaumont (not so fancy).

Intra-arterial chemo - New York or Paris (in Paris, they leave the pump hanging out of you, as a fashion accessory, obvs).

NanoKnife (my preferred option) - Newcastle. Upon Tyne like. Reet. Not exactly a top destination, but it does have that Brazilian knock-off statue thing. 


Of course, it's not really up to me (autonomy out the window again). My scans are being sent to Top Men all over the world (well, Newcastle mainly I think, because the chap there is the Toppest of Top Men) and they will do top-level chin-stroking, and get back to my own boyos who will let me know if it's Cyber, Nano or Pump. Another fun variation on the Rock/Paper/Scissors game. 


Now, where's my passport?





Friday 18 November 2016

Hello Listeners

I know there are a lot of you out there, hanging on my every word, who won't be able to sleep properly until they know the latest update - will she live, will she die, who gets the jewellery etc.

Anyway, this is how it is - no change. 

This is marvellous news. 

Same little scabby calcified bit of ick stuck to my portal vein, like a toddler clinging to his mother's leg. 

Nothing else, nothing new. 

Job.

I'll fill you in on the exciting things we have in store for Junior when I have a minute. 

Now, back to Narcos.








Thursday 17 November 2016

In-Between Days

I had a couple of scans last week. Same old same old, didn't choose the music this time and ended up with Il Divo - crumbs that's easy money for them isn't it? I drank the gack manfully (womanfully). I did the banter. Grand.

I tend to enjoy the post-scan pre-results phase. I revel in the unknowing. But it's getting a bit old now. 

Everything is static until I find out what happens next. I write things on the calendar, accepting that none of it may happen because I will be in ICU/in chemo hell/in some new and as yet unfamiliar therapeutic misery. 

The anxiety builds and builds until it peaks, plateaus, dissipates. And then starts again. I often remind patients that a panic attack will always burn itself out, that your body and brain cannot sustain that level of autonomic overactivity forever. But I forget to tell them that as soon as it is gone it can start again.

There are plenty of things to do to distract me. Cleaning, sorting drawers, ignoring the psychological undertones of these obsessional activities. Dancing. Cooking. Shouting at children (again with the subconscious muscling its way into the everyday). 

I am acutely aware now that there are more people involved in this than I had previously considered. The Waiting Contingent include all those for whom my health, or lack of, is equally important. I feel like I am doing them a disservice by making them wait with me. 

As doctors we really have no idea what it might be like for the person on the receiving end of no news. I get results across my desk each morning. I quickly spot the serious ones, the ones with consequences, the ones I need to do something about. I skim over the normal ones, my brain filtering out the good news because it is not "urgent". Not to me it ain't, but oh so urgent to the man woman mother daughter waiting to hear if their world is about to end. Or not. 

It is probably true that no news is good news, because if I am phoning a patient about a result, it is because there is something up, not quite right, I'm sure it will be fine but we just need to do a few more tests. We use language that obscures our real fears and intuition, not out of badness but because sometimes our instincts, or our fancy diagnostic tests, are simply wrong. Not often, but enough to make it unwise to speak in absolutes. 

So the waiting is inevitable, and tough. 

But like the panic attack, it will always come to an end.

Then there is the next bit. 






Wednesday 19 October 2016

Better

I love going to work. I am able to work more now since I've finished chemo, and it makes me feel good. It makes me feel normal. It makes me feel that I am useful and not a cancer-ridden waste of space. 

I have also taken to doing more non-work stuff, like going to conferences, attending meetings, participating in committees, doing charity things. 

My Trusty Companion wondered out loud if going to a CME meeting with a chemo pump strapped to me was a good idea. He pondered that taking on more stuff when I'm "ill" may not be wise. We discussed it, and lo and behold it turned out I was right and he was enlightened (amazing how often that happens...)*

In one of my recent extra-curricular events, an eminent professor quoted this chap, Daniel Pink, who is a business guru type. He spoke about what makes us do what we do (in this case, work as GPs for patients with high needs). Mr Pink talks about Autonomy, Mastery and Purpose. That really got me thinking. 

These are exactly the things you lose when you are a patient. No more autonomy (though there is sometimes a token "how do you feel about that plan?" at the end of the consultation). Am I realistically going to turn around to my consultants and say "go away out of that, I want methotrexate and cadmium and a small drop of ricin in my drip, you don't know what you're on about." I am not, because these lads know what they are talking about, and I am happy to surrender myself to their expertise. But I am surrendering, and giving up my autonomy. So that's one down. 

Mastery is about getting better at something, and relishing that achievement. Obviously, my whole life is now about "getting better", but not at any one skill, just at simply being. And while I am participating in this effort to get me well, I am not in charge, and my gains feel a bit small. How "good" can you get at sitting down and letting people pour drugs into you or cut bits out of you? Being a good patient isn't much of an achievement really - "wow, look at me, I'm a whizz at being passive!" So mastery goes out the window.

The Purpose bit seems straight forward enough - Become Well Again. But it's a bit vague, a bit wishy-washy, and also not in my own hands (see above). It's a dream, an aspiration, a hope. But not really a jump-out-of-bed-in-the-morning-I'm-going-to-change-the-future situation. 

So it suits me to throw myself into activities where I do feel I am in charge, I am good at this, I can make a difference. 


It might not be quite what Mark Andrus intended when he wrote this, but cancer makes me want to be a better person. 


In all senses of the word "better".  




*Ooh I'm in trouble when he reads this.....





Wednesday 5 October 2016

Done Done Done

Last chemo.

This time I actually made it to the pre-planned six cycles (though I only managed four each of the irinotecan and panitumimab). My body is getting less and less tolerant of the toxins. 

Or maybe it's my brain. The better you get, the harder it is to put up with side effects. Cancer is becoming a chronic disease, not a killer, and so the treatments will have to become more tolerable and less likely to kill you first. People don't tend to put up with life-threatening side effects from blood pressure tablets or diabetes medication. If I gave someone a pill for their indigestion and it made all their hair fall out, they would be pretty cross with me. So it is a tricky one for the oncologists - you'll be furious with them if they don't cure you, but also raging if they make you sicker on the way to getting better. 

I am waiting now for my body to drag itself up out of its pit of misery and start recuperating. I am looking forward to no longer frightening children with my crack-addict face. I am particularly keen to be rid of the pustular infections on my toes which make me hobble like an old witch. I'll be glad when the scabs in my nostrils heal. 

But mostly I'm looking forward to just feeling the same most days, instead of up and down, up and down, manic/tired/depressed/pitiful/okay/better. 

It's been quite hard work. 





Monday 19 September 2016

Life's Not Fair

After my assiduous chronological documentation of what was going to happen after my last chemo, typically enough, none of what I had predicted actually occurred.

I didn’t get the “strong stuff” (irinotecan, not poitin) because my bloods were too low, so I didn’t have the same sequence of horrible side effects. 

Instead, this time I got a brand new batch from the Vectibix

I never knew how much I loved Epidermal Growth Factor until I started inhibiting it. 
Come back my little EGFs, all is forgiven!

My skin is disintegrating. I have pustules on my face, chest, legs, jacksy, and most tearingly itchingly painfully on my scalp. I spend most of my day picking scabs off my head. You know when your mother tells you to stop scratching, but you really just can’t? I try sitting on my hands but it's a bit tricky to examine patients or write notes while doing that. I can only imagine what patients are thinking when they see me with boils on my face, scratching my noggin like a particularly unhygienic chimpanzee. 

Oh well. 

My fingers are becoming useless again, can’t tie buttons or laces without wincing and griping. 
I found the world’s greatest plasters though - they survive OCD levels of handwashing and actually helped the cuts to heal - unheard of!


In the spirit of feeling sorry for myself, I decided to have a look at the lives of some other women born in the same year as me. As I have mentioned before, I am ferociously nosy. I have convinced myself that accessing the data available to me through our patient database is all in the name of research, but it is actually just satisfying my endless curiosity. 
So it turns out that there are 35 women on our books the same age as me. Surely none of them have it as hard I do? I've got to be the unluckiest nearly-40-year-old out of all of them.

This is a random list of the things these women are going through.

Well-educated immigrant, husband and herself unemployable here as qualifications not recognised. Child abuse, ongoing abusive relationships. Alcoholism. Cot death. Sarcoidosis. Depression. Emotional abuse. HIV. Anxiety. Bereavement. BMI 45. Son with autism. Kidney surgery. Pathological terror of intimacy, possible undisclosed childhood abuse. BMI 55. Infertility. Children left behind in home country. Headscarf attracting verbal abuse on a daily basis. Physical abuse. Incontinence. Bruises, post-traumatic stress. Job loss. Ex-husband jailed for white-collar crime. Painkiller addiction. Post-operative infection. Bipolar affective disorder. Diabetes. Ulcerative colitis. Domestic violence. Fibromyalgia. Panic disorder. 



Yeah. So my life is hard at the moment. 



But I don't think I'm the only one.






P.S. General practice at the Deep End is good for one's sense of perspective ;-)



Monday 5 September 2016

Patterns

Chemo number 4 today. I think I have the routine figured out by now. 


Day 1:
Wake early, or else too late. Either way, end up rushing around at 7:50 trying to make lunches, pack bags, put on the washing machine, remember to bring the little pouch for my drug pump. 
Drive around the hospital looking for a parking space. Nearly always find the same one, yet I persist in looking elsewhere first. 
Take my ticket at the admissions counter. They call me in quickly, smile warmly, remember my name, ask about the kids. 
Sigh to myself as I walk up the stairs. 
Get assigned to a chair or a bed. Please please please let it be a bed. 
Nurse arrives with her little tray with my name band and the needle to go into my port. 
Bloods go off to the lab. All decisions rest on the results. I could get sent home (yay!) but they'd make me come back again anyway (boo!)
I sit and wait. (I'm not sure if angels contemplate my fate.)


The toxic stuff arrives down from the pharmacy in a locked industrial grey briefcase, carried by a lady in full Breaking Bad protective gear. 
Then they connect it to my bloodstream. 
You'd have to wonder really who came up with this stuff. "Hey Professor, I've found this really toxic chemical! I know, let's pour it into really sick people and see what happens!"

I sit and listen to the beeping, the vacuuming, the TV3, the intimate details of other people's lives and bowel habits. 

I get four different drugs. Folinic acid (a vitamin-type thing so it feels like it might actually be good for me), irinotecan (shocking awful stuff that banjaxes your guts any way it chooses for about ten days), fluorouracil (kind of a benign old thing really. Wikipedia calls it a suicide inhibitor! Maybe someone should tell the suicidologists) and panitumimab (the skin-assaulter).

It all takes about seven hours, give or take a lifetime spent waiting for doctors or xrays or swab results if you make the fatal error of telling them that there's anything wrong with you. 

I go home with a little plastic bottle of fluorouracil attached to my port. I stick it in the pocket of my hoodie. 
[I have a chemo uniform now - vneck top to access port without too much undressing, hoodie to carry the bottle, comfy trousers (though I refuse to wear a tracksuit), slippers, earphones. Smiley face.]

I am high on 8mg dexamethasone. Don't mind your crystal meth, dexa meth is your only man. I bombard social media, seeking validation and a fight. 
I don't sleep, because now I've decided I can't sleep, so I'm hardly going to. I can't lie on my left side, and the bottle is not nearly as pleasant a thing to share a bed with as a newborn baby, so there aren't really any upsides. 


Day 2:
I haven't slept, but I'm not tired. I take another 4mg dexameth. Whoop!
My face goes very red at about 11am. 
I potter about doing all the stuff I usually do, with a dry mouth and a headache that is very similar to a hangover but just a bit less fun. My thumbs go weird. 
I start to feel a bit weary and maybe a bit cranky (though I am quite sure that my mood stays perfectly stable throughout the whole cycle. Others may beg to differ.)
I sleep better. 

Day 3:
Another 4mg of dex. Off we go again, cleaning, washing, emptying cupboards, vacuuming walls. 
I try to concentrate on complicated work stuff. I convince myself I am a whizz with the numbers. I spend an hour on spreadsheets. It makes me feel good. 
I go back to the hospital, back to the smiling faces in admissions, back up the stairs and join the others waiting in the corridor. 
Generally I am whisked in pretty quickly, the nurse pulls out the needle and disposes of the empty bottle in a special Toxic Waste bucket. 
I go to work. The 4mg is still doing it's thing. I chat away to the patients, open worm cans, dig a bit deeper than usual. Superdoc is in the house. 

Day 4:
I've slept better without the bottle, but the brain is still racing a bit. 
No more dex. Downer. 
I am more able, but less able. I am unencumbered by a constant flow of lethal chemicals, but unboosted by the steroids. Perhaps, maybe, the mood slips a bit. I may shout, but only when necessary. "DO NOT LICK THE BOWL LIKE A CAT". That kind of thing. 

Day 5:
Okay. Things are slipping a bit now all right. Fighting the right words is a hit-and-miss procedure. My mouth is constantly dry, my brain is constantly foggy. I feel a bit like I did at 7am after a Med Ball. Not ideal for going to work. I'll have to stop doing that. 

Day 6:
I'm awake and I'm functioning, but I could sleep standing up. I could crawl upstairs and into bed until Tuesday. In a parallel universe like. 

Day 7:
A bit more awake, a bit more functioning. Would still bite your hand off for forty winks though. 

Day 8:
At last I see the light, and it's like the fog has lifted. But the stomach cramps kick in. They do tend to keep you quite awake. And sharpen your wits at work. 

Day 9:
Guts still as predictable as the weather, but the brain is able for complicated tasks like third class maths. 

Day 10:
Sure this chemo thing is easy peasy. Temperature going up a bit though, and white cells probably going down. Try to avoid eating the food off the plates of the snotty germ-factories. Try not to breathe in during consultations. 

Day 11:
Aches and pains, fatigue, short temper. Totally normal Mummy symptoms. Grand.

Day 12:
Skin beginning to heal. Spots less like Vesuvius, more like Sugar Loaf. 

Day 13:
Wholesome family activities, uniform washing, lunchbox preparations. Suppressing dread.

Day 14/Day 1:
And repeat.




Disclaimer: There are some sneaky hidden stolen phrases in there. I couldn't be bothered referencing them properly. Prize of a digestive biscuit for those who can spot them. And apologies to the copyright police if they're around. 



Monday 29 August 2016

Thinking Ahead

Some of you aren't going to like this. 

I'm going to talk about death. Not dying, just death, so that might make it a bit easier. 
But really, if you are Irish, or maybe just human, you won't like this kind of talk. At All. 

Because we all know that if you talk about a bad thing you'll make it happen. So not talking about death guarantees that it will never happen to anyone, ever. 

That's been working out well for the 30,000 Irish people per year who pop their clogs. 

So let's just say, hypothetically like, that maybe we might die all right, but like not for ages and ages and ages. 

And let's just say, just speculating like, that we might have an opinion about what would happen when we did die. Would we have a funeral? I guess that's inevitable. Would we care what that was like? Should it be up to the people left behind? In fairness, the one person you can guarantee won't be at your funeral is yourself, so why should it matter to you what goes on? 

I used to avoid funerals. I was so uncomfortable about knowing what to say, whose hand to shake, when to stand up and kneel down and say Amen (Ay-men? Ah-men?).

The first funeral I remember is my grandfather's, on a lovely sunny day in late summer. Everyone was so warm and kind and friendly. 
My grandmother was buried four months later, on a miserable December day. My birthday. I could see the handles of previous coffins jutting into the hole they had dug for her. 
I didn't know that she was being lowered into the hallowed ground of the Republican plot, that her proximity to the great patriots was a measure of the esteem in which her family was held. I just saw a load of people in black, carrying umbrellas and sniffing. I played with my new Sindy doll in the car while various theatrical types hugged my mother. 

A young man died when I was at school, and his friends sang at his funeral. I have never seen or heard grief so emotionally raw, so honest, so uninhibited. I saw them turn from boys to men that day. 

I have been at funerals where people are afraid to speak up because of years and layers and depths of half-truths and cover-ups. There are so many elephants in so many Irish rooms you wonder how anybody else fits in there. 

Wouldn't it be nice to think that, on a pretty big day in your life - well, death obviously - that people could meet up, say nice things about you, eat nice food, hear good music, cry as much or as little as they want, stay as long as they like. Sounds like a top quality party. 

But we usually put a bit of effort into planning parties like that. We arrange the seats, count out the napkins, buy back-up beer, eat all the Doritos while waiting for everyone to arrive. We wouldn't just hope that, say, our spouse will suddenly know how to do all this, particularly when they've just been stricken down with a fairly acute case of grief.

So I am suggesting that maybe this is something we should talk about in advance. 
Again, just on the very remote chance that we may actually cack it someday. 

You could fill this in.

Or, you could talk to someone close to you about what to do when you're dead. 


I know. 
I'm a crazy witch-person who is going to make us all die right now this minute by even mentioning such heresy.
Sorry lads.





Addendum: Here's something to watch. It's about dying well. I just thought you might like a bit of a video.









Sunday 28 August 2016

Unravelling

The defences are being breached. The armour is beginning to split at the seams.

There's a crack in the roof where the rain pours through. 
That's the place you always decide to sit. 
Yeah I know I'm there for hours the water falling down my face. 
Do you really think you keep it all that well hid? 
No, but I travel light.

My skin is bubbling, pimpling, burning, peeling, cracking. 
My head is fogging, filling, thumping, stuttering.
My stomach is churning, bubbling, eructating. 
[Borborygmi - best word ever. After fysigunkus.]

It was always going to get harder. 

And then it gets easier. 

And then I go back again for more. 


Halfway now. 


Hup now lady, you can do it. 






Monday 8 August 2016

Fine!

How are things? How are you? How ARE you? How are YOU? How are you doing?

Fine thanks!
Not too bad.
Erra okay.
Getting there.
Good now thanks.
Great!

It's a bit hard for people to know what to say to a person who is having chemotherapy. Mostly because they don't really expect to see you. 
You should be at home in bed with a bald head, wrapped in a cosy crocheted rug, with a pale watery smile on your face. 
They shouldn't have to meet you at work, or at a party, or doing the shopping. 
They should be coming to you, with caring faces and the shoulder-drop of pity, bearing cake and sympathy. Then they'd know what to say. But a non-sick sick person is a bit of a head-scratcher.

And of course, the sick person is actually a bit sick all right. She has pain and aches in most places. She has a headache and a dry mouth and sore skin. She has unpredictable stomach cramps and dodgy bowels. But she's not going to get into that in the corridor or supermarket aisle. So she'll say she's fine in a range of ways which, if you listen closely, will tell you where she's really at on the symptom spectrum. 

I'm in today for my second cycle of chemo. It seems like longer than two weeks since I was last here. We've been busy. I have had some new side effects that unsettled me a bit, but they may also have come from trying to learn to cycle. (Yes people, laugh all you like, this 39-year-old can't ride a bike.)

The side effects are going to get worse, and I might have to stop working, or I might have to spend more time in bed. My skin is going to go pustular. My hair will thin, but there's so much of it it's very unlikely anyone will notice. (I will have to start vacuuming the house more often to scoop up all the hair. But the steroids make me clean maniacally anyway so it's all good.)

I still won't look very sick in the classic TV-cancer way. 
I think some people may be beginning to think I'm making it all up. My godmother thinks the doctors have got it all wrong. 
She pretty much always thinks this about doctors. And she's generally right. 
She is nearly 90 years old and has not changed in any way in the nearly forty years I have known her. (Although sometimes, now, she doesn't whitewash the house and paint the kitchen ceiling on the same day.) She digs her potatoes, manhandles various farm animals, makes a three-course meal for anyone who arrives at her door. She has an iron spirit and a heart of fluffy marshmallows. She pays no attention to ill-health or ageing. 
She is my hero and I want to be like her. 

So when you ask, I will say, "I'm fine, thanks for asking. Now, where's that paintbrush?" 




Monday 25 July 2016

Meh

I asked for therapy, and I got therapy.

Chemotherapy. 

Round 3. 

I was a bit disappointed that there wasn't a scantily clad lady in high heels walking around the ward holding up the number on a card, with a bell in the background going "ding ding!" 
But that would perpetuate the "fight" theme which cancer-types either love or hate. As in, "she fought bravely", or "...after a long battle". 
Some cancerheads feel that this kind of talk makes people who die from cancer losers, or weak, or poor strategists, or surrender-monkeys. Which is a bit harsh all right. 
I intend to have a very heated debate with cancer, and win on points because of my witty repartee and cunning use of populist humour. 

The clever use of words will have to be supplemented by the ugh-inducing use of cytotoxic drugs, though. I accept this. Doesn't mean I was bounding in there this morning, delighted to be back in the squeaky chairs and eating mediocre food.* But it has to be done, and sure doesn't it give me something to write about. 

Once again, my failure to actually write anything useful on this weblog has bitten me on the ass. Like, wouldn't it have been helpful to document how I felt during the last two blasts of gunk? I could have made a list of the things I would do differently next time, like starting the anti-pizza-face meds before the pro-pizza-face stuff started. Like ordering the super-soft toothbrush the dentist recommended, which is apparently called a Nimbus (the fact that he made no reference to Harry Potter when he mentioned this did worry me somewhat). Like remembering that my short-term memory will be pathetic, and anything requiring brainpower will need to be postponed until another time in the fuchsia. 
Like that I tend to mix up my words. 
(Just asked MTC to pass me a packet of sweet and sour Hula Hoops).


So bear with me here while I witter on in increasingly non-sensical prose. 
Gotta keep that clever counter-argument going, you see. 




*


Medi-ochre. Geddit?



Thursday 21 July 2016

Therapy?

My life has returned to normal so much it's unsettling. Turns out my brain can cope far better with imminent disaster than it can with your standard multiple low-level anxieties. 

Work is getting hard again. 
Hard on the brain, trying to work out complicated presentations. 
Hard on the heart, listening to stories of destitution, deprivation, desolation. 
Hard on the generosity, when people are actively ungrateful. 


I can tell when my anxiety levels are rising, because I get an increasing amount of what psych-types call "intrusive thoughts". Basically these are very strong mental images of you doing something awful and out of character. Example: kicking an old lady up the bum. I'm admitting to something here that others may or may not have experience of themselves. So either you are nodding sympathetically, or you are whistling while twiddling your finger next to your temple. Anyway the great thing about intrusive thoughts is that it is exceptionally unlikely that I would ever act on them. They tend to happen more to people who have OCD traits, and for whom control is a big thing. So your brain, in its infinite sneakiness, makes you imagine the worst case scenario of losing the plot. It makes you believe you could, in fact, whack a priest across the face with your shoe, or drop-kick a newborn over a wall. See, told ya. Totally loolah. 

Anyway, when I started getting more of these little Bishop-Brennan moments, I decided to go along for a bit of brain-shampooing. I've always been a fan of an old spot of psychotherapy. It may not surprise my readers to learn that I'm a bit fond of talking about myself. So handing over 70 quid to ramble on about myself for an hour seems like a fair deal to me. I could if course get it for free, through the kindness of ARC house et al, and I have gratefully used their service in the past. But the new "I'm so well now I can't have cancer" delusion would be shattered by crossing that threshold so I'd rather pay the money and feel like a standard crazy loon than a cancer-struck one. 
So off I went, twice, and spoke to the kind lady. She ooed and hmmed in all the right places. She fell into the same trap they all do though. "My, aren't you great?"  Don't feed the ego lady, it's already morbidly obese (oops, less of the morbid, remember the delusion). 
I did feel a bit better though.

Next step in self-care was going out for the night to the pub I used to drink in when I was a student, with the some of the friends I used to live with back then. Proper solid nostalgising. And I drank almost like I used to (replacing pints with half-pints; I haven't totally lost my senses). It felt bleeding marvellous. The hangover was like another old friend, ready to greet me in the morning with a cup of Barrys tea. My GGT doubled, then recovered within a week. Go on the freshly grown liver! 

The final step in the anxiety management plan was a trip to my favourite offshore island, to escape from all semblance of real life and bask in the timeless nothingness of long walks and throwing stones into the water. Which was all well and good, but I came home after a day to go to work for a morning. And then, sadly, came home again for a funeral. 

I have spoken before about radiators and drains. This girl had a PhD in Warmth and Kindness. She was the Professor of Empathy. She was the most selfless person I ever met. I don't think it was a coincidence that she was buried on a Saturday. She wouldn't have wanted to put anyone out by being so rude as to make them miss work to send her off. She was a shining light and now the people she loved have a bit of darkness in them that will never brighten again. 




And she had bloody great hair. 


Sunday 19 June 2016

Regeneration

So. There's a bit of catching up to do. 

1. My weekend of child-free womanising was sublime. Many many tears were shed, and every one of them was related to can't-breathe laughing. My very ancient shoes disintegrated in the middle of Zara. A discussion about the frequency of refuse collection was particularly hilarious. We bought clothes that spark joy. We strolled and ate and strolled and drank and shopped and ate and slept. I was filled with love. You can't say fairer than that really. (Especially if you can't pronounce your f's or th's...)

2. I had a scan. Had I mentioned that? People love the drama of a scan, and I pointedly ignore it. I didn't want any result before I went away (but I did just ask someone to phone me if my lungs were likely to collapse on the flight). 
I got the result a few days after I got back. 
Once again, I aced it. At least a B+. My liver has grown back, clean as a whistle. The last little straggler of a met has stayed the same, hugging my portal vein like a lifebuoy. But we will prize the little bollix off it and let it drown in a sea of cytotoxins, before scooping it out and dumping it in the yellow pathology bucket. 
Or, in slightly less cryptic language, I am going to have more chemotherapy (I so nearly wrote psychotherapy. Freud would be beside himself). This is to loosen the little cancery chap's grip on my portal vein, which is an important piece of liver kit and isn't to be messed with. Then, all being well, another bit of fancy knife work from the surgeon and the whole lot will be hospital waste. Wouldn't that be a thing. 

3. I am speechless. 
As in, currently unable to speak. Having chatted to nearly all of the lovely people who generously attended my doctors' disco last night, I am bereft of voice. 
Turns out, though, that three hours of vigorous dancing is your only man for sorting out post-surgery abdominal adhesions. I did end up clutching my stomach to prevent a hernia, but I'm pretty sure I passed that off as some impressive air-guitaring. I wasn't, by a long stretch, the most committed dancer on the floor, and there was a bunch of lads and ladies a few years older than myself who out-stamina-ed all of the "young" ones. Inspirational. 
It was a bit overwhelming to see so many familiar faces, last seen over a decade ago, all gathered together to share a few hours and re-ignite old friendships. And all just because I asked. God, this cancer business makes a girl fierce popular altogether.
I had to giggle a little bit at the surprised, momentarily disappointed, faces who had expected to see an emaciated baldy version of the me they used to know. Sorry folks, no freakshow here. (I had to restrain myself from showing off my supersized scar though).
I'm pretty sure everyone had a good time, which was really the whole point, and as a feel-good altruistic side-effect we raised €6000 for the Mercy Hospital Foundation

I'm useless at thanking people, and at making speeches, so I didn't do much of either last night. However, I am truly thankful to all those that came from near (Blackpool) and far (Cleveland), and in between (Waterford, Limerick, Tipperary, Dublin, Bangor, Mayo). 
Thank you to the dancers, the sitters, the chatters, the bathroom-bouncers, the Coronation-chicken-munchers, the car-got-broken-into-ers, the chocolate-bringers, the cash-payers, the Amazonian high-heel-wearers. 
The DJ and the venue people did their stuff, fair play.
A big kissy thank you to my Trusty Companion, my indomitable husband, my partner in dance crime. (Hands off, Clonakilty.)

And on this Made-by-Hallmark Day, thanks to my father for being the solo putter-to-bed of our three children, while his usual babysitting wing-woman was unexpectedly held up on her travels. Not a bother on him. He even did the washing-up. 
What a dad.












Sunday 5 June 2016

Guapas

I am sat (seated? sitting? Sorry mum, I forget) on an airplane en route to Madrid. I am on my own, in that I have no one sitting next to me that I need to restrain or entertain or nourish or plead with. I have only got my own passport to constantly be worried about losing. My handbag has no nappies or wipes or crayons or cracker crumbs or in-case-of-emergency chocolate buttons. 
Dotted around the plane are three of my friends (we were too disorganised/stingy/happy with our own company to pay Ryanair to sit us together), basking in the responsibility-less-ness of independent adult travel. 

We are off to spend time together, with another friend, to celebrate our 40th birthdays. Two of them have turned 40 already, three of us are going to. One of us has a slightly higher risk of not making it to hers, so no harm to get the celebrating in early. 

There is a hen party two rows in front of me. Thirty somethings, pink sashes but not fully embracing the titsoutfertheladz vibe. A fella with a gold lamé vest (I swear) has found himself seated (sat? sitting? God it's hard) in 11D, slap bang in the middle of the laydeez. He has offered around his baby bottle of Jack Daniels and the one whose sash says "bridesmaid" has accepted, and had her picture taken while swigging from it (to make it a real event.  Otherwise who would know?) The fella is exceedingly pleased with himself. 
Behind the hens in row 11 and 12 we have another group of wimmin (in what would be row 13 if the world wasn't so bloody superstitious). These ladies are older. I'm not sure by how much, but their faces are lined under their makeup. They have endured more sleepless nights, and not the fun partying kind.  They have expensive watches and clean shoes. Some of them are chatting, some are just reading their magazines. There's a lot of head-shaking. I can't figure out their story. 50th? 40th but rough? Weekend away just cos?

I am reading Caitlin Moran's How to be a Woman. It's brilliant. It's making me shake with laughter while I hold my scarred belly and frantically swot up on my pelvic floor exercises. I have fifteen women in front of me who are the living embodiment of all the good and bad things about our gender. They are comparing handbags, discussing confirmation outfits, sharing a Toblerone. 

I am going to spend the weekend with women who have been through enough shite by now to not particularly care if their bag matches their shoes (though most of them will manage this effortlessly anyway).

I am in heaven. 

Except I've spilled my drink and there's no wipes in my handbag. And I'd murder a few chocolate buttons.



Epilogue: The auld wans ended up being drunk and shrieking about Crystal Swing. The hens drank their Heinekens steadily and quietly. The gold lamé vest man took a very obvious "selfie" of his neighbour's cleavage. 

Monday 23 May 2016

Radiators and Drains

It's nearly seven weeks since my liver surgery. 

The hosepipe in my side which was draining bile/yellow stuff/bile/nothing/yellow stuff periodically was finally extracted this week. The man said, "Ooh, it's longer than I thought" as he was pulling it out. Hmmm. I'm terrible at measurements, but it was about the length of a standard wooden spoon handle. Pity I didn't get to whack him on the backside with it afterwards. 

I felt bloody great the day it came out. I felt quare as bejaysus the next day. It was like someone had suddenly removed a very stiff corset. My poor back, which is crook at the best of times, got very put out by the change in circumstances. My "core muscles" have left the building, and may never return. My scar is high up on my abdomen, curving from my xiphisternum to my iliac crest (breastbone to hip, non-medicals). Fans of the Great British Sewing Bee know that cutting across the grain of a fabric causes no end of trouble, and my muscles have been sliced diagonally and sideways and skew-ways, and have puckered like a badly sewn gusset

"Six weeks" is what I always say to people when they ask how long it takes for a body to heal after surgery. I say this regardless of what kind of surgery they have. I say this, thinking in my head, "6 weeks for wusses, 3 weeks for me." But it turns out that removing the big half of a vital organ is a bit much for a poor little human to deal with. Even a stubborn, allegedly resilient, one. 

I wrote after my bowel surgery about how I'd lost my mojo. 
Ah, the naivety of the laparascopee. There was me thinking that just because I'd had a foot or two of bowel removed, that I had somehow experienced the full whack of Major Abdominal Surgery. 
That was like a trip to the chiropodist compared to this. 
No keyhole fancy-dancery this time. The boyos must have had been up to their elbows in me, scraping bits of liver off major blood vessels, wrestling with mangled tumours. They even got the radiologist man to come and have a poke around with his ultrasound machine while I was panned out. No wonder it took six and a half hours. And five grams of haemoglobin. And seven weeks of aching recovery. 

The hardest thing about being debilitated for so long is that you start to believe it. You start thinking this is as good as I can be. You have people telling you how great you are to be up and about, or looking so well. You have people lifting your bags for you, or getting you to sit down all the time, or asking if you slept okay. These are all lovely kind things, but they are a bit addictive. Our little brains are very clever at holding on to the things that make us feel good and safe and protected. They make us run away from the things that challenge us. 

I was left alone to mind my own children this weekend. I was the sole adult in charge overnight, for the first time in months.
I had a panic attack after about an hour. 
I think most people know what a panic attack feels like, but for those who don't, it is basically a bombardment of physical symptoms that make you feel like you are going to die, but obviously you don't actually keel over. 
Which is all well and good, except when you have a medical history that makes it reasonably likely that you could be having a bombardment of medical symptoms that mean you ARE about to die.
I was able to talk myself down from it, and avoided calling the cavalry and/or ambulance. 
And then I felt about a million times better. 
I realised, you know what, I am actually capable of being me, doing the kind of things that Me is good at, lifting my own bags, getting up off my arse, sleeping or not sleeping and not caring either way.  



There are two kinds of people in life, radiators and drains.


I had become a drain.


Personally, I prefer radiators.