I think that maybe, possibly, life might be different for girl doctors than boy doctors.
Not better or worse, just different.
Let's get a few things straight first.
I have never burned a bra, though some of mine are so old and dishevelled they could very easily just self-combust.
I shave my armpits frequently, legs slightly less so. ("Good Things About Chemo: Number, eh, the Only One" - body hair growth tends to zero).
I am very fond of lots of males.
I am more than happy to let someone else take out the bins. That is not a euphemism.
So I don’t fit my own stereotyped view of a feminist.
I am, however, perfectly willing to acknowledge that women have had, historically, the soggy pre-chewn dragged-in-the-mud end of the stick. We have a track record of getting shat on. And it is taking a while for that legacy to shift.
In 1879, there were nine women doctors in the United Kingdom. A whole nine.
Those nine women, as ladies do, had a chat.
They thought, girls, let’s do lunch so we can chat some more.
Let’s chat about how our patients think we’re nurses, and how we aren’t even sure how we feel about that - nurses are nice, kind, caring - are we not allowed be that too?
Let's chat about how the man doctors are inclined to ask us to bring them tea.
Let's chat about how, even though we work ten hours a day, we will still find ourselves being the ones at home reaching under the bed looking for the missing teddy or rubbing the jam off the door handle.
Those women were mighty. They started the Association of Registered Medical Women, which developed into the Medical Women's Federation in 1917.
In 1919, 140 women from 16 different countries met up for a similar chat, and started the Medical Women's International Association. Their provisional constitution had a can't-say-fairer-than-that objective: "exchange ideas and unite efforts for the benefit of mankind".
It turns out there was an Irish branch of the MWIA up to relatively recently, but I had never heard of it. So, a couple of weeks ago when I came across the MWF's advent calendar on Twitter (a different medical woman of note was depicted every day in December), I had a thought:
Turns out, there was indeed an appetite:
Not exactly viral, I know, but still a pretty popular tweet as these things go.
We came up with a hashtag that was too good to be true: #WIMIN - Women in Medicine in Ireland Network.
Then I scurried off and bought a domain, and jimmied up a gmail account, and built a website. Of course, the next trick is to link them all together. Baby steps, chaps, baby steps.
I am only a girl, after all.
Thursday, 21 December 2017
Thursday, 7 December 2017
Nice Blog
One of the funniest things that has come out of writing this blog has been the variety and range of responses to it. Not necessarily to the content, but to its very existence.
There are some people who will never fail to mention it every time I put up a new post.
"I liked your blog", they say.
Sometimes, they'll be more specific and say, "I liked that part where...."
Sometimes, if I've said something a bit gloomy, or controversial, or perhaps just plain boring, they don't elaborate. They simply say, "I liked your blog."
Some people assiduously avoid mentioning it. I mean, it would be on pain of death that they would admit they've read it. How do I know they've read it? I can just tell.
Some people feel like they ought to read it if they know they're going to meet me or be talking to me. It's like knowing who said Mass. They feel they would be caught out if they weren't up to speed.
Some people read the interesting looking ones, and don't bother with the boring stuff. I would totally do that, if it were me. I sometimes don't read the boring ones either, in fact, I just type with my eyes closed. See kie this,
It makes some people embarrassed. They are ashamed at my brashness, my self-exposure. Has she no self-respect, they think to themselves, consciously or not. They squirm on my behalf.
Of course, there are probably a few strangers who read it, and I have no idea what they think. They could be U2 fans, for all I know, and there is no accounting for taste.
So perhaps I will stick in a little secret code, a Masonic wink or nudge, that people can use if they don't want to admit that they've read it, but they'd prefer not to hear me tell the same old boring stories when we meet.
Or they could just say, "Nice blog", and leave it at that.
There are some people who will never fail to mention it every time I put up a new post.
"I liked your blog", they say.
Sometimes, they'll be more specific and say, "I liked that part where...."
Sometimes, if I've said something a bit gloomy, or controversial, or perhaps just plain boring, they don't elaborate. They simply say, "I liked your blog."
Some people assiduously avoid mentioning it. I mean, it would be on pain of death that they would admit they've read it. How do I know they've read it? I can just tell.
Some people feel like they ought to read it if they know they're going to meet me or be talking to me. It's like knowing who said Mass. They feel they would be caught out if they weren't up to speed.
Some people read the interesting looking ones, and don't bother with the boring stuff. I would totally do that, if it were me. I sometimes don't read the boring ones either, in fact, I just type with my eyes closed. See kie this,
It makes some people embarrassed. They are ashamed at my brashness, my self-exposure. Has she no self-respect, they think to themselves, consciously or not. They squirm on my behalf.
Of course, there are probably a few strangers who read it, and I have no idea what they think. They could be U2 fans, for all I know, and there is no accounting for taste.
So perhaps I will stick in a little secret code, a Masonic wink or nudge, that people can use if they don't want to admit that they've read it, but they'd prefer not to hear me tell the same old boring stories when we meet.
Or they could just say, "Nice blog", and leave it at that.
Sunday, 12 November 2017
Bookmarks
I have decided to use this blog for my own nefarious ends for a change, instead of pandering to the masses. (My mum, my Trusty Companion and the Russian bots count as masses, don't they?)
So I am going to do a bit of laptop-tidying and move all my bookmarks onto this page, so I can finally figure out why I was interested in them in the first place. And because giving into OCD feels good.
In no particular order:
Sick Enough? Doctors, Illness and the Scaffold
Dr Philip Berry
Discussing the reasons why doctors are now more likely to call in sick than they were in the past. Also presenteeism, illness-martyrdom, and rising mental health issues in doctors. With a good reply from Jonathon Tomlinson, whose blog covers pretty much every aspect of doctoring you could think of.
Let My Dataset Change Your Mindset
Hans Rosling
Engaging, entertaining, visually-impressive explanation of the changes in worldwide population and health data in the past fifty years.
Fascinating.
A Guide for GPs on Mental Health and Autism
Coventry University.
I was directed to this by Adam Harris of AsIAm, an Irish organisation that support people with a diagnosis of autism.
What strikes me most is that a lot of the suggestions in relation to improving the GP experience (low lighting, quiet, a peaceful place to compose oneself before leaving the surgery) would all be of huge benefit to other patients too - people with dementia, bereaved people, those with anxiety or enduring mental illness, people who have just received bad news. In fact, I can't see how this wouldn't be appealing to everyone who has to attend their GP.
It's Probably Their Fault
Rosamund Snow
A fantastic 12 minute presentation on the disconnect between how we perceive patients' perspectives and the reality. Great insight into DNA rates and the reasons for patients failing to attend clinics.
This is also from Rosamund Snow, about grieving the loss of a "normal" life when you are diagnosed with a serious illness: Bereavement Without a Death
The Dark Side of Doctoring
Eric Levi
A trilogy of blogs about burnout, stress and mental despair in doctors. Cheerful stuff.
What's it Like to go through Cancer Treatment
Dread Pirate Khan
No clue where I came across this, but the analogy of the chemo being the bear and punching your husband in the face is pretty spot on.
Always Look on the Bright Side of Death
Crispian Jago
My favourite cancer blog.
Pain is Weird
Paul Ingraham
This includes two videos that made me think a lot about prescribing for and treating chronic pain conditions. Maybe we need to look at pain differently?
A Mile in my Shoes - Suddy Davidson, shoe size 8
The Empathy Museum
A collection of audio stories from people involved in health and social care in the UK. This one is from a GP who works in Sheffield. An interesting project. I bookmarked it to remind myself to listen to some more of the stories.
Literature about medicine may be all that can save us
Andrew Solomon
My most recent addition and I haven't read it properly yet. I was directed to this by my sister-in-law who is wise and good, so I know I am going to enjoy it.
There are others: the Home Renovation Incentive so I can get money back when we finally fix our roof, SouthDoc so I can check the rota, Standard Issue magazine though it has now moved to podcasts only, but the quizzes were good fun.
Great, now I can tidy it all up and start again.
So I am going to do a bit of laptop-tidying and move all my bookmarks onto this page, so I can finally figure out why I was interested in them in the first place. And because giving into OCD feels good.
In no particular order:
Sick Enough? Doctors, Illness and the Scaffold
Dr Philip Berry
Discussing the reasons why doctors are now more likely to call in sick than they were in the past. Also presenteeism, illness-martyrdom, and rising mental health issues in doctors. With a good reply from Jonathon Tomlinson, whose blog covers pretty much every aspect of doctoring you could think of.
Let My Dataset Change Your Mindset
Hans Rosling
Engaging, entertaining, visually-impressive explanation of the changes in worldwide population and health data in the past fifty years.
Fascinating.
A Guide for GPs on Mental Health and Autism
Coventry University.
I was directed to this by Adam Harris of AsIAm, an Irish organisation that support people with a diagnosis of autism.
What strikes me most is that a lot of the suggestions in relation to improving the GP experience (low lighting, quiet, a peaceful place to compose oneself before leaving the surgery) would all be of huge benefit to other patients too - people with dementia, bereaved people, those with anxiety or enduring mental illness, people who have just received bad news. In fact, I can't see how this wouldn't be appealing to everyone who has to attend their GP.
It's Probably Their Fault
Rosamund Snow
A fantastic 12 minute presentation on the disconnect between how we perceive patients' perspectives and the reality. Great insight into DNA rates and the reasons for patients failing to attend clinics.
This is also from Rosamund Snow, about grieving the loss of a "normal" life when you are diagnosed with a serious illness: Bereavement Without a Death
The Dark Side of Doctoring
Eric Levi
A trilogy of blogs about burnout, stress and mental despair in doctors. Cheerful stuff.
What's it Like to go through Cancer Treatment
Dread Pirate Khan
No clue where I came across this, but the analogy of the chemo being the bear and punching your husband in the face is pretty spot on.
Always Look on the Bright Side of Death
Crispian Jago
My favourite cancer blog.
Pain is Weird
Paul Ingraham
This includes two videos that made me think a lot about prescribing for and treating chronic pain conditions. Maybe we need to look at pain differently?
A Mile in my Shoes - Suddy Davidson, shoe size 8
The Empathy Museum
A collection of audio stories from people involved in health and social care in the UK. This one is from a GP who works in Sheffield. An interesting project. I bookmarked it to remind myself to listen to some more of the stories.
Literature about medicine may be all that can save us
Andrew Solomon
My most recent addition and I haven't read it properly yet. I was directed to this by my sister-in-law who is wise and good, so I know I am going to enjoy it.
There are others: the Home Renovation Incentive so I can get money back when we finally fix our roof, SouthDoc so I can check the rota, Standard Issue magazine though it has now moved to podcasts only, but the quizzes were good fun.
Great, now I can tidy it all up and start again.
Thursday, 9 November 2017
Changes
Things are different now, than they were.
My body is different.
My hair is huge. Oodles of the stuff. It's wiry and sticks up and out. I always had too much hair, and my fear or hairdressers meant that I would do what I was told when they mentioned layers or thinning out, even though my pathetic hair-drying skills left me looking like a Christmas tree (without the decorations). But after losing so much of it, I am too scared to mess with it now. I went to the most expensive man in the salon, and told him to just cut the ends off. Straight. No fuss. He was delighted with himself, it was like going back to Hairdressing Pre-school. Easiest seventy quid he ever pocketed. I told him I had lost a lot of it before, and he said "Oh, how many babies have you had?" I said, "Three. Same as the number of chemo cycles." We didn't chat much after that.
I have scars. Now they have faded, and some are barely noticeable. I still don't have any sensation underneath my liver resection scar on my belly, so I can scrape my nails over it and feel nothing. My portocath just sits there in my upper chest, dutifully waiting. I don't like it.
I forget that I am missing parts of me. I don't think I ever asked how much bowel they took out. A couple of feet, I suppose, since we all know that there's miles of the stuff in there. But it was Large Bowel, not Small Bowel, and there's less of that (weirdly). So my transverse colon presumably became my descending colon. All very boring technical stuff, but I never thought about it before. I never asked. For someone who is generally so curious, I seemed to wilfully ignore most of the nitty gritty about what other people have been doing to me over the past few years. Go on the coping mechanisms!
It shouldn't be much of a surprise, so, that my bowel doesn't work like it used to. One of the main symptoms of bowel cancer is "change of bowel habit" (where your poo puts on a different monk's outfit each day. Kidding.) I never had any noticeable poo problems before I was diagnosed. Now I have the full range. Constipation is, without a doubt, the devil's work. Piles - also no fun. Flatulence - nuff said.
My muscles and joints are achey and creaky. Perhaps chemotherapy accelerates the ageing process. Researchers, look into it, will ya? Cos otherwise I'm just a moany middle-aged woman.
I don't work as much as I used to. I am not in work as much as I used to be, is possibly more accurate. I have had to change how I approach that famous work-life balance. If you got less life, you need less work. I feel guilty about it, sometimes, but not as guilty as I would feel if I spent all day every day working, and then told my children, sorry chaps, I have two weeks to live, shame I didn't get to hang out with you more. (This, of course, applies to everyone. It's just I think about it more. Daily.)
I also feel like I couldn't work more and still be safe. My brain hasn't quite recovered from the chemo fog yet. I hear people say that it never does. I have nominal aphasia, where I cannot find the right word when I need it. I realise this happens to most people, but I noticed it getting much worse during chemo, and it has stayed with me since. It is very frustrating. I feel like I need to take my time at work, that if I rush I will make mistakes.
An aside -
This is so obviously true for all doctors. I have an excuse to slow down. I wish everyone else did, though ideally a non-fatal one. A prominent GP recently called the doctors who work less-than-full-time "portfolio GPs", in a disparaging tone. Like they were wasters, selfish, not fully committed to the cause. Pissed me right off, I have to say. Working eighty hours a week is not a sign of your greatness. It will kill you, or hurt you, or hurt those around you including your patients. It smacks of machismo, which is frankly embarrassing.
So I can't work as hard as I used to, and that's not necessarily a bad thing. I have started doing other stuff, that I enjoy and that help, like writing, and reading, and engaging with the wider world (that's a euphemism for hanging out on twitter). I am less scared than I used to be. I am happy to make an eejit of myself running down the hill to my house and stopping after about 30 yards puffing and panting. I will dance anywhere, any time. I cry every time I hear the opening bars of Don't Stop Believin'.
And despite the aches and pains and memory lapses and farting, that's a good thing.
Sunday, 22 October 2017
Saturday Night at the Movies
Ads with high production values and slightly racy content. No booster seats. No trips to the toilet at the best part. No snooze during the bit where they can't find the unicorn.
It's been so long since I went to a grown-up movie in the cinema, I had forgotten what it's like.
Of course it's a cliché to talk about "living your life to the full" or "making the most of the time you have" when you have been faced with your own mortality, but sure it's inevitable. Our brains are simple things, and if you tell them they can't have something than they suddenly really really want it.
So I have decided to start going to the cinema again. When a movie comes out that I want to see, I'm not going to just read the previews and reviews and watch the promo chatshow appearances, and then regret that I didn't go, and then watch it four years later on a Bank Holiday Monday on RTE, and curse the ads.
I am just going to go.
The only realistic way to do that is to go by myself, because organising a babysitter adds a layer of complication that will make me simply give up. Besides, I am the right kind of movie-watcher. I like to sit, rapt, from the beginning to the very end. Zero chat. Zero noisy sweets. Zero texting or tweeting. And despite the dodgy pelvic floor, no bloody going to the toilet. (What the heck? I mean, what the actual heck is wrong with grown adults that they can't sit still for two hours?)
So I am much better off by myself, where I can sit in the spot of my choosing and isolate myself from the poor quality movie-watchers.
I went last night. I brought camomile tea in a travel mug, and two triangles of Toblerone in a little plastic bag. My mother's training has not been wasted. ("The price of that popcorn! Sure you could go to Paris for a week for that money!" And she could, too.)
A wave of nostalgia and emotions surged over me as the opening credits rolled. Not least because I was watching the sequel to a movie I had watched probably ten times on a grainy VHS in our near-slum of a flat in college. It was probably the first movie I saw that made me realise that science fiction can be more about humanity than alienity (em, err?)
My point being that the story was touching and moving and thought-provoking, and not (just) about shooting people with far-out guns.
I don't really know what I thought about Bladerunner 2049, from a critical perspective, because I was so immersed in the whole cinema experience. The sounds, the taste, the smell - I'd forgotten the beauty of it all.
So another one to add to the list of Stuff I Am Going To Do Because I'm Not Currently Dying - regular trips to the local cinema. Next time I'm going to bring my slippers.
It's been so long since I went to a grown-up movie in the cinema, I had forgotten what it's like.
Of course it's a cliché to talk about "living your life to the full" or "making the most of the time you have" when you have been faced with your own mortality, but sure it's inevitable. Our brains are simple things, and if you tell them they can't have something than they suddenly really really want it.
So I have decided to start going to the cinema again. When a movie comes out that I want to see, I'm not going to just read the previews and reviews and watch the promo chatshow appearances, and then regret that I didn't go, and then watch it four years later on a Bank Holiday Monday on RTE, and curse the ads.
I am just going to go.
The only realistic way to do that is to go by myself, because organising a babysitter adds a layer of complication that will make me simply give up. Besides, I am the right kind of movie-watcher. I like to sit, rapt, from the beginning to the very end. Zero chat. Zero noisy sweets. Zero texting or tweeting. And despite the dodgy pelvic floor, no bloody going to the toilet. (What the heck? I mean, what the actual heck is wrong with grown adults that they can't sit still for two hours?)
So I am much better off by myself, where I can sit in the spot of my choosing and isolate myself from the poor quality movie-watchers.
I went last night. I brought camomile tea in a travel mug, and two triangles of Toblerone in a little plastic bag. My mother's training has not been wasted. ("The price of that popcorn! Sure you could go to Paris for a week for that money!" And she could, too.)
A wave of nostalgia and emotions surged over me as the opening credits rolled. Not least because I was watching the sequel to a movie I had watched probably ten times on a grainy VHS in our near-slum of a flat in college. It was probably the first movie I saw that made me realise that science fiction can be more about humanity than alienity (em, err?)
My point being that the story was touching and moving and thought-provoking, and not (just) about shooting people with far-out guns.
I don't really know what I thought about Bladerunner 2049, from a critical perspective, because I was so immersed in the whole cinema experience. The sounds, the taste, the smell - I'd forgotten the beauty of it all.
So another one to add to the list of Stuff I Am Going To Do Because I'm Not Currently Dying - regular trips to the local cinema. Next time I'm going to bring my slippers.
Thursday, 19 October 2017
Rehab
I ain't got the time....
No, I'm not about to confess that I have secretly been snorting lighter fluid, or horsing into the horse.
My kind of rehab is much more mundane.
I am trying to get my body and mind back to where it should be, or where I imagine it should be.
In psychiatry, they talk about your pre-morbid personality. What you were like "before". Before you were the way you are now. Before you became depressed, or psychotic, or anxious, or otherwise "not yourself".
It makes me laugh. I've always been fierce morbid, there was never a time I wasn't, so how could I have a pre-morbid personality?
Anyway, what they are trying to establish is the difference between how you feel now, now that you don't feel great, compared to how you felt in the past.
Sometimes I ask my patients, "when was the last time you felt really well?". I know now, when I am asking, that for some patients the answer is "never". Their eyes glaze over and they look at me, puzzled. What is this "well" you speak of?
I used to feel pretty good, most of the time, but my brain was still full of busy-ness and concerns and frustrations and anger at all sorts of little things. For the past ten years I have been pre-occupied, as all parents are, with child-related ruminations. Why won't she sleep? Why won't she wake up? Those stairs look dangerous. There's no way I'm letting go of his hand. Why won't she stop asking why? TIDY UP!
Then my brain had to make space for a few more preoccupations. Cancer. I couldn't even be bothered going it to again now, I'm so bored of it. But it took up quite a bit of space in the old noggin, where there wasn't a huge amount of wriggle room anyway.
So some of the worst stuff got shoved to the side. The taste, the smell, the noise, the pain, all got swept over to a corner of my mind, like the hasty brush-sweepings of someone whose poshest friend has suddenly announced they're arriving for tea.
But the posh friend has gone home again now, for a while, and the grime in the corner probably needs to be dealt with.
I've been getting some flashbacks. Fainting in ICU. Leaking drainage bags. Lying on the beach after chemo, unable to hear or see or move.
And then some flashforwards. What will I do when (if) I have to do it again. Terror for allowing the (if) in. Don't get cocky lady, we all know what happens then.
I am trying to fix my body. Pilates. Physio. Running!
(Running. For the love of god cancer, you could have left me with some dignity).
{The things they don't tell you about running:
If you put on the right kit - the leggings, the little socks, the runners that say Running on the inside, then it's more or less impossible NOT to run.
If you don't go to the toilet before you leave, and your pelvic floor is in tatters, then well let's just say you won't make that mistake twice.}
It all takes quite a bit of effort.
There is a movement afoot around cancer rehabilitation, with clinics and healthcare providers offering good advice on physical and emotional recovery after cancer treatments. Not for free though. There is a cancer market, massively expanding, and the gap has been spotted. Which is fine, if you can afford it. It would be great to see some kind of effort being made by the public services to support people after their treatment has ended, not least because it could reduce unnecessary investigations and admissions for those people whose post-cancer mental and physical state causes them to be really quite unwell.
So I'm trying to forge ahead with getting back to my self. Not my "old" self, not how I was "before", because there is no way of erasing the past three years' experiences. I wouldn't want to, given how many positive things have happened and how much I've learned. But just back to someone who isn't consumed by the omnipresence of cancer.
"Hello, is that the Priory? Yes, I'd like to check in please. I'd like to detox myself from cancer."
No, I'm not about to confess that I have secretly been snorting lighter fluid, or horsing into the horse.
My kind of rehab is much more mundane.
I am trying to get my body and mind back to where it should be, or where I imagine it should be.
In psychiatry, they talk about your pre-morbid personality. What you were like "before". Before you were the way you are now. Before you became depressed, or psychotic, or anxious, or otherwise "not yourself".
It makes me laugh. I've always been fierce morbid, there was never a time I wasn't, so how could I have a pre-morbid personality?
Anyway, what they are trying to establish is the difference between how you feel now, now that you don't feel great, compared to how you felt in the past.
Sometimes I ask my patients, "when was the last time you felt really well?". I know now, when I am asking, that for some patients the answer is "never". Their eyes glaze over and they look at me, puzzled. What is this "well" you speak of?
I used to feel pretty good, most of the time, but my brain was still full of busy-ness and concerns and frustrations and anger at all sorts of little things. For the past ten years I have been pre-occupied, as all parents are, with child-related ruminations. Why won't she sleep? Why won't she wake up? Those stairs look dangerous. There's no way I'm letting go of his hand. Why won't she stop asking why? TIDY UP!
Then my brain had to make space for a few more preoccupations. Cancer. I couldn't even be bothered going it to again now, I'm so bored of it. But it took up quite a bit of space in the old noggin, where there wasn't a huge amount of wriggle room anyway.
So some of the worst stuff got shoved to the side. The taste, the smell, the noise, the pain, all got swept over to a corner of my mind, like the hasty brush-sweepings of someone whose poshest friend has suddenly announced they're arriving for tea.
But the posh friend has gone home again now, for a while, and the grime in the corner probably needs to be dealt with.
I've been getting some flashbacks. Fainting in ICU. Leaking drainage bags. Lying on the beach after chemo, unable to hear or see or move.
And then some flashforwards. What will I do when (if) I have to do it again. Terror for allowing the (if) in. Don't get cocky lady, we all know what happens then.
I am trying to fix my body. Pilates. Physio. Running!
(Running. For the love of god cancer, you could have left me with some dignity).
{The things they don't tell you about running:
If you put on the right kit - the leggings, the little socks, the runners that say Running on the inside, then it's more or less impossible NOT to run.
If you don't go to the toilet before you leave, and your pelvic floor is in tatters, then well let's just say you won't make that mistake twice.}
It all takes quite a bit of effort.
There is a movement afoot around cancer rehabilitation, with clinics and healthcare providers offering good advice on physical and emotional recovery after cancer treatments. Not for free though. There is a cancer market, massively expanding, and the gap has been spotted. Which is fine, if you can afford it. It would be great to see some kind of effort being made by the public services to support people after their treatment has ended, not least because it could reduce unnecessary investigations and admissions for those people whose post-cancer mental and physical state causes them to be really quite unwell.
So I'm trying to forge ahead with getting back to my self. Not my "old" self, not how I was "before", because there is no way of erasing the past three years' experiences. I wouldn't want to, given how many positive things have happened and how much I've learned. But just back to someone who isn't consumed by the omnipresence of cancer.
"Hello, is that the Priory? Yes, I'd like to check in please. I'd like to detox myself from cancer."
Tuesday, 3 October 2017
Pass Me My Trumpet Please...
....I'd like to give it an old blow.
Last week was a busy one.
On Sunday, my daughter and I participated in the Cork Women's Mini Marathon.
For those of you who don't know (which included me up to ten days ago), this event is possibly the best example of a misnomer that you're likely to come across.
It has as many similarities with a marathon as a Mars Bar does with the red planet. It's just got the same name. But we had a fantastic day and walked the four miles at a slightly-faster-than-a-stroll pace, which meant we came in mid-table. And we were delighted with ourselves.
On Wednesday, I became a published author.
I wrote a little piece for the Medical Independent about, guess what, me having cancer and all.
That old chestnut. You'd think I'd get over it.
On Thursday, we made some of the finest cupcakes ever to be sold at a school cake sale.
On Friday, we attended the Mercy Stars awards run by the Mercy Hospital Foundation, and I won a golden star!
Event Organiser of the Year
That's me with Jerry Flynn, the chairman of the Board of the Foundation, and my lovely husband Derek. I'll let you figure out who's who.
On Saturday, I went to the Irish Cancer Society's Living Well Conference, and met some fellow advanced-level cancerheads. I was struck by how easy it is for people to get the wrong end of the stick, through no fault of their own. Nearly everyone who spoke about having secondary cancer was confused by what it meant - are they dying? When? How can they be, when they feel so well?
For me, after many years of dealing with cancer, it is easy to see that sometimes it's a fecking divil and rips through people, and sometimes it's just a minor inconvenience. And I know that there is no way of knowing where you stand with it. It seems that many patient are lulled into a false sense of security by concepts of "all-clear" and the five year rule (follow-up usually stops after five years as the likelihood of recurrence then is low. Low though. Not zero.)
We got good advice about diet, and cancer trial participation, and how to pester your oncology team over and over if you want to get anything done.
I felt a little bit on the periphery though, like I didn't really belong, straddling the patient-doctor divide like someone caught climbing over a fence. And I don't have breast cancer, so I am definitely an outsider.
On Sunday, I went bag-packing in Tesco for a friend's favourite charity, Moving Mountains, which is an NGO that supports health and education initiatives in Kenya.
I had done this bag-packing thing before, a long time ago, before I went to Kenya myself with the Surgeon Noonan Society. I remember being bored and hungover and wishing I was in the pub.
This time, though, I found it fascinating. We were in a city centre shop, and the diversity was incredible. I would guess that at least ten different nationalities passed through the tills in the two hours I was there. Being incorrigibly nosy, I got to check out what everyone was buying on a Sunday evening.
Quite a lot of alcohol, it has to be said. But interesting stuff, like Sambuca, and Jagermeister (on a Sunday??), and good old vodka.
One couple bought 8 cans of Heineken and all the ingredients for a birthday cake, including TWO cans of whippy cream.....
Another woman bought two slabs of beer and four bottles of bleach. Hmmm. I had to stop myself from interfering there.
One poor boy was asking his mum for coins for the sweet machine behind us. She started getting change out of her purse. He was mildly surprised, but delighted. She then proceeded to dump the coins into my little bucket. I am not sure I have ever seen such abject disappointment on a child's face.
So, there we are now.
Amn't I great?
Saturday, 9 September 2017
Good Things About Cancer
I have started reading again. Easier, obviously, when I was spending hours/days in hospital with intermittent wifi, but I have kept up the habit. And I try to read the books I really want to read. I go out of my way to find them, which I never would have done before. I continue to read shite too occasionally, because that can't be helped.
I am now (even more) immune to the aggressive marketing that bombards women of my age. I merrily count up the seven signs of ageing on my face. I squeal with glee every time I see a new wrinkle. I now believe the spiel I've always told my children, that each white hair is a magic strand that gives me special powers.
I bought this stuff:
Nobody's more pro-ageing than me. Bring it on.
I need never, ever, ever again wear Spanx. (Unless I want to).
Monday, 4 September 2017
Anatomy of a Scan
Scan minus 11 weeks: Skipdy-do, happy happy, I have this cancer thing totally nailed.
Scan -6 weeks: Holidays. Yum. Guinness. Yum.
Scan -3 weeks: Hey. Where's my scan appointment?
Scan -2 weeks: Em. Excuse me? Could I possibly get that appointment please? Just, you see, children, school, work, you know. But totally in your own time, no rush, I'm cool.
Scan -1 week: Where the feckety-feckpots is that appointment???
Scan -6 days: Ok. Fine. We can do this. Now what is that strange pain in my right side. You know, just over my liver.
Scan -5 days: I wish I could sleep.
Scan -4 days: I wish that pain would stop moving towards my throat.
Scan -3 days: Sob. So mean. Why is the world so cruel? Sob. Sniffle. So unfair.
Scan -2 days: What do you mean, narky? YOU WANT NARKY??
Scan -1 day: Eerily calm.
Scan Day: Oooh. Busy. I like busy.
Scan +1 day: No phonecall. I mustn't be imminently dying so.
Scan +2 days: Oh my god. I'm dying. Right now.
Scan +3 days: Not dead yet. But I'm fairly sure it won't be long.
Scan +4 days: Sod it. Panic call. I'm dying here, Oncologist. What's that? It's all perfect? Stable? No new lesions? Hunky dory? Why thank you. No, thank YOU. I do apologise for being so pushy. You are very kind. No YOU. Yes we are all marvellous. Thank you.
Thank you.
Thank you.
Tuesday, 15 August 2017
Could life ever be sane again?
I wrote before about Kubler-Ross and her stages of grief, as depicted by Homer Simpson.
I thought at the the time I was proceeding remarkably efficiently through the stages and was coping spiffingly with the whole thing.
That was two years ago, and my brain was geared up for a twelve-month final chapter to my life, filled with joy and sadness and making-the-most-of-it and finally surrendering to the inevitable in a beautiful light-green silk dress in a bed with 5-billion-thread-count sheets, gazing out on the ocean. That was my vision of how it was all going to wind up neatly for me.
Now, though, the gap between The Terribly Bad News and Death has widened considerably, to the point where I don't really know where I am at all on the continuum.
On a day to day basis, I appear to be still washing up, and changing sheets, and buying school books. I am not lying back in silk pyjamas having meaningful conversations with long-lost friends (though I still think about trying to track them down, one of these days). I have more and more moments in the day when I am not thinking about The End. In fact, I have more and more moments when I think, you know what, maybe this was all just another example of my tendency towards exaggeration and melodrama. Maybe I made a big mountain out of a stage 4 molehill. Maybe I can forget all about the whole sorry business and get back to deciding which shoes I really need next.
And then the palpitations kick in, and the head-swim, and the throat-closing, and the panic attack rushes towards me like a huge bounding dog. I have to say "hello nice doggy, it's okay, calm down", while trembling with the fear that he is going to rip my head off with his drooly stinky jaws. The tears start leaking from my canthuses (great medical word. Almost as good as philtrum).
The day will* come, when the Bad News train will re-enter the station, and I will be back on the path of fairly certain death. There is something ridiculously reassuring about knowing what's going to happen next, even if that something is horribly tragic. This liminal in-between bit is very hard to get my head around.
A fellow cancer blogger Crispian Jago wrote about not wanting to pre-order the new iPhone because he would have to sign up for a two year contract, but has been told he has only 18 months to live.
I didn't buy any new clothes for the first year after I was diagnosed, except cheap tat from German supermarkets, or expensive dresses that I thought would look good in a coffin.
Every time I book a holiday, I have to weigh up the price of the flights, knowing that I won't get it back if I'm too sick to travel when the time comes, and saving myself the bother of even beginning to ask someone to insure me. (The answer would be "eh, no.")
I have asked my oncologist a few times if he would take my Portocath out. He sidestepped the issue the first couple of times, then finally he had to go full Mother Gothel and tell me it is NEVER COMING OUT. There will never be a time when I won't potentially need it.
I look at newborn babies and my stomach heaves with want. I have three children, I am more blessed than I could possibly imagine, but the fact that I can't choose to have another is heart-breaking. (Again, this is not rational thinking - my back and womb would probably never have permitted me to carry another baby - but my brain just says "I want I want" simply because I can't.)
I have moved from planning three months ahead to six months, but occasionally I let myself go wild and think "next year we'll go to Glastonbury!"
I reach out my hand towards the future and then I quickly slap it away. Don't touch.
What's the best way to manage the uncertainty? Should I spend all day acknowledging that yes, my life is irreparably banjaxed? Or should I mostly ignore the background terror and simply accept that occasionally it's going to come rampaging up behind me, snarling and growling and snapping at my face?
Honey pie, I'm not safe here.
But I don't really have anywhere else to go.
*you know, statistics and what-not
I thought at the the time I was proceeding remarkably efficiently through the stages and was coping spiffingly with the whole thing.
That was two years ago, and my brain was geared up for a twelve-month final chapter to my life, filled with joy and sadness and making-the-most-of-it and finally surrendering to the inevitable in a beautiful light-green silk dress in a bed with 5-billion-thread-count sheets, gazing out on the ocean. That was my vision of how it was all going to wind up neatly for me.
Now, though, the gap between The Terribly Bad News and Death has widened considerably, to the point where I don't really know where I am at all on the continuum.
On a day to day basis, I appear to be still washing up, and changing sheets, and buying school books. I am not lying back in silk pyjamas having meaningful conversations with long-lost friends (though I still think about trying to track them down, one of these days). I have more and more moments in the day when I am not thinking about The End. In fact, I have more and more moments when I think, you know what, maybe this was all just another example of my tendency towards exaggeration and melodrama. Maybe I made a big mountain out of a stage 4 molehill. Maybe I can forget all about the whole sorry business and get back to deciding which shoes I really need next.
And then the palpitations kick in, and the head-swim, and the throat-closing, and the panic attack rushes towards me like a huge bounding dog. I have to say "hello nice doggy, it's okay, calm down", while trembling with the fear that he is going to rip my head off with his drooly stinky jaws. The tears start leaking from my canthuses (great medical word. Almost as good as philtrum).
The day will* come, when the Bad News train will re-enter the station, and I will be back on the path of fairly certain death. There is something ridiculously reassuring about knowing what's going to happen next, even if that something is horribly tragic. This liminal in-between bit is very hard to get my head around.
A fellow cancer blogger Crispian Jago wrote about not wanting to pre-order the new iPhone because he would have to sign up for a two year contract, but has been told he has only 18 months to live.
I didn't buy any new clothes for the first year after I was diagnosed, except cheap tat from German supermarkets, or expensive dresses that I thought would look good in a coffin.
Every time I book a holiday, I have to weigh up the price of the flights, knowing that I won't get it back if I'm too sick to travel when the time comes, and saving myself the bother of even beginning to ask someone to insure me. (The answer would be "eh, no.")
I have asked my oncologist a few times if he would take my Portocath out. He sidestepped the issue the first couple of times, then finally he had to go full Mother Gothel and tell me it is NEVER COMING OUT. There will never be a time when I won't potentially need it.
I look at newborn babies and my stomach heaves with want. I have three children, I am more blessed than I could possibly imagine, but the fact that I can't choose to have another is heart-breaking. (Again, this is not rational thinking - my back and womb would probably never have permitted me to carry another baby - but my brain just says "I want I want" simply because I can't.)
I have moved from planning three months ahead to six months, but occasionally I let myself go wild and think "next year we'll go to Glastonbury!"
I reach out my hand towards the future and then I quickly slap it away. Don't touch.
What's the best way to manage the uncertainty? Should I spend all day acknowledging that yes, my life is irreparably banjaxed? Or should I mostly ignore the background terror and simply accept that occasionally it's going to come rampaging up behind me, snarling and growling and snapping at my face?
Honey pie, I'm not safe here.
But I don't really have anywhere else to go.
*you know, statistics and what-not
Friday, 28 July 2017
Fashion Crisis Hits West Cork
I tweeted
one tweet a few weeks ago with the words “fashion blog” in it.
I was being
ironic.
I suddenly
gained about a dozen followers, all pouncing on that precious phrase, in case I
was going to be the new Kourtney or Kim or Khoever.
Once again,
I was reminded of how out of the loop I generally am when it comes to popular
culture. The fact that I really, really don’t care about Kardashians, or
contouring, or what a bucket hat is, means that there are whole swathes of
social media conversations that are divil-all to do with me.
And that
suits me just fine.
I have,
though, been wandering around the periphery of an ongoing social media debate
which is of some interest to me. It’s got all of my favourite ingredients:
cancer, food, medical advice, science, evidence. It relates to the fierce war
that is raging between two factions, both of whom are adamant that they are
right, and insistent that the other is evil and conniving. Pretty standard war
stuff, then.
There are
some great words being used in this debate: nutribabble, woo, ketogenic (it
starts with a K! it must be right!), Goop (makes me think of Augustus Gloop, whom I am fairly sure is not the target market).
It centres
on the very much not-new propensity of sometimes well-meaning, sometimes
unscrupulous types to offer alternatives to the traditional, establishment-led
treatments for various ailments. Been doing it for years. Snake oil being a
fairly classic example of the kind of thing we’re talking about.
It works
like this:
(a) find the thing people are most afraid of, and are most likely to die from
(a) find the thing people are most afraid of, and are most likely to die from
(b) suggest to them that there might be a better way of getting rid of it
(c) subtly suggest that what they have been told by the people they thought they could trust is actually ALL WRONG
(d) not-so-subtly suggest that what they are now being told is ALL RIGHT
(e) sit back and watch them choose your (not free) method over the other (mostly free) one
(f) get in a huff when someone suggests that, perhaps, simply believing something to be right, or good, or true, does not unfortunately make it so
(g) say that those other old stick-in-the-muds are just jealous, or money-grabbing, or egotistical, or stupid
(h) get in an extra-big huff when the advertising standards people tell you to stop saying things that aren’t true in order to sell your ideas
I have been
fortunate enough to be able to stay away from the woo-peddlers. No crystals, or
angels, or coffee enemas, or chelating agents for me, no sirree. Not just
because I am a traditional, stick-in-the-mud,
my-medicine-is-the-only-good-medicine kinda of gal. And not only because I am too lazy
to go actively seeking out stuff that sounds icky and hard work. And not simply
because I have been so fortunate that the treatment that I have been getting has
been so successful.
I think it
might be because I have a highly tuned bullshitometer, which has stood me in
good stead in many a Cork nightclub/Nairobi taxi/Honduran fleamarket.
But there
are many other people who are open, and kind-hearted, and willing to listen and
believe when someone tells them that they are on their side. They are not
grumpy old cynics. They presume that people are fundamentally good. (Not Nick Cave fans, then). And if they are sick, and sad and really hoping to feel
better, they are particularly likely to grab the outstretched hand, no matter
what unicorn-dust that hand is offering.
What’s the
harm, though? So what if the unicorn-dust is entirely useless at actually
curing what’s killing them? Can’t they have hope? Won’t positive thinking get
them through, like Dumbo and his feather?
Hey, I
would be all for it if it did. But they are countless stories that show this is
not the case.
(Well, I
say stories, but what I mean is scientific evidence based on multiple
longitudinal studies and backed up by rigorous research. But that doesn’t sound like nearly as much fun as unicorns.)
It’s all a
bit of a shame really, because as usual the truth lies somewhere in between. It
is probably fairly reasonable to say that what you eat and drink can indeed
affect your health.
I can’t see where we would fail to agree on that one.
I can’t see where we would fail to agree on that one.
A litre of
vodka a day = likely to be bad for you.
Your
bodyweight in hot dogs every week = also not great.
More fruit
and veg, fewer Cheesy Wotsits = a good idea.
There is
EVIDENCE (ooh, the real stuff, not the makey-up Google-search pixie dreams) to
support the physiological benefits of a number of nutritional choices.
But there
is a risk that this will get drowned out by the hollering of the opposing
forces, on the one hand insisting that cancer is all down to the fusilli, on the other
hand dismissing any suggestion that quinoa might have all the answers.
I choose to
put “better” food into me than I used to.
Does it help? Has it changed the course of my disease? Who knows.
But at least I am not paying someone to tell me that it is the ONE TRUE WAY and that all other courses of action are doomed to failure.
Does it help? Has it changed the course of my disease? Who knows.
But at least I am not paying someone to tell me that it is the ONE TRUE WAY and that all other courses of action are doomed to failure.
Anyway.
Back to
fashion.
Here are my
tips, all the way from a windy little island in the Atlantic:
- Wellies without socks will cause above-ankle welts
- Always put suncream on your feet
- Wind+seasalt can create hair so immovable you may never need, or be able, to brush it again
- Trying to hold on to your hat and a toddler at the same time is untenable. Choose one.
- Lash the nail varnish on indiscriminately, then clean off the skin splashes with a q-tip dipped in nail varnish remover. (This is a real tip. You're welcome.)
Subscribe to:
Posts (Atom)
-
I am anti-abortion. I am pro-choice. For years, I have been able to have these thoughts, in my head, keeping them to myself, reasona...
-
(Thanks for the title, Doug) I am horrified to realise that I have come all this way without ever sharing with you all (The Masses, I'...
-
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. ...