And The Loser Is....

"Multi-award winning." 

That has quite a ring to it, doesn't it? Who wouldn't want that tacked on to their name? 

Kudos, recognition, respect. Accolades and honours. We all love that kind of thing. 

I was very pleased with myself when I was nominated for GP of the Year this year in the GPBuddy Awards. My nominator took the time and effort to write about me and the various little crazinesses that I do, and put my name forward for consideration. I am very grateful to him for that (thanks Mike!) and for me that is the true spirit of such an award - having a colleague or friend go out of their way to raise you up and acknowledge your effort or commitment to whatever "cause" floats your boat. 

I assumed that that is how all awards work. I have nominated other people for various accolades, though so far none of them has been short-listed. Perhaps I need to up my gushing game, perhaps I am understating their greatness, but I will persist, and I hope that one day I will be the proud nominator of a Winner. 

I assumed that a person with good intentions would nominate another person with good credentials, and the good judges would evaluate each nominee's merits and acknowledge that while everyone is great, one person is more great than the others. 

And that seemed to be the case with the GPBuddy Awards. Good individuals and good teams got the recognition they deserved, and apparently the atmosphere on the evening was collegiate and warm (I wasn't there, being tucked up in bed across the country preparing for another Big Day in my life at dotMD).

I had got the bug though, and the FOMO, and I wanted to continue the buzz. So I looked into the Irish Healthcare Awards, which seemed to be the Oscars of medical awards in Ireland, and I figured I would throw WiMIN's hat into the ring. The hat-throwing, however, would cost the organisation nearly €300. Hmmm, I thought, that seems a bit steep. But what do I know? It is the Oscars, after all. 

Lo and behold, #SundayWiMIN was shortlisted in the Best Use of Social Media category. Phew, I thought, it would have been a shame if that money had been wasted, when it could have been used to support our mentoring programme, or to subsidise a student to attend our conference, or as a bursary to support research into issues relevant to gender inequity in Ireland. 

So we received nice fancy social media gifs to announce our success at making it onto the shortlist, and I looked up the date of the awards night to make sure I could be there to (hopefully) lift the trophy. It was on a Wednesday night, in Dublin. I guess it is only culchies who are concerned about going out late on a school night.

It was in a once-fancy hotel, in a still-fancy part of town. That's how it goes. At least it wasn't in the very-fancy hotel down the road, because that would be too expensive. 

I looked hard for the part of the website which stated how many free or subsidised tickets would be allocated to the finalists, in order that they could attend to receive their potential prize. 

Oh. 

That would be None. 

I found the section on How to Book a Table. My hurried lunchtime cheese sandwich paused at my lips as I read the price of the tickets, and then read the words "ex-vat" next to them. Per table? Per county? Perhaps they meant you were buying the seat, plus the cutlery and crockery, and all the pots that were used to make the food, and maybe a few shares in the vineyard as well? €280 is quite a bit more than I would usually spend on a three-course hotel meal. 

But this is Dublin, and doctors. They are all hanging around in their Louboutins and Lexuses. What do us culchies know? And it would be uncouth to mention money, right?

It turns out that the event is sponsored, too. Five hundred people at nearly €300 a head plus, what, five to ten grand per sponsor? 

Fair play to them. That is a very sound business plan. Each year there is a chosen charity partner, and I assume the donation to them is significant. 

I have no idea how many attendees bought their own tickets. Most of the finalists were members of large organisations, many within the HSE but some private or charitable. The opportunity for team-building and staff engagement was very evident, and it was clear that many people were getting a lot of enjoyment out of the evening. It is always lovely to dress up and spend time outside of the workplace with your colleagues, and it certainly adds to the team spirit once you are back at the coalface. 

It just seems a shame that the experience has to cost so much, making it more or less impossible for people in smaller organisations, or individuals, to attend or to even consider nominating a colleague. A GP is very unlikely to fork out €300 to nominate their buddy up the road, and their buddy might not be too pleased with having to find a locum so they can hoof up the country mid-week for an overpriced meal in a three star hotel. 

And yes of course #SundayWiMIN didn't win, and of course I'm just bitter, and of course if we had won I would have been singing the praises of the whole enterprise. But a quick scoot around the internet revealed not a single other "industry award" that required an entry fee of a similar amount, the majority having no charge at all to enter. 

I wonder if there were any "nominees" at the Irish Healthcare Awards who weren't "shortlisted". I suspect not. I have to question the integrity of an event which is supposed to highlight the wonderful work done by healthcare workers around the country, which is composed entirely of people, groups and projects who have a spare 280 quid to throw at the organisers. I could not find a single other Healthcare award in Ireland or the UK where such an entrance fee was charged. 

I had a lovely night meeting other WiMIN and chatting with fellow GPs, but I won't be going back unless I am sure that it is no longer a cynical money-making racket. 

(Or until I can find anybody who might collect a brown envelope....)

Kindred

I have a love-hate relationship with cancer books. They are either brilliantly written, which makes me jealous, or they are terribly written, which makes me think that there is no challenge to getting published once you put the words "I kicked cancer's butt" in the covering letter. 

If they are too close to the bone for me, I wince. If there are too many crystals and angel therapies, I sigh. If they are too sentimental, I throw my eyes up to heaven.

I started reading Stephen Bradley's book "Shooting and Cutting" with trepidation, because I wanted to like it. Not too much, but enough. I like his missus on the telly and, from the little I know of him through Twitter, I like him too. 

Unfortunately though, he has the same cancer as me, with massive liver metastases at diagnosis, a large bowel cancer primary, and a few errant lung nodules after the fact. He has children close in age to mine. He works in an industry with which I have long been fascinated and am innately connected, since my granny was an actress eighty years ago (thus making me a Hollywood Expert). Surely I would be disappointed, with so many potential bone-wincingly-close parallels. 

Nope. 

It was gripping, moving, intriguing, enlightening and funny.

He mentions some of my favourite things, like John Creedon, and Muiris Houston, and general anaesthetic. 

He is able to talk blithely about his fellow patients and the doctors who treat him, unconstrained by the confidentiality clauses that hang over the heads of doctor-authors. 

He is warm and kind and gracious about those who have cared for him, which I take as a personal compliment on behalf of all of us much-maligned HCPs.

I read the book in two days, during which time I also watched his movie Sweety Barrett, which is a lovely redemptive tale but also has the added bonus of Cillian Murphy and Andrew Scott at roughly age 12 with the worst haircuts of their lives.

This is a cancer book that I am happy to have read. 

Sheeran

Many years ago, we went for an early afternoon pint in a famous pub in Galway. We had a few shopping bags with us, which legitimised us, made it okay for us to be having a swift one in between the middle-class pursuits of spending money on overpriced clothes and, later on, on overpriced food. 

There was a small group of people at the table next to us, who were very definitely the Wrong Sort. Three men. Too loud. Cider. Obviously had been there for a while. Two of them left suddenly, knocking over a stool and creating a ruckus. The third fella decided he wanted to stay for a chat. I stiffened up, apprehensive and unwelcoming, wishing he had followed his boyos into the street to go and mess up someone else's afternoon. But he started to tell a story, and I found myself being drawn in. 
He described his school days, where he had sat in the classroom, the name of his teacher. He told us that he felt shy and awkward all the time. 

He described how, any time he tried to answer a question, his teacher would say to him, "Put your hand down Sheeran. You're wrong."


I think about this a lot.
About how many of us are told, verbally or otherwise, to put our hands down. 

A Scary Weekend in Galway

Something terrifying happened to me last weekend. 

All of my worst fears came together in one place.

Night demons, insomnia, sleep paralysis.

Zombies, with insatiable appetites, begging me to help them.

Insensitive robots, robbing me of my humanity.

Murder, homicide, manslaughter. Bodies in fields. 

Jazz.

Ungrateful heartsink patients. 

Patients that are too nice. 

Nurses from Roscommon.

Cancer talk.

Death talk (with details).

Outpourings of love.

Absolutely terrifying. 

I wish it had never ended.

#dotMD19

The Trope of Tralee

I want to be really critical about an opinion piece I read in the paper, but my criticism is that the author is being over-critical, and the irony is holding me back.

.....

Ok, that didn't last long.

The Rose of Tralee is a peculiarly Irish phenomenon which has taken place at the end of every summer for the past sixty years. It is a competition for women, and the prize is to become the Rose of Tralee for a year, which means that the woman travels around Ireland, and the world, as a sort of tourism ambassador. There are financial awards through sponsorship and brand-endorsement deals, the use of a new car for a year, publicity shots, media coverage, and a nice tiara. A number of former Roses have gone on to develop media careers afterwards, but many more simply continue with their own profession once their year as a Rose has drawn to a close.

So we have educated professional women, from many walks of life, from reasonably diverse backgrounds (the women represent the Irish diaspora from all over the world), who apply to showcase themselves for an opportunity to represent their country on an international stage. 

If men were doing this, we would call it profile-raising, talent-showcasing, self-promotion. We would respect and admire them for putting themselves out there and showing self-belief. We would decide that one of them was better than the others, and we would respect that the judging committee would make a decision based on their overall suitability for the job. 

Because they are women, many, many, exhaustingly many, people feel that this competition should be disparaged as a "beauty contest", a "lovely girls competition". They deride and belittle the women, the judges, the presenter and anyone else who has anything to do with it. They rant about it being sexist, anti-feminist, antiquated. 

The particular article that has got my blood boiling, describes how the author watched the show (for just fifteen minutes), and found herself judging the women for how they presented themselves, and wasn't that terrible. She then (without duress, presumably) went to Twitter to see what other people were saying about the women. She thinks this is awful and terrible too, as she scrolled down (possibly tittering slightly when she read some of the wittier comments). But she mostly tutted, and sucked her teeth, and thought "those poor exploited women, would nobody put a sheet over their heads and escort them back to their mammies so that we can stop judging them". 

Not a notion of the irony of describing herself as a "rampant feminist" and yet dismissing thirty-two adult women's independent decisions to enter a competition which is based on how they represent themselves to a large audience. Yes, they wear lovely dresses. As do I, when I am hoping to make a good impression. They get their hair done, choose their [product-placement] jewellery carefully, put on make-up. Again, pretty much universal behaviour for women who wish to show themselves at their best. Men in a similar situation would likely wear a good suit, shiny shoes (maybe even without socks - shudder), have a hot towel shave, and do some silly flicky thing with their hair. I have judged those men in that sentence, exactly as I would do if they were up on stage. That is what we do! We are always judging and being judged. The world is hierarchical, and that is how it is. 

The author then moves on to discussing women's magazines, and the Daily Mail's Sidebar of Shame (of which I was blissfully ignorant, but she apparently is very familiar with). She criticises the tabloid culture of body-shaming and the objectification of women. She then snidely comments that some women are complicit in this, having tipped off the paparazzi and therefore presumably profiting from their own images. Shock horror. 

OF COURSE these hate rags are evil and sexist and racist and exploitative. I have just watched the Jade Goody documentary, and it raises so many questions about consent and privacy, but also about a person's right to exploit those publications right back by playing the game against them. Jade squeezed every last drop out of those vultures, and vice versa. Who had the moral high ground? The woman who saw the opportunity to earn  bucketloads of money for the boys she knew she was leaving, or the now-disgraced editors and PR agents? 

Yes society should not work this way. Yes people should be judged solely on their achievements, professionally and personally, and not on the size of their breasts or the pertness of their arse. 

But to dismiss a woman's choice to stand on a stage (fully clothed) and to tell her story, to represent her county or country, to showcase her talents and to do so in a competitive environment is one of the most anti-feminist things I have ever heard. That she does not see the hypocrisy in deriding these women is simply jaw-dropping. 

We should be lauding those women's self-confidence, self-belief and self-worth. 

Because that is what ill-informed, snide, uneducated commentary can strip away from women. 

If they choose to consume that kind of dirge. 

They could just read better newspapers. 

Terminalogy

I’m going to go out on a limb here. 

Stage 4, metastatic, advanced cancer. 

Not the same as terminal. 

It is likely to become terminal, but it is not the same. 

You can be one, and not the other (with a probable yet in brackets).

So arbitrary rules that apply to terminal illness do not automatically apply to stage 4 cancer.

Free medical care for all would be a wonderful thing. Free medical care for all cancer patients would be a wonderful thing. 
But health economics is a tricky complicated multi-faceted balancing act, and unfortunately at present it is simply not possible to provide free healthcare for all of those people (remembering that 50% of us will get cancer). So then we need to decide which cancers are more cancerous than others. Well, there’s no stage 5, so stage 4 wins, right? 
But I still work as much as I can, and I am lucky enough to have income protection payments. I don’t have to have any treatment currently. I am well. And I have stage 4 cancer.

I don’t believe I should automatically get a medical card.

There.
I’ve said it. 

Another perk that terminal patients get is amnesty from all public confrontation, criticism or approbation. 

Unfortunately I realise I have talked myself out of deserving that. 

It is one of the things I look forward to, when my time comes. 

But I am not entitled to it yet.

Insurance

I won't pretend that I have ever been a huge lover of insurance companies. I have been known to raise my voice somewhat when they are mentioned, and occasionally, if my kids are not in earshot, use a profanity or two when referring to their latest swindle/shnakiness/incompetence/general take-your-money-and-leave-you-for-dead attitude.

So to say that I have form when it comes to complaining about insurers would be fair.

What isn't fair, in my opinion, is that businesses who provide travel insurance in Ireland are being violently discriminatory to the thousands of Irish citizens who are now - *gulp* - survivors [kills me to use the word, but there it is].

Those of us who have "Cancer" in our past medical history, or in our presenting complaint. Those of us who have to tick the box, "are you on a waiting list for any tests or procedures?" EVERY time we fill out a form. Those of us who are living our lives as perfectly normal people, but have a steaming vat of hot malignant oil teetering over our heads at all times. 

We would like to get away from it all. We would like to dip our chemo-banjaxed toes into the warm waters of the Caribbean. We would like to swoop and shriek on Disney-fied rollercoasters with our delirious children. We would like to take a big red marker to our bucket list and marvel at the Northern Lights, or track Tom Waits down in some dingey SoHo dive, or do the backstroke in the Canadian lakes. Or whatever the f*ck we are physically able to do, because, well, you know, dying an' all. 

And yet if we dare to take ourselves off on a plane to another country, the very kind people who very kindly sold us that lovely cheap multitrip travel policy, or the other sound folks who sold us that pretty hefty health insurance policy, will turn around with an appalled hand-over-mouth look if we tell them that we have A Preexisting Condition. It's like admitting to having a criminal record for liquidising cats, or something. You know, I'd almost actually prefer if it was leprosy that I had, because then being treated like a proverbial leper would at least make sense. 

Most insurers simply say No. 

"No we don't cover that." 

"I am sorry, but we are unable to provide a quote in these circumstances". 

"We are not in a position to provide cover given the information you have submitted".

I get that there are formulae. I have a vague understanding of risk stratification, and actuarial calculations, and whatnot.

But I suspect, strongly, that these calculations are based on very old medical data, when yes indeed anyone with my kind of cancer would be travelling nowhere except in a nice shiny hearse. 

The UK companies seem to have been able to adjust their figures, and a number of different firms now offer relatively reasonable rates for single- and multi-trip policies for patients who are in the middle of chemotherapy or who have been given terminal diagnoses. They are unable, or unwilling, to cover people who are not resident in the UK. Now, I don't know much about this kind of thing, but as we are still pre-Brexit, are there not some kind of EU agreements about this stuff? Also, if the insurance you are selling is specifically for someone who will be somewhere other than their home country, surely it shouldn't matter where their journey started? 

I have heard of two women, with almost identical stage 4 diagnoses, who both applied for travel insurance for a single trip. One lady lives in the UK and was travelling outside of the EU, and the other lady, who lives in Ireland, is taking a trip to Spain and has an EHIC card. The British lady's disease has, on paper, a worse prognosis, and her treatment plan is one with slightly more risk of side effects. They both declared all of their medical information and disclosed every bit of detail about their condition that was requested. 
The British lady's quote was £48. 
The Irish lady's quote was €280.

I am looking forward to travelling to New York City (my first time there!) in July for the MWIA congress. However, all of my planning and preparing for the trip has been slightly marred by the fear of the dreaded US medical system, where I will be bankrupted if I cough funny and someone foolishly calls me an ambulance. I will need the equivalent of a DNR sign around my neck, except it would say "Do Not Treat At All, In Any Circumstances, I Can't Afford It". (DNTAAIACICAI doesn't really have a great ring to it, though.) I did look into maybe getting some insurance, though I knew it was going to be a long shot. 
These were my quotes:

No
No
No
€693
No
No
€679
No

For a five-day trip. 

22,000 people per year are diagnosed with cancer in Ireland. The Irish Cancer Society quotes a figure of a 1 in 2 lifetime risk. This encompasses a broad range of diagnoses and prognoses, and many of these people would not be deemed to be "high-risk" travellers. But many more would be, especially those who have received their treatment within the past five years. The insurance companies are excluding themselves from a massive, and growing, market, based on outdated statistics and old-fashioned attitudes to stage 4 cancer. 

I am the last person to advocate on financial services' behalf, but I strongly feel that they are missing a lucrative commercial trick here.

And we all know that that is their favourite kind.

Pros and Cons

I have a fairly robust catalogue of defence mechanisms to help to keep me vaguely sane, the chief of which is to fill my brain with Other Stuff and ignore the Fear and Dread of Cancer as much as possible. 

But the fact of the matter is that I am now living in a parallel Alive universe when I am supposed to be Dead. An actual real-life Limbo.

I was diagnosed with the kind of omnishambles of a cancer situation that everyone knows would kill you stone dead in a matter of months. I had the full range of reactions from doctor-friends that reinforced this truth - the ones who said “oh don’t talk like that” and then crumbled into tears, the ones who looked at me knowingly with “you’re a goner” scrolling across their faces, the ones who crossed the street to avoid having to decide which version they wanted to be. I never had the how-long-do-I-have? conversation with any of my consultants because it was appallingly apparent to us all that the answer was Not Long. 

That was four and a half years ago. Now no one, least of all me, has a bloody clue what to say. Am I cured? Will I live as long or short as anyone else? Do I have cancer now, if none can be seen on a CT? 

What I have are the constant reminders. 

I cannot donate blood, because I was lucky enough to get two units of it when my Hb was 7.6.

I cannot donate my organs, as far as I know.

I cannot get life insurance or mortgage protection (but - clever me! - I got them before I was Riddled, so the poor actuaries were foiled. Heh heh.)

I cannot lie properly on my right side, because I have a Portacath in my upper chest wall, that is now so tethered and ropey that having it removed would be tiresome. So I toss and turn in bed, woken by the numbness in my right arm when something happens that must be related to my subclavian artery, or vein, or something [I am putting this little snippet in here in the hopes that a clever vascular surgeon will write in to the editor to explain this phenomenon for me.]

I have to do complicated maths on the economics of having a long-acting contraceptive device put in. I mean, how long-acting will I actually need?

I need the LARC, though, because I cannot have any more children in case my cancer recurs and I would have to choose between me and the baby, and I cannot say hand on heart that the baby would win. I mourn for this potential baby that I might never have had.

I am periodically surprised by the reminder message on my phone that it is time to have my portacath flushed. I bluster my way through this experience, jovially fielding the “my god aren’t you so young/so lucky/so unlucky” comments that come with each new CIT nurse. 

I say nothing when people talk about their plans for next year, or talk about getting old.

I try not to dwell on potential milestones - first days at school, fiftieth birthdays, wedding anniversaries. 

I say “yes” when people invite me to events in the future, knowing that my seat might be empty. 

I have recurring dreams that I have left my children alone somewhere. 

I lie when I go to fancy spas, and tell them that the scars all over me are from a “minor procedure”. I count on the lighting being so soothingly low that they will not notice the radiotherapy tattoos, and I brush off the portacath as a “medical device”.

I say Yes to the dentist’s enquiry if I might be stressed, when he discovers the huge crack in my molar from violent bruxism.

I have stopped making virtual friends with fellow cancer sufferers online because - you know what? - a load of them died.

And then there are the scans. And the scanxiety. And the somatisation. And the erosion of the gastric mucosa while waiting for the results. 

On a day when my head is bursting to the brim with conference-organising or website-building or network-working, it is only the occasional little You’re Going to Abandon Your Children thought that squeezes its way into my consciousness. On the days where I have neglected to cram in as much brainwork as possible, the visceral dread seeps up to my shoulders and billows out into a filthy putrid cloud around my head, and makes me lose my breath. The chest pain starts, and the hyperventilation, and the bile rises into my throat. 

On those days, it is a Half-Life that I lead. 

But it’s a life I have been gifted, and I live it every day. 

Cascade

Here's a post about effects and side-effects, and remedies and solutions. 

I have ongoing chronic pain in my right side, all around my hepatectomy scar (liver removal; keep up).

The pain starts in my back, probably because I had back pain long before I had cancer.

I also have pain in my shoulder which may or may not be referred from my diaphragm (a wiring anomaly that doctors know about and adds to their smugness).

I have been managing this pain in various ways, depending on how much it freaks me out on any given day. 

In the absence of any new or ongoing treatment for the actual cancer I think I started to miss being a patient, so I decided to go and see about having my pain "managed". Usually this would involve drugs, but I am one of those extremely irritating patients who refuses to take tablets and believes in Other Options (No angel therapy. Yet). So I plumped for an epidural injection into my spine cos like that's so natural and wholesome. 

I think it might have worked. The two hours spent in the public waiting room watching HSE propaganda was well worth it anyway. I learned about all sorts of public health promotion stuff that my employer - sorry, Statutory-Body-With-Whom-I-Share-A-Contract-But-Who-Has-No-Obligations-To-My-Wellbeing-Or-Occupational-Safety - is funding and disseminating, and got to see lots of my friends in clever patient-safety videos and advice clips. 

I also signed up for a Mindfulness-Based Stress Reduction programme for people with secondary cancer. Now we're talking wholesome. 
Because I have the temerity to be a working cancerhead, I had to jiggle around my surgery hours to allow me to go along to the course in the middle of a Wednesday morning. This meant I arrived on the first day after an hour of helping a patient with chronic enduring mental illness deal with his most recent bout of paranoia. I was in my work clothes and in my work headspace. It took me a while to settle in, and the urge to jump out of the beautiful Georgian window was overwhelming. But I stuck with it, and made it to the Body Scan part, and had a good snore for ten minutes. 
And, what do you know, I felt all sorts of better on my way back to find out if my patient had chosen to go quietly or via the Retrieval Team...

The stress of the Dying/Not Dying Black Hole of Uncertainty has resulted in my teeth-grinding habit reaching new levels of viciousness, such that I managed to crack one of my molars right down the middle a couple of months ago. The dentist had offered me the choice of root canal surgery or extraction, and really the only part that I listened to, while he explained the pros and cons, was the One Thousand Euros versus One Hundred Euros bit. He also used some line about "we're all living longer and like to keep all our teeth for as long as possible", so that kind of sealed the deal for me. There was also the salient matter of me never having had a tooth out before, therefore stupidly assuming it would be easy peasy. 

I put off having it done for a while, because I was organising a conference and making myself feel indispensable. As soon as I was dispensable again, I booked myself in, but chickened out again at the last minute because I was going to be single-parenting that evening and instinct told me I may need back up if it all went pear-shaped. 

Good old instinct. When I went to the rescheduled appointment it did, indeed, all go pear-shaped. It felt like he was removing my symphysis pubis via my mouth. He pulled and pulled and yanked and wiggled and heaved and splintered and drilled and wrenched. And little fragments of my tooth pinged into the steel bowl, and off the overhead light, and across the room. Tears were streaming down my face and I could feel myself getting the all-over body shakes that I remember after having my sections, but without the lovely oxytocin rush. I didn't even manage to deliver the tooth. The fecker is still in there now, crushed and broken, but clinging onto my mandible like a tumour to a portal vein. 

Now I have to go to the root canal surgeon. And presumably pay her a thousand euros. 

Go Go Go

I'm doing that thing again. The busy busy busy run run run thing.

I don't remember if I did it much before I got cancer, but I certainly can't seem to get away from it now.

I am working hard when I am at work - it is busy season in GPland and there is no way around that. 
I am working hard when I am at home - the red carpet on the stairs does not clean itself, it seems. 
I am frantically trying to ensure that enough people come to the conference I am organising that it feels like a proper success, not just a job done (I really wish I hadn't watched that Fyre Festival documentary).

There is always a point where my body reacts physically to the mental overload and I think oops I've pushed it too hard this time. Pains in the head, pains in the stomach, pains in the chest. But then they pass, and I find my mind wandering off down the dark alleyways of What Makes You Think You'll Survive When So Many Don't, and I scuttle back to the pandemonium of ordering nametags and counting seats and emailing people I barely know to ask for help. It's safer for my brain to be bursting at the seams with the here and now stuff and ignoring the future altogether.

I like the busy-ness and I am dreading the come-down. 

But I would still very much like lots of people to come to my conference!

www.wimin.ie/conference

Strength and Dignity

The following post has been published in the 7/2/2019 edition of the Medical Independent.

I have started to give tutorials to our Final Meds again. I had stopped when the chemo frazzled my little brain cells to the point where remembering my own name was sometimes a struggle. But now I feel I can bestow the unsuspecting students with my vast knowledge, as long as I stick to just one tutorial per month, and with the scintillating topic of Me and My Illness.

I use my experience to illustrate a few teaching points, like breaking bad news, false assumptions about cancer and its treatment, and self-care. On this last point, I always urge them to ensure they have their own GP and to avoid treating themselves or their relatives once the magic medical council registration number is attached to their name. 

Sometimes they ask me about how my own bad news was broken to me, or about my own GP. The are curious to know if the SPIKES model was used (which seems to me to be a particularly inappropriate mnemonic).

This has been the most difficult part of these tutorials for me, much more difficult than describing the pain or misery of cancer and its treatment. 

It is difficult because my GP had to give me the news of my devastating diagnosis over the phone, when the radiologist phoned her late one Thursday evening to say that my MRI showed multiple liver metastases with an unknown primary. She knew that I knew what this meant. When I saw her number coming up on the phone I knew it was probably serious, but when she told me to sit down before she said anything else my head started spinning and my mouth went dry. She told me about the mets, then she told me to be at the hospital at 8:30 the next morning and the radiologist would meet me there. The oncologist was already lined up too, and perhaps a surgeon as well. She told me she would phone me back in half an hour, once I had told my husband, and she said she would talk to him too. 

As I was about to hang up I asked one more question - “are we really having this conversation?” She just said, yes. This is really happening. 

It was nearly a year later before I was able to fully understand how difficult that whole experience must have been for her. In the few days before I had had the MRI, we both knew that my liver function tests had suddenly gone up dramatically and that something was probably fairly amiss. But neither of us was prepared for what was to come. I have no idea how she was able to pick up the phone to me that afternoon, knowing that what she was about to say would be so life-changing, and possibly life-ending. She had obviously been to a lot of trouble contacting various hospital consultants before she even contacted me, so that a smooth plan was in place before I could even begin to think about what the next steps should be. 

She helped me through the excruciating uncertainty of the next few months. I would go to her with aches and pains which to me meant certain imminent death, and she would calmly and firmly diagnose something much less dramatic. She was always knew the right thing to say. 

I brought her a bottle of champagne for Christmas two years after my diagnosis. She wasn’t able to drink it, as she had started to have difficulty swallowing in the previous weeks. She told me some of her symptoms, and we both came up with non-life-threatening differentials, just as we had done when my original liver ultrasound was a bit iffy. And once again, our hoping-against-hope proved pointless, when she was finally diagnosed with motor neurone disease. 

Her speech started failing, so we communicated electronically. We knew each other so well that we didn’t really need to say that much anyway. One hand started getting weaker, but she was still able to take blood from my two-year-old whose growth was faltering, and the injection she gave me in my right shoulder saved me a trip to the orthopaedic surgeon. We had email chats about the pros and cons of various life assurance policies. 

Her funeral was without doubt the most beautiful and most agonising experience of my life so far. It was an almost exact replica of the funeral I have already planned for myself (except mine would be much more about Me Me Me, and hers was all about everyone else). Her daughter described her as never having a bad word to say about anyone. I know that it would be hard for someone to say the same about me, but I vowed to myself at that moment that I would try my best to emulate her. She was a truly amazing person and I will never forget her. 

RIP Dr Orla Batt.   

Dot Dot Dot

I'm pretty sure I am right, most of the time. 

I have been thinking about this recently, and I have come to two conclusions. 
Either everyone in the world thinks this way too, in which case I must be wrong, or I am one of a few people who think this and (as long they all agree with me) we must all be right. 

But the people who shout very loudly about being right seem to be the ones that are most likely to be wrong.

A conundrum. 

I feel strongly about things, and it distresses me when others don't. I don't mind when people think differently from me, as long as they have put some effort into actually thinking. It's when people don't think at all about the issues that fire me up that I assume that they are wrong, neglectful, not participating in society, not making their mark. 

I was listening to the Slow Burn podcast, and discovered Mae Brussell, who was a radio host in the 1970s with a deep passion for a good conspiracy theory (any conspiracy theory). Apparently she read eight newspapers a day. Her motivation for digging so deep into the stories of the day was that she felt a responsibility towards her five children, not to just sit back and let the world wash over her, and accept the perceived wisdoms, and putter along as a backseat passenger. She wanted to know what was going on, especially when she felt she wasn't being told the truth by the People Who Know Stuff. 

I do love a newspaper, but I doubt I could make my way through eight of them a day. Scrolling through Twitter, though. That I can do. And I like to think (in my Always-Rightness) that I only fill my brain with Important Stuff, I only follow Interesting People, I only click on Learned Things (and not bait). I tell myself that I am expanding my horizons and doing my civic duty, widening my knowledge. Of course all I am really doing is reinforcing my own long-held opinions, turning my core beliefs into iron ore, patting myself on the back for being so Right All The Time.

The discomfort we feel when we are confronted with truths we don't want to accept is very real. Visceral. We (I) don't like the feeling of doubt creeping in - what if everything we have believed to be unassailably true is in fact just something someone once told us, that we never even thought to question?

It is infinitely easier to stick to our guns, close our ears, cover our eyes and three-monkey our way through life. Even if we did dramatically change our minds about something, after carefully listening to a person who we would usually ignore or mock, it is unlikely that we are going to truly transform our general outlook on life. In fact, if we did do a complete moral or cognitive u-turn, our integrity would rightly be called into question.

So how do we open ourselves to new possibilities, without becoming embarrassingly flippant in our attitudes and opinions?

It all comes back to opening our ears, and trying new things, and embracing challenges. 

I am ridiculously excited to have been asked to participate in this year's DotMD festival in Galway in September. To be included in such a jaw-dropping line-up of writers, thinkers and doers is both humbling and ego-boosting at the same time. More importantly for me though, is the opportunity to once again open my ears and eyes to a wider view, a bigger picture, and to experience the thrill that comes from brushing off the cobwebs in the corners of my mind. 

Come along, you'll enjoy it. 

You know I'm right. 

No Surprises

It's the start of a new year, so I'm going to do the thing that all good TV schedulers do, and fill this space with retrospection and predictions. 

I used to make a photo-montage each November, to mark the anniversary of my diagnosis, and share it on Facebook, and cry a little bit at the beauty in my life. But my faith in Zuckerberg has reached the point where I am reluctant to even look at the screen (which has just reminded me to finally cover the camera on my laptop with an airmail sticker - paranoid, me?), so the chances of me presenting him with a neat package of my life story over the past twelve months are slim to none. 

But it was a nice thing to do, to remember all the wonderful giggle-filled moments that we had had, the achievements and milestones, the flow of life through its up and downs.

My children are growing bigger and older.

My house is growing bigger and older.

I am growing older (size remains roughly the same).

My hopes and fears expand diametrically. 


These are things for which I am grateful.

It was a bit cold in the sea on December 31st.....