What is there to say?

 

I wrote my last blog post over the course of a year.

It was a chronicle of me thinking I was dying, then wondering why I hadn't, then realising that of course I was still dying because that's what I have been doing all this time anyway, then getting used to being mostly unsure of myself every single day.

So now so. 

Having written all that down, it turns out I have a load of "new' cancer in my general belly region. It is not new, it's been lurking. "She beat cancer so many times but it still came back" - that's not beating it, chums. That's what happens.

I have minimal faith or spirituality, but I do know that if anyone uses the words "brave battle" in relation to me, I WILL haunt them. 

What is the euphemistic way to say this? (I am still not great on Deathiquette - I am bound to get it wrong)

I am now receiving palliative care.

There are no treatment options left for me.

I am in the departure lounge. 

I am entering the final phase. 

Or, being me, I could just say, "looks like I am dying (for real this time, folks)".

I think you get the picture. 

Brain dump

I have not been blogging much recently. 

So now here's a year's worth of thoughts all at once.

I started writing what's below in August 2025, and added sporadically to it throughout the twelve months since. 

It's not going to be easy to follow. Mostly because none of this is straightforward.  

Apologies for any tears or boredom that may ensue. 

August 2025

So this might be the day.

The day when all the whens and what ifs disappear, and it becomes right now. 

The countdown begins. 

The list of buckets.

The meticulous planning and foresighting and preparing and micromanaging. 

The grieving. The breath-stopping grieving. 

The wondering. The hoping. The accepting. 

The crying.

I thought it would be a different day, but I sensed it might not be too far away. 

If it is today, then we better get started. 

I’d like to be at home as much as possible, but I want to feel comfortable about going to hospital too.

I am not against the concept of Marymount.

I would have liked to have had a head of white hair.

I would have liked to have grandchildren.

I would have liked to have travelled around Europe in our camper trailer while all of my children were happily making their own futures. 

I wouldn’t have liked to get dementia.

I wouldn’t have liked to have people shout at me on the bus.

I wouldn’t have liked to be lonely. 

I would have died if one of my children died before me. 

I feel bad to leave them, but I am so thrilled that they have their lives ahead of them, and they will be wonderful human beings. And now they’ll have a great back-story if they ever go on TV. Instant sympathy. Rose of Tralee, here they come. 

I want people to watch dying happen. Call the Deathwife. Come Die With Me. MasterDeath. The Great British Die-Off. 

I still don’t know if today is the day to get started with the ending. 

You will be alive the day after I die. And the day after that.

You will walk out into the world. Go to the shops. Have a nice lunch. Try on new clothes. 

There is nothing wrong with that. 

That is how it should be.

I will be with you through all of it. 

You can blame me when you buy ugly trousers by mistake. 

I’m thinking about dying.

I think I probably will. I am not sure when. I don’t know exactly where. 

But I do think I’ll get to it in the next while. 

I am very good at procrastinating, but I also get bothered if a task is hanging over me. 

What a strange thing to have on a To-Do list. 

Plant a tree for me.

An oak.

I was dying there for a while, but I seem to have got over it. 

There is a stranger in my mirror. 

Bad things happen to people all the time.

Fathers drive over their toddler children in their own driveways.

Mothers watch their sons murder their daughters then kill themselves.

Things happen to children that I cannot even begin to think about. 

Dying of natural causes is one of the least worse things that can happen. 

I miss:

High heels

Jeans

Touching my toes

Putting on my shoes without grunting

Brushing my hair

Pony tails

Champagne

Running up the stairs

Sleeping on my left side

Assuming I will be alive in five or ten years’ time

I should write some words each day as I drain.

Drain words.

Drainwards.

Draindrops.

Drainbows.

That didn’t last. 

But I do.

I persist, inexplicably.

At what point does it get embarrassing? 

Apologising for being alive, and not even metaphorically. 

January was a struggle. 

I can see the fluffy buds on the trees now. 

The tiny shoots in a green that can only be seen at the very start of the year. Like the fluffy hair on a newborn’s neck. So precious and rare. And then gone.

I worry I may cry each time I see a snowdrop or a daffodil. 

What will I be like if I get to see the roses? 

March is Next Month now. 12th, 18th birthdays. Seventh WiMIN conference. 

Then Easter. Cape Clear. 

If I can just stretch out my fingertips….

Maybe I will live long enough to see a TV cop show where the detective’s spouse is fully aware that the job will always be more important than them, instead of flouncing out in a huff every time a murder interrupts their romantic dinner. 

Maybe I will live long enough to watch a football match in a pub and not hear a single derogatory comment about the female pundit/match official/player. 

Maybe I will live long enough to be sure that rapists and racists will have to keep quiet about their bigotry, rather than getting elected because of it. 

The most precious things

I have held in my hands:

My babies.

Smaller than most.

Cupping their bottoms in one hand.

The sound smell sparkle of the waves in South Harbour.

The daffodil that I planted without hope.

The card sent in the post from someone I don’t really know. 

The plant pot left on my doorstep.

The top of the rippling wave. 

The cardigan-cushion full of memories of love and tenacity.

I get angry.

Not with having cancer, or “being sick”.

I am irritated by people who think cancer is special, and makes them special. 

It is boringly common.

Yes, some people die from it.

We all die of something, you dopes. 

To my darling gorgeous daughter on her 18th birthday.

You were very small 

When you were taken out of me.

We didn’t know what to do

Except stare at you

Because you were so perfect.

You started smiling then

And we just smiled back all the time

Because you were so gorgeous. 

Then you started making funny faces.

Surprised!

Cross.

Scared

Tired…

Excited!!

We spent hours playing that game. 

When you started to chat, all bets were off. 

Funny

Clever

Kind

Curious

Impatient

Stubborn

Determined

Laughing and laughing and laughing

Suddenly very sad. 

And quiet.

And then giggling so hard we had tears coming down our faces. 

Never dull or boring. 

Never not thinking. 

Quick and wise and smart and thoughtful. 

You are a perfect adult and we cannot believe we made one of those. 

Nothing Special (published in Medical Independent, May 2026)

Why are cancer patients so special? The Pink Runs, the White Ribbons, the GoFundMe pages. The fluffy blankets, the overpriced commercial “care packages”, the cooing podcasts. 

“God, aren’t you amazing? You’re so brave.”

“You’re an inspiration.”

“Anything you need, just ask.”

I think all of this stems from the lingering terror that we have inherited when it comes to the Big C. The inevitable painful death that caused everyone to whisper the word, in case saying it out loud would make it contagious. Despite the fact that there have always been plenty of other fatal illnesses around, which were actually contagious. Obviously, TB carried huge stigma and was cloaked in euphemism and denial, but the advent of effective treatments seems to have erased those ghosts. I don’t think that someone diagnosed with tuberculosis today gets the same head-tilt/sad-face reaction as a cancerhead, and they certainly don’t get the same level of saccharine sympathy. 

Cancer causes one third of all deaths, and affects every family. But there are plenty of other illnesses that cause equal suffering and are far more likely to kill you in the short term. I am finding it harder and harder to understand how we can live alongside people with significant metabolic disease, or brittle asthma, or severe neurological disorders and fail to empathise with them as much as we do with people living with cancer. Their risk of waking up dead, as they say, is actually significantly higher than those with malignant disease. 

I have friends with much greater life challenges than me, and yet they feel the need to apologise for discussing their problems, because “sure it’s nothing compared to what you’ve been through”. There is a diminution of all other illnesses when cancer is around. It is at the top of the sympathy food chain, and soaks up much of the public discourse around illness and distress. 

I have moved, for the moment, from being someone with “terminal” cancer to someone with a chronic illness. (The quotation marks are mine; I meet all the criteria for terminal cancer, I just happen to disagree with the classification). I no longer attend the oncology ward every two weeks, with its gorgeous hand-painted mural and fancy reclining chairs. No more free coffee and fresh scones, no more avid attention to my skin/bowels/urine/platelet count. I now attend a clinic staffed by equally kind and skilful professionals, but which serves a cohort of patients who are not traditionally offered the fluffy blankets. There are no daffodils in the Hepatology OPD. Instead, there is a  rather grim display of fake livers at varying degrees of cirrhotic change, with an unspoken but loudly-heard “told-you-so” vibe to them. I cannot help but feel the need to tell everyone in the waiting room that I am here because of my Cancer (await hushed murmurs of sympathy) and not because I ate or drank too much. MY cirrhosis is caused by all the treatments I have had over the years, not all the treats. 

And so I am also falling into the trap of considering cancer to be a special case, a free pass to access all the positive vibes and gushing good wishes. I intermittently bemoan the fact that I haven’t actually milked my diagnosis enough; there are freebies I haven’t cashed in, Late Late Toy Show tickets I haven’t inveigled, expensive trips I haven’t been #gifted. But I cannot stop myself from thinking about all those terrible life experiences that people go through that the world either blithely ignores, or else downright denigrates the person for finding themselves in that position. 

Bad things happen to people all the time.

Fathers drive over their toddler children in their own driveways.

Mothers watch their sons murder their daughters, then kill themselves.

Things happen to children that I cannot even begin to think about. 

Living with (and even dying from) cancer is potentially one of the least worse things that can happen, and yet we have elevated it to some supreme serene space where all sins are forgiven and no sympathy is spared. I am not sure that is actually helpful, either to the cancer patients or to everyone struggling with other ongoing serious illnesses. We are feeding into an outdated myth, that cancer is a death sentence and being diagnosed with it is everyone’s worst nightmare. No wonder the fear and silence around it continues, despite the significant life-changing progress that has been made in its treatment in recent decades. 

I accept that this is not going to be a popular opinion, and selling a “cancer isn’t that bad” story will never be easy, but I think it is worth considering the spiral of doom that we are perpetuating by continuing to tilt our heads. 

I’ve been unwell.

My organs don’t work like they used to.

These are tricky conversations. 

“But what are they going to do? What’s the plan? How will they fix you?”

I don’t know.

I don’t know.

This is the wild west of chronic illness, where everything is a bit try-it-and-see.

This is how most people with ongoing conditions live their lives. There is a vague plan, but not a Regime with lovely NCCP guidelines. 

We’ll change this tablet and see what happens. We’ll try and sort out that side effect. 

Cancer is full of uncertainty but now I almost miss the head-tilts, the special charity-funded couches and fancy coffee. 

People look at me expectantly, waiting for me to tell them how I really am, what’s really going on.

I don’t know.  

Um, probably not cake then?

My bloated belly continues to give Cake vibes (if you haven't read the last post, none of this is going to make sense) but has failed to exhibit much more than a crumb of evidence of its genuine cake-ness.

Rather then flogging the analogy to death, here is what I know:

I have ongoing ascities - fluid filling up in my abdominal cavity and giving me a lovely rotund tummy (think Vector, from Despicable Me).

I drain the fluid off myself every other day by attaching a bag to a tube that is dug into my side. Around 2 litres of what's know as "straw-coloured fluid" (how many people these days have ever even seen straw?) comes out and I throw the bag in the bin. The tube is only about 15cm long and rolls up under a little dressing, so it is not very obvious.

I have been doing this now for 8 months. 

Everyone assumed the fluid was coming from cancer, but now it seems it might be a result of my liver packing it in after years of surgeries/radioactive attacks/chemotherapy and the odd bottle of cava. 

I had a liver biopsy which confirmed that I have portal hypertension and liver fibrosis, also known as the early stages of cirrhosis. 

I have some of the complications of cirrhosis already (besides the Vector-gut) - my protein levels are low (all right Instagram, yes, I should bave been listening to you all along) and I am losing muscle mass, so I am scrawny around my neck and my upper body. I get bad muscle cramps, in my feet, calves, thighs, fingers, which means that I am sometimes locked in painful twists that I cannot undo. I am breathless because some fluid has built up at the lower part of my lung, over my liver, so I wheeze and cough if I try to speak and go upstairs at the same time. 

My belly hurts if I stand up for too long, and my scar tissue gets stretched by the fluid, meaning I am generally clutching one bit of me or another to try to massage the pain away. 

I don't have to take chemotherapy any more for the moment, because no one can find any decent bit of cancer for it to zap.

I have started to take blood pressure tablets to see if the pressure in my liver will come down, but they don't seem to be making much difference so far. 

I have entered a new world of outpatients waiting rooms and multidisciplinary teams, which are focussed on dodgy livers rather than cancer, and I am interested to see how the vibe (and stigma) differs. 

There is an assumption that not having visible cancer is a good thing, so I will go along with that.  

Is It Cancer?

There is a show on Netflix called Is It Cake?

It is exceptionally irritating on many, many levels. The host shouts. The guest judges appear to have been drugged and kidnapped. The competitors give Nice But Dim vibes. 

The main premise is that you make a cake look like an everyday object, and put it on a stand next to said everyday object, and see if you can fool the judges into thinking that your cake is, in fact, an actual teapot/basketball/angle grinder. Shouty Host shouts "Is it cake?", and everyone is stunned when it turns out that yes it is. 

The only slight problem is the very loose, very American, use of the word "cake". Each one of them is a hideous melange of UPF ingredients, lit up in horrendous colours and slathered in corn-syrup matter described as "frosting". 

On this show, even the cake is not cake, not really. 

I am on more chemotherapy for cancer for the last four months or so. Except that no one is entirely certain that is definitely cancer. It looks very like it on the scans, but mostly because there are fuzzy spots in funny places in my peritoneum, and I have stage 4 cancer, so the fuzzy spots must be cancer, right? 

The Fuzzy Spot experts were pretty sure, when they had a look. 

The General Cancer in Sarah expert was fairly sure, but accepted that they could just be Fuzzy Spots of Unknown Origin (in medicine, we have a few conditions that we are totally content to entitle Of Unknown Origin, and pat ourselves on the back for our clever use of words). 

I have been very happy to go along with treating the Fuzzy Spots on the assumption they are cancer, because Safe/Sorry/Etc.

Except that, a bit like cake, if you leave it out in the world long enough, you can be pretty sure it would start to change. Soften. Crack. Get mouldy. Get maggoty. Stink. You get the picture.

My Fuzzy Spots look remarkably similar to what they looked like in August. And actually, if you squint a bit, they look quite like how they looked the previous August. 

Even the most additive-filled confectionary is bound to start looking a bit rough around the edges after 18 months. 

So while it looks like cancer and should be cancer, it is not behaving in a very cancery way. 

But if it is not cake - I mean cancer - what is it? 

And can someone please explain to me how I am supposed to get my head around living in a very very long episode of the most irritating show on Netfllix? 

Have Yourself a Neutropenic Christmas

Neutropenia is the fancy name for when your neutrophils, which are the bacteria-fighting cells in your blood, get obliterated by illness or treatment. 

Many types of chemotherapy cause neutropenia, which is why cancer patients are often immunosuppressed. We remember those immunosuppressed folk from Covid - the ones that gave us a sigh of relief when the death numbers were published because they had Underlying Conditions, and were therefore Sitting Ducks, and didn't count. 

Having little or no ability to fight infections is a pretty serious situation to be in. We all know what it is like to feel a cough or a cold coming on, and to feel sorry for ourselves for the impending few days of snottiness and general urgh. But if you get an infection and you have no internal ways of killing it off, you will need some other kind souls to intervene. Usually, this will end up being the kindest souls of your local intensive care unit, who have skills of life-saving that David Hasselhoff could only ever dream about. 

The advice for people who are taking chemotherapy is to check their temperature every day (with a thermometer that works) and if it goes above 38º, then they must go straight to the hospital. The recommendation is to be seen and treated within one hour, as this is the magic window before sepsis overwhelms your entire system and you basically shrivel up into a dying purple heap on the floor. I am aware of many fellow cancerheads who have had a number of what they call "blue light" experiences, where they have hollered for an ambulance at the first sign of a fever and hightailed with all the bells and whistles (literally) into the nearest emergency department. I don't actually know anyone from Cork who has done this, as I think we have an additional protective factor when it comes to invoking the emergency services. The weight of Morto can often far exceed the weight of I Am About to Die in our critical thinking strategies. Better to have your cold purple heap scooped into the back of a hearse than to disgrace yourself by calling a false alarm.

But that one-hour golden window is an interesting one to contemplate around Christmas time. Will I check my temperature before I put the turkey on the oven and if it's high, risk an even more cremated bird than usual as I nip off for a quick resuscitation? Will I bother with the thermometer at all on Christmas Eve, in case I miss out on Santa? Will I ignore every possible symptom of ill-health and decide that only a coma is a good enough excuse to ruin Christmas for everyone? 

Also, people with low neutrophil levels are supposed to: 

• avoid crowds
• avoid close contact, such as hugging or kissing
• avoid soft cheeses, undercooked meat and poultry and the skin of raw veg
• avoid fast food or takeaway food

Have you ever seen a list that more encompasses the spirit of the festive season? Kissing people in a huge crowd while eating deliciously manky burgers? That's the Christmas party out the window so. Hugging snotty children while munching on a brie and cranberry sandwich? Nope. Rooting around in the 5-day-old turkey trimmings for a final tasty little morsel? Out of the question. 

I tried to navigate the chicanes of immunosuppression this Christmas, but it was very hard. Yes I would love to see you, but no I can't hug you or sit near you if you sniffle. Yes I will go to see the Frank and Walters, as always, but I will stand with my coat on at the side of the room, trying to pretend that the scarf wrapped around my face is a stylish fashion choice. Of course I will go and enjoy the festive spirit in the Marina Market, but only by standing in a freezing draught and keeping my Ninja-ears peeled for the vaguest hint of a cougher. 

It didn't help that influenza was rampant, and as usual people were very blasé about it - until they got it, of course. Then they wail and gnash their teeth and say "never again!" - but forget about the vaccine again next year. 

I survived a trip to London, on planes and trains and buses (not the Tube though, I am not insane) and it all went well until I suddenly panicked about the flight taking more than an hour, which meant that if I started going septic as we were taxiing, well then I would surely be dead by the time we landed in Cork. But as long as no one noticed until we were in Irish airspace, at least I wouldn't end up in an NHS hospital...no E111 card will save you there. 

If I have a choice, I will choose not to to be neutropenic at Christmas again. It's a real humbugger.                 

IV League

I came up with that last night in bed. IV League, like Ivy League, but it stands for 4 in Roman numerals. Stage IV, metastatic cancer. We are in the IV League.

I dunno, it worked better in my head than it does written down. 

*Needs work*.

I have been procrastinating, again. 

It has become almost pathological, but I find it funny because I am procrastinating more now than I ever did, and technically I have less time to be messing about. The nettles should be being grasped. The bull should have his horns well and truly grabbed. The iron is bloody scalding and I am just sitting watching it hisssss.

And yet, what's the rush?

A few months ago (almost 4, if we are being pedantic. Or IV, if we are being Caesar), I found out that my belly probably has new cancer in it which was causing fluid to build up in my peritoneal cavity. I mentioned that this particular problem, ascites, makes doctors very certain that things are Not Good. It is always a worry when doctors are certain about things, because they are never certain about such minutiae as what time they will be at their clinic, or which week they are going to fill in your form. So all the doctors (me included) were thinking, "ooh. ascites. bad" (we are very good at Poetry for Neanderthals). 

Lo and behold, perhaps ascites isn't the worst thing to have. 

I had to cancel a trip to Egypt, where I was due to attend the MWIA Congress and be present for the outcome of the election of the next Executive Committee. I was delighted to become the Vice President for the Northern Europe Region of MWIA, and I was able to attend the ExCo meeting via Zoom. It wasn't quite the same as being there, but I felt I was able to participate and contribute, and I am looking forward to being involved in the next Triennium of this hundred-year-old network of medical women. 

I did think a little bit about the ethical quandary of taking on a role which should last three years, when I may find that my health makes it impossible for me to complete that term. And then I thought about all the things I would not have said "yes" to since 2014, if I had taken my prognosis as a fact rather than a whim.

Median survival 15 months. 

That would have meant that anything after February 2016 was out. No trip to Madrid with my fabulous girlies to celebrate our 40ths. No Vienna. No Bilbao. No Doctors' Discos 1, 2 and 3. No Brighton Marathon (I mean he could have done it without me but it wouldn't have been the same).

5 year survival around 13%. So nothing much after Nov 2019. 

No WiMIN Conference Numbers 2 to 7. No trip to New York for my first encounter with MWIA. No Postgraduate Diploma or Certificate. No new job(s). No first and last days at primary and secondary school. No snuggles from babies that became cuddles from children and then hugs from full-grown humans. 

So pah to your sage nodding and thoughtful grim-set mouths. 

I have literally no idea what comes next.

Christmas, I guess.  

Autumn Leaves

I wonder why so many people like autumn. Long before we had heard of hygge and pumpkin spiced lattes, many of my friends would say things like “thank god for tights” and celebrate when the heating spontaneously sparked up on a random September morning. 

I think it’s because summer is just too much pressure. MUST enjoy ourselves. MUST get out in the sunshine. MUST be all golden and glowy and active and lithe. MUST HAVE FUN!!

We had quite a topsy turvy summer. 

It began with our youngest daughter being sicker than any child of mine has ever been before. She had a perforated appendix and we spent five nights in hospital. It was horrific. 

She’s better now, thank goodness. 

Her main concern was that her scars would be healed in time for our massive family holiday in Mallorca in July. A gathering of nearly two dozen Fitzgibbons+ in one place. Yikes. 

It was lovely – hectic, but lovely. We celebrated my mother’s 80^th birthday, in the same place we celebrated other family birthdays before, and it is humbling to think how lucky we are to still be able to come together in this way, without illness (or homicide) coming between us. 

I was feeling a bit off while we were there, because my belly had mysteriously swelled up in the few days before our departure. I had had my routine surveillance scan just a couple of weeks earlier, and that was stable, so I figured my guts were just reacting to the anticipatory anxiety of the big get-together. It didn’t stop me from swimming every day or clambering over the hot rocks, so I wasn’t too concerned. 

When we got home I assumed things would settle down. Instead my belly button kept bulging more and more – I have a hernia there since one of my operations, and it is like a little sentinel of bloating, a reminder to lay off the white bread. But this time it was staying stuck, and I started to worry that it might be incarcerated (which is not a good thing for a hernia). I have an inguinal hernia too, and that was beginning to bulge alarmingly. 

I decided I better do something, before my entire guts burst out of my abdominal wall. I went to the Emergency Department, which actually isn’t as bad as people make out. I met some lovely nurses and doctors, who very gradually and carefully let me know that my pregnant-looking abdomen was not due to an overdose of baguette, or a strangulated loop of bowel, but was in fact a result of litres and litres of fluid filling my peritoneal cavity. This is called ascites, and if you say that word to a medical person they are physically incapable of stopping their face from saying “oh shit”, even if they try to shrug it off and smile a fake smile. 

Ascites is generally a result of liver failure, or else a few other things that are even worse news. 

My liver was fine. 

The word “curtains” went through my head a number of times.

This was unlikely to work out well. 

I had a drain inserted to relieve the pressure, which was by now pretty excruciating. 

Many many litres of apple-juice-looking fluid came out of me. I felt, and looked, a lot better. 

None of the apple juice had any cancer cells in it. Weird. 

Still though, it was very likely to be from the cancer. 

I left hospital and entered full-scale denial. Off camping for the week. Lovely. 

I felt so good I declined the offer of returning early from our week away to have a permanent abdominal drain inserted. Sure wasn’t I grand? Not a thing wrong with me. 

A couple of days later I was bursting again. Unable to move in the bed without severe pain. Feeling about 50 weeks pregnant. I had to go back to the ED. 

This time my hospital stay was quite a bit grimmer, for a number of reasons. Mostly because I felt like an idiot for not pre-empting it by having the drain put in when it was offered. 

Anyway, the very kind people didn’t hold my stupidness against me, and gave me lovely drugs while they tunnelled a tube into my belly flesh. This device allows me to attach a bag to myself whenever my tummy swells, so that I can harvest another litre or two of apple juice and prevent the pain and waistband-bursting expansion. 

I’ve been doing this now every couple of days for 5 weeks or so. It’s a strange sensation, like a tiny vacuum cleaner swooshing around in my innards. The fluid even flutters and rumbles, very similar to the feeling of a baby moving around in there. But this time I have no idea of my due date. 

I had a PET scan which was expected to confirm that my cancer had spread to my peritoneum (the lining of my abdomen). This was the most likely cause for the ascites, and even though there were no cancer cells in any of the many samples of fluid that were sent to the lab, we still assumed that the PET scan would show little shiny white spots of metastases in my belly sac. It didn’t. 

It showed some bits of something that could be metastases, but they didn’t light up like my liver had last year. My liver is all calm and quiet now, subdued by my last round of chemo. And these peritoneal nodules are not “avid” (that’s PET-scan speak), they are more like Ferris Bueller in a chemistry class. Languid. 

Right now, I don’t really know where I stand. 

I will have a laparoscopy, where a learned chap will look into my abdomen with a camera and see if he can spot some nasties. And if he does, he is a dab hand at eviscerating them. Only thing is, that often involves excavating quite a few innocent viscera too. Peritoneal surgery is no walk in the park, and has to happen in Dublin which is an additional urgh for me. But of course I will be grateful and happy that learned chaps are willing to do what they can to continue to prolong my life. 

So autumn has begun with me regularly harvesting apple juice from my own tummy, and pondering the march of time. 

Winter is ahead. Let’s get those cosy pyjamas out. 

None of This is Easy

 I don't usually admit that. 

I don't usually state the obvious, that having cancer for a long time is actually quite hard work. 

Because the alternative (in my case) would have been having cancer for only a few months, and then landing in a satin-lined coffin in a cold and draughty funeral home on a Tuesday evening. 

So I persist in my relentless positivity and life continues on. 

Guinness Envy

If you knew you were dying, what would you do? 

Would you take out a huge loan, buy a crate of expensive champagne and a red convertible, and drive off into the sunset to have the biggest party of your life?

Would you smoke a load of Cuban cigars, snort a mountain of Colombian cocaine, and tell your boss exactly what you think of him? 

Would you head to Vegas and place your life savings on a random number on the roulette table? 

You could do all that, and then find out that the diagnosis was wrong and in fact you had another 20 years in front of you with not a penny to your name, massive debt, a very unsympathetic employer, and a savage hangover. 

How do you know when the time is right to stop frantically trying to live, and just enjoy dying? 

The World Health Organization has this fancy infographic to show how many cases of each cancer are "preventable". They mean that those cases are caused by things like smoking, alcohol or obesity and are therefore life choices rather than, say, genetics or age, which a person cannot change. 

So let's say you get a cancer that is usually or often associated with a life choice. Lung cancer is the classic example, with most people rightly associating it with smoking. This means that people who have lung cancer either spend their time feeling guilty and ashamed that they smoked and gave themselves cancer, or they are in the smaller group of people who get lung cancer but never smoked, and spend their whole time explaining to people that they are different and special. 

What if you get lung cancer and continue to smoke? You could say to yourself, well it's too late now, the horse has bolted, I didn't want to give up before and I don't want to give up now. You could say to yourself that my prognosis is so poor I might as well enjoy my last few months. You could say to yourself that I deserve to have the small pleasure that cigarettes give me, because I have to endure the horrors of anti-cancer treatment and the only thing that gets me through the day is the fragrant waft of a Marlboro Light. 

What if you get lung cancer and you immediately throw out your half-empty packet? You are determined to do everything you can to live as long as possible, now that the threat of death is over your head. You juice all the vegetables, buy all the crystals, pray to all the gods. You do all of the Right Things. And yet you still find yourself on your deathbed three months later, yearning for one last smoke, but you are too ashamed to ask your loved ones to wheel you outside. 

There are lots of things that I have changed in my life to give myself the best chance of living as long as possible. I try to exercise as much as I can, even though my body is pretty wrecked from numerous surgeries/radiations/toxic gacks. I was smug as a bug when a paper was published recently showing how effective exercise can be for preventing recurrence of bowel cancer. Except then I stopped to think, and I realised that all of my 10,000 stepses and downward-facing dogs had not prevented my little hiccup last year - the cancer still came back. 

I stopped eating red meat and processed pig, even though I really like them both. 

I stopped drinking more than 1 or 2 units of alcohol at a time, and never more than a couple of times per week. 

I checked the radon levels in my home.

I changed my working life to try to minimise my stress levels. 

I do all of these things because I feel obliged to do the best I can for my children. If I don't do the Right Thing, they could rightly feel that I didn' t do enough to stay alive as long as possible.

But recently I find myself feeling overwhelmingly jealous of people who can do what they like, because these thoughts aren't in their heads. 

They can enjoy the mellow wondrousness of 3 glasses of wine. They can hurl into the fifth pint of Guinness, thinking "NOW we're having fun!". They can make their way through a massive charcuterie sharing plate, all by themselves, and lick their chorizo-y fingers in delight. They can have the odd rollie because it's only the one, and sure it's all natural anyway when it doesn't have a nasty industrial filter on the end. 

I know of other bowel cancer patients who haven't changed their consumption habits in any significant way, and tuck into a nice Full Irish whenever the fancy takes them. I am in awe of that detachment, that nonchalance. Other people have livers which have been invaded by metastases, and belted into submission by surgery or radiotherapy, and yet they blithely knock back the Moët without seemingly another thought.  

I cannot decide what bit is making me jealous. Do I want to neck a bottle of cava? The last time I did that, I had palpitations for a week. Do I want to eat a load of processed pig meat, that is mostly mechanically-reclaimed?

Or am I just jealous of their stress-free little brains, with no existential crises about how long they will live or how their children will survive without them? 

And then I realise how stupid that sounds. Every one of us has these anxieties niggling away at the back of our minds. I am probably luckier than most, that I get to face up to them now and learn ways to cope. 

A pint of stout could really take the edge off, though. 

 

Doing Cancer Wrong

For whatever reason, I never seem to cop on to the right ways of doing things - socially I mean - especially if there isn’t a written set of instructions. I have an innate tendency to do precisely the opposite of what society expects from me. If I am supposed to smile and be sweet, I scowl and swear. If I am supposed to frown and shake my head, I tip my head back and laugh.

Most of this is unconscious, but then I also accept that I engage in deliberate divilment quite frequently too.

I just can’t help it.

It has been dawning on me over the past 11 years (slow learner) that I may be approaching the cancer patient lark the wrong way.

Let me try to elaborate:

• I never wore the wig/turban/headscarf. Even when my hair looked like something you’d find at the end of a very manky plughole, I still persisted in convincing myself it was grand. I assumed that bald cancer patients waited until they had actually lost all of their hair before they reached for the expensive headgear, but I have now surmised that they in fact shave it quite a bit before that, thereby looking less like an electrocuted mountain goat and more like a demure, stoic, and oh-so-brave beacon of strength.

• I didn’t complain much (I can hear my family guffawing in disagreement, but bear with me). I kept my public discussions about the misery of cancer treatment relatively sparse and tried to have a good ratio of 3:1 of positive to negative posts.

• I failed to big up the amount of chemo and other treatments I was getting. Triple, quadruple, high-dose chemotherapy; I never really got into the numbers. I took a load of drugs, they worked (mostly) - super.

• The biggest mistake, probably, was the failure to cash in. Not a single free #gifted experience in a luxury spa, not one complimentary cashmere scarf, no community fundraisers to pay for my Leonidas addiction. It goes without saying that I got some absolutely gorgeous and heart-wrenchingly thoughtful gifts from friends and family, and even from people I didn’t know very well, but the bleeding dry of commercial entities with a huge corporate social responsibility budget passed me by.

• I could have thought of all the ways my cancer could have been prevented, and then gone after the people who failed to prevent it. Hot dog manufacturers. Sir Henrys. Murphy & Sons. Surely one of them should be held responsible? And pay up?

• I could definitely have milked the social media market and got myself a squillion followers, and then sold them tiny packets of curcumin to cure all their ills. If only I had seen the Belle Gibson documentary sooner.

• I could flog a badly written book.

The possibilities are endless and I have walked right past them.

Dumbass.