Saturday, 11 May 2019

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. 

Sunday, 14 April 2019

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. 







Tuesday, 12 March 2019

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