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.