Flowers, not thorns.

Sometimes the path through life makes us feel as if we’ve been dumped in a thicket of densely packed bramble bushes. The way out isn’t clearly visible and emerging into open space means running the gauntlet of a thousand thorns.  All those thorns leave us punctured, sore and bleeding.

I and countless others like me have run the gauntlet of a thousand thorns.  I had no choice in the matter and what happens next is still largely outside my own control. I’d hoped to see a garden full of flowers by now but the thorny brambles send spiky shoots in an attempt to pull me back into the thicket. This mornings attempt – potential refusal to do further risk-reducing surgery because “you can’t make next week so it will be classed as a cancellation and if you can’t make the next date offered then you won’t be given another.”

Hmm.

I’ve been asking about this surgery since January. I wanted it to happen in March. I followed it up in April when nothing happened only to be told I couldn’t have it in my preferred hospital because it’s no longer geared-up for someone like me. I’d suggest the downgrading of facilities in my local medical centre is not my fault. I was told I’d go on a waiting list for my non-preferred hospital where the consultant himself said they have a “major issue with beds.” I’d suggest the so-called super hospitals failure to cope with the volume of patients it now encounters is not my fault either.  I provided key dates for 6 months of the year on the basis that 6 months ought to be long enough to secure an appointment. Clearly it wasn’t; I’d suggest that too is not my fault.

Last year I cancelled holiday on NHS instruction only to find procedures were delayed by anywhere between 8 and 14 weeks. In the meantime I lost my deposit and had no holiday.  I didn’t sue for the costs I incurred or the failure to deliver services in a timely manner. I accepted the NHS is busy without assuming it was at fault.  Why then, when I am busy (and have been waiting for 6 months) do you assume it’s my fault since I can’t drop everything to attend a non-preferred hospital where I’ll be an in-patient instead of an out-patient for a procedure that’s fairly minimal in the grand scheme of things?

If I was religious I might be blaspheming a lot at this point.

The most ridiculous part of the thorny saga? This is risk-reducing surgery, the kind that saves the State money. I will become much more expensive and a much greater drain on NHS resources if the issues I’m trying to prevent subsequently materialise. That, dear NHS administrators and penny-pinching politicians and is called economics. It seems remarkable that I can ruin my health with alcohol, cigarettes, crystal meth or ketamine and receive copious amounts of NHS treatment as well as numerous State benefits for being sick and unemployable. Ask for risk-reducing surgery backed by medical opinion then fail to be available due to prior commitments including work, (i.e. making a positive contribution to the State) and that’s it. Blacklisted.

Although I might sound annoyed about the bureaucracy and lunacy within the system I have come to know this is just the way things are. I don’t believe it’s right and I feel sorry for anyone who runs this gauntlet thinking they must obey the powers that be at all costs. However, I’m not a time-waster or a benefits cheat. I know a refusal to provide preventative surgery under the guise it’s my fault since I’m now unavailable makes no sense at all.  I’d prefer to stay healthy and avoid being an unnecessary drain on the NHS but if you want to play hardball, so be it. Be in no doubt that there will be a scandal if I should become sick at some point in future when that eventuality was 90% preventable. The NHS like so many other British public services needs to take a flowers, not thorns approach. Instead of waving a big stick, making threats and taking punitive action, actively encourage people to do the right thing – take care of their health, hold down employment, gain a decent education and make a positive contribution to society overall.

There are flowers, not thorns in my garden. They’re there because I nurture them and tend them well. When they look prone to disease I treat them to prevent the illness spreading elsewhere or ruining my display. I encourage the flowers to grow by removing weeds that might otherwise overwhelm them. The practice of pruning a diseased leaf, choking weed or shrivelled bud is far more cost-effective and environmentally friendly than dousing every plant with toxic chemicals that may hold the blight at bay but never really cure it. Public services like the  NHS could learn a thing or two from people who have flowers in the garden.

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Bah Humbug to Triskaidekaphobia. 2013 will be a lucky year :-)

Many in the West consider thirteen to be an unlucky number but there’s evidence to suggest 13 is in fact lucky.  2013 will be a lucky year.

A number of people I know deserve much better fortune and I feel our world as a whole could do with a bit of a lift.  So here I offer 13 random examples designed to inspire and illuminate us as we approach 2013.  I apologise for any factual inaccuracies, this is a bit of trivia inspired by a dear friend because we’re aiming to cast off pesky Triskaidekaphobia together and will attempt to do it for anyone else who’d like better luck in future too!

1. The Thirteenth century was very productive for the Italian city of Florence.

Firenze

Firenze (Photo credit: NivesMestrovic)

Its prosperity and peace enabled rapid economic expansion which continued at pace. Various categories of tradesmen and craftspeople increased extensively going beyond their region to other areas.

2. Thirteen is a prime number suggesting an incorruptible nature, purity and integrity.

3. Improv Everywhere organise fun missions to entertain participants, onlookers and those who watch their videos. 

Participants of No Pants Subway ride at Times ...

Participants of No Pants Subway ride at Times Square (Photo credit: Wikipedia)

The No Pants Subway Ride takes place on January 13th 2013 in New York and has spread to other cities too. Participants wear winter coats, hats, scarves and gloves but no pants. The aim is to bring excitement to an otherwise humdrum setting, make people laugh, smile, or stop and notice the world around them.  Seeing this would certainly make me smile and spice up an otherwise boring subway ride 🙂

4. The thirteenth tarot card signifies death and eternal life.  The thirteenth rune ‘Eiwaz’ was the central rune around which all the others were ordered in the oldest runic alphabet.

5. When Chinese women make offerings of moon cakes, 13 will be served. Thirteen is the number of blood, fertility and lunar potency, the lucky number of the Great Goddess.

250px-Mooncake

6. Thirteen was revered by the ancient Egyptians who believed life had 13 stages, the last of which was death and transition to eternal life.

7. For those seeking to purchase a property in the UK, number 13 is likely to be £6,511, or 3%, cheaper than numbers 1 -12 or 14 – 30 based on Land Registry figures!

8. Thirteen is considered lucky in China where 1 in the position of tens sounds like ‘definite’ (shi or 实) in Mandarin and Cantonese dialects. 3 sounds like life, living or birth (生) so 13 pronounced shisan in Mandarin can mean ‘definitely vibrant’

9. In the Jewish religion 13 is the numerical value of the word ahava (love, Alef-Hei-Beit-Hei) and the age of responsibility. Jewish beliefs are contained in the Thirteen Principles.

10. The Great Seal of the United States has 13 olive leaves, 13 olives, 13 arrows and 13 stars forming a triangle over the eagle. The pyramid on the reverse has 13 levels.

11. The traditional Thai New Year – Songkran Day –  is April 13th.

English: Songkran at Wat Thai in Los Angeles, ...

12. Lohri, the zenith of winter is celebrated on 13th January. For Punjabis it’s a community celebration of fertility and the spark of life, an auspicious day marking the sun’s entry in to the ‘Makar Rashi’ (northern hemisphere).

lohri

 

13. Jeremy Guscott, Brian O’Driscoll and Frank Bunce are deemed some of the world’s greatest outside centres – position 13 – in rugby union.

Brian O'Driscoll - Happy Day

Brian O’Driscoll – Happy Day (Photo credit: M+MD)

Happy New Year, Happy 2013 everyone ♥

Fortitude – Facing a force 12 storm head-on in 2012

Porthleven, Cornwall. Beautiful on a still day, dangerous on a wild one. Image credit: Cornwall365.co.uk

Porthleven, Cornwall. Beautiful on a still day, dangerous on a wild one.
Image credit: Cornwall365.co.uk

Today’s theme is fortitude, another of the cardinal virtues.

Fortitude: Noun.  Strength & firmness of mind; resolute endurance; courage in pain or adversity.

It’s fair to say 2012 hasn’t been too far short of facing a force 12 storm head-on while trying to keep everything together, as normal as possible, for the sake of those around me. Even during the times when I’ve been feeling anything but normal.

My call for fortitude began at the tail-end of 2011. My Mother-in-Law died, a difficult and convoluted situation that took a toll on me. I felt sorry for her; her life had been a series of unforeseen misadventures resulting in mental breakdown and institutionalisation in one shape or form since the age of 25-ish.  During summer 2011 she’d been in and out of hospital but was returned to her care home under the auspices of being better.  She wasn’t and died a short while afterwards.  I’m not sure I’ll ever stop thinking she had no real life at all and that’s what made me so sad for her.   I organised things, sorted out probate, helped clear her room all at a time when I was starting a secondment into a more senior role at work.  My boss had found a great new opportunity and his boss announced she’d be leaving by the end of the year too.  All change.

In January 2012 I was more than half way through the secondment, waiting to learn if I’d be confirmed in the role permanently. I had no idea, the months ticked on and I was still none the wiser.  I eventually found out after the secondment expired; I was pleased to learn of the promotion but news coming so late in the day took the shine off things somewhat.  As ever I threw myself into the role, worked my socks off and encouraged my teams to do likewise.  Some of our efforts were appreciated.

I realised from my very early career in Human Resources and my long-term career in Technology that some companies place little value on departments they misconstrue as ‘support’ or ‘service’ functions.  It’s not this way in all industries but some are behind the curve, they haven’t joined the dots yet.  It’s not worth stressing over but can be frustrating for those who see successful businesses holistically rather than in silos.

In April shortly after the promotion I noticed I was tired, very tired. I didn’t feel right.  I thought something looked different, went for various tests and investigations and remained staunchly positive throughout. I suspected the odds might be stacked against me; my family history is too damned predictable but I wouldn’t go along with the odds until they were confirmed.  Core biopsies followed at the end of May.

I’d already booked a week of activities to celebrate my son’s birthday in early June so was determined not to let him down.  I did my best to carry on regardless through this period of uncertainty and doubt. No-one’s 19th Birthday’s should be overshadowed by unconfirmed news that Mom might have cancer.  We had a good time and he has some great memories including his first trip to a West-End show.

On 12th June the odds became reality and for a month the reality kept getting worse.  The tumour is small, less than 1cm, but invasive.  Oops no it’s bigger, 2.4cm as it’s surrounded by an area of DCIS and LCIS (which, by the way, would also become invasive in 3 – 5 years).  The grade is 2 – no wait, it’s 3.  It might not be as contained as first thought, the MRI shows a lot of anomalies. Oh and it’s HER2 positive, that will be tricky.

Hello and welcome to the world of aggressive, difficult to treat breast cancer aged 42.  “This is treatable” my consultant said “and fortunately Herceptin is now funded for all HER2+++ women….  But only if you have chemotherapy.”

Being told you have cancer is never going to be good news but the worst news for me was chemotherapy.  I saw what it did to my Aunt and my Mom and I’ll never be able to shake those images from my mind.  I didn’t want that to happen to me. I don’t want it to happen to anyone.

RNLI Shannon Class Lifeboat. Credit: RNLI

RNLI Shannon Class Lifeboat. Credit: RNLI

After a week moping around, not eating, talking or sleeping I realised no-one was coming for me with a lifeboat.  I wasn’t helping myself either so I’d have to get my arse in gear, muster up some fortitude and ride this humdinger of a storm through.

I researched and researched and researched, went to every appointment with a list of questions and made sure to get answers.  I took along the latest papers, asked for explanations of conflicting findings, weighed up the risks and rewards of each surgery, surgical technique and the chemotherapy regimes I was offered.  And then I had an epiphany moment.

I realised I could just as easily get hit by a truck or obliterated in a car accident (I drive a many miles for work).  In fact there are plenty of other things that could kill me so why focus on cancer alone?  Why focus on any of them?  Life is for living and after the epiphany living is what I set out to do.

This change in perspective was fundamental in shifting my thoughts about myself and others. What really matters, the preciousness of time, finding something positive, inspiring and beautiful every day – even when the force 12 continues to howl all around me threatening mortal danger.  Why make my own life miserable, consumed by negativity and fear? Worse still why inflict that on those around me, why cause them more pain and concern than they undoubtedly already carry.

Of course there have been bad days; there have been some very bad days. This – investigations, surgeries, scars, chemotherapy, side-effects – is no walk in the park on a bright Spring morning.  There’ll probably be some dodgy days in future too because I have more surgeries to come in 2013. C’est la vie.  But finding fortitude – strength and firmness of mind; resolute endurance; courage in the face of pain or adversity – has been a big help. It’s an inner strength that carries me through.

Six months down the line from diagnosis and half way through my various treatments I have no idea what the future has in store for me. Or how long it will last.  But none of us ever knows how our life will map out, we don’t come equipped with a crystal ball at birth we just kid ourselves that we do. Throwing away the illusions, the ifs, whens and maybes lets the beauty of today shine through… even if a force 12 storm is trying (and failing) to sweep me off my feet.

Fortitude – I highly recommend this cardinal virtue.  Try to seek it out, when you find it hold on to it.  Where it comes from I do not know but if I could work out the formula I’d manufacture it and offer it free to anyone who is faced with the onslaught of one of life’s force 12 storms.

 

No matter how tall the mountain, it cannot block out the sun.

No matter how tall the mountain, it cannot block out the sun.

No matter how tall the mountain, it cannot block out the sun.

I’m told this is a Chinese Proverb and its very appropriate for me this week.  My body seems to be facing a few challenges following last week’s treatment.  Temperature regulation has gone out the window.

Yesterday I had cause to phone the out-of-hours chemo support number thrice.  The first time no-one answered so I re-dialled and eventually my call was picked up. The person at the other end was very pleasant but small alarm bells started to ring when she didn’t ask my name, my hospital number, what treatment regime I was on or when my last infusion took place.  I was advised to keep monitoring, take no pain-killers and call again at 8.30am if things hadn’t resolved. Dutifully I monitored all day, decided it wasn’t critical and wondered how on earth my temperature could be fluctuating so much over relatively short periods of time. Liver – are you causing this chaos?

The second time I called my temperature was 0.1 degree below the ‘head straight to Accident and Emergency’ level and I confess I was feeling a little warm.  No-one suitably qualified could take my call so they’d call back.  45 minutes later a very helpful person returned my call, said she thought we’d need to check my blood and suggested because her hospital is almost 2 hours away the best option would be to call my nearest hospital and check they have an out-of-hours haematology service.  Call her back if I had no luck, she’d book me into their unit but felt given the time and distance involved it would be better to attend my nearest centre.  I agreed.

I called my nearest hospital, asked for the relevant department and was then transferred to four different departments none of whom seemed able to help.  Eventually haematology gave me a telephone number ….  the number I called at the outset of my ‘please can someone advise me’ quest.  In the middle of the night I’d been re-directed to the hospital two hours away and at that point it dawned on me I have a new career in acting whenever I’d like it.  I’d entered the realms of a ‘Carry On‘ film and the only thing to do was laugh.

Fortunately alongside the ability to laugh at bizarre situations, I’m blessed with common sense.   I took my temperature again, found it had dropped by 0.2 degrees – possibly the icy chill coming from the less gracious parts of my psyche – and decided critical I wasn’t.  I’d keep monitoring and head straight to A&E if necessary because turning up in person means action would happen.  In Britain it isn’t the done thing to have a raspberry-coloured woman dressed only in her night-clothes passed out on the floor. Night-clothes in a public place are a terrible faux pas.

So back to bed I went but unfortunately the whole situation caused a lot of stress for Zub. He isn’t good with medical malarkey at the best of times; if he thinks something is serious and believes due care and attention is missing he gets annoyed.  By the end of my phone calls he was probably hotter than I was, he certainly had more of a rosy glow.

But such is life.  It pays to be able to take care of oneself, seek to understand as much as possible about the situations we find ourselves facing, their upsides and their consequences.  It’s always possible the person answering the phone won’t be fully equipped to address our questions or provide accurate advice. It’s not their fault it’s just the way things are sometimes.   As I was seeing the Oncologist today I prepared to grill him intensely about my symptoms because he is practical and straightforward. A precise answer without hmms and mmms is I all I needed.

  • 38 degrees is the magic number – temperature above that, off to A&E.
  • 37.5 – 38 degrees and feeling unwell – phone the help line (oh no, do I have to?)
  • 37.5 – 38 and feeling OK – just monitor.
  • Normal temperature and feeling unwell – phone the help line (OK, if it happens I’ll give it another go.)

It seems my dancing temperature is likely to be a reaction to last week’s treatment but the onset of neutropenia can’t be completely ruled out.   I’m working on the basis the former is more likely than the latter and the mind has restorative powers we don’t fully understand so I’m giving it the opportunity aid my body in regaining its composure over the next few days.

No matter how tall the mountain it cannot block out the sun. Every day, including those written for a Carry-On film,  is 24 hours of progress.

 

It’s all gone Pete Tong!

What can I say?

I got up very early today and started taking my super high dose of dexamethasone in preparation for Taxotere and Herceptin (TH1) tomorrow.  I made the 45 minute journey through floods to get my bloods done.  I asked the phlebotomist to take a rather large quantity of extra blood samples so I may participate in the Imperial Cancer Research  BOCS study where I hope to contribute to the body of knowledge and the race for a cure for breast and ovarian cancers.  I also dropped by to see the trials nurse at chemo camp where I formally completed my paperwork for the Persephone trial, another attempt to improve the body of knowledge and possibly make this all just a bit more bearable for future generations.

For the past few weeks even if it’s made me gag I’ve eaten as balanced a diet as possible to ensure my blood, especially the white blood count and neutrophils, stayed above the cut-off point for chemo to take place.  I’ve approached saintliness and that’s no mean feat when undergoing this treatment.  Don’t get me wrong, I do not enjoy it one iota but I work darned hard to make sure I do everything I possibly can to keep the chemo on track.

Today it’s all gone Pete Tong. Wrong, wrong, wrong.

Due to an admin error it’s all gone Pete Tong!

All I can say is Fec. A great big Fec with extra Fec-ing Fecs on top.  It’s all gone Pete Tong and what’s more it’s absolutely nothing to do with me, my somewhat strange, deranged and deviant body or my incredibly important yet out-of-a-stone only blood donations.

It’s almost impossible to believe but it’s all gone Pete Tong because for some reason beknown exclusively to the admin powers that be, my blood test results were not treated as urgent today.  Instead they went in to the ‘we’ll get round to them at some stage’ routine reporting pile.  Here come the dominoes….. as my blood test results weren’t passed to chemo camp pharmacy in sufficient time, my Herceptin prescription wasn’t written up for tomorrow.  As my Herceptin wasn’t written-up, my oncologist wants to delay my treatment.  I’ve taken a whole days worth of super-strong steroids for no reason whatsoever and there’ll be no TH1 for me to look forward to in the morning. I now have to wait until Tuesday 4th December.

I tried telling myself it’s just a one week delay but the reality is it’s not that simple.  A one week delay means TH2 falls on 25th December.  Chemo camp isn’t open on Christmas day and even if it was I’m fec-ed if I’d rock up for chemo instead of spending time with my family when fully cognizant that for the rest of Christmas and New Year I’d be sore, sickly and dealing with a new set of side effects. It’s inevitable. Just as a row of dominoes creates the domino effect once the first is flicked, delaying  TH1 means TH2 will also be delayed.

I’m not a betting person but I know a dead cert when I see one and here’s the rub. TH2 will not be delayed by just one week, it’ll be delayed by just over a fortnight because a Doctor must be present when I have Taxotere and Herceptin (in case of the allergic reactions I mentioned in Ascending at Altitude http://wp.me/p2MIsj-7s  It’s Christmas, the Doctors won’t be back until January 2nd at the earliest. TH2 will be January 3rd at the very best projection. All because someone in ‘admin’ failed to note that my blood results were marked urgent at 9.30 am this morning. >:-/

It gets even better when I look ahead to 2013. All the medical people associated with my treatment journey insist that: I must not look ahead, I should take each day as it comes, I ought to stop planning and concentrate on getting through the present.  What they haven’t appreciated is that I get through the present by looking ahead, imagining how, where and with whom I’ll be enjoying my life in the months, years and decades to come.  I’m 43, I’m expecting to double that in spite of my degenerate body so I don’t intend to be confined to a 24 hour event horizon.  My mind doesn’t work well with simple achievable goals – they’re too easy, they present no challenge and to me they’re a bit of a cop-out.  My mind finds inspiration when it cogitates on objectives that look almost entirely unachievable, the kind some people might shake their head about and say “oh my God” or “that’s impossible” without giving them a second glance.   But that’s the way I’m wired up, always have been and probably always will be.

I anticipated being done with chemo on January 8th, very early into 2013.  Finishing in the first full working week of 2013 meant that when I came to re-write history, as we all do,  I could easily consign chemo and all it has brought me into the strange events of 2012 category.  I could cope with mentally fudging dates so early into the New Year thus liberating myself and considering 2013 a completely fresh start where I’m cancer-free all year and for many decades to come.  Now it looks like chemo won’t finish until the end of January, a whole 1/12 the way through 2013 and even with my hyperactive imagination I’ll find it hard to fudge a whole month out of existence.  I know the Herceptin hokey-cokey spans most of next year but I’m told it’s nowhere near as much fun as chemo so I’d consigned it to the ‘still fighting cancer minus head to toe collateral damage, keep strong and carry on’ category.

And the icing on this super sticky cake….. if my remaining chemos are delayed along the lines I anticipate above I’ll stop getting paid for the pleasure of my (until now) regular near-death experience and all the post-chemo recovery period Dr C predicts  ‘takes a while.’ The most expensive time of  year when heating bills are astronomical, food prices are rising faster than ever, I’m forced to buy a lot of my own drugs via Amazon because the health authority can’t afford them and simply filling my car with fuel for hospital trips consumes a significant chunk of our household budget.  Fec-ing fantastic. I don’t use the very, very naughty swear word but if I did, today might be a good day to use it. All because of a stupid and completely avoidable admin error. Thanks whoever you are, you’ve made my day, my month, probably my year and you’re going to have a material impact on me and my family next year too. That’s just perfect.

I’m going to have to play the Glad Game (http://wp.me/p2MIsj-aP ) full-on like a woman demonically possessed of boundless optimism, limitless forgiveness and the remainder of a 16 mg corticosteroid ‘high’, starting right now. So here’s the initial glad list:

1. I can immediately stop taking excessive corticosteroids that speed my heart, cause dizziness, swelling, migraine and turn me bright red… and restart them next Monday.

2. I won’t endure poking, prodding and battered-wife style bruising involved in numerous failed attempts to find veins for chemo tomorrow. A one week reprieve might offer my hand and wrist a few extra days to regenerate into something more veiny. Be glad bony appendages, you’re onto a winner this week.

3. I don’t have to anticipate what will happen to me during or after TH1. It’s only temporary but I’ll use the time to think other, lighter thoughts as I stay awake all night tonight thanks to aforementioned steroids.

4. I’m glad I decided that when the sky falls I want to be Bond (http://wp.me/p2MIsj-b4). Another admin-related Pete Tong incident might make my moral compass swerve violently away from cake and cocktails; procurement of a SIG P226 would become my only mission.  Screwing up my chemo schedule, my thoughts about 2013 and my pay might be a tiny inconsequence for whoever made this jolly cock-up but it has huge consequences for me and my family. I beseech you, do not do it again because you really wouldn’t like me once I’m strawberry blonde, more than slightly annoyed, armed and Bond.

I’ll play the glad game again tomorrow when I suspect my thoughts may no longer be clouded by images of incompetent administrators and semi-automatic handguns.  If I don’t post here in the next few days it’s most likely due to the fact that someone in law enforcement is reading my blog and visited me with ‘the big key’ during one of those special early morning wake-up calls.  That kind of action really would throw everything into the ‘it’s all gone Pete Tong’ category but I’m optimistic at heart and there’s room for the glad game to continue, even in the trickiest of fixes.

I already have my hypothetical list of things to be glad about including:

  • Providing my neighbours with something juicier to gossip about than the state of our weather.
  • Feelings of immense gratitude because Sky TV, higher education degree courses, food, drink and heating are all gratis when detained at Her Majesty’s pleasure.
  • My cancer treatment would carry on regardless of my incarceration.
  • I’d avoid infections as I’d be held in solitary confinement.
  • Zub could claim single occupancy council tax relief (a 75% reduction) so there’d be one less dirty great bill to worry about.

I guess the incompetent admin might not agree if I secured a SIG, developed a psychotic version of chemo brain and was unable to forgive any more errors.  But when I come to think of it there’s a tidal wave of gladness just waiting to wash over me if I were to be arrested and locked-up.  It looks like we might be significantly better off if it all went a bit Pete Tong.  Just how wrong is that?

 

 

 

It’s chemo. I’m not marked by the Devil.

By 2012 you’d think people might be used to seeing other people with cancer. Bald heads, no eyelashes or eyebrows, sometimes gaunt, sometimes using sticks or frames to walk. There might be more awareness that folks having chemotherapy can be any age because cancer isn’t fussy about who it grows in and it’s growing in more and more of us.  I thought people would be more used to seeing it,  they’d be more aware.  I can understand kids staring, they aren’t to know about the horrors of cancer or the physical changes chemotherapy brings. But adults?

I’m lucky because I stand tall and walk around unaided. Most of the time I’m “normal.” The only visible signs I’m dealing with cancer are my hairlessness and very pale skin.  I cared about the hair at first, when my scalp was sore and tingling. I cared when I could run my hands through and find them carpeted in golden strands that I hadn’t even felt detach from my head.  Seeing my hair all over my hands made me realise I was sick, very sick.       I don’t care about it now, it’s just hair, I’m doing fine and I’ve adapted.  I’ve always been good with different and this is just a different, more streamlined version of me.

My head gets cold and most of the time I wear hats. I like beanies and slouchy berets. When the temperatures drop a little lower I’ll pull out the fake fur and have fun rocking a cossack look, long boots, big coat and furry hat. Winter is a good time to do chemo from a head-gear point of view.   I guess I am a bit thinner than I was before but I don’t look malnourished and I’m pale in a fashionable Twilight kind of way without the sparkles. I would’ve liked sparkles.

I put on make-up when I go out and I’ve developed techniques (thanks to a very special friend) to disguise my lack of brows and lashes.  I confess I’ve never been brilliant with cosmetics hence my need to ‘phone a friend but occasionally I manage to impress myself. If my patience holds up and I get it right I can make myself look feminine in a cancer-chic kind of way.  I smile and laugh, I’ve got good posture and I walk fast. I’ve always walked fast because I’m tall with a long stride. So even if my speed has diminished a little I often find myself overtaking other folks on the sidewalk.

That’s when they stare and I wonder what it is they’re seeing.

This staring isn’t reserved for the sidewalk. People stare at me when I go to the shop or for a stroll.  They stare when I go to the hospital too. Inside the hospital where sick people go to die or get well again. Surely I’m allowed to be bald in hospital, the place that made me bald in the first place (!) so that I can get well again?  The hospital staff have seen it all before, they don’t notice my hair has gone and even if they do they aren’t bothered by it.

When I have to engage with a stranger at a check-out or in a filling-station the staring from a distance turns into a look of panic, pity or repulsion.  Sometimes its as if they’re thinking she’s coming this way,  sh*t, she’s going to talk to me.  Well of course I am because I don’t want to get arrested for shop-lifting. D’oh!  So I smile, say hi and act normal.  I am normal. I want to pay and be on my way like any other ordinary customer.   A few times cashiers realise I’m not marked by the devil, it’s just cancer and chemo fecking me up a bit.  A few times they ask how I am and I tell them I’m having treatment and overall I’m doing well. They seem to understand and I wonder if their lives have been touched by cancer too?

But a lot of the time people just stare, they don’t ask how I am or say Jeez, I feel for you, good luck with everything.  I wonder if I’ve been marked by the devil  😦                       Christ-on-a-Cracker if I take my beanie off 666 is going to be branded on my head!  Don’t worry, I’ve taken a good look from all angles and it’s not on my head. I’ll look elsewhere.

I accept it’s a little strange to see someone relatively fit and youngish looking with no hair but I’m not the Anti-Christ.  It would be nice if people could get over how I look and see that underneath my hat I’m just another human being getting on with my simple human life.  I won’t bite, I’m not contagious so if you ask how I’m doing I’ll say I’m doing well and thanks for asking 🙂 I wouldn’t be buying petrol if I was about to drop dead and it’s illegal to build your own funeral pyre in this country. Using petrol would definitely be a no-no.  So trust me, if I take off my hat (I won’t) I do not look like this. I will not drag you to hell.

For some extra insight into being different, my sister in arms HighinBrixham has a very funny post here: http://highinbrixham.wordpress.com/2012/10/09/im-normal-youre-too-furry.

And a poignant and touching insight can be found here mywifesfightwithbreastcancer.com/reactions   at Angelo Meredino’s website.  Angelo photographed his wife’s cancer journey, this link shows people’s reactions to her.  Jen lost her battle and Angelo is a 38-year-old widower. I feel for him.

Being there

Although I went back to work very soon after my son was born, we’ve always had a great relationship. I’m not entirely sure how it developed; I think many things helped. Listening and just being there for him is probably a big part of it.

When he was younger we had regular stories at bedtime. We started with books like the Hungry Caterpillar and Wind in the Willows then moved on to the Harry Potter series.  We had lots of made-up stories too.  He was one of the main characters and the tale unfolded around him.   I  racked my brain coming home from the office everyday to think up a new adventure he would be part of that evening. We had some very far-fetched quests but when you’re five years old does it really matter if you defy gravity or bend the second law of thermodynamics a little?

When he was old enough we’d go to the cinema, eat ice cream and enjoy a film.  We visited the zoo and the museum regularly too, more ice cream, face-painting and watching the animals. They were much livelier at the zoo and there was a strong chance they’d poop on you in pets corner; they were easier to see in the museum with no poop-risk. We viewed kids TV together –  Captain Scarlet, Funny Bones and Star Trek, then we’d draw the characters and stick the drawings in a scrap-book. Harry Potter was the hero of the moment so I painted a floor to ceiling mural of Hogwarts in the corner of my son’s room – it was a cool bedroom for a ’90’s child.  We played in the garden or walked to the park with whole loaf of bread to feed the birds; families of ducks soon became our friends. Our outdoor adventures often involved getting muddy or falling over but either way, he’d come to me to clean him up and make any bumps, knocks or grazes better.  A hug and some savlon worked wonders.

When he started school we practiced handwriting and did math together.  I helped him make party costumes and scale models, sent him in with baking ingredients and looked forward to chocolate-chip cookies, cheesy pizza or bread rolls when he came home. There’s something very special about sampling your child’s first culinary delights, you never forget it. And he’s a decent cake baker today so there’s a lot to be said for primary school cookery lessons.  We considered ideas for homework projects and revised for exams, I encouraged him to play sports and learn music. Many a happy Sunday morning has been spent frozen-stiff, ankle-deep in mud and drenched through to the skin, returning home later to defrost, listen to guitar, flute or drums being practiced. (Yes, I’m the Mom who allowed drums in the house and yes, they’re very loud. I’ve never regretted it though.)

As he grew older we worked on some of life’s challenges. Dealing with bullies, what growing-up is all about, when to hold your position and when to back down. How to respect others opinions whilst still having a mind of your own – something I believe to be hugely important. Attaining a good pass in a subject that’s not your favourite, coping with exam nerves, university applications and learning to drive. Plus, of course, that perplexing but none the less essential topic – what girls are and why they might seem confusing for boys at times.

I’ve always been there for my son. We’ve shared many good times together and I’ve made sure he knows two key things:  1. There’s never a problem too big to be solved. 2. When it comes to problems, two heads working on the solution are usually better than one.

My son called me at 10pm two days after the last chemo to say he’d been taken to hospital.   I don’t like late night ‘phone calls, not once have I known them to bring good news and this one was no different.  He’d had an accident playing football, his sporting passion, and was waiting to find out if he’d broken his leg… something in there had made an audible snap sound and he couldn’t walk.   He was in the city A&E waiting for results of x-rays and I wasn’t there for him.  Worse still, I wasn’t well enough to get in the car and drive a couple of hours to reach him.

Now from his perspective, this is probably not as bad as it sounds. His Dad was there so he was in safe hands; he’d get a lift back to his student bed-sit once the hospital worked out what was wrong.  From my perspective it was a disaster.  I was unable to be there for him and it hit me like an express train.  Even though he’s a young man and more than capable of looking after himself, he’s still my son.  Rationally I knew the hospital would fix him up; I knew he’d get to his flat safely. But the emotional realisation that I couldn’t just grab my car keys and be by his side was very disconcerting. I felt miserable and inadequate.

For me, being there is part of being a Mom. It doesn’t matter how old he is or where he is, when my son needs help or support I want to be there.

PS. He hasn’t broken his leg, his ligaments are a different story. Orthopedic referral coming soon.