Chrestotes: the quality of kindness.

Someone once told me a cancer diagnosis is the fastest way to find out who your friends are.  True friends will shine day and night while fakes become increasingly conspicuous by their absence. When your world shakes over twenty on the Richter scale another earth shattering revelation – you’ll be abandoned by people you care about – is almost as shocking as the diagnosis itself.  I remained open-minded and hopefully optimistic while chemotherapy dissolved more than just the cancer.

Three years on I’d love to report that my optimism was well placed, the advice proved invalid and all my friendships remain intact but I can’t.  I’d like to share an explanation for the disappeared friends but I can’t do that either because they evaporated into the ether like the crew of the Mary Celeste. I guess cancer is still too much for some people to deal with.

But the story doesn’t end there.

Aviary Photo_130718654939381437The other part of the prophesy – true friends will shine day and night – is equally true.

They shone, they shine and they keep on shining 🙂

I feel very fortunate to have true friends who are hugely supportive, thoughtful and encouraging.  They demonstrate all of the qualities of chrestotes: compassion, consideration, sympathy, humanity and kindness.

They’ve sent messages for a speedy recovery, cards, flowers and gifts. I am touched and overwhelmed by their continued kindheartedness and support and I feel extremely lucky to know such genuine, compassionate and beautiful human beings.

I’ve also received cards and good wishes from family friends – people who know of my trials and tribulations via my father and decided to lend their support. My hopeful optimism wasn’t entirely misguided because family friends, friends of friends and complete strangers have all proven amazingly kind.

Of course a post about kindness would be incomplete if I failed to mention my father.  For as long as I can remember he has devoted his life to help others yet his own life has been far from easy. A lesser person might have become peevish and resentful – my father isn’t.  Throughout the process of diagnosis, surgery, treatment, recovery, first prophylactic surgery, recovery, the recent second prophylactic surgery and this new period of recovery my father has been an inspiration – encouraging, supportive, wise and humorous (he has an excellent sense of humour and sometimes laughter really is the best medicine…)

The kindness shown by my family and true friends will never be forgotten. It buoyed me through some very difficult experiences and continues to inspire me on a daily basis. WP_20150320_010I am so very grateful to you all.

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Cicatrix

  1. a scar left by the formation of new connective tissue over a healing sore or wound.
  2. a scar on a plant indicating the former point of attachment of a part.

We all gather scars, some more visible than others.  They mark the various knocks and scrapes we encounter as we make our way from childhood to old age. The grazed knee in the playground, the cut finger in the kitchen, the gashed hand in the garage – each serves as a reminder of our calamities and mishaps.

Yesterday the dressings protecting my newest wound were removed. It isn’t pretty.  Long and red it sports uneven edges, rough scabs and is filled with medical grade superglue.  Around it lies a fair amount of swelling and bruising, some blue-black, some yellow.  Tell-tale holes at the side of my rib cage (a modern vampire bite if ever there was one) signpost the point where the drains used to be. The complexity and scale of this surgery is easy to underestimate.

Once settled and healed I’m confident the reconstruction will be a good match for it’s opposite number. That scar has now faded to a straight, flat, thin white line. Little more than six or eight centimetres from end-to-end it is reasonably unobtrusive given it’s calamitous reason for being. Like the forty year old scar from a fall in the playground or the one in my heel (from treading on broken glass at nineteen), each cicatrix has its own story to tell, a series of events that led to its appearance and some lessons learned along the way.  An up close and  personal experience of cancer isn’t something any of us wants to learn from so prevention is definitely better than treatment as Angelina Jolie will no doubt attest. Surgery is a radical option but for some of us it’s the best thing science can offer right now.

I’m not a huge fan of Picasso’s art but one of his sayings is useful when reflecting on this experience: “Others have seen what is and asked why. I have seen what could be and asked why not.”  Being covered in permanent cicatrices, deconstructed and reassembled – none of it is pretty – but cancer and the chaos it creates is much uglier.

Obscuration Over

We witnessed a solar eclipse today.  From our mid-latitude location the sun was 90% eclipsed by the moon.  No totality so no moment of total darkness but for a while the heavens took on a blue-grey twilight and colour seemed to leech from the skies and the fields.

We live in an area steeped in superstition, a place where folklore suggests irrespective of gender anyone who lived alone was sure to be a witch. It’s easy to imagine how celestial events invoked fear, awe or suspicion in days gone by – evidence of rampant witchcraft or very unhappy gods. People are less inclined to lore now which is good because my penchant for cats, wildlife and unusual plants would almost certainly see me on the ducking stool! Once this morning’s obscuration was over the sun regained its normal resplendence and residents of rural Worcestershire enjoyed a beautiful Spring day.

As children we rarely realise that our time on earth cannot be reforecast. Days spin out in front of us and what we do with them is of little consequence. There’s always tomorrow or the day after that.  As we grow older we begin to appreciate that time is precious. Irrespective of what any given day might bring, we owe it to ourselves to make the most of it. I find my inclination towards down-to-earth optimism helps. Enough enthusiasm to find something positive in almost any situation coupled with sufficient realism to accept that sometimes shit happens. A happy balance with little room for pessimism or melancholy until the shadow of obscuration crept in.

Like ancient superstitions this is, perhaps, an inescapable consequence of time served in cancerland. Days, weeks and months on the not-so-merry-go-round of tests, results and treatments seems to open up tiny nooks for boding and contemplation of ill-omens. Surgery rarely bothers me. The possibility of undetected changes does. It would herald a return to the not-so-merry-go-round and I don’t want to ride that one again.

For the residents of rural Worcestershire today was a beautiful Spring day.  For this resident, ten days on from surgery, it had the potential to go one of two ways. My pathology report is clear and the blob of tissue (that used to be my breast) showed no signs of cancer.  Obscuration over, today was a very beautiful Spring day indeed.

Portreath & Lizard 16July2013 2013-07-16 060

Stamina: the hare and the tortoise

Six days on from surgery and all is progressing as hoped. Stopped taking pain killers on Sunday and the ‘out’ drain was removed yesterday. One down, one to go. 

There’s a moment of anticipation before the drain is pulled – a split second between the Consultant’s “do we have a stich cutter” statement and the patient’s “is this going to hurt?” thought. Quite irrational given the scale of previous procedures and no, it didn’t hurt. Co-amoxiclav will continue, to guard against infections while the outside world is closely coupled with the inner world through a green plastic tube and the remaining drain bottle. 

A bit of welly (stamina) is called for when it comes to surgery and recovery. The dictionary defines stamina as: endurance, the ability of an organism to exert itself and remain active for a long period of time, as well as its ability to resist, withstand, recover from and have immunity to trauma, wounds or fatigue.

Remaining active while shaking off the effects of anaesthetic and synthetic opiates is a little difficult, especially when it’s impossible to see straight. Once all those drugs have worn off getting up and about is an important step along the pathway to healing. Sitting/lying still for too long leads to bed sores or thrombosis, neither of which is a welcome addition in an already complex situation.  A bit of walking and gentle use of the surgery-side arm helps but running a marathon or digging the vegetable patch is out of the question for at least a few weeks. Aesop’s fable of the Hare and the Tortoise may well have been written for such occasions. Slow and steady is the way to go.

The same holds true for the dressings, the wound, the scars and the newly created breast itself. Initially there are all kinds of things holding everything together – steri strips, superglue, waterproof dressings and the industrial strength sports bra worn day and night to ensure nothing moves around. Underneath that there’s the creeping/tingling/pins and needles sensation of nerve regeneration (which is odd to say the least) and the natural swelling, bruising and scarring to get used to. So the requirement for stamina isn’t just physical, a bit of emotional welly is important too. Even with an eye for the avant-garde it’s difficult to describe a swollen, bruised and slightly distorted breast as aesthetically pleasing. These things all resolve in time too, slow and steady.

I was never a good sprinter but the 10k? Well that’s another story 🙂



Written in the stars?

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Constellation: Leo

I confess I don’t believe in horoscopes but every now and then something comes up that might just hold a smidgen of accuracy. Today my horoscope says: “This week you are reconstructing something that was once deliberately dismantled. It will be a positive process.”

Prophylactic mastectomy could easily be classified as something being deliberately dismantled. In this case a left breast. Immediate reconstruction with ADM plus an implant is reconstruction (of said left breast removed and reconstructed on Wednesday afternoon). This week’s horoscope begins to sound quite plausible. “It will be a positive process.”  That’s such an open-ended statement. Does ‘it’ relate to the dismantling, reconstructing, both or something else entirely – there are a host of physical and psychological processes going on right now but are they positive processes?

After giving this a lot of thought the only conclusion I can draw is yes.

This surgery had the potential to resurrect so much that was difficult, painful and confusing, negative even. Being diagnosed with cancer isn’t a positive life event; my previous surgery was cancer surgery and it caused significant disruption in my life and the lives of my loved ones.  We are still recovering from some of those problems. This time around the procedure was broadly the same but the reasons are different. The next steps won’t (with luck) involve any further treatment.

I can’t change what’s written in the stars, or more precisely, in my genetic code but limiting its potential impact is another story.  Taking action is a hugely positive process. It is not without cost but what value do you place on the chance to live beyond 50 years of age, to see your child grow up, meet your grandchildren, enjoy your retirement?

Women with two or more close relatives who develop breast cancer at an early age fall into the high-risk category. Those who’ve already experienced the disease face an increased risk of another encounter. I tick both of those boxes and my first encounter was aggressive and high grade. Very recent research indicates the risk for women with long histories of familial breast cancer may be as much as 1 in 3 rather than the typical 1 in 8. I tick that box too. For people like me undergoing prophylactic surgery may reduce the risk by as much as 90%. Of course it’s important to remain vigilant because risk-reducing surgery isn’t a panacea, it doesn’t make cancer an impossibility in the same way wearing a seatbelt doesn’t make everyone survive serious car accidents.

In life there are no guarantees – never were – we just kid ourselves that we’re invincible. However the benefits of this process, of dismantling and reconstructing, aren’t just physical. For me some of the most positive aspects are psychological. No more annual mammograms that leave me fretting over the reliability of results. No more second guessing self-exams that might or might not have uncovered another anomaly. No more thinking of my own flesh as a time bomb waiting to go off (again).

For more than twenty years I lived with a question that I was never able to answer to my own satisfaction. The question: “Have I done enough to reduce my risk of cancer?”

For the first time in a long time I am able to answer fully and frankly: “Yes. There is nothing more I or anyone else can do.”

Double vision… 

On Wednesday they gave me Fentanyl. According to Wikipedia “Fentanyl is approximately 80 to 100 times more potent than morphine and roughly 15 to 20 times more potent than heroin. That explains why I thought I was on another planet and had double vision until midnight!  The good news is surgery is over, I returned home yesterday and managed to get some rest last night.  I’m slow, sore and very swollen but happy to forego another night on the ward. The hospital is desperately short of beds and my quick turnaround means someone else will have their surgery sooner, or an emergency patient will spend less time in a corridor. Paying it forward is a good thing when it comes to the availability of hospital beds.

Most of my memories from previous surgery proved accurate. The marker pen was purple not green this time. When I regained a semblance of rational thought I wondered why my neck, upper arms, shoulders and torso were all bright red. I had a flashback to dexamethasone, the pre and post chemo steroid that caused regular chaos, then recalled the anaesthestist telling me it was the first drug she’d inject pre-surgery. Too late to argue by then. I checked my legs – no redness. Eventually it dawned that I’d been painted with hibiscrub to protect against a whole host of nasties including MRSA. I’ll be scarlet until I can reach to give myself several thorough scrubs (and it’s safe to wash around the wound). I’d forgotten about regular post-op observations and with both arms off limits my right calf was adorned with a blood pressure cuff as well as the space boot. 

Drains proved a source of amusement for the nursing staff all day. One is labelled ‘in,’ the other ‘out.’ I remember this from last time and was able to explain: one sits inside the ADM (pig intestine) pocket and one sits outside. Both are designed to offer the best possible chance for the Acellular Dermal Matrix to integrate into my body, eventually being colonised by my own cells. Human becomes part pig which in turn becomes human. Venflon placement was uneventful on entry, not so on removal due to the blood thinning injection received overnight; I’d forgotten that part too.

As ever the staff were brilliant. Miss M. was on top form – honest, consultative, down to earth. A first rate surgeon she is also amazingly humble, oozes positivity and inspires faith. The theatre nurses from Ireland and Portugal were kind, humorous, gently reassuring men. The anaesthetist was a local lady who’d read all my previous notes and expressed deep sympathy for the traumas I’d endured over the last few years. The night nurses were from Thailand and the Philippines, warm, kind and caring.  The ward sister, another local, sought out whole grain bread, jam and green tea at 3am when she realised I hadn’t eaten for 21 hours. The level of care was faultless. 

Faith and trust in the medical team helps clarify the thought process surrounding semi-elective surgery of this nature but going through with it remains a challenging and deeply personal decision. The procedure is invasive, it maims, scars and is inescapably linked with the reason the original surgery wasn’t elective at all. Complex psychological impacts are interwoven with the physical challenges of surgery and recovery. Opposite me was a thirty year old woman who’d just had a bilateral mastectomy. She was the super fit and healthy member of her family, the one everyone made fun of for her good eating and exercise habits,  the last one anyone dreamed would develop breast cancer. Her question, the question without answer, was ‘why me?’ 

We shared stories and philosophies, she asked about post surgery experiences, what chemo was like and how long treatment had taken from start to finish. She was shocked by her diagnosis and reluctant to spend an entire year of her life attempting to eradicate cancer from her body, but her consultant strongly recommended chemo given her age. She felt conflicted. Her friends suggested it was too radical and debilitating, she was fit and otherwise healthy so surely diet, exercise and the operation would lead to a cure? 

I remembered my thirty year old self, raw from the death of my Mother, trying to advocate for my future health (and failing miserably) at a time when much skepticism surrounded cancer genetics and inheritance. I explained if prophylactic mastectomy had been offered then I’d have leapt in without a second thought. I also explained that given a choice I’d have avoided chemo like the plague but histology meant I’d been given no choice. I shared that on reflection my reaction to the suggestion of chemo had little to do with the most effective treatment for me and everything to do with the lived experience of my Mother’s illness, a deeply traumatising period that had distorted my thinking.  

It wasn’t my place to tell this young woman what treatment to sign up for or how to proceed because her cancer is as individual to her as mine was to me. Yet everyone had made fun of her healthy eating and fitness regime and she now finds herself facing cancer with friends suggestions that diet and exercise might offer a cure? I asked as politely as possible if any of her friends had experienced cancer themselves or amongst close family members because it might just be possible their thinking is clouded too? Facing a decision that might impact the rest of our lives means we owe it to ourselves to ensure, as far as possible, we’re working with facts and not obsessing with our own or other people’s perceptions. It’s by far the toughest and loneliest decision in the world… Wherever her thinking gets to, I hope it’s the right thing for her.


Round Five: Back in Surgery

Today is, I hope, my last surgery for… ever (or at least a very long time).

It’s the fifth invasive procedure in less than five years, more than most people have in a lifetime but less than some of my friends. The running order will be something like this:

  • Check in to hospital, lose sense of direction in highly convoluted corridor system with random signage.
  • Regain sense of direction after glancing sign for the ward next to the one I need to find.
  • Check in to ward, sit in waiting area for a while.
  • Fidget… boredom is setting in and the chairs could be more comfortable.
  • Get called by Miss M. Expose torso and get some nice green lines drawn across the target area. Miss M. says  she hopes to create a new breast after removing the original, but warns if something goes awry I may wake up without it.
  • Go to allocated bed, change into hospital gown leaving little to the imagination. It’s very short and needs to be tied at the front.
  • Meet anaesthetist, discuss teeth, breathing and open mouth for inspection, rather like they do with horses to see if they’re worth buying or not.
  • Wait a bit more.
  • Get called to theatre and ride on a trolley. This has the potential for lots of fun, except we’re on our way to theatre.
  • Enter the antechamber. Everything is white and shiny like a Colgate advert. Anaesthetist approaches and begins the hunt for veins.
  • There are two pathways at this point. (1) hunt for veins successful and they start injecting sleepy drugs. (2) hunt for veins unsuccessful, I’ve passed out and they’re reviving me before they try again. I always hope for route (1).
  • Various slicing, splicing, trimming and stitching goes on as Miss M works her magic for c.4-5 hours.
  • Someone is calling my name. I open my eyes to find myself in another Colgate advert.
  • I can vaguely see other people on trolleys but they look like enormous sausages because I haven’t got my glasses on.
  • Pain control drugs are regulated and my head spins… I am reminded of the all reasons I’ll never become an illegal opiate user.
  • A bit of shivering goes on and I try to answer questions but my voice is hoarse. The staff are good at lip reading and another blanket is placed over me.
  • Miss M. whizzes by to confirm how it all went.
  • I’m wheeled to a different place in the ward and lifted into bed as I’m incapable of getting into it unaided. I am reminded of all the reasons I need to stay fit and healthy so as not to become a burden for others.
  • I eventually regain enough wherewithal to realise I have space boots on my legs regularly inflating and deflating. They’re noisy. Someone has to release me from them if I need to get out of bed.
  • I’m fully awake and realise I have matching accessories – a couple of surgical drains to add to the drip and space boots.

Fingers crossed it will all go to plan and I’ll be back at home in a few days 🙂

 

Walking downhill is easier, but the view is always better at the top :-)

We move mountains by carrying them away stone by stone.