Such a long time

It’s been such a long time since I’ve written. Not just here at FEC-THis but anywhere really (except reports for work).

Maybe its because life has been busy and recovering after cancer takes a lot of energy. Maybe it because between living and working there isn’t much energy left for anything else. Or maybe it’s just that dwelling on what’s gone before and fretting over what might lay ahead just isn’t my thing (it really isn’t). I don’t want to remember much about what having cancer did to me though it’s all still too vivid to blank out completely. I guess it takes time.

So here I am almost 5 years on. Still alive, still well – with a few non life-threatening health issues to live with – still working, still being a wife, Mom and daughter and still grateful for all the extra days I’ve had even if the cancer treatment itself was far from idyllic.

Aside from ongoing check-ups I thought I’d put long hospital visits well behind me. But life has a funny way of throwing up issues just when you think it’s approaching what might be called normal. Our latest exploits include spending most the last fortnight in an isolation ward, including a 36 hour stint with no sleep, because my son J contracted meningitis.

Cancer is a really crappy disease and now I know meningitis is really crappy too. Within a few hours J went from being a healthy, active, fit young man to completely bed-ridden, very unwell and mainly unconscious. He didn’t move for almost 48 hours. Fortunately the out of hours GP we saw decided J needed to be admitted to hospital and once admitted, they started IV antibiotics, antivirals and fluids almost immediately. Within about 7 days there was a marked improvement and after about 12 days J was almost his usual self.

Once again we’ve been lucky. Lucky we didn’t ignore the symptoms (earlier the same day we’d been told it might be migraine or sinusitis – he’s never suffered with either), lucky we went to a very seasoned out of hours doctor, lucky we got the treatment needed before any long term damage was caused.

Like cancer, this isn’t an experience I’d want to go through again. Diseases that strike kids and young people seem particularly cruel. As a parent you want to keep your children safe but there are some things you just can’t protect them from. For me, this was one of them and it’s worth knowing that meningitis symptoms don’t always involve a rash.

Lots has happened since the last time I wrote here and most of it has been good / normal / uneventful. But life is unpredictable and I guess there’ll always be a few hiccups along the way. It’s a miracle any of us stay sane!

 

IMG_0354

Leaving hospital… and looking a trillion times better than when we went in ūüôā

 

Hopes for the New Year

berries

2016 has come and gone.¬†There were a few¬†health hiccups for me along the way but nothing compared to the amount of grief and suffering in the world at large.¬†¬†Now 2017 is here and already people are committing atrocities,¬†inhumane and yet so tragically¬†human. My hopes for a peaceful new year will just have to lie dormant¬†for¬†another 364 days and see what 2018 brings. Something tells me it’ll be much longer before we all wake up to¬†find our¬†planet free from strife with every vestige of¬†humanity behaving as truly civilised.¬†I live in hope though, as I’m sure many others do.

Since¬†world peace is well beyond my capabilities, my hopes for 2017 are considerably smaller and more intimate.¬† While many people have been enjoying the Christmas break, work, study¬†and revision (a lot of revision) have been the order of the day for our family. So my first hope is that those of us who’ve been working get a break and those of us who’ve been revising pass our upcoming exams and settle in to our placements for the year¬†ahead.

My next hope is that my friends and family stay happy and healthy in 2017.¬† Last year was something of a trial for most of us and in the end we weren’t unhappy to¬†wish it¬†goodbye.¬† None of us is equipped to deal with too much death, despair and difficulty in such¬†a short period of time.¬† I know I’m still a bit worn down by it all so a less eventful year on the bad news front together with positive¬†physical and mental wellbeing for all of you is my wish this year.

The last of my hopes for 2017 is a personal one because this year marks the 5 year anniversary of my cancer diagnosis.  If I sat down to write all the things that have happened since June 2012, the challenges, the bête noir, the unending uncertainty and the sheer weight of it all I fear I might lose touch with my sanity.  So instead it shall stay in the past where it rightly belongs and I shall hold hope that health-wise, 2017 is incredibly, remarkably and boringly uneventful for me.  Because uneventful means the likelihood of a reoccurrence, whilst never fully extinguished, is considerably diminished from June onwards.

Whatever you leave behind from 2016 and whatever you hope for from this new year, may health and happiness be your faithful companions in 2017 too.

Remembrance

 

Maple tree, Clun

“It has been said ‘Time heals all Wounds.’ I don’t¬†agree. The wounds remain.¬†¬†In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.¬† But it is never gone.” Rose Fitzgerald Kennedy.

It’s been a long while since my last post to FEC-THis. Summer has come and gone, Halloween and Guy Fawkes too.¬† My country remains¬†perplexed¬†by the decision of the majority of its people to say goodbye to the EU.¬†The same confusion now looks set to grip the US. The catalyst may¬†be different but the root cause¬†seems¬†similar and all the while, pestilence, war,¬†famine and death¬†continue to spread their wares¬†throughout¬†the globe. Tomorrow is Remembrance Sunday, a day when we remember those who have sacrificed themselves to secure and protect our freedom. Over the years many millions have sacrificed yet our freedom remains fragile and we continue to¬†live in¬†troubled times.

It’s good to remember but sometimes it’s good to forget.¬† Or at least try.

So much has happened since I last wrote here, some of it good, some of it not so good. Pre-cancer levels of health and wellness continue to elude me. Simple things like opening jars or bottle tops are more challenging than they might otherwise have been.  Running, climbing (stairs, steep paths, hills) and dancing are all possible in my head but  unimaginably taxing in reality. Reading, reasoning, analysis and deduction take effort when not so long ago they were entirely effortless.

Life is full of compromises and treating cancer to secure more days on Earth has, at least for me, meant sacrificing many things that came easily before.

Being sad or mad about all of this seems the most natural course of action but those emotions take a lot of energy and no amount of rage or sorrow has ever been able to change the past.  Like the deciduous trees shaking off leaves in readiness for winter, weaving rich carpets of amber, bronze and gold, the last few months have been a time of  reintegration. Time to be in the moment, no past and no future, no wraiths from yesterday or castles in the air of some mythical tomorrow. The trauma that was, the scars that are and whatever might light the way or lurk in darkness along the road ahead, none of it matters. It is what it is, no more and no less.

I began this journey because I needed to save my life, but¬†I wasn’t saving it for me.¬†Putting food on the table and a fire in the hearth for those who depend on me¬†has¬†always¬†been the driver. Four years on, I finally realise my¬†overwhelming sense of duty and responsibility¬†for¬†others is nothing short of¬†a¬†Herculean task –¬†one that my¬†tango¬†with cancer leaves me ill-equipped to complete. So¬†I’ve decided Herculean is not for me, whether that’s capturing¬†the Cretan Bull, bringing back the Mares of Diomedes or simply being the person everyone expects to¬†make everything alright. ¬†In an earlier life this¬†decision would’ve left¬†me riddled with guilt, and plagued with¬†thoughts of failure and defeat. Today it brings a gentle air¬†of comfort, long-awaited tranquility and reprieve.

This weekend I’m remembering all those who sacrificed for my freedom and how¬†very grateful to them I’ll always be. In a small and quiet way¬†I’m also remembering myself.

 

 

 

 

A slog more than fight

Until my mid-teens ‘fight’ meant one of three things:

  1. Squabbles between siblings – verbal, physical, but more often than not both.
  2. Altercations between kids at school, rival gangs, or the heavily inebriated having the kind of night they’d completely forget by morning.
  3. Boxing – where men knocked the stuffing out of each other for money in the name of sport. Female boxers were strongly discouraged at the time.

Since then ‘fight’ has taken on some extra meanings:

4. The role the armed forces conduct and lay down their lives for when politicians, fanatics, dictators or megalomaniacs fail to address their differences peacefully and revert to Neanderthal tactics. Clubbing one’s rivals is a proven solution tried and tested over many millennia.

5. The thing people with life-threatening or terminal illnesses are supposed to do, especially people diagnosed with cancer.

As a simple soul I’m ill equipped to explain why a proportion of humanity continue to pursue theological, political and ideological power-games that lead to more serious and deadly forms of the altercations witnessed in my childhood and teens. It must be something only despots truly understand.

I know a little more about the expectation to fight cancer than I’d ideally like and unfortunately its the kind of knowledge that once incorporated is impossible to forget.¬†The language of cancer is frequently the language of war. People fight cancer, battle with cancer or wage a war on cancer because they are fighters, warriors, or even assassins. On some occasions ¬†people win their cancer fight, but rarely is that completely guaranteed. On other occasions we’re told they battled bravely and courageously but sadly passed away. In real terms cancer is a win:lose scenario but whatever the situation, the language of cancer is full to the brim with fighting talk.

Perhaps societally we find it easier to deal with cancer if we say it’s something people fight. Fights can be won so when someone fights cancer there’s a chance they might win. This in turn can help make it a less frightening prospect for everyone else. School sports events conditioned us from an early age to know the winning team is always where it’s at so we rarely hear talk of people giving up, refusing the fight or waving the white flag of surrender. Giving up just isn’t the done thing, we must stay strong and keep fighting. There’s no glory in coming second, we have to win! ¬†When people die (and lots of us will die from cancer) we hear talk of remaining courageous to the end. Perhaps this too is a means to make the truth easier to bear because someone else just lost their life to a disease we barely understand and still cannot prevent or cure.

I don’t like violence and never fully understood how anyone could fight with themselves so the language of cancer has never proven particularly helpful for me. Like it or not cancer is a bunch of our own cells that proliferate forever – cells that somehow manage to step outside the normal circle of life. Cancer¬†is me, albeit an aberrant version. We are all different and for some people fighting analogies might be hugely helpful. For me the whole cancer thing is more of a slog.

Slog:

  1. to work hard over a long period especially doing work that is difficult or boring.
  2. to travel or move with difficulty, for example through wet, sticky soil or snow, or when you are very tired.

Dealing with cancer has taken considerable effort from me and my medical team. From diagnosis to current day I’ve been fortunate to receive nine separate surgical procedures designed to eradicate cancer, deal with the unwanted after effects of previous surgeries and do as much as possible to prevent any return of a disease with a high propensity to spring up elsewhere. In parallel chemo and monoclonal antibody therapies took place over a period of 10 months, again with the aim of preventing reoccurrence so that I might go on living my life in the quiet, peaceful way I’ve come to enjoy.

My cancer journey to date has taken four years, almost 15% of my adult life. In real terms this is very little – for some people including my own mother, aunt and grandmother it took much more.¬†¬†I will always be grateful for every extra second gained through the expertise and determination of my medical team because without them my chances were slim to non-existent. Together we have now done everything possible to help me remain cancer free. Only time will tell if it’s been enough.

I haven’t¬†been fighting for four years, I haven’t been brave or courageous and I don’t feel like a warrior. I faced a situation with few options, underwent gruelling treatment with unintended consequences and continue to rebuild my life, including everyday things like walking and working memory. I’ve been unrelenting for four years, enduring and tenacious, and I often feel tired and decrepit. I keep pushing myself hard because I want to do the things I could pre-cancer. Sitting here waiting or wishing for their return isn’t going to work.

In the time it’s taken to walk this cancer journey so far I could have walked around the Earth twice. Don’t get me wrong, I am glad to be here and largely in one piece but that’s not enough because I’m not old enough to be decrepit. When I can once again walk more than a few hundred yards without days of painful repercussions, when I can go up stairs without grasping the handrail for fear my knees will give way and when I can read a book when tired and not have to re-read it next day I’ll be completely overjoyed.

For me this cancer journey continues even though the cancer itself appears to be gone. It’s much more a slog than a fight.

Credit: CRUK

 

 

The daily prompt – Fight.

Seven words on cancer

Family:

They say blood is thicker than water and it’s easy to see why. My family trudge every step of this path with me no matter how challenging. My Dad remains a rock despite the fact that he’s encountered the journey far too many times before and¬†with no¬†happy ending. My Mum would’ve done likewise if cancer hadn’t robbed her of her life at such an early age. M, J and S remain positive, future-focused and encouraging. They all believe I’ll still be here in 30 years and that’s a¬†wonderful vision to hold on to.

Medics:

These people are amazing. The surgeons, oncologists, sonographers, anaesthetists and nurses are skillful, compassionate and dedicated.¬†Behind the scenes there’s¬†a whole community including¬† histopathologists, biomedical scientists, pharmacists and nutritionists¬†to name but a few.¬† They’re¬†the driving force behind cancer care and cancer research.¬†Many of us would not be here without them.

Invincible: 

We like to think we are and then we find we’re not. Deep down I’ve always been acutely aware of the fragility and vulnerability of all life on our beautiful blue planet, including my own. I spent 35 years attempting to ignore this¬†until cancer provided an uninvited reality-check. So now I know I’m not invincible but¬†I also know I’m more robust – physically, mentally and spiritually – than¬†imagined.

Friends: 

Whatever the weather¬†some friends will weather the ¬†storm with you. They’ll offer to do things for you (or do things anyway because they know you’re too proud to ask), they’ll help put you back together when you’re in pieces and remind you of all the reasons you need to hold on. Other friends will abandon ship. The wife of a friend explained this to me when I was first diagnosed and I thought her judgement somewhat harsh at the time. We stand by our friends when they’re sick or dying don’t we? I owe her an apology and at the same time I give thanks to the all-weather friends who opted to stay with me.

Health:

Must never be taken for granted. Fit and in the prime of life one day, nose-to-nose with death the next, the turnaround is quite a shock. When the shock subsides a subtle awareness of the uphill journey from illness to wellness begins to dawn and the distance¬†seems so vast. It’s also full of boulders and sinkholes. ¬†I never loved my body but I didn’t hate it, even though it was pre-destined to let me down. As a receptacle for my soul it continues to serve it’s purpose and I’m grateful for that. But it doesn’t feel like me anymore and for however long I’m here, I’ll never be able to trust it again.

Time:

Does not last an eternity. It¬†passes in the blink of an eye and once its gone it can’t be revisited.¬† Time is too precious to waste so life-changing events¬†shouldn’t be the catalyst for¬†this vital life-lesson.¬†If the¬†art of valuing time was taught in high school, ¬†future adults¬†might stop¬†deluding themselves that they¬†have all the time¬†in the world, plenty of years ahead¬†and¬†are guaranteed to¬†reach a ripe old age.¬†Write¬†all the¬†time related clich√©s you know on a piece of paper and¬†safely set¬†fire to it. See how quickly it burns?

Death:

We all die. From the day we’re born it’s a one-way ticket and a completely natural part of the circle of life. Developing cancer makes death impossible to overlook and also brings the very real possibility that it will arrive much sooner than anticipated. There’s no getting away from this, no amount of worrying or soul-searching can change the shape of things to come. All I could do was find a way to live with it and in doing so savour¬†every second¬†of every minute¬†of¬†life in this very moment.

wordcloud

Work, Worth & the winding road to Wellness

Alongside fear, uncertainty and the possibility of a life curtailed cancer brings many other undesirable consequences. These issues receive little media attention and this lack of publicity coupled with poor employer, government and public awareness means the implications for individuals, families and the economy at large remain hidden from view.

I know most about breast cancer so will highlight the issues through a lens I am all too familiar with. In almost all cases people diagnosed with breast cancer will require some form of surgery and surgery inevitably requires time in hospital as well as time to recover. For many cancer patients it is not a stand alone event. Even without complications people with breast cancer may find themselves facing multiple surgeries over a period of years in order to ensure the physical aspects of the disease and its aftermath are fully taken care of. As well as surgery, many patients also require additional treatments such as radiotherapy, chemotherapy, hormone or immunotherapy. These treatments can take months or years and frequently come with side effects, some of which may be permanent. Like surgery, these treatments often require regular trips to hospital for their administration or follow-up which inevitably requires some time away from work.

Cancer is an expensive business because treatments and the time taken to administer them are both are expensive. But this is only part of the story. More of us are developing cancer, more of us are developing it at a younger age and worryingly, that trend looks set to continue. Economic pressures and fragilities make it very unlikely our countries can afford the significant costs involved in providing disability benefit for hundreds of thousands of working age cancer patients who suddenly find themselves out of work. Yet despite legislation, e.g. the Equality Act in the UK or the US ADA, many working age cancer patients still find themselves facing discrimination, exclusion from the workplace and enforced redundancy. There are many good employers in the world but there are also far too many who remain ill-informed and retain outdated policies that fail to adapt to the changing face – and health – of the workforce.

This lack of awareness and inflexibility is short-sighted because it places enormous strain on the economy let alone the hardship it inflicts for individuals and their families. Research highlights that cancer survivors work at least as hard as their colleagues and take less time off for trivial illnesses when compared to other employees. In competitive employment markets where demand for skilled workers is high, finding ways to retain the services of cancer patients is therefore good for business, good for the individual and good for the economy as a whole. Although some cancer charities have attempted to provide relevant employer education and awareness, a straw poll of friends with cancer suggests there is still much to do on this front. It’s time governments and mainstream media joined forces on this issue because most cancer patients don’t want to be consigned to the dole queue or long term disability payments. It is more than an issue of income or economy, it’s also an important factor in an individual’s perception of their personal contribution and self-worth.

In many societies the way we perceive ourselves, our confidence, standing, personal and social usefulness is now intrinsically linked with our work. Our jobs, particularly when we’ve trained for them for many years or worked hard to achieve particular goals, have become part of who we are. We measure our worth not only in terms of the salary we earn but the contribution we make as employees. Cancer patients who are forced to give up work often suffer a huge sense of grief and a damaging loss of self-worth at a time when stability and security are of paramount importance. It is not the case that early stage cancer patients need less demanding jobs because they won’t be able to “keep the pace” after treatment. It is not the case that all stage 4 patients are too unwell to work, or will prefer to “spend their remaining time doing other things.”

The number of patients dealing with depression, PTSD or social anxiety as a result of enforced loss of work is significant and likely to increase as the number of working age cancer patients increases. Once again this presents a drain on local and national resources that extends well beyond the realms of individual suffering so it’s time governments and mainstream media joined forces on this issue too. Unemployment creates all kinds of social, economic and psychological problems so keeping people in work has to be a primary aim. With more lateral thinking, more flexible employer attitudes and the application of some everyday common sense, keeping people in work is rarely impossible in an age where we can connect from anywhere, converse from anywhere and complete most computer-enabled processes from anywhere. Even in more manual jobs it’s possible there are tasks employees can usefully and successfully complete with some creative thought about job design and desired outputs. We need to reach a point where pushing people out of their jobs because they have cancer is a decision of last resort.

Awareness of cancer as a critical and chronic disease has increased quite significantly in recent times but awareness of its wider implications – for individuals, families, employers, society and the economy as a whole – remains shrouded in mystery, myths and misinformation. We all have a role to play in unveiling and addressing these important issues because they aren’t going away. Without action and in a world where cancer is increasingly affecting younger people of working age these issues willcontinue to affect our children and our children’s ¬†children if we fail to act.

 

Stocking confessions

For anyone who thinks stockings are a throwback to the 40’s and the post-war frenzy of the nylon riots, fear not. Stockings are alive and well and making a huge comeback in my household and the homes of countless other women across the globe. These stockings are immensely functional, have a hint of sheen, an open toe and a block heel. They also have a small seam. They’re manufactured by a German company but I don’t think it’s Falke, which is a shame because Falke make good stockings. Falke or fake,¬†I’ve been persuaded to wear these very special stockings for at least the next two weeks because I’m reliably told they are a lingerie lifesaver, for me and others like me.

Of course no stocking is ever perfect and often we have to contend with bad length, limited silkiness, wonky seams and the like. Length and texture are certainly a bit challenging though it’s fair to say I’m tall. A further downside is that they only come in white and the denier rating is a bit on the high side, easily twenty-times greater than the best pair of 5 deniers I ever owned. (Back in the days when stockings were at least as important as non-chip nail polish, 4 inch heels and a big can of Elnet.) However as I’ve already indicated they’re extraordinarily functional, extremely unlikely to ladder or run, afford excellent durability – they’ll survive at least 100 washes in the automatic machine but more likely 10,000 – they’re warm, and of course their unique selling point is the all important lingerie lifesaver label. Who could possibly resist?

I have a love-hate relationship with these stockings. They represent all that’s been difficult in my life yet they also represent hope, the chance of a future. They’ve kept me out of trouble on at least 5 separate occasions including today and will do so for another coming up in the not so distant future. It appears they’re very well designed to prevent unwanted pregnancies, ward off perverts (bet you didn’t think stockings could do that) and double-up as flight socks for anyone planning to jet across the planet or sign-up for Virgin Galatic. I suspect there’s every possibility of remaining a virgin for centuries in these beauties but its also reassuring to know I’m very unlikely to suffer a DVT (deep vein thrombosis) following ¬†my trip to theatre today.

No, I didn’t see Miss Saigon but I did meet three very nice male anaesthetists, a lovely lady theatre nurse, a fabulous and stunning staff nurse and of course my all time favourite Miss M. ¬†I didn’t have to wait around as I was first on the list for surgery which is good for all sorts of reasons and I think (hope) I’m now at the end of all cancer-related surgeries, revisions and repairs. Das ist alles as they say in Falke.

As with the stockings, rarely is anything completely perfect and though I warned of the heinous condition of my left side veins the consultant anaesthetist suggested the junior anaesthetist should “go for the one looking sort of ok-ish below the left index finger.” So he did, it didn’t work, I felt incredibly sorry for him – its my fault not his, and consultant anaesthetist then had to prod my right hand which was equally touch and go for a while. We got there in the end and consultant anaesthetist apologised to his junior and to me saying “I’m sorry, we should have listened as you do know your veins well.” Far too well for my liking, an intimate knowledge in fact, and so accurate that I pity anyone who has anything to do with them. Another reason on the long list of reasons why I’m very glad das ist alles on the cancer-related surgery front. (Gall bladder next and that really should be it, all done, cyborg here I come!)

After morphine and Fentanyl for the operation itself, a combination that makes me wonder why anyone would become an addict because the effects are so way out they are completely bewildering, not enjoyable, I’ve resisted any further pain killers and feel much better for it. After swimming in drugs through much of 12/13 I now steer clear as far as possible. This post-op discomfort is well within the realms of manageable, a reflection I think on the skills of the surgery team. I’m told healing is 3-6 weeks, nothing at all strenuous for 6, no driving or work for 3. That’s a real challenge because my job needs a lot of attention, the university is extremely busy, we have students to recruit, systems to develop, projects to deliver and as ever, IT problems to resolve. ¬†Aside from all that, 3 weeks of daytime TV is almost certainly bad for my health (and sanity) and my favourite recuperation past-time – growing things to eat – ¬†is off limits. No digging, hoeing, mowing or sowing.

So while I contemplate what to do while doing very little and avoiding as much daytime TV as possible I leave you with a photo of my souvenirs from today – port and starboard – complete with coloured gauze and post-surgery puffiness.

I couldn’t post¬†the stockings, they’re far too risqu√©!