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 🙂

 

Advertisements

Days to Remember

Time has been rushing by of late and at home things have been extraordinarily busy. Over the last few months we’ve been through the stresses of revision and final exams, reflected on my son’s three years at university which seem to have passed by in the blink of an eye, received the results and classification is his degree and started planning his next steps. We’ve reviewed job adverts, prepared him for interviews and celebrated two very good offers which take him closer to his ultimate goal – four years further study (graduate entry medicine) in order to become a doctor.

I’m so very proud of J and what he’s achieved. University is supposed to be an enjoyable experience, a time when we’re unencumbered by thoughts of death and hardship. Unfortunately his university journey was marred from start to finish by more crises and calamities than some folks experience in 50 years.

At the start of 2012 it was uncertain whether I’d be here now because the extent of my malaise was yet to be determined. Our lives turned upside down in that instant and for J, a deep pervasive depression began to take hold. Every day was difficult. Some were just plain awful. Those events, the days, weeks and months of trauma, we choose to leave behind. I know that eventually they’ll gather so much dust that they’re obscured from thought, displaced by altogether happier and healthier periods of our lives.

After so much chaos and consternation things are finally looking better. Health, for both of us, is heading in the right direction and luck (if that’s what it is) has decided to make a long overdue appearance. We have some very special days to remember, free from the shadow of cancer and depression, free from people who’ve been unsupportive (and mean) and free from physical and emotional purgatory. In the last two months there have been some very, very good days. It feels as if we’re living a different life and in many ways we are. For that I am more thankful than words will convey.

Yesterday presented a particularly good and special day to remember bringing with it a new wave of optimism and positivity to hold in our hearts. After three years of effort and J’s tremendous determination in the face of much adversity, we celebrated his degree during a wonderful ceremony at Bristol Cathedral. His formal graduation could not have been more well-deserved, it’s a day that will stay with us for the rest of our lives forever bringing an overwhelming sense of happiness, pride and achievement. To have any prospect of entering medical school J had to achieve at least an upper second class honours degree in Biomedical Science and that’s exactly what he did. Well done J 🙂

These are the days to remember. They remind us that with love, tenacity and enduring faith we can achieve much more than our circumstances appear to support.

IMG_0776.JPG

What it’s really all about…

IMG_0583.JPG

I had a birthday recently. There was nothing special about it in terms of the number of candles that might adorn a cake and I didn’t do anything special except enjoy the day, but the fact that it happened was significant. The fact that as far as I can tell I’m healthy and free of cancer is definitely something to celebrate.

Just over two years ago there were no guarantees I’d see another birthday because every investigation seemed to turn up something more worrying than the last. Of course there are never any guarantees, we simply assume the years will keep rolling in and nothing terrible will happen. Then something terrible happens and with luck we wake up and realise how important every moment really is. Even the ones that seem less than awe inspiring, like a trip to the supermarket or being stuck in a traffic jam. When you think your moments may be limited you find ways to make the most of them, including traffic jams!

There have been many special moments so far this year and my birthday brought some more because my son decided that, like the queen, I should be granted a second birthday with a second card, presents and flowers. In an unexpected way it helped erase some of the difficulties of the blighted birthdays, the ones spent in hospital or recovering from surgery. During those birthdays my thoughts were centred on endurance, making my way through whatever had to be endured so that I would see him through his education and hopefully some years beyond.

There are still no guarantees, from here on there never can be but then again, there never were. What matters is that I’m here, I’m happy and I have more time to make life special for those around me. It feels a little safer to make plans, to think about what we might do to celebrate my son’s next birthday in 10 months time. That feeling is a bonus, a subtle, positive change for the better after time placed on hold, living in limbo. Cancer took away so much but it also brought new insights. I no longer let time slip through my fingers, I use it to make memories with those I hold dear. That, for me, is what life is really all about.

IMG_0582.JPG

Something to Remember

There’s a saying that “It’s the moments, not the milestones, that matter.”

21 is a significant milestone and I think it’s still worthy of a whole bouquet of memorable moments, even if it’s no longer the age of coming of age. So when we set off for our trip to London me and my son had simple aims – generate many enjoyable and memorable moments, celebrate his 21st birthday before, during and after the day itself, and create something special we’d remember for the rest of our lives.

I said in my previous post that regaining the time stolen away from us by cancer, depression and a bunch of other adverse events over the last few years was impossible. In terms of linear time, the kind measured in seconds and hours, that’s true. We cannot go back and rewrite the past.  Non-linear time is a different story because it’s measured in friendship, conversations, smiles, laughter and small kindnesses. Those things evade the confines of seconds and hours, they’re unbounded and run through our lives like invisible seams of gold. Humanity’s obsession with longevity measured by defined units of time can lead us to forget that our dearest memories are woven from the gossamer strands of innumerable moments, each of which is infinite and everlasting.

This week the moments meant we both forgot the stresses and strains of the past, the things we couldn’t do, can’t change, gave up or had to cancel. We forgot death came calling, ignored the various absurdities of our lives and created a sparkling sea of moments unfettered by time, tasks or the uninvited terrors of sentience. We rode the tube, walked the embankment, wandered around Soho and dined in China Town. We went to a couple of bars, ate birthday cake, people-watched and admired the landmarks. We received an unexpected upgrade on our theatre tickets so had the best seats on J’s 21st birthday… Thanks Palace Theatre 🙂 We talked about previous birthdays, growing up, options to make this an annual mini-holiday just for the two of us,  the places we’d like to visit and things we’d like to do.

We set off for London with a few simple aims – celebrate, enjoy, make memories and we did that. Our mission was fully accomplished in one tiny, profound moment as we walked back to our hotel along the Charing Cross Road.  “You know Mom” he said, “I’m enjoying our time so much I don’t want it to end. I wish this could last forever…”  We smiled at each other both knowing that it will.

Coming of Age

It’s my son’s twenty-first birthday next week and I can hardly believe the years have passed so swiftly. He arrived exactly on his due date and has quietly filled my heart with joy ever since. It’s natural for a mother to feel proud of her son but I’m especially proud of him because his life to date has been far from straightforward and the last few years have been particularly tough for us both.  Years that should’ve been fun and carefree for him were marred by my cancer treatment. He was then diagnosed with anxiety and depression but we both know it had been wrapping its arms around him for several years. I suspect my illness played a significant role in tipping that delicate balance and the thought rests heavy on my soul.

Slowly but surely we are both reconfiguring our lives, learning to live with heartache, uncertainty and confusion safe in the knowledge that whatever happens we’ll find a way through. We know we can’t make up for the carefree years that were stolen away so instead we’re aiming to make 21 extra special, starting from today.

A week of celebrations begins with cake, candles and presents in advance of his actual birthday. It’s the first year that he’s been able to open anything early and we decided to bring this part of the festivities forward because he and I are going away for a few days next week. Carrying everything to London and back would be logistically difficult. Although 21 isn’t technically the year of coming of age (voting and alcohol are both legal from 18) it’s still an important milestone.

When he was 18 I put together an A – Z photo album of words and pictures representing who he is and what he loves.  There were other presents that year but the photo album is the one he treasures most. This year I’ve been busy researching all the events of 1993 as well as occurrences that took place on the day of his birthday over the course of the last 21 years.  This task has been made much easier through the wonders of the interweb! Having found a host of 1993 events plus a notable occurrence on each of his birthday’s from 1993 to 2013, I’ve turned them into illustrations – cartoons with a snippet of information about the event – to make a unique present he can look back on in years to come.  There are other presents too but I’m hoping this one will join the photo album among his favourites.

Our trip to London is the first time we’ve been away together for far too long. He loves the hustle and bustle, travelling by tube, street performers in Covent Garden, the glazed ducks and bright orange squid hanging in the windows of China Town’s restaurants, the smell (and taste) of all that Chinese food. He also loves the theatre so this visit includes a couple of surprise West End shows which are sure to be a lot of fun. Both productions will have us singing like song larks for the rest of the week so by the time next weekend arrives we’ll be hoarse, in serious danger of annoying anyone in earshot, or both!

I’m glad we’ve been able to secure this time together, that nothing else has impinged on it, that we are both in reasonably good health and can go away for a few days to create some new, happier memories for his coming of age.

(These pictures were taken last weekend. He played for over 5 hours in a charity football tournament with all the proceeds going to St. Peter’s Hospice and raised over £1000. Another good reason for me to be proud of him 🙂 ).

More Yang, Less Yin

The yin (shade, darkness) and the yang (light, sunshine) are opposite and interdependent, constantly changing, sometimes more one than the other and on occasion, one engulfed within the other.

20140419-130027.jpg

Mercurial, haphazard, in perpetual motion and full of contrasts: light and dark, day and night, happiness and sorrow. Our lives embody the yin-yang and for our part we must learn to adapt, knowing that bad times will eventually give way to good. As a reasonably optimistic person I live in hope that any periods of yin in my life will eventually give way to yang and on the whole that’s what happens. Living with someone who is suffering from fairly severe depression calls the whole yin-yang into question though and at present I’d appreciate a bit more yang and a lot less yin in my son’s life.

When someone develops cancer it’s immensely difficult for them and for their family and friends. As well as being a distressing sometimes frightening experience, family members often feel helpless because they believe they are unable to do anything that will change the situation for the better. Clinically this is likely to be the case but spiritually and emotionally it is not so. I know this all too well as I’ve been on both sides of the cancer fence, patient and family member. I now know the same sense of helplessness can be true when sharing your life with someone who is struggling with depression.

Watching a person you love withdraw from the world, continually question their worth and slip into thought patterns that hold no glimmer of hope or positivity is extremely challenging. Emotionally it’s very draining and this is especially so when you think you’ve turned a corner only to find yet another brick wall shrouded in darkness. That darkness is insidious and as a parent it chills my heart because I have no way of knowing how long it will continue or how much darker it might get before some daylight eventually creeps into my son’s most desperately unhappy episodes. Though he is making progress (we both thought the worst might be over) it seems minor incidents continue to throw him back into the void. Often that journey is highly traumatic and when he goes back to the darkest place we have to start again from the beginning, covering old ground and having the same conversations.

“Life is unfair,” “why do bad things happen to good people?” and “how come nasty people make other peoples lives a misery without consequences?” are regular features of our cyclical, circular communiques. It takes a significant amount of rational discussion and sound reasoning to help dissuade these views once they’ve taken root and I am not always successful. When I explain with clinical precision that fairness, bad things or nasty people are simply concepts and value judgements i.e. they are all made up, the message sometimes strikes a chord. Illustrating that life is a series of events to which we attach meaning, meanings are subjective and intangible thus fair/unfair, good/bad or nasty/nice can only ever exist in our personal view of the world occasionally comes across as off-beat or plain weird enough to provoke a degree of confusion and in doing so lets a sliver of light reach in.

I seem to serve as a constant reminder that a caterpillar sees only the end but for the butterfly life is just beginning. It takes patience, time and unwavering commitment when we’re having the same conversation for the two-hundredth time. I’m not a psychologist. I have no real idea how to help challenge the spectre of depression yet I feel compelled to do so. Something primordial whispers do whatever it takes, prevent it gaining so firm a hold that it might never let go… because deep in my own psyche lies the thought that it might not let go.

In those moments I think of the caterpillar. There is a period of complete chaos where it is nothing more than cell soup inside a paper-thin wrapper. During a few weeks metamorphosis it’s yin is transformed by the developing yang and then, almost miraculously, a butterfly breaks free. Life is once again in order and it has chosen a new and vibrant shape. No trace of the caterpillar’s doom remains to be seen.

This, I have to hope, is what lies ahead. In the meantime, patience and tenacity prevail.

Blue skies and new horizons

good good good

Life is filled with unexpected events, beginnings and ends, doldrums and dog days.

This summer solstice I’m able to celebrate that the doldrums have all but passed. Herceptin is almost concluded which means it’s just over a year since I discovered my body had become a serious biohazard. With luck all should be well now and I will soon return to the drug-free life I’m more familiar and altogether more comfortable with.

The densely populated dog-eat-dog hyper-drive that forms our capital city and the robotic (non)-life that streams relentlessly like human army ants on a perpetual march to who knows where is also behind me, at least for the foreseeable future.  For the first time in over twenty years dog days are here and the seeds of exciting new ventures have started to germinate.  This summer I’m not commuting, rushing from meeting to meeting or refereeing political sparring matches.  This summer I’m spending each day doing the things I want to do.

My Dad and I had lunch together last week. It’s the first time for a very long time that we’ve had the chance to do so.  Even when we lived in the same city the clockwork reality of work, work and more work stole the opportunity away from us. We have both been slaves to work for far too long because we come from a family where working hard and doing a good job is the only appropriate approach.  We both still believe in doing a good job and my Dad works exceptionally hard, but my decision to take a break is already creating possibilities that wouldn’t otherwise have existed. For me an afternoon spent with my Dad is more precious than any material possession.

Most days I get outside, work on the garden and tend to my flowers and vegetables. There are strawberries, embryonic tomatoes, courgettes and vigorous pea plants filling a space previously clogged with bindweed because in every other summer the scant periods when I wasn’t at work were rapidly consumed by a mountain of domestic activities – cleaning, cooking, ironing… and out of hours work. Now I have time to sit  under the cherry trees while adult goldfinches teach scruffy-looking fledglings to take sunflower seeds just a few feet away from me.  I have space to truly appreciate life’s wonders and miracles instead of winding my way through bureaucratic, often preposterous scenarios rife with petty politics and bereft of any commitment to achieve shared goals in service of the greater good.

Having time has given me chance to think about what I really want to do, how I’d like to contribute to society and where I want to make a difference. I’m coaching other people which is hugely rewarding; helping others achieve their dreams is one of the best ways I can think to spend my time.  I also dreamt that in future I’d work somewhere totally aligned with my beliefs and values, somewhere that makes a positive and lasting difference to people’s lives.  I sensed that I would find an environment where people strive to achieve, to continuously develop and grow irrespective of age, background, creed or colour. Now I know that once in a while such dreams come true; blue skies and new horizons beckon.

Before I take up my new job my summer will be filled with travel, friends and family.  Houses by the sea and nights so dark that the Milky Way will stretch out before me like a diamond encrusted pool of indigo-black ink. I don’t care if the days are bright or overcast; if its sunny I’ll be walking on harbour walls, stony cliff tops or sandy beaches.  If its raining I’ll be watching the waves through rain-spattered windows while drawing, painting or learning about the new technologies I’ll encounter and how my new team can harness them to create a world-class learning environment.

I’m all too aware that there are no promises in this realm, my life may still be shorter than the current average. It’s no big deal. I knew from the age of five that however long my life might be it would never be long enough to experience all the things I’d like to experience, learn all the things I’d like to learn or give all the things I’d like to give.  My new job offers the opportunity to give more, to use technology in a way that helps create future generations who are equipped to do great things, to make a positive contribution to society and the international community. For me that’s an amazing prospect – some of life’s unexpected events are changes for the better.

At the moment I’m happy to enjoy my summer days doing whatever I want when I want. I wrote about 2013 being a good year in spite of all the superstition and it looks like my prediction was correct 🙂