Five things about Autoimmune conditions and me

I’m not an expert in this field but I’m trying to understand it as best I can. In much the same way that I set about researching information on my particular form of cancer, I’m now researching and learning about autoimmune conditions. I have them and they run in multiple generations of my family. Since none of my affected relatives are here to tell me about their experiences, I’m trying to piece it together myself. It’s a bit like looking for a needle in a haystack but so far I’ve discovered five things:

1. How many people are affected?

It’s difficult to find accurate figures on the number of people with autoimmune conditions. Estimates vary considerably. The American Autoimmune Related Diseases Association suggests 50 million Americans – more than twice as many as the National Institutes of Health suggest. That’s a significant difference. Most sources seem to agree women are more likely to be affected than men – that holds true within my own family. Overall, the prevalence of autoimmune conditions seems to be rising. As yet no-one really knows why.

2. How many autoimmune conditions are there and how are they diagnosed?

There are many autoimmune conditions – at least 80 to 100 and despite research, they can be difficult to diagnose. For some people diagnosis is made by accident when assessing a seemingly more obvious illness. That happened to me. For others, diagnosis becomes a process of elimination – which means undergoing many different tests to rule out common or more obvious causes until such time as a less likely cause is deemed the culprit. As a patient, this can feel frustrating and traumatic in equal measure, especially when the outcome always seems to involve more tests. This happened to me too. Fortunately my GP is not in the habit of passing things off as a virus or post-viral fatigue.

3. Does it run in the family or are the conditions linked?

With my scientific hat on, it looks likely certain autoimmune conditions are linked. Having one in the family might mean other members of the family can have the same or similar conditions. Having one condition myself might generate a greater likelihood of having another… Or not… because autoimmunity seems to be another a very complex area of medicine and quite poorly understood unless you specialise in this field. My level of science doesn’t extend to anywhere near the expertise required to get to grips with all of this. Even if it did, our propensity for focusing on specific diseases or groups of symptoms makes it possible to miss subtle links – hence the turbulent experience of diagnosis via a process of elimination.

4. Is it worrying?

None of us wants to be or feel unwell. Having unexplained and debilitating symptoms is worrying. Having test after test without any clear answers becomes far more worrying, even for those of us who’ve been through countless tests, treatments and operations before. Without solid answers, the hamster wheel of tests can eventually lead to self-doubt, questioning your sanity or convincing yourself you’re imagining it all. I only escaped this downward spiral because a very dear friend with CFS had similar experiences. She isn’t insane and hadn’t imagined her chronic and very debilitating illness, but for years an array of professionals told her there was nothing wrong, even when she could barely stand or stay awake.

5. Has it changed things?

It’s said with age comes wisdom and I’d like to live long enough to be wise. Surviving a very aggressive cancer didn’t grant me wisdom but I do think quite differently about life. My health dipped suddenly a few weeks ago and a plethora of tests ensued. It’s autoimmune, not more cancer. In my world almost anything is better than more cancer, even if it isn’t great. Pre-cancer I’d have ignored this latest health thing in favour of work. Now I have a more considered approach. Of all the rogue genes in my gene pool, ‘nine-lives-of-a-cat gene’ isn’t going to be one of them. I’ve spent enough time in hospitals to absorb the fact life is fragile. So I’m giving up the career I’ve worked my socks off for over the last 20 years because simply being here for my loved ones for as long as possible is more important to me than anything else. My work has been a buzz and somewhat addictive; stretching, fun, full-on and frustrating, usually in that order. I’ll miss that I’m sure. But in 2019 and for the first time ever I get to take a proper break, take proper care of myself, and get on with the business of living instead of simply existing.

If life zooms by like a bullet train, people along the route become a faceless blur. Why have a family album full of blurs when pausing for a while is all it takes to stay in focus, and experience the detail in full HD…?

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Close the door, keep walking

Close the door, keep walking

Wherever you are, whatever your situation, I wish all readers much happiness, love and wellness for everyday of 2018, these are life’s greatest riches and I hope you find them in abundance.

2017 was a difficult year for us. Although there were some high points, there were also terrors. The kind that bring sleepless nights and frantic days. We learn from all experiences, the good and the bad, but last night we pushed the door firmly closed on 2017.

The wonders and possibilities of 2018 are most welcome because the last 365 days have been a long, hard slog. Though the desire to wipe away the past is strong there are tributes to pay and deep gratitude to note before moving on:

  • For the medics who helped J survive meningitis and J’s will to recover from a very traumatic experience
  • For my father who continues to help others and spares little thought for himself
  • For our journey to the furthest reaches of Norway and our once in a lifetime experience of the Mirrie Dancers
  • For friends and family across the globe, and loved ones lost but never forgotten
  • For food, clean water, warmth and shelter – all so easily taken for granted yet still beyond reach for far too many
  • For life, however long it lasts, because every day is a day further from cancer. This year will be my sixth post-diagnosis.

This new year has barely started but it comes complete with some significant milestones for us, big events that will shape the future in ways we can’t fully imagine as yet. It also comes with lots of blank canvas, new days ready to receive whatever memories we chose to paint there. We are a family of three, and all three of us have brushed with death at an age that is far from being “old.” So as we continue this journey we remain optimistic about the possibilities that lie ahead. There is much to explore and too little time to grumble along the way. We know now that wherever the path takes us, we’ll make the most of it and keep walking on. It is, in every sense, a happy new year.

Hopes for the New Year

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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.

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 clichés 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.

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Time to smell the flowers

I saw a dear friend for lunch recently. We’ve known each other for approaching twenty years – almost half of my life and almost a third of his.  We first met at work, at the beginning of the dotcom boom when internet technologies and the World Wide Web were becoming commercially interesting. We have many shared experiences from our time spent working together: the excitement of launching a new business, the mental challenge of creating something innovative yet industrially and technically unproven, deep camaraderie from working ridiculously hard to meet seemingly impossible deadlines because the launch date had been announced, a core of shared values, ethics and humour.

Its ten years since we last worked together but meeting up is as enjoyable as working together and it doesn’t bring the constant need to deliver projects, manage incidents or sort out security issues. We’d both be rich if we had a £ for every one of those scenarios we’ve managed. Now we get to talk about IT things instead of doing them while grabbing (or missing) lunch. Now we get to talk about holidays, health, children and grandchildren as well as news of friends and family. There is, I suspect, more balance in our lives today than when we worked in a frenetic start-up.

Neither of us is a person who does things by halves and neither of us will go to our graves having lived only a sedate half-life. My friend is at a point where work gets in the way of all the things he wants to do outside work. He’ll retire soon but in no way will he be retired. At some stage I hope to join him in that active, days full of adventure kind of retirement.  There have been points in both our lives where life was edged out because our careers required significant energy and we aren’t the kind of people who shirk. Do all things well or die trying could be our motto.

To be in the present and live every day as if it were my last means achieving a healthier balance. I learned the hard way. We all need time to smell the flowers, to do more than simply plant them in a rush, throw on some water and hope they grow. Over lunch we talked about my recent surgery, the benefits and consequences and that I’ve now done all I can to limit the risk of another run-in with cancer. My friend said it must feel good to have this final surgery behind me, to be able to get on with life. It does. Not that cancer was going to call a halt to everything but it certainly got in the way for a while. No-one wants to dwell on it but once you’ve been down this road you can never be certain you and the big C are through. Taking time to smell the flowers, to savour their beauty and delicious scent, holds far more importance than one might otherwise think.

Hunter S. Thompson once said “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out and loudly proclaiming Wow! What a Ride!”  I have no way to arrive at my grave pretty and well-preserved (cancer took care of that) and in any case skidding in broadside and totally wrecked sounds much more fun.

I guess I’ll never stop planting the flowers but these days I take a moment to smell them too 🙂

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.

Crossing the Bridge

There comes a point when the only option is to cross the bridge. No matter how rickety or poorly constructed it may seem and irrespective of the pace or iciness of the waters below, the only road to the rest of your life involves crossing the bridge. Time is on a route march and it doesn’t care much for sorrow, sentiment or sickness; it spares no thought for the down-hearted, despondent or disillusioned. Time goes on and like it or not, so must we.

Old packhorse bridge (c.1717), Carrbrig, Scotland

Old packhorse bridge (c.1717), Carrbrig, Scotland

In clinging to the past we slip out of time. Slowly but surely life passes us by yet we fail to realise  until sometime later, when we perhaps begin wondering where the days, months or years went and how and why we didn’t notice them. Offloading all that baggage and leaving it by the river’s edge isn’t easy. Disentangling the past and setting it down in its rightful place takes thoughtful deliberation, acceptance of what was and complete renunciation of what might, could or should have been. How many times have you heard yourself (and others) talk about the way things should or shouldn’t be? The truth is, there is only what was, what is and that which is yet to come – should, could and might are all irrelevant and leave us stuck in a rut.

To get out of the rut we have to cross the bridge and the only way to do so safely is by travelling unladen. We can’t live for today until  we forgo being cemented in the past.   Fortunately once we build sufficient fortitude to put one foot in front the other, take our chances and walk across the bridge, everything changes. We flow in time. Life is lived in the here and now, in this very moment. Living is very different because here and now is full of sound, colour, wonder and a smorgasbord of new choices; it’s the polar opposite of everything in the world of ‘back then.’  I don’t recall being taught how to manage the past, to leave it in it’s rightful place by the edge of the river and continue with my journey in time. Its a skill that could useful be taught to high school seniors because all too often I am surrounded by folks who are completely trapped in time, rooted by events that happened years or even decades ago. I always try to help, to share coping strategies or suggest appropriate sources of professional help because being empathic isn’t the same as being a psychologist. Empathy exists because I’ve had many of my own bridges to cross and I stopped to take note of each lesson along the way.

I don’t deny crossing life’s bridges unencumbered by the debris and detritus of countless events that cannot be changed is sometimes difficult, even when practiced continually on a regular basis. Sometimes it’s a daunting prospect, but that doesn’t make it impossible.  This year, especially today, I realise I’ve crossed and walked some way from another bridge – one I hesitated to traverse for a multitude of reasons.   It’s the bridge from active cancer patient to healthy human being, from constant companion to casual acquaintance, from broken to steadfast.  I can’t pinpoint exactly when the bridge was crossed, when the heavy baggage of cancer and so many shattered promises got dropped at the side of the riverbank. I don’t know when the waters rose up to wash it all away, I just know that its gone. It seems this happened slowly, almost subconsciously, throughout the course of the year and for the first time in two years there’s room in my head to properly relish each day as it comes. The time of fretting about what tomorrow might hold (all firmly rooted in an army of negative experiences from the past) is gone and this, I think, is what it means to be free.

We all have demons in the closet, painful events, disappointments, scars and injuries, but we don’t have to be ruled by them. We can chose to lock the door behind them and walk away or drop them at the edge of the river, cross the bridge and let the waters wash them far out to sea. For however long I have here I’ll take the opportunity to drop life’s baggage at the banks of each river and skip across the bridge to whatever happens next. Today, cancer, (and all the ills you wrought upon me), I am over you. Guess what, it feels good :-).