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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Reflections: seven years on

This time seven years ago I was readying myself for the first of numerous major surgeries following a grade 3 HER2+++ breast cancer diagnosis. Back then I wasn’t sure if I’d still be around now. Thankfully I am.

So how are things?

I can’t lie, the journey has been tough at times. I assumed, opportunistically, that after treatment I’d bounce back and be able to do all the things I was able to do before. The oncologist hinted as much, the oncoplastic consultant surgeon was more realistic.

I can do many things, not all, and it isn’t a simple case of the ageing process as I gently head towards 49. There are lots of frustrations, but in spite of everything I love life more than ever and feel enormously grateful to be here. In 2012 that wasn’t a given. As I approach the last few days of my 48th year it seems appropriate to pause for a moment and take stock, now the whole situation is less raw.

Would I take the same course of action again?

This is easy to answer because there wasn’t really a choice. Grade 3 and HER2+++ don’t make for a great combination. If anything I’d have liked shorter gaps between the initial suspicious findings and formal diagnosis, diagnosis and surgery, and surgery and adjuvant therapy. It was almost 7 months until adjuvant therapy commenced, outside the NICE guidelines. It felt like a long time, long enough for any distant cancer cells to take hold. I didn’t want that.

I wish I’d known more about the challenges of surgery and how long it would take to regain my upper body strength (I’m still not as strong as I used to be). I remain glad that I opted for the more radical surgery, because choosing a conservative option may well have seen me going through it all again about now.

What was the most worrying moment?

Although cancer runs in the maternal side of my family – it wiped out the vast majority of my female relatives – I quickly realised just how little I knew about it and how complex it is. As soon as I was diagnosed I wanted it out of my body. I didn’t realise how much biopsy-ing, testing, imaging and investigation takes place before decisions about appropriate surgery, neoadjuvant or adjuvant treatments can be made.

The results of the MRI scan were by far the most worrying event for me because it “lit up like a Christmas tree.” I thought it might be too late even though I’d seen the Dr straight away. I had countless sleepless nights worrying that I’d die at a crucial stage in my son’s life leaving him motherless, homeless and unsupported. I love my family, I really didn’t want to leave them alone and destitute.

Was treatment hard?

On reflection, I think it was. It took 18 months+ and knocked the stuffing out of me. At the time I didn’t realise quite how big a toll it took. I kept pushing myself forward, trying to be “normal,” getting on with life as best I could. But life was far from normal, and normal didn’t include me.

I didn’t feel seriously ill pre-diagnosis even though I was seriously ill. At some points during treatment I wondered what else or how much more I might need to endure. At times I felt extremely ill. The lowest point came when I had to inject myself with granulocyte colony stimulating factor, to combat low white blood cell levels which increase the risk of serious or life-threatening infections. At night the pain in my bones was unimaginable yet still I carried on. That pain is still unlike anything I’d experienced before or since. So yes, treatment was hard but the alternative doesn’t bear thinking about. I’m still here and as far as we know, cancer-free. It was hard but it was worth it.

What else happened?

Having cancer taught me a lot. Psychological lessons included learning my body was no longer my own. I couldn’t trust it and felt trapped in a shell that might break into a thousand hopeless pieces at any moment. Coming to terms with my own fragility and unpredictability took time. Physical lessons involved treatments designed to obliterate the disease that also obliterated my joints, my thought processes and my hearing. Although cognition has improved a little, my joints and hearing are permanently damaged. C’est la vie. Emotional lessons centred on relationships. People who promised to stand with me simply vanished into thin air and that was very hard. Thankfully strangers and acquaintances came closer, they became friends and remain loyal friends today.

More difficult and painful than any other part of this journey was the continuing loss of friends who were also fellow cancer patients. Some older, many younger, these were people for whom surgeries and therapies did not prove successful. There are so very many of them, not ones or twos but tens and tens. My heart gets a little more broken every time I remember friends and loved ones who have died of this spiteful disease, and think of those who are dying now as I write this post. Cancer still kills.

What next?

I don’t plan or daydream. Life is too uncertain and time is too precious for maybes, tomorrow perhaps or one day. I love my family more than ever and make the most of every moment with them. When they’re happy, I’m happy and nothing else matters. I enjoy my work, still thrive on pushing boundaries and encourage my colleagues to do likewise – why spend time in a job that feels like drudgery? I’ve taken control of things I can control (diet, exercise, rest) but I’m relaxed about it, not a zealot. Spending an extra hour in bed when I’m aching or tired isn’t going to kill me, and cancer won’t return just because I drink a glass of wine or eat a decent steak every now and then. I find beauty all around me and spend as much time as possible creating environments where nature can do its thing. In nature I find solace.

I’d like to stay cancer-free and live for a few more decades because life is good this way. But I never take anything for granted.

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.

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 🙂

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 :-).

 

Time to move on

What do you do

When the world frowns at you

When your life’s upside down

Is there hope to be found?

 

Where do you go

When the rain turns to snow

When your life feels insane

Is your psyche still sound?

 

How do you know

When the words are all faux

When the light’s a feint glow

Is your ship run aground?

 

Why do you stay

When your heart starts to break

When the give is all take

Is your freedom now drowned?

 

Who do you tell

When you know it’s a spell

When the tears start to flow

Is your life come unbound?

 

When do you know

It’s the last picture show

Now its time to move on

Let the darkness be gone

ship

ship (Photo credit: deepwarren)