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.

21 scars and all out of love for sloth

Just when I thought it was reasonably safe to put the operating theatre behind me…

2 out of 4 news scars, 21 in total

a bunch of symptoms showed up with plenty to contemplate. Upper right quadrant pain before breakfast, at random points through the day and resistant to over the counter pain-killers. An intermittent feeling of fullness beneath the ribs or a hard area towards the sternum, with pain, sometimes radiating to the right shoulder blade. After a run-in with grade 3 HER2 positive cancer, metastases couldn’t be ignored. The only way to find out was further tests. At the end of last year yet more blood tests and another ultrasound ensued. There are protocols around ultrasound and the sonographer isn’t usually at liberty to say anything but on this occasion he was more forthcoming and said the liver looked normal. I guess he knew no-one wants the thought of liver mets hanging over them like the darkest of dark clouds.

The source of the problem was identified quite quickly and completely non-invasively: a large gall stone.

Fast forward six months and there are four new scars to add to the previous seventeen littered around my torso. Although these are small in comparison to some of the cancer-related scars the after effects of gallbladder removal (laparoscopic cholecystectomy) have been more painful and recovery seems slower. Perhaps it’s because my body was already a human pin cushion and there’s only so many holes that can be made through a single belly button without repercussions? Strangely the scars in the area where the gallbladder used to be don’t hurt and the one in the midline, just below the sternum, is barely noticeable but the belly button and whole lower abdomen is another story. Maybe that’s because it’s been used before for other surgeries or maybe it’s because this surgery involved pumping carbon dioxide into the area leaving my whole abdomen distended like the alien in alien autopsy. Almost a week on and it is still out of shape.

In the recovery room where it took some time to recover (and was a little worrying at first) they showed me the offending gall stone. Just one but of sizeable proportions and certainly enough to have caused all the previous symptoms. The consultant came to visit on the ward and said “it was nasty in there.” I’m still not sure exactly what he meant and didn’t have the heart to tell him it felt pretty nasty living in here post-surgery too. It’s the one time when I’ll gladly declare opiates have been my friend.

Since parting company with the gallbladder and its unwelcome occupant all the unpleasant feelings and malaise thought to originate from there have gone away. Early days but with luck those problems are gone for good. As for the scars, they are healing well. (That purple stuff is medical super glue and it flakes off in 5-10 days.)   One of the worst things about surgery is recovery. It can’t be rushed which means being careful, nothing strenuous and giving things time. But time is precious and aside from piling on pounds when I sit around, every day spent in inactivity feels like an opportunity missed. It’s frustrating. Twenty-one scars in a 30 x 50 cm area is more than enough so hopefully this surgery is the last. Precious days are passing and I’m all out of love for sloth.

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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Scar Tissue, Tattoos and “Are we there yet?”

“Are we there yet?” The question anyone making a long journey with a small child is sure to have heard. You don’t expect to hear it asked in many other situations but breast cancer is one where the thought occurs even if the words remain unspoken.  Pre-diagnosis I heard many media stories about how we no longer need to be afraid of  breast cancer, how treatable it’s become and how many more women survive these days. Bearing in mind none of the women in my family have survived I try to look on the bright side and hope these stories are all correct. I’d heard that treatments had moved on, surgery was less debilitating and with the help of pink ribbons the world was now full of courageous cancer warriors – previvors, survivors and thrivers.

Until I was faced with aggressive breast cancer, a type that brings a high propensity to metastasise, I had  not heard that diagnosis, surgery and treatment may well take over a year. I had not heard that diagnosis itself requires multiple steps which can (and did) include many false starts, lots of potentially conflicting information and significant additional stress. Post diagnosis I had not heard that surgery and surgical revisions, follow-up treatments and regular check-ups can extend for a minimum of half a decade – and that’s if you happen to fall into the ‘best case’ scenario.  Nor had I heard via any popular media sources that in the case of those  diagnosed at Stage 4 (or the 30% of us who go on to develop mets in spite of treatment), the journey is never complete. Check-ups, treatments and various surgeries just keep going until we ourselves come to an end. “Are we there yet?” takes on a whole new meaning in this realm.

My own breast cancer journey has been tracking along for over three years now. We are still moving forward yet still unable to answer the “are we there yet?”  question.  Major surgery is complete and I am in remission as far as we know but only time will tell if that will remain the case. Meanwhile there are a number of minor things to tackle including surgical re-work to address unintended consequences arising since the original reconstructions.  When these revisions happen depends on waiting lists, beds and Government spending reviews but in the meantime there are highly recommended ‘finishing touches’ designed to help me believe that life is as it should be.  This involves the creation of an illusion of a more normal appearance, but in truth there is nothing normal about any of this.

It is at this point that the scars and tattoos become relevant. Post-surgery, chemo and Herceptin I am the owner of a Barbie-esque chest that is almost as unnatural, shiny and pink as Barbie herself. Were it not for the scars running across the front of mine (and the vampire bites – double drain scars that adorn either side of my rib cage) my torso might be that of a plastic toy. Fortunately the vampire bites are not obvious and there’s little to be done with them in any case. The same is not true for the front facing scars and on top of all this (no pun intended) is the small issue of absent areola/nipple complexes. You won’t be surprised to learn that this tends to give the game away.

At first I didn’t think the whole Barbie/nipple thing bothered me. I was glad to be alive and still am – glad and alive. I didn’t plan to show my chest to anyone other than the person I married so missing in action areolas and nipples felt like no big deal.  But having lived with pink plastic mounds for three years I’ve come to realise the absence of those oh so common breast adornments and the obvious scars that took their place serve only to remind me of things I’d rather not dwell on.  Additionally there’s the small issue of any activity involving communal changing rooms, taking one’s top off or the dreaded but inevitable accidental reveal. Being an outdoor type that’s easier to achieve than you might at first imagine.

So after much deliberation I took my consultant’s advice and engaged in the process of additional fakery – to help disguise the fact that both breasts are completely fake.  A fake to hide a fake is pretty clever stuff but in real terms it consists of multi-pigmented tattoos designed to give the appearance of an areola/nipple complex. There is no need for more surgery to reconstruct fake nipples and as they’ll never be or behave like the originals I couldn’t see that they serve any purpose other than being there.

As with all things breast cancer the tattooing procedure is a multi-stage process and requires more than one treatment. Before commencing work the nurse tattooist gave me some anaesthetic cream. This has to go on an hour in advance in the hope it will numb the area.  On reflection I should have realised it wouldn’t be terribly effective because the same stuff is used by my dentist and never works. I normally end up with multiple doses and have to wait much longer than normal before it kicks in. So the tattoo process was not pain free and although it was reasonably quick it had me wincing and silently chanting ‘I hope this is worth it.’  The nurse did offer to stop but when you’re a third the way through that doesn’t seem like a viable option!

At the end of the process there was some blood. This was followed by more bleeding and weeping afterwards.  It’s fair to say that the area was quite sore for a few days and a little tight and swollen.  Scabs formed then became itchy and began to fall off. I left them alone because picking would cause pigment loss and possibly lead to an infection.  About a week out from the tattooing process the scabs were all gone and the resulting pigmentation is reasonable if patchy in places. This is why the procedure requires more than one attempt.

Looking closely at the scar tissue it seems the pigment struggled to take in the sharp edges of both scar lines. Incidentally this area was hyper-sensitive when the tattooing took place.  Peering less closely and looking from a small distance the scars themselves are much less noticeable and hidden by something that passes as an areola/nipple complex.  Although this is the first attempt it’s probably good enough to fool anyone who might catch a glimpse in a communal changing room – as long as they don’t stare!

The next tattooing episode will happen in about 6 weeks time when the skin is properly healed and the big question is… Is it worth it?  On balance I think it is. After breast cancer nothing is ever the same so something approximating normal is about as good as it gets.  I now know what to expect during the next round of inking and will slap the anaesthetic on well in advance. Once the soreness and scabbing subside I can look forward to having two very respectable forgeries in place of the torso of a badly treated Barbie doll.

I had to think about this long and hard because I am tired of hospital visits, surgeries, re-work, worry, stigma and prejudice. But my consult (who is a miracle worker as well as a thoroughly lovely lady) was right. Looking more normal is helping me feel more normal and that is the ultimate placebo effect.  If you’ve had surgery and are thinking about areola/nipple complex tattoos the following articles may be useful. Nancy’s post gave me the inspiration to try this for myself and like Nancy I am happy with the result

Liberté, égalité, fraternité: when will we cure our obsession with self-destruct?

Today I’d intended to write about the never ending story that is breast cancer: discovery, treatment, reconstruction (or not), revision, reflection and resolve. Those things are, quite literally, close to my heart. But I can’t concentrate on the horrors of breast cancer because my mind has been consumed with the horrors of terrorism and my heart goes out to the people of Paris.

Credit: Skyrock.com

I’ve had two spells working in Paris. The first in the early 2000’s involved regular time in a grand office in the 10th Arrondissement. By day much of my time was spent at my desk, in meetings or running workshops somewhere inside the building. Arriving well before 9am, staying beyond 7pm and failing to stop for lunch would frequently prompt questions and jokes from my French colleagues. “Why do you English always work like donkeys? You are silly to work like this. The French way is far more civilised” they would say. As a guest in my colleagues’ country I couldn’t argue with this so would join them in the joking.

I quickly discovered that the French way was more civilised at every level. Coffee and pastries in a nearby patisserie before starting work, an hour or two for lunch in a local café and then home or more likely out for dinner by mid-evening and an opportunity to explore one of the capital’s many fine restaurants. Dinner, the pièce de résistance, presented an opportunity to partake in another leisurely meal carefully consumed so as to make the most of an evening with family or friends. My French colleagues savoured time with each other as much as they savoured the wine or the food. I didn’t need to be in Paris too long before I began to favour the French way too.

My second spell in Paris arose in the late 2000’s when I worked for France Telecom. Their offices lay just beyond the Periphique to the south of the capital but since that area was largely residential I spent my evenings in Montparnasse. The hotel was good for people-watching and the local cafes and restaurants were vibrant and welcoming. Theatre goers mingled with groups of work colleagues, families mingled with couples and local residents mingled with overseas visitors. The City of Light was a sensuous, sophisticated and sociable place to live, work and play.

Today the City of Light is shaken, sombre and trying to make sense of multiple acts of wanton violence, acts designed to kill, maim and terrorise innocent civilians during a typical Friday evening in central Paris. The faceless, nameless, shameless perpetrators no doubt believe they committed these acts in service of some greater cause, to right some deep-rooted wrong, or to demonstrate conviction to the will and way of whichever god they happen to subscribe to. Whatever the reason, the streets of the City of Light are once again stained with blood and innocent people lie dead or injured.

Modern humans evolved c.200,000 years ago and civilisation (such as it is) c. 6000 years ago. We claim to be the most intelligent species on Earth yet we appear to change at a glacial pace. Our ability to curb our most primitive, tribal and often superstitious belief systems, to learn from the mistakes of the past and fully embrace our diversity is questionable at best. Events like the one in Paris quickly become visible across the globe but look closer to home and you’ll find stories of cruelty, violence, bullying and abuse right on your doorstep.

Humanity seems destined to prove it is the most dangerous, spiteful and debased species that has ever inhabited the planet and Paris, sadly, is the most recent in a long line of atrocities. When will we learn and how many more 13/11’s, 9/11’s or 7/7’s must we endure before we finally cure our obsession with self-destruct?

Sentience

Like one, that on a lonesome road
Doth walk in fear and dread,
And having once turned round walks on,
And turns no more his head;
Because he knows, a frightful fiend
Doth close behind him tread.

    

Samuel Taylor Coleridge – The Rime of the Ancient Mariner

Sailing Away

Sentience is a blessing and a curse. Some days are more cursed than others.

I didn’t watch The ‘C’ Word. I followed Lisa’s Blog but didn’t have the necessary psychological flood defences in place to watch her story played out on television. A dramatisation and by all accounts a very good one, it might be better categorised as reality TV. It reflects the harsh reality of breast cancer where life no longer comes with a happily ever after guarantee. Some people with breast cancer do not survive. Some people with breast cancer die. Some of them are very young.

Survival has been playing on my mind a lot lately because there is no rhyme or reason to it. No-one knows who among us will outpace the frightful fiend, who might be forced to endure it to the bitter end or who might find themselves facing it on more than one occasion.  This is ambiguity on anabolic steroids and uncertainty reigns supreme. In this version of reality sentience is more curse than blessing. Lately it seems for every survival story there are multiple stories of an all too early demise.

As humans with a limited time on earth we must learn a crucial lesson – never take anything for granted. Health, strength, life itself, these things can all be taken from us in the blink of an eye.  Most people don’t need to think about mortality on a daily basis and that’s probably a good thing because life would be very depressing if we did. Those of us who do think about it – a thought pattern that is almost inevitable after a life-threatening illness – probably do ourselves no favours. Worrying about our own mortality doesn’t change the final outcome. This is another scenario where sentience proves to be more of a curse than a blessing.

So what of the blessings? Feeling the sun on our skin, watching grass grow, celebrating another birthday, anniversary, Diwali or Christmas are all blessings. Walking in the park, riding a bike, reading a book, those things are blessings too because life after cancer is difficult. It throws up questions for which there are no answers and searching for answers offers no reprieve. The simple act of waking up each day is a blessing in this reality, when you have no idea how many days are yet to come.