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.

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Tabula rasa

Several years ago M and I agreed that assuming you reach it, a time comes when having more stuff – trinkets, baubles and chattels – is unnecessary. That time happened to coincide with my cancer diagnosis. The maelstrom that followed only served to reinforce our thinking and of all the stuff we had, time and health were by far the most precious. Unfortunately they both seemed to exist in a separate realm, one that was well beyond our immediate influence or direct control. When presented with significant and life-threatening challenges time is suddenly measured in moments not years and moments can seem extraordinarily brief.

Peace for the restless soul - Lulworth Cove

Peace for the relentless soul – Lulworth Cove

On Saturday it was M’s birthday and rather than look for useful yet useless material goods I opted to create moments – experiences that will endure time even if one or the other of us doesn’t. It’s a fact of life that neither of us will last forever but our memoires might if we write them down, record them in photographs or share them in stories for future generations.  With that in mind and as a surprise birthday getaway I arranged for us to spend a few days in Dorset. M was duly surprised and pleased. He enjoyed the location, the warm weather, the food, the wine and the great outdoors. Our brief sojourn presented a welcome escape for me too following months of non-stop activity thanks to a continual stream of increasingly paradoxical issues at work. Good fortune smiled on me and what started as a means to create enjoyable memories for M on his birthday also became three days of peace for this somewhat wearied yet relentless soul.

The last time we visited Dorset I’d just finished treatment, a whole twelve months of it. I could barely walk and found myself exhausted every hundred yards or so on flat ground. Climbing stairs was virtually out of the question. As a shadow of my pre-treatment self I remember my inability starkly and cheerlessly. I also remember how very glad I was to be alive. To prove it I pushed my battered body to its limits. On reflection I afforded little allowance for the gruelling assault my physical self had recently endured because treatment was over and I wanted to be me again. Submitting to a range of rare yet debilitating long-term side effects was not the outcome I  intended.  This refusal to accept my suggested limitations may go some way to explain why M remembers our visit but doesn’t recall any trace of my incapacity, frailty or complete absence of stamina. I also had very little hair at the time yet it transpires M remembers nothing of the seven months I spent as a translucent Gollum-like creature, entirely bald, without eyebrows, eye lashes and missing assorted toe nails. For him it seems the year between my diagnosis and final Herceptin treatment is something of a tabula rasa. All the details have been erased. The same is not true for me. I recall details of treatments and appointments, waiting for results and wondering what next…

Aside from regular follow-ups that time is now past and though I rarely wish my time away I am glad to be the other side of diagnosis and all that it entails. Damaged joints remain damaged but they are manageable and largely compliant with the wishes of their owner. Stamina continues to grow and Herceptin weight-gain continues to resolve thought that is taking much more time, effort and discipline than I’d ideally hoped.  Moment by moment life returns to near normal, so much so that it overshadows the prospect of an unexpectedly swift demise. The slate is never entirely blank, every cancer patient knows that, but it is clean enough to support the odd daydream and make little plans for the future. In a world where miracles are increasingly rare that is miracle enough for me 🌠

Stamina: the hare and the tortoise

Six days on from surgery and all is progressing as hoped. Stopped taking pain killers on Sunday and the ‘out’ drain was removed yesterday. One down, one to go. 

There’s a moment of anticipation before the drain is pulled – a split second between the Consultant’s “do we have a stich cutter” statement and the patient’s “is this going to hurt?” thought. Quite irrational given the scale of previous procedures and no, it didn’t hurt. Co-amoxiclav will continue, to guard against infections while the outside world is closely coupled with the inner world through a green plastic tube and the remaining drain bottle. 

A bit of welly (stamina) is called for when it comes to surgery and recovery. The dictionary defines stamina as: endurance, the ability of an organism to exert itself and remain active for a long period of time, as well as its ability to resist, withstand, recover from and have immunity to trauma, wounds or fatigue.

Remaining active while shaking off the effects of anaesthetic and synthetic opiates is a little difficult, especially when it’s impossible to see straight. Once all those drugs have worn off getting up and about is an important step along the pathway to healing. Sitting/lying still for too long leads to bed sores or thrombosis, neither of which is a welcome addition in an already complex situation.  A bit of walking and gentle use of the surgery-side arm helps but running a marathon or digging the vegetable patch is out of the question for at least a few weeks. Aesop’s fable of the Hare and the Tortoise may well have been written for such occasions. Slow and steady is the way to go.

The same holds true for the dressings, the wound, the scars and the newly created breast itself. Initially there are all kinds of things holding everything together – steri strips, superglue, waterproof dressings and the industrial strength sports bra worn day and night to ensure nothing moves around. Underneath that there’s the creeping/tingling/pins and needles sensation of nerve regeneration (which is odd to say the least) and the natural swelling, bruising and scarring to get used to. So the requirement for stamina isn’t just physical, a bit of emotional welly is important too. Even with an eye for the avant-garde it’s difficult to describe a swollen, bruised and slightly distorted breast as aesthetically pleasing. These things all resolve in time too, slow and steady.

I was never a good sprinter but the 10k? Well that’s another story 🙂



Stumbling Blocks and Stepping Stones

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

The risk of developing breast cancer before the age of 80 is 21.1% for those with two affected relatives. Assessing my own risk is no case for Sherlock Holmes because at least five generations of women developed and then died from metastatic breast cancer before the age of 50. Wondering ‘why me?’ when I received my own diagnosis in 2012 seemed a little pointless.  A better question was when, not if and had familial breast cancer been better understood fifteen years ago, none of this might have happened. It did and I’ve learned how to accept and deal with it.

Failing to avoid breast cancer is one thing, being thwarted by genetic stumbling blocks and uninspiring statistics is quite another. My consultants say genetic aberration is responsible for the decimation of the female branch of my family tree. On that basis the obvious answer would be BRCA but as science continues to identify, breast cancer is far more complex than BRCA1 and BRCA2. I have neither of those genes.

In time scientists will discover the fault(s) in my genetic code. With luck, skill and more time they might even establish what to do about it. Until then retaining any unnecessary quantity of natural breast tissue seems akin to playing Russian roulette.. with a powerful handgun and live rounds in all six chambers. I’m not much of a gambler and I cannot change my genes however I refuse to live in fear of the century-long shadow breast cancer casts across my family. I know the choices are limited but they’re still choices and a key piece of my cancer-defence jigsaw just came into view.

On 11th March Miss M. and I have another date in the operating theatre. The final vestige of my female (physical) self will be exchanged for silicon and pig intestine over the course of around 4 hours. I  very much hope its the last in a long line of surgeries because much as I love Miss M., I have an increasingly strong aversion to hospitals. Genes permitting this will be an uneventful risk-reducing mastectomy followed by immediate reconstruction – no need to mess around with nodes, skin or chest wall.

It would be easy to regard more surgery, the recovery period, the possibility of complications and/or unwelcome discoveries as new major stumbling blocks obscuring my route to sustained wellness. I prefer to see it as a well considered life choice in circumstances that might otherwise favour cancer, not me. Deciding to have more surgery isn’t easy, it brings back memories that I hope in time to forget but right now, this is an important stepping stone.

Once the operation is over I move from living with an unacceptably high risk of developing another new breast cancer to living in the knowledge that I’ll have done everything possible to contain that risk. In doing so I improve my chances of staying cancer free. Even the tiniest of improvements is better than none at all.

This body may be mutilated and knackered but boy is it resilient!

My friend Maurice at Duck? Starfish? but…23  inspired me to write about resilience following his comment on my ‘side effects’ page.  Please visit Maurice’s blog because not only will you find excellent writing, you’ll also learn a lot about Newfoundland and see that Maurice, the folks he works with and the communities in places like d’Espoir, Francois and Burgeo must be pretty resilient too.

Dictionary definitions of resilience say it’s the ability to spring back or rebound.  In the case of illness or adversity, it is the ability to recover quickly.  I am not sure how long my recovery will take, I am told anything up to 18 months to be on top form again so I think perhaps there is another angle on resilience.  For me being resilient also means enduring difficult circumstances, keeping going in spite of everything and having a steely resolve to overcome chaos and crap on a regular basis.

Finding out you have cancer or any life threatening illness is, of course, a shock but with cancer you often don’t realise you’re sick because early on there may be no adverse symptoms of the monster within.  In my case I felt well, I had energy and I was physically quite strong.  I had been more tired than usual but decided that was just my long-term relationship with pernicious anaemia.  The only sign of cancer was a rather innocuous looking dimple that in turn lead me to discover a lump the size of a broad bean.  At that point I didn’t really feel unwell.

Broad beans, shelled and steamed

Broad beans, shelled and steamed (Photo credit: Wikipedia)

When I found out I needed surgery followed by chemo my world turned upside down.  The one thing I didn’t want to face under any circumstances was chemo… chemo-induced complications killed my Mum (and 16 years on I have not been able to forgive it for taking her away from us when she was only in her 40’s).   What if it killed me too?

On the other hand, I know what untreated cancer does to people and animals and there’s no road to happy ever after if it’s allowed to take control.  My first call for resilience came when facing the prospect of chemo, before my surgery had taken place, before I knew what havoc cancer cells were attempting to play inside a body I knew I could no longer trust and before my FEC-TH regime had even been prescribed.

My next call for resilience came with surgery.  Breast surgery for medical reasons is not the same as breast surgery for cosmetic reasons.  Operable cancer means surgery is mandatory.  You can’t change your mind and tell the surgeon “you know what, put the scalpel away because I’ve decided I’m happy with my breasts just the way the are.” To be completely accurate, it’s possible to refuse any form of medical intervention but in the case of cancer that means it’ll take hold… no happily ever after if that’s the case. For me, surgery was the only choice because death by cancer is something I’d very much like to avoid.

I’d never experienced any major surgery previously but the thought of it didn’t bother me unduly because I just wanted the ELB (evil little b*stard) out.  As it happened, the surgery itself and the post-operative recovery period were less challenging than I thought they might be.  My body recovered quite quickly.   It took a little longer to make peace with the psychological impact of this surgery and it called for more resilience because I had to learn to like myself again, scars and all.  I had to accept that this (mutilated) body is all I have to live in so I might as well appreciate it.  This appreciation had to extend to the blob of silicon and 6″x 4″ piece of pig intestine now residing in my chest too.

An article in Psychology Today says “Resilience is that ineffable quality that allows some people to be knocked down by life and come back stronger than ever. Rather than letting failure overcome them and drain their resolve, they find a way to rise from the ashes. Psychologists have identified some of the factors that make someone resilient, among them a positive attitude, optimism, the ability to regulate emotions, and the ability to see failure as a form of helpful feedback. Even after a misfortune, blessed with such an outlook, resilient people are able to change course and soldier on.”

Undergoing 5 months of chemotherapy called for resilience; the challenges it presented came in the form of side effects that made me go from looking and feeling relatively normal to looking and feeling abnormal and unwell.  Looking like a cancer patient can change the way you think about yourself if you let that happen… you simply have to get used to the way other people look at you.  Choosing not to be defined by the chemo-chic look takes quite a lot of steely resolve; dealing with side effects definitely requires some resilience. If you want to read about side effects take a look at that page, it describes what happened to me.  Fortunately not all of these things happened all of the time but several of them happened most of the time.  I tried hard not to let this get to me; sometimes I succeeded and sometimes I didn’t.  I worked on the basis that a positive attitude is half the battle.  I can be pig-headed at times as well as pig-chested – I wasn’t about to let cancer screw my life up and make me miserable every waking hour.

Until recently I’d anticipated going through chemo would be the biggest overall test of my resilience and ability to endure.   I think that assumption was incorrect because the post-chemo limbo land is now calling for a fair amount of resilience. When you go through chemo you expect to spend some time feeling unwell, to have some side effects and be less able than you were before the poisoning treatment began.  Once it’s over you expect to feel better. Coming through chemo and still feeling a shadow of my former self a month down the line is a real challenge.  I want/expect/feel compelled to do things. Simple things like going for a long walk, running up and down stairs or exercising on the cross-trainer and bike.  My mind is immensely willing but my body states in no uncertain terms “I don’t know what the hell just happened but if you think you’re going to make me run for 10 minutes you can think again sucker!”

Dealing with the frustration this causes and the feelings of being inadequate/weak/somewhat pathetic require more resilience.  It would be very easy to let this period of post-chemo alienation drain my resolve, to move from frustrated to angry and then from angry to despairing.   Fortunately as Psychology Today points out, being resilient means having the ability to regulate emotions and see failure (in this case my knackered body) as a source of helpful feedback.  My body is knackered because it’s had a tough time and I know I cannot expect the things I asked of it a year ago at this very moment. That would be both unfair and unwise given all this 5’9″ frame has endured.  Once again I find I am learning to like myself as I am, to accept there are things I cannot do right now and in time that will change. Normal service will be resumed when the body is good and ready.

A mutilated and knackered body is all I have to live in and I appreciate it very much.  It has an amazing ability to endure some very adverse situations.  I hadn’t realised how much resilience resided in me, physically and psychologically, until I needed to use it in earnest.  That said, I hope I never have to call on it again.