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 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 🌠
Reform, recover, restore. This is my mantra for dealing with the physical and psychological process of mastectomy.
Reform comes first – the act of taking something, changing its form and replacing it with something else, something that is similar to and different from the original. The original brought with it a very high risk of future breast cancer, a likelihood of anywhere up to 75%. The reformed version is a reasonable reproduction – aesthetically acceptable, undetectable under clothing and more importantly, it reduces the risk of a new cancer by up to 90%. Some mental reform is necessary because a newly reconstructed breast looks and feels quite alien but sitting on a time-bomb where the tiniest change in size, shape or structure might indicate another cancer is much more disconcerting. The surgery is challenging and the scars are unsightly but I am unable to mourn the loss of something with the potential to kill me. As mantras go this reform is welcome, positive and reassuring.
Recover is next – time, discipline and patience – aka The Difficult Period. The initial effects of surgery wear off quite quickly – grogginess subsides, pain disappears, cognitive and physical energy begin to return. A couple of weeks down the line all seems well, the sun is shining and that’s when temptation begins to creep in. There are so many things I’d like to do, so many chores that need to be taken care of and so much I’m tempted to just get on with. Our bodies are expert at on-the-fly repairs when given half a chance. The challenge is embracing sufficient discipline and patience to allow those repairs to take place. Resisting temptation when the overwhelming urge is to get up, get out and get on with things is difficult but right now Spring cleaning, gardening and sorting this year’s charity donations all have to wait. The recover part of the mantra is the one I have trouble with. The Difficult Period – time, discipline and patience – slows me down and leaves space for frustration to creep in. Three more weeks and this phase will be done.
Restore is the last part of the mantra. It builds on the recover phase by addressing the frustration of ‘taking things easy.’ It’s positive and welcome because it offers the opportunity to set some goals, work to accomplish them and in doing so improve. Stamina, strength and agility can each be rediscovered, tested and refined. Help and support are welcomed and appreciated but being a burden to others and a frustration to myself are not. The restore process takes time and effort but its worth it. Eventually the list of things I’m able to do unaided will once again exceed the list of things I need help with… and that’s exactly how I’d like it to remain for the next thirty years or so.
Reform is complete, three more weeks of recover to accomplish and then I can focus intently on restore 🙂
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 🙂
Rara over at Rarasaur invented the concept of International Label Day. Last year Pollyanna was my label. I was playing the glad game in spite of everything. Everything consisted of loss: physical, emotional, social and sacred. Life was bleak yet hope and gladness lingered on.
I still play the glad game. Glad for the days I have, the extra time I spend with my beautiful son, glad of the daily phone calls from my darling Dad (21st November will always be your day first and foremost… happy birthday Dad!) I’m glad to walk a bit further with a little less pain, to see another winter and freeze my fingers scraping early morning frost from the car. Glad to breathe, sleep and wake.
For International Label Day 2013 I’ve chosen Higepigtig. It’s an Old English word that means determined.
To fortify that which was lost.
To retain a warm-heart in cold times.
To see a thousand silver linings in every cloud.
To offer hope and solace unreservedly.
To live long before leaving.
To leave no broken hearts behind.