Everyone should celebrate a 10-year milestone, whether it’s a wedding anniversary (delighted that you’re still in love) or becoming 10-years-old – double digits at last!
This year, our decade-long milestone celebrated the number of years my husband, Enda, has been cancer-free. It also celebrates his 10-year-old immune system via a bone-marrow transplant – courtesy of his brother, Eunan. This second celebration is seen as Enda’s second birthday or as some BMT recipients call it, their “rebirthing” day. It is worth celebrating as it kick-started Enda’s second chance of living, and so far, so good.
I feel that with this decade of reasonably good health in the bag, it has given my husband the seal of approval of future good health and that his odds of any cancer ever returning would be the same as anyone else’s. I feel that we don’t need to numerate his years post leukaemia once the double digits have landed. I can finally exhale that massive breath of anxiety that filled my lungs when he was diagnosed with cancer in 2014.
The future petrified me then, and now I welcome it with open arms – ready to devour it.
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The further you get from diagnosis day, the more you can relax back into the circadian rhythms of life – much like how we all did post Covid. It’s where we’re happiest.
The first couple of years of recovery were peppered with multiple infections and hospital readmissions, but the remaining were filled with momentous family occasions. Children’s weddings and graduations and three Christenings for each of our grandchildren have helped to exfoliate the gritty lows over the years. Wonderful family occasions for all to celebrate. At the end of these, when it’s just himself and myself, the thought is never far away – “Imagine if I had died. You would have had to be there all on your own. I would have missed so much.”
An emotionally heavy comment.
There is no denying his absence would have tainted all such celebrations with sadness, and our thoughts often go to all those who were not so lucky to escape cancer’s hold.
What has saddened us both over the past decade are the amount of our friends and acquaintances whose lives have been cruelly stolen by the disease – despite the advances in cancer therapies. I can think of five people who were fit and well when Enda got sick and would have often inquired about his health – only to be diagnosed themselves and subsequently pass away. It’s unfathomable. I imagine that when they inquired about my husband’s health, they would never have thought in a million years that cancer would brutally rob them of their own lives a couple of years later.
I recall about three years into Enda’s recovery, we were out walking and met one such person with his wife. We stopped, had the “and how are you doing? Jaysus, you’re looking great” chit-chat and then carried on. I said, “I betcha, he’s telling his wife that you’re the guy who had leukaemia,” and my husband said, “no doubt”.
Two years later, that man died from bowel cancer. We were both shocked by the quick malignance with which this sneaky disease took this man’s life. There always follows a brief moment of survivor’s guilt. After we saw this man’s wife a couple of years later, my husband said, “that could have been you”.
We’re not constantly dwelling on this every time someone dies from cancer, but from time to time you do stop and reflect. It doesn’t go unnoticed.
I often wonder is there some sort of Cancer Committee up above, conniving with glee whilst scanning down on us all and pointing, “let’s give him stage 4 pancreatic”, drumming their fingers on a table, “and let’s give that six-month-old baby girl treatable leukaemia” and upon further contemplation, “and do you see that young mother with the two children, let’s give her breast cancer. And make it incurable.”
That’s how insidiously unfair the disease is. It does not care if you’re young, healthy, fit or a parent to young children. It just wants a target. It is all so random.
So, what does a decade cancer-free look like to the survivor and his “wingman”? For the most part – wonderful, but there can be darkness for the cancer survivor. The capricious nature of low moods is often camouflaged and can be buried deep down. If left to linger it can materialise into a blanket of sadness that can weigh heavy. Enda has carried his blanket with him discreetly. Sometimes, it’s small enough to fit into his pocket and, other times, it could cover a king-size bed. It’s important to sequester the darkness, expose it and try to diffuse it. Our affinal bond has been tested many times but we’re a good team.
While 10 years is a long time, I remember every single detail from those early days when Enda was fighting for his life in an oncology ward
There is a lovely Irish saying that I read recently which sums up what we have gone through – “Giorraíonn beirt bóthar” – “two shortens the road”, and my heart goes out to anyone who has done this journey on their own.
As for myself – as the bystander to this pernicious disease – what’s my take home from the last 10 years?
I have discovered some new strengths, but also unwanted weaknesses. When you are watching someone wince in pain from the harsh chemo treatment or multiple bone marrow and lumbar puncture procedures and you can do absolutely nothing to alleviate the torture of it all, it is beyond difficult. Unwittingly, by osmosis, you silently absorb all the anguish and stress. It marinates subconsciously until you can’t take in any more.
This overflowing of emotion has to manifest somehow, and I had my first panic attack three months post diagnosis. I hadn’t a clue what it was. I thought I was drinking too much coffee, but a friend, who recognised the symptoms, told me what I was experiencing. I have encountered quite a few over the years.
Sometimes, I recognise the signs whilst others are well disguised, such is the devious nature of anxiety. I had always heard about anxiety or panic attacks, but never gave them much credence and I certainly did not realise how enervating their effects are. Quite debilitating. My defence mechanism is a quiet space, headphones and several go-to “code red” meditations. An attack can fulminate in seconds, but the recovery can take hours. The mind is certainly a complex entity.
We are up for new adventures because we know how quickly life can be snatched away
While 10 years is a long time, I remember every single detail from those early days when Enda was fighting for his life in an oncology ward, and I would come home from the hospital each night and have a date with my tears on the couch. It all seems like yesterday. And at times, it’s hard to believe that he went through it all and came out the other end. I wouldn’t say unscathed, but alive and well. Enda has the physical scars from multiple biopsies and the plastic remnants of various Hickman lines embedded under his skin, plus the hidden psychological scars that I am sure all cancer survivors have. His punitive infections are always waiting, stage left, to take hold once a year – just a reminder of how vulnerable his 10-year-old immune system is. No notice given and not always exclusive to winter, so antibiotics are packed in the bag if we are away on holiday.
Life is good and we are so grateful and appreciative of it. We are up for new adventures because we know how quickly life can be snatched away. I think some people assume that when a cancer patient has gone through treatment and is in remission, that it’s business as usual – “move along, nothing to see here” – but that’s not always the case. They have all gone through unbelievable personal trauma that should be recognised and acknowledged. They have fought a long, arduous and lonely battle to survive and “show up”. The person in front of you could be battle-worn, spent – regardless if they have just gone through treatment or are many years post recovery. They deserve all the benevolence that can be afforded to them. Their journey of healing discovery has been one that they have each furrowed out for themselves. There is no one panacea for all – what can be powerfully liberating and ameliorating for one, can be redundant or ineffectual for another. It’s all about trial and error.
The inexorable truth is that Enda nearly died 10 years ago and if it were not for his amazing consultant and medical team at Beaumont and St James’s Hospitals, he would not have been given this second chance of life.
The enormity of this gift is never taken for granted.
Onwards and upwards to many healthy years ahead for him and to all his fellow warriors out there.
And to all their “wingmen” I say – take a bow, you’ve played a blinder.
- Clíodna’s Facebook page is at facebook.com/cliodnaoc