625 Steps Up – 625 Steps Down What An Achievement!

collage-2016-11-11-20_54_30-1

It has been six months since my last entry. My husband’s Hickman line is still out – his hip pain is still there. This aggravated pain has become his number one nemesis. It reigns supreme, digging in its heels, obstinate – not ready to wave its white flag. I’m afraid to ask the medics if he is in the middle of his recovery or at the end or if this is as good as it gets. Neither of us wants to hear the inexorable truth that maybe this arthritic-like pain is a permanent side effect of the transplant. His medical team repeat the mantra “recovery takes time,” “your body has gone through trauma,” “you’ll have to be patient.” My husband is nothing but patient – he endures this baleful period with immense composure.

But the vexatious nature of his pain is beyond frustrating. It’s not chronic pain but an everyday pain – every day since October 2014. Is it caused by his cancer or his transplant or his medicine? All questions are met with a shrugged shoulder reply of “maybe it’s this or it could by that.” A prescient fear lingers heavy that maybe it’s pain for life. As I have stated before – if I could carry his pain for the next 6-12 months to give him a break – I gladly would. Normally the cumulative effect of constant pain would give way to a very angry patient, irritable and cranky, but my husband excels at suppressing these emotions and they only see the light of day on rare occasions. He’s an incredibly pragmatic man who doesn’t see the sense in moaning. As he has said, “Sure what good will complaining do? It’s not going to make me any better!” And he’s right. Complaining never cured anyone. It’s an admirable quality that has stood him well. He deserves an Oscar!

Continuing on steroids is a double edged sword. He is told that he needs to come off them but if he does, his GVHD might viciously attack him. A catch 22 if ever there was one but it has to come to an end at some time. If it were up to him, he would be off the bloody things already but you can’t self-medicate in this game.

His ‘biscuit tin’ of medication is a constant reminder of his static recovery. It presently houses eight types of medicine and is one of the most hated tins in the kitchen – it was an upgrade from a large shoe box so some progress has been made. I look forward to the day when his receptacle for drugs is no bigger than a child’s lunchbox. Presently he’s walking around with absolutely no immunity from measles, mumps, rubella, German measles – all the protection that the rest of us are privileged to have. There is definitely a hamster-wheel feel to this stage of his journey and unfortunately there is no one panacea for his pain. Recent results from his cortisone testing and a biopsy have come back A Okay. Coming off steroids is definitely the next goal – whether it’s within immediate reach, is anyone’s guess. When it happens, it will feel like winning the lotto! It will be the litmus test of all litmus tests – a victory for my husband’s good health.

But it’s not all doom and gloom. My husband is doing remarkably well! He looks fantastic. To see him going to work each day and putting in five full days is both outstanding and reassuring to us all. He is enthusiastically committed to life and pushes harder and further even when he is totally exhausted. Much succour can be drawn from this. The distance between ill health and good health is thankfully widening – not quite Atlantic Ocean wide but it’s not far off.

20160720_125037

During the summer, we spent a wonderful week in West Cork and Kerry. The highlight was climbing the 625 steps up Skellig Micheal, the island off the Kerry coast where Star Wars was recently filmed. Blue skies, full on sunshine – the perfect day for a goal to be achieved. We later learnt that this particular day was dovetailed by rainy, windy days where the boats couldn’t get near the island so somebody was looking out for us. IT WAS AMAZING! It took all my husband’s strength to master the raggedy steps but boy was it worth it. At the summit we rested and soaked it all in and he said “I’m so glad I’m alive.” I’m so glad he’s alive too! It’s a day we will treasure forever.

We find that we are both happy to be distracted by everyday innocuous things. Autumnal walks are a pure joy – his pain momentarily evaporates and my stress dissipates – nourishment for the mind and body. Seeing toddlers kick leaves and observing other toddlers kick off in hissy fits are equally a joy! Each Sunday begs the question “what will we do today?” and we bundle ourselves into the car and off we go. On a recent blustery, windy Sunday, my husband said “I’d like to go to the sea” and so we drove to the coast and walked along the beach, watching angry waves crash against the coastline. We stared at it for an indefinable time – each lost in the majestic beauty that nature was affording us. A simple glance between us – tacit understanding that this was indeed the most perfect moment. Without sounding like every minute is a cheesy Hallmark saying – it certainly is not! I simply want to emphasise how aware we both are now of the beauty of life – being so grateful for this second chance. Before cancer, we would never have truly noticed it and I guess we should have. There’s an urgency for life now and I suspect this is similar for all of those who have had a close shave with death. We can’t afford to take life for granted any more. There’s no time to waste. Procrastination is not an option!

In the last six months, he has had one relapse which should have boomeranged him back into the hospital ward. Midweek late August, a chesty cough reared its ugly head. I tried to ignore the wheezy rattle-like sounds that gave way to uncontrollable fits of coughing but I should have known better. By Saturday, it had its full febrile hold on him and the inevitable question from me arose.
“Do you think you should go into the hospital?”
“I’m not going near the hospital. They’ll only keep me in,” such is his hatred of readmissions and who could blame him. This time the local GP would do just fine. A strong course of antibiotics and a revving up of his steroid intake was prescribed. Our son had gotten us tickets to the comedian Louis CK months previous. We were so looking forward to a night of inappropriate humour – belly laughs to make us cry. But it wasn’t too be. On one of the sunniest evenings in August, my husband was purging out his infection in bed instead of enjoying a night he so needed. Infections are kryptonite for the sick. They are repellent and temporarily immobilise all those who are immune deficient.

This infection, like all the others, did its best to erode my husband’s resolve and it nearly succeeded. As a spectator, the debilitating consequences of an infection are hard to stomach. All energy is evaporated and a kind of languid air permeates the house – sapping the vitality of everyone in its path. But we’ve been there before and know it doesn’t last too long. My husband is reprimanded when he next attends the hospital’s Long Term Effects Clinic but sure a rap on the knuckles never did anyone any harm. After two weeks, the virus relinquishes and life carries on.

We are now two and a half years since his diagnosis day. Oh how I wish I could time travel back to that millisecond when his immune system decided to dip, allowing his white blood cells to mutate to leukemic status. To be able to shout at the top of my lungs “Stop! Not this guy – move along!” To think that this is happening all over the world all the time, to babies and children – who haven’t even had the chance to live – to the elderly, some of whom are alone and too weak for the fight. Cancer is harrowing and the eradication of this malevolent disease has to be the medical Holy Grail of this century.

Anniversary dates of chemo, re-admissions to hospital, bone marrow transplant have now come and gone. They’re not to be celebrated – the memories are too raw – redolent of a very sick husband and an extremely fragile me. As the carer, I still find I struggle at times. I do my best to put our reality in the ‘it’s not really happening’ department at the back of my head but sometimes that ‘department’ is bursting at the seams and it has to manifest somewhere.

I could be driving home from work when suddenly the claustrophobic enormity of what has happened to our lives penetrates through. I’m reduced to tears and succumb to emotion immediately. I get swallowed into an anxious-ridden vortex panicking for air. Stress-filled headaches flirt with me continually and if I as much as glance at them, I’m seduced into another episodic migraine hell. They are not easy to shake off.

I so admire the ‘stiff upper lip brigade’ of women from the 1940’s and ‘50’s. Their unbreakable resolve when faced with the adversities of war, rationing and poverty – they just got on with it! I could really do with a top up of their residual strength and willpower right now. I shouldn’t still be bloody crying at the drop of a hat for God’s sake! My husband doesn’t have cancer any more – he’s one of the lucky ones!

But sometimes my coping mechanisms, that I have heavily depended on over the last 30 months, let me down and good old reliable tears sweep in to soothe and alleviate my mercurial moods. And that’s okay too I guess. My resistance to crying is non-existent at the moment. My life reserves were used up in the first 12 months since diagnosis so I don’t even bother to try and stop them now. It’s a source of much amusement in the house.

But I remind myself daily that there are people out there in much worse states than my husband and carers who have way harder lives to endure than I do. I try to relax and just breathe or talk with someone or, yes, you’ve guessed it – cry! I cannot underestimate the redemptive powers of chatting away your fears to someone or shedding the odd tear – inexpensive therapy with almost immediate palliative results – my husband, in most cases, being my personal counsellor.

I remember my daughter as a child getting a book called “We’re Going on a Bear Hunt.” During a day’s hunting, a family is faced with several obstacles to overcome – a deep cold river, a dark forest, a snowstorm, a gloomy cave – and the repetitive mantra is:
“We can’t go over it, we can’t go under it. Oh no! We’ve got to go through it!”

20161113_150455-1-1

A simple message but so true. And my husband has had to go through this journey as he ‘can’t go over or under it’ – there is no escape route, no Plan B. His strength of mind and positivity has made my ‘bear hunt’ a little easier. I actually bought the book for him last Christmas as its meaning resonates with everything we’ve all been going through. A curious present for a 50 year old man – I’ll have to do better this year!

My husband often asks, “Why did I get leukaemia? I must have been a bad person in my former life!” and there really is no answer to that. He is from a small town in rural Ireland where leukaemia has unfortunately knocked on several doors. My cousin (from my husband’s town) died from leukaemia at age 32 – he had AML, had the bone marrow transplant and it didn’t work. His sister said that he too asked the question, “why did I get leukaemia?” and his own answer was, “well, why not?” It’s an honest answer to a terrifying question. The disease also took a young girl from the same community. Again, she had gone through chemo and a bone marrow transplant and it didn’t work. I see these families when I go back to the town and I cannot, for a second, imagine their dolorous pain. And then another lady in the town got AML and had the bone marrow transplant. Ten years later, she’s walking around – fit and healthy. When my husband was in hospital getting his BMT, she visited him and said “hurry up and get better so that people can take me down off the pedestal that they put me up on!” Her words stuck with me and were greatly appreciated – encouraging at a time of utter fear of what lay ahead. Having been through the torture of transplant herself, she was mindful enough to stay silent.

I broke my own cardinal sin last week! I googled Acute NK Cell Leukaemia and read the first entry. It stated – “survival rate of two months” – well, that’s a lie because we’re 30 months post diagnosis. I became braver – a little smug perhaps – blasé and read on. The next paragraph literally took my breath away – “poor overall survival rate” “relapse is inevitable” – why the f**k did I read that? I immediately regretted it but a nurse’s voice, from May 19th 2014, came rushing back to me, “please don’t look up anything on the internet about his leukaemia. Just listen to the doctors. You will read all kinds of horror stories on the internet.” I lapsed momentarily and have vowed never to google it again. If there is one word of advice I can give to those going through the cancer nightmare – don’t look up the internet!

It’s coming close to the end of another year. I hope that in 2017 more goals will be achieved. My husband’s two pastimes are golf and running and he has been unable to do both since April 2014. Brand new shiny aluminium golf clubs were optimistically purchased in the summer and taken out on their virgin trip once – a few holes before the agonising pain took hold. They lie idle in the study for now – next year will be their year – that is a definite! As to running? Who can tell – maybe the year after. One goal at a time. When we drive past runners, particularly male, neither of us say anything but both of us are inwardly thinking the same – ‘I wish that was me/my husband running.’ So, to all you runners – keep running. Run for all those who wish they could.

We aim to keep the atmosphere bright and airy. We stem the flow of oxygen to any negative or defeatist thoughts that try to infiltrate our everyday but it’s not always easy. At times you have to be inventive to put a positive spin on an otherwise gloomy occasion but we’re getting better at doing that – the distractions of our four children and their escapades thankfully help.

There is a future up for grabs and it will be grabbed vigorously by us! We may never have a facsimile of our former pre-cancer life – a re-calibration might be in order. I still haven’t managed to exhale fully and I hope that’s not too far away. But we’re doing alright. The future looks bright.