Panic Attacks, Delayed Goals and Meeting Fabian

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January 1st 2017 kicks off like all other New Year’s Days that have gone before – a little hungover but full of optimism and hope. I stopped making New Year’s resolutions a long time ago but furtively hope that my husband can achieve a couple of recovery milestones. Maybe three or four – you can’t be greedy when dealing with Bone Marrow Transplant recovery goals. Expectations need to be lowered and then disappointment won’t be too momentous when a setback occurs. My husband is still off steroids – he is still in a lot of muscle pain but no GVHD (Graft Versus Host Disease) has set in. It has taken over two and a half years for him to be weaned off steroids and to see an unopened box still untouched, is both satisfying and reassuring.

January 2nd – our 27th wedding anniversary – a day to be celebrated, to be happy, to be surrounded by family – we go shopping with the children to be followed by an informal meal. But one uninvited guest decides to gate crash. The mother of all panic attacks erupts from nowhere and penetrates into my chest moments before our celebratory meal in the middle of the day in a busy shopping centre.

My husband instantly recognises the ‘cry for help’ signs etched over my face while I mumble “I have to get outside now” and leave him to gather the rest of the family before we eat. I clumsily wade my way through the many bargain hunters, trying desperately not to catch anyone’s eyes. But tears cannot be camouflaged under fluorescent lights and I attract inquisitive stares from adults and children alike. As my attacker stealthily moves from the chest area to my throat, I feel its hands slowly tighten around my neck as it prepares to strangle me. When this happens, I always have the image of Kaa, the snake, in Jungle Book wrapping himself around Mowgli. Today is no different.

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My shallow breaths quicken. I know how this plays out – I have to get outside. The exit door is within sights and I know I’m on the home run. But just before I cross the finishing line, I bump into a work colleague. Not cognisant of my anxious state, she begins to chat about the Christmas holidays – how hers were and “did you have a good Christmas?” My monosyllabic response runs contrary to my normal loquacious self – she recognises this and quietly inquires, “are you ok?” At this point, my attacker has rendered me into silence. Immobilised and barely able to breathe – I shake my head. My colleague compassionately touches my arm – “Go on, I’ll talk to you later.” I make it outside – the icy cold night air is such a welcome reprieve. I inhale deeply and try to suck it down to the bottom of my lungs – dispelling my attacker away into the night’s air.

I walk around for minutes – trance like – oblivious to the tears running down my right cheek. Where on earth did that panic attack come from and why on earth did it decide to rear its ugly head on this celebratory day? I wasn’t aware that I was that stressed but that’s the sneaky nature of anxiety. Up to this point, I have endured varying levels of anxiety which I attempt to stop before it takes on its ‘Code Red’ status by meditation, a walk, the gym or listening to music. But when a full-blown attack comes hurtling in like a scud missile and takes advantage of my compromised defences – it does what it’s supposed to do – ‘search and destroy.’

Previously, I assumed a paper bag to blow into was the unofficial prescription for panic attacks – I can now reassure you it is not! Newly inducted to this world of stress – I have a profound respect and sympathy for sufferers who have severe cases – where they can’t leave the house, go to school or hold down a job. It must be unbearable. I’m only in the ha’penny place compared to them with my fleeting attacks but I do want to let carers know that they may experience them and hopefully some of my coping mechanisms will help.

So what are my triggers? Upon reflection and previous experience of attacks, I can narrow it down to two things. And these are two things that I love dearly – shopping and my husband! Since I can’t be without one, I need to manage the other. As avoiding shopping is almost an impossibility to me – I can recognise to go only when my mood is calm and upbeat. My husband…well I can’t avoid him! And it’s not him as a person who is the trigger. It’s the state of his recovery – whether it’s in stagnation or groundhog mode or if I can see that he is trying to suppress the enormity of what he is going through to prevent upsetting me. He’ll say he’s fine – I know he isn’t so I’ll suppress what I’m seeing and hearing. It’s a vicious circle and eventually manifests as a panic attack.

It’s April, and so far, no more ‘uninvited guests’. I feel that going to half day silent meditation retreats also contributes to this. We all know that meditation can be medicating but the power of silence cannot be underestimated. I am booked for another one on the third anniversary of my husband’s diagnosis to celebrate his post cancer life before I graduate to a full weekend of meditation. For any carers who do not want to take anxiety tablets, I would recommend meditation. It somehow emancipates anxiety without you realising it. It’s a practise that enables and welcomes a quiescent mind while celebrating the ‘now.’ I have avoided tablets so far – I’m not against them and if need be, I’ll take them. I don’t want to be a martyr for the cause. I am still investigating ways of alleviating anxiety through reading material and other peoples’ experience. There is great efficacy when people share their coping mechanisms with one another and this cannot be overlooked. Reflexology and reiki are also two practices that help enormously – previous to my husband’s illness, I would have been incredibly cynical towards these alternative methods but after each session, I become grounded, my mind is settled – if that doesn’t sound too hippy trippy!

I have been recommended a book, “When Panic Attacks” – it has been ordered and I’m looking forward to understanding the psychological reasoning behind the anxious mind. There are lots of ways of alleviating the symptoms but if I can understand the causes then maybe I can overcome them.

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Two of my husband’s recovery milestones that we had penned in for January were to get his infant vaccinations re-administered and to come off his immune suppressant tablets. In December, my husband got the flu vaccine – the prophylactic against all infections! Or so I thought. Second week in January, an infection invades my husband’s immune system with military precision. I shouldn’t be shocked by the alacrity of infections but I was at this one. He wakes up shivering with his ‘junkie’ shake – beads of sweat ‘cartoonishly’ popping out from his forehead. The malady bunks in – secure in the knowledge that it has found its perfect host. It knows that it can incubate here without much resistance.

By day three, my husband is still purging out this fulminant infection into the bed sheets – drinking little, eating less. I bring him to his doctor – he is just about able to make it out of the car to the waiting room. I haven’t seen him this sick in months. My stomach begins to slowly knot and a tension headache is in the side wings – ready to take centre stage. He’s barely able to whisper his condition to the doctor who examines him and then scribbles an illegible prescription. My husband wants to come off tablets but doesn’t protest at the latest three additions to his medicine box – anything that can mitigate this infection is worth trying.

There is no improvement by day six – I have to ring the hospital and have everything crossed that they won’t admit him. The clinic nurse tersely states, “there are only two reasons why we would want to see him. If he has a temperature or if he has diarrhoea,” – I quickly boast, a little too excitedly, “he has neither!” as if I’m looking for ‘Carer of the Year’- “then, it looks like he’ll just have to sit it out.” It’s music to my ears – I’m beaming as I say to my listless husband, “bed rest and you’ll be fine!” After nine days, he’s back at work – infection free.

By week four of January, he is booked to start his re-vaccination programme. The evening before, however, I notice my husband scratching an angry itch on his arms and legs. This is no fleeting itch but a proper indignant one. An unwanted rash presents itself too… just in case we were thinking of ignoring the itch. Rash + itch = the classic formula for GVHD in BMT patients and to our uneducated minds, the only way to keep GVHD at bay is steroids. I want to shout at my husband’s immune system, “are we really doing this now? You had two and a half years to present yourself and you’re doing this NOW – when he’s due to get his vaccination!”

My husband optimistically presents himself in front of his GP the next day for the injection. He unwillingly confesses about the rash and itch and the doctor reiterates what my husband already knows – the risk is too great for the milestone to be achieved. Back to the hospital where he is told that there is an embargo on his vaccinations until a biopsy is done to determine the cause of his itch. Coincidentally, our oldest daughter is in the same hospital with an equally irritating skin itch. However, the provenance of her itch couldn’t be further from her dad’s. Cellulitus MRSA – a little present she unknowingly brought back from her travels from the southern hemisphere. Just like her father’s itch, swabs and testing are carried out on her skin complaint as the consultant had never seen it before. She has inherited her father’s uniqueness of medical anomalies.

Two weeks later, results from my husband’s biopsy are inconclusive – “It’s not GVHD but it might be.” This nebulous result is far from satisfactory – for the medics as much as my husband. Until questions are answered, the inoculation process is delayed further and hope of coming off his immune tablets are post phoned too thus allowing some dark moods to take hold and fester. The month of March is spent by my husband contacting the hospital for someone to give him an answer on whether he can go ahead with his vaccinations or not. This lack of communication from his consultant is beyond frustrating. I don’t think consultants realise that when they leave you hanging for over four weeks, it impacts greatly on the patient. I know they are busy people and that my husband’s condition is not pernicious or life threatening but unanswered phone calls and texts come across as discourteous. Manners cost nothing – least of all time.

Five weeks later he is texted that the first stage of vaccinations can take place. We should be ecstatic but it’s against a backdrop of a persistent itch still firmly in residence. My husband’s condition is masked by a daily antihistamine which really doesn’t solve the genesis of the itch. One day he forgot to take his antihistamine and I watched him violently scratching his arms and legs – “my skin is on fire.” The hospital reassures him that it’s just something that can happen – it’s not GVHD and that’s all that matters. I have decided not to stress over it too much and shove it way back into the recess of my mind. I’ll deal with it later. With consequences, no doubt.

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During February, my blog was given some publicity through print media and national radio and a lady, whose husband is going through a bone marrow transplant, contacted me through #waroncancer.com to get advice. Such is the power of this online platform for cancer patients and carers. Being able to give advice to other carer validates writing the blog. I have met her twice and she has given me some useful practical advice too so it’s a win win.

Myself and my husband were fortunate to meet Fabian, founder of #waroncancer, while he was giving a talk at the Tech Summit in Dublin. One thing that we discussed was the negativity surrounding cancer. He talked about wanting to dispel this almost fatalist response from people when they hear you have cancer – some people almost have you dead and buried! I have heard people shake their head when they hear of someone’s diagnosis, “it’s curtains for him!” such is the pessimistic outlook around the topic. With #waroncancer, people can read the stories of all the survivors, how they managed to cope with their illness through dark days and how the aperture on their life has been recalibrated to live a full life. This is what cancer patients need to hear. They need to hear the good stories. They don’t need to hear ‘Google’ doctors saying, ‘oh God, that’s the worst type of cancer you can get.’

I remember someone say to me when they heard that my husband had leukaemia and was going to get a transplant, “a friend of mine had that and was going in and out of hospital with infections for years and years! Oh God, that’s awful that he has that. Poor you!” I nearly collapsed in front of her as I was so emotionally vulnerable. At the time, I was living day by day and hadn’t the strength to hear what was ahead of me in the coming week, never mind years down the road. That can be so overwhelming to hear. People can be negatively insensitive without truly meaning it. Just be mindful of what you say to a cancer patient or a carer, as they need to cling onto every morsel of hope – it just takes one pessimistic comment to negate all the benevolent ones.

Positive cancer stories need to take prominence. Since January, I have heard of five people who have been diagnosed with various cancers. All have been treated either surgically or with ongoing chemotherapy treatment. Thankfully all alive and treated successfully – now they have to cope emotionally and mentally with what they have just gone through. It’s a journey of healing discovery that each cancer patient and, their carer, furrow out for themselves. There is no one panacea for all – what can be powerfully liberating and ameliorating for one, can be uninteresting or pedestrian to another. It’s all about trial and error.

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By April 18th – one and a half goals have been achieved. My husband’s re-vaccination programme kicks off for the second time in 51 years with his 3 in 1 shots and his immune suppressants tablets have been halved. Not bad going!
Little steps at a slow pace – all good.

The Steroids Have Been Thrown Out!

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So the scenario last week in the kitchen goes something like this:
My husband: I stopped taking steroids three weeks ago
Me: WHAT?
My husband: I decided to stop taking them
Me: WHAT? WHAT?
I always think how stupid people sound when they repeatedly ask the same question and in this instance, I’m no different. I’m momentarily rendered speechless by this kitchen table ‘confessional’ but I administer immediate absolution. I wonder will he be so quickly absolved at his next hospital appointment on December 19th. I doubt Prof will be too impressed by his self-medicating antics!
In my previous update, I mentioned that there is a well justified school of thought that taking my husband off steroids would bring on a severe case of GVHD but his mind works differently to the medics.
My husband: I’m sick to my teeth of being on them. When I go in on the 19th, I want to show them that I’m off steroids four weeks and I can handle it!
Is my husband bolshie or brave? He’s a bit of both – it’s in his DNA. Hell didn’t freeze over and fingers crossed, GVHD won’t rear its ugly head again. Showdown next Monday with his medical team. Watch this space!

625 Steps Up – 625 Steps Down What An Achievement!

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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.

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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!”

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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.

Setback Number ? We’ve Lost Count!

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God damn Hickman line! Just when you think that a hospital readmission is a distant memory, the God damn Hickman will quickly remind you of who is boss!

In my previous blog, I mentioned how my husband was getting back into some sort of norm, working full time and looking more like himself – recovery can trick you into complacency.

It’s the middle of May and we are away from our house for the weekend. We both wake up early on the Saturday morning as the sun’s rays break through the bedroom curtains and the birds are singing outside – their dulcet tones pleading with us to get up and start the day. We both live for days like this – eager to enjoy every minute of nature’s beauty on an unusually hot spring day.

Two percolated cups of coffee later, we sit at the breakfast table discussing what we’re going to do that day while the children are still in that blissful Saturday morning lie in state upstairs. My husband is on his third Hickman line – a dreadful line protruding from the chest where treatments can be given and blood extracted without interfering with a vein. It is a constant reminder that all is not well. I have the onerous task of flushing it out and changing the dressing every week. It’s not a job I particularly like to do for fear of infection. Each time the line is cleaned, you’re exposing it to the many possible infections knocking about. Although I must admit, I do rather enjoy slapping the antiseptic gloves on – I almost look like I know what I’m doing!

Cautiously my husband says, “I’m afraid that if you flush out the line, the infection that’s there will be pushed in.”

“Do you think so?” I almost second guess him. It is fair to comment that at this stage, my husband is acutely aware of EVERYTHING that is going on in his body – to the point of proving doctors incorrect when the origin of an anomaly comes up and there have been quite a few.

But the bloody Hickman has to be flushed out! I don the antiseptic gloves, slapping them in my, by now, comedic way and flush out the line. All well so far. We go about our day as planned but in 15 minutes that is to alter drastically.

My husband’s pallor takes on a ghostly shade and he has to lie down.

“I don’t feel well.” I think he’s joking to be honest.

“Are you serious? Stop the messing!”

His body convulses into a ‘junkie’ shake and sweat beads form on his forehead – cartoon like. He is shaking uncontrollably. I have not seen him in this state since his bone marrow transplant and it’s quite scary. I stare at him thinking, “This can’t be happening! We have a whole sunny day to enjoy!” I know what’s coming next.

“Call the hospital.”

I get straight through to the transplant ward and am told in a terse voice, “Bring him in immediately.”

We are a two hour’s drive away and I try to conceal the panic arising from within. My husband reads me well and immediately rings his brother to drive him.

“You stay here and let the kids sleep on. Stay until tomorrow. No point in you coming up to the hospital staring at me and getting stressed out. It’s just an infection. It’s not cancer. I’ll be fine.” Selfless and caring. My relief is palpable.

The brother he has called is the brother who had a rendezvous with Non-Hodgkin’s Lymphoma nine years previous. He knows the score and has been the one who my husband gravitates to when he’s at his sickest. He is there within minutes to rush my husband to the hospital – he knows how setbacks feel. I am grateful beyond belief.

I have a vision of this infectious bug lurking in the line – ready to pounce into action. Waiting for the magic flush. I imagine a spikey cartoon-like bug with three eyes, laughing hideously as it torpedoes down the line like a pro – navigating the final bend to dump its toxic infection into my husband’s blood. Mission accomplished.

Re-admissions to the hospital are soul destroying. We had slowly stepped back into some sort of normality – work, family life, walks, day trips – that you almost become blasé about recuperation. That you’re one step ahead of it. But a setback will very quickly shepherd-hook you back to wherever it wants – without warning. It’s crap!

He’s immediately hooked up to an IV drip and two antibiotics are pumped into him in the hope one of them will kill and destroy. Bloods are taken and sent to the lab for cultures to be grown. I imagine my little cartoon-like bug with three eyes, flailing around a petri dish, fighting for its life.

His hospital stay lasts five days – it seems like 10. You go into automatic mode of visiting. Sitting on the edge of your seat – trying to string out the small talk. Trying to talk up the hospital food which my husband says, “You wouldn’t feed to a dog.” Dinners lie untouched on his tray – gravy congealing on ‘steak’. Carrots, the foot soldiers of vegetables, are inedible. How can you screw up carrots? We walk to the hospital restaurant to eat. Everyone looks miserable. The sick in dressing gowns doing the hospital shuffle in their slippers wondering when they will escape. Neither one of us wants to catch anyone else’s eye. We just want don’t want to be here.

He’s in an oncology ward with three women. He’s quickly named Romeo by the dinner lady! His three ‘roomies’ are in various stages of cancer and chemo treatment. One lady screams out in pain during the night such is her agony with the disease. It’s unpleasant for everyone. But I want to scream myself – my husband DOES NOT HAVE CANCER anymore! Put him in a recovery ward with patients who are recovering. He has already done his stint with chemo two years ago and I feel it’s unfair to expose him again to it. But he just gets on with it – it seems to bother me more than him.

By day three, a decision has been made. Since the Hickman line is the source of the infection, it has to come out. That throws up another quandary. My husband needs the line for his photopherisis treatment as his veins are non-compliant. They scarper at the mere sight of a needle. It is decided then that an approach of ‘wait and see’ with a smattering of ‘fingers crossed’ and why not throw in a rabbit’s foot as an amulet, is employed to see if my husband’s recovery can carry on without the treatment. Two months later I still have everything crossed.

Day five – my husband has been given his ‘get out of jail card.’ This setback has knocked the wind out of him. He leaves with too many antibiotics – his stomach’s lining must resemble shipyard steel by now to have endured the thousands of tablets ingested. I am reluctant to countenance the side effects of the steroids never mind the antibiotics and the rest!

We’re home by Wednesday evening. He is absolutely knackered. On Thursday he gets up for work. He’s not going to let this get the better of him. He’s not fit for work but I keep shtum. This cancer gig and recovery separates the men from the boys. Like I said previously – his resilience is remarkable.

 

The carer’s story so far – Acute NK Cell Leukaemia

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This time three years ago my husband was riddled with cancer – Acute NK (natural killer) Cell Leukaemia to be exact. We didn’t know it at the time of course. He was not displaying the usual red flag signs of excessive tiredness, bruising, a lump etc. He merely felt sick one Sunday night and was experiencing pain all over his body which brought him to A&E.

Six days later, he was called to be admitted to hospital for further testing, sitting in a hospital bed in an isolated room, Pickman line in, hands up in the air proclaiming to me, “So, I have leukaemia!” He had been told earlier on, on his own (which was unforgivable) so he rang me at work to come to the hospital. His voice was calm but I knew he wasn’t. I had a visceral feeling as I parked the car that I was walking towards bad news.

Two weeks previous, we watched the movie “50/50” (about cancer) and said to each other, “Could you imagine being told you have cancer? How would you cope?” Well now we didn’t have to imagine it. We were about to hop on the cancer road trip – destination and duration unknown.

I know it’s a cliché to say that you have a sort of out of body experience when a consultant delivers extremely bad news but it’s true. When we were both sitting on my husband’s hospital bed and looking at his consultant haematologist and his coterie of assistant doctors and specialist nurses, we only heard white noise and I felt like I was looking down on myself. The medical facts are machine-gun fired out in a perfunctory fashion; each new fact delivered is like a slap on the face and there are many blows. No flowering of the facts here.

“You have absolutely no bone marrow at the minute…The cancer has eaten it all up… You only have it, maybe 2-3 weeks… You will need 3-4 rounds of chemo and then a bone marrow transplant… You will be in hospital for the next four months… You won’t work for a year… I would be uncomfortable for treatment not to start by Friday as it’s so advanced”… How to silence a room. And if that isn’t enough, the killer line…”You will be monitored after for years because cancer is very intelligent and can always find its way back in in another form.” Needless to say, it took me a long time to shake that off. Everyone leaves us – they know that the emotional floodgates are going to open. They have seen it all too often.

My husband is then thrust into a cancer world without any warning with such alacrity that it’s hard to comprehend. He has been given involuntary membership to an unwanted club. Our new vernacular is peppered with medical speak – platelets, neutrophils, temperature, bowel movements. Little do we know that this new chapter in our marriage is going to consume the next two years of our lives and then some. We had just celebrated our 25th wedding anniversary the previous January and had booked a week’s holiday in Majorca with the two younger children and then a ‘selfish’ holiday with the grown-ups in Croatia – not to be but holidays are only experiences after all and hopefully we’ll get back to doing both of those gigs soon.

What next? To tell our four children. Our daughter (25 at the time) and son (23 at the time) get ‘the phone call’. Telling the younger two, a daughter, then aged 13, and son, 10 – now that is a different ball game. I remember a nurse handing me a leaflet “How to Tell Your Children about Cancer” as I was leaving the hospital – why was she giving this to me? I threw it in the bin. I’m in stage one of denial. I attempt to tell my daughter and realise I’m not as brave as I thought I was. I break down and momentarily see fear in her eyes. I must look a mess. My son sweeps in to take over and delivers the news in a calm and reassuring manner. I put off telling the youngest child for another day and then completely wimp out and my oldest son has to do the honours again. However, my youngest is an inquisitive 10 year old.

“Does daddy have the bad type of cancer?”

“What do you mean?” I ask.

“Like they say on TV – you have two months to live?”

“Don’t be silly sweetie. Daddy’s going to be fine.” Little does he know that I haven’t a clue at that stage if what I was saying was true or not. He then looks at me and asks, “Can I go out and play football?” Oh to be a child!

Next with a cancer diagnosis is the reaction from other people. Its meaning tends to have quite a wincing effect. All of a sudden I’m the focus of everyone’s sympathy and after two days, I go back to work in a daze. I brave all the stares; some people not knowing what to say, others knowing exactly what to say. One colleague doesn’t need to speak – she holds my hands as my pain is reflected in her face and I melt into her arms like a defenseless child, sobbing. People say to my husband “stay positive” and to me “mind yourself” but we don’t know how to do either! Over the next two years it kind of becomes our own little joke when we are saying goodbye to each other. I would say to him “stay positive” and him to me “mind yourself”. We’re just about getting around to doing both now.

When my husband went into hospital, he looked healthy and fit even though he was ravaged by cancer. Pre-cancer, he was an incredibly strong person in mind and body, fit, sorted out all the DIY in the house, could fix anything. He had his jobs, I had mine. After two weeks, I see before my own eyes what cancer does to a person; his masculinity is bleached away to expose a vulnerability and a weakness I’ve never known. It frightens me beyond belief. Chemo and cancer = man cancelling.

His pain is ameliorated with severe opiates sending him into an hallucinogenic hell and the corollary effects aren’t pleasant to watch. The cocktail of drugs and chemo have a somnolent effect as he drifts in and out of sleep. Time, date, month…all irrelevant now.  His mood vacillates from hour to hour. I find myself walking on egg shells. This is not my husband. He’s no longer the captain of our ship. Everything, for the first time in our married life, is out of his control. He hands himself over to the professionals.

He is given steroids which, before long, give a tumescent appearance to his face. Next to go is the hair. I cut it short at first and then he has a shower where it all seems to wash away.

”I looked down at my feet and all I could see was what I could only describe as a ‘dead cat’.” He is upset but hides it well. He now looks like any other cancer patient and people either stare rudely at him or don’t make eye contact at all. From behind he looks like a very old man – his stooped posture belying his youthful age.

The gravity of the situation hits me hardest when I bring him up to the x-ray department, one day, in a wheelchair. We go into the lift which is crowded and, unfortunately, it has an internal wrap around mirror. I am horrified at the vision that is reflected back at me. My husband’s head is bent low as if the mere weight of it is too hard to bear. His once thick, black hair gone to be replaced by a white/grey fuzz unique only to chemo patients. His 48 years of muscle build up has overnight been atrophied by cancer to reveal a sickly, emaciated shadow of himself. An ‘imposter’ has taken up residence in his body, settling itself in for the next several months. There is a deathly silence in the lift; people look to the ground or straight ahead for fear of the disease being contagious. I look away myself – immersed in jealousy over their healthy bodies – tears are just about held at bay.

The next few months are a blur. I spend all summer in the hospital trying to come to terms with this new version of life. To stop my body from morphing into the shape of a hospital chair, I decide to run up and down four flights of stairs (200 up and 200 down). I’m sure I must have looked insane to people whilst my husband is lying sick in a ward, chemo racing through his poisoned blood.

A huge milestone is achieved when my husband is discharged from hospital for a week’s reprieve between chemo treatments. It takes some time as he got the most truculent infection which refused to be obedient to the antibiotics that were being thrown at it. I ‘Howard Hughes’ the house for fear of him picking up an infection that would see him back ‘inside’ before the week is up.

Next up is to find a donor match for the bone marrow transplant. He has seven siblings but one is ruled out due to his ‘dalliance’ with the disease seven years previous. Luckily one of his brothers is a match – I want to bubble wrap him up to protect the precious cargo that he’s carrying around until the transplant at the end of September. Little did he know that for over the past 50 years he was his little brother’s life-saver; an act that we are forever grateful for.

I won’t even go into the details of the bone marrow transplant too much. Suffice to say, that his six weeks ‘locked up’ in a room in a vegetative and morphined state, were a nightmare. The unit is in the bowels of the hospital where the corridors are empty – void of specialist nurses and consultants. There is no laughter or idle chat permeating the unit – the silence is deafening.  I call it a torture chamber which is ironic because it’s the place where his life was saved.

Roll on 36 months and my husband is doing ok. He has experienced so many setbacks – far outweighing the positive milestones – and so many hospital re-admissions. His fight is still very much a daily battle. He has experienced countless rock bottoms and he just keeps picking himself up and moving on. His pain threshold is impressively high and he has resilience like I’ve never seen.  Cancer tries to break you mentally, physically and emotionally and I have seen it succeed several times but not so much now.

He has had three Hickman lines in and removed to receive photopherisis to try to stop his rare form of GVHD – Graft Versus Host Disease (the graft being his donor brother, the host being himself). He is constantly tired and prone to infection. He went back to work full time in July 2015 which was a huge step in the right direction. His work have been incredibly patient and if Carlsberg did bosses, my husband’s boss would be one for sure! He has shown so much kindness and understanding with regard to my husband’s illness and recovery. To be honest, I don’t know how my husband keeps going; he is such a determined person and this drives him further into his recovery. For the first time in three years, my husband is looking more like himself but I know he yearns for all that pre-cancer energy and good health that he had. I know it will come but he could really do with a break right about now. I feel the sell by date on his positivity and fight is fast approaching. His recovery could be classed as ‘groundhog’ and he quickly needs to be catapulted into the next stage to top up his strength.

So what about the carer? How best to cope…

I found unbelievable generosity from people I work with. Colleagues who realised my practical needs. A core group made freezable dinners for me, bought massage and pampering vouchers, knew when to change the conversation from cancer to fatuous dribble. Other friends offered to drive me to the hospital; reliable people who I knew would be at the end of the phone to do whatever I asked. A serious illness will reveal people’s munificence of spirit. We were inundated with cards and texts and an outpouring of good wishes. But we were surprised by the silence of some friends who didn’t get in touch or help and I find that this is a recurring theme among carers. It hurt initially but you cannot harbour these feelings for long. I admire the strength of people who phoned my husband, as opposed to texting; never an easy phone call to make to someone who has cancer. I’m not sure we would be as brave but do make the call – it does make a difference.

Family swooped in to take our younger two children on holiday and away from it all. I am thankful that my husband is not an only child! From a healthy west of Ireland family of eight, I was grateful for his siblings’ hospital visits giving me reprieve. One on one visits seven days a week creates a tension that isn’t healthy. Their visits also spared my husband staring at my cortisol stressed face.

My word of advice to carers is don’t be afraid to ask people to do things for you. I regret not doing that enough. When someone asked “if there’s anything I can do?” I should have told them could you do some grocery shopping, make some dinners, come to the hospital and meet me for coffee, bring me for a walk… These small things would have made a big difference to me.

Up until 2014 I was blissfully unaware of stress. It’s a word that has been bandied about a lot lately and should not be used lightly. It hit me about five months after my husband’s diagnosis like a brick wall. I have since discovered that stress can manifest itself in many guises and I’ve experienced quite a few of them. Suppressing your stress is not advisable; I highly recommended crying and crying a lot!! It releases stress hormones and anesthetises the pain. Granted it does ruin make-up but that’s an easy pay off!

I noticed that after the transplant, I experienced my first panic attack. It frightened the life out of me. I still, unfortunately, experience them; an unwanted by-product of prolonged worry. To try and alleviate the attacks, I have tried reflexology and reiki sessions. I find these most therapeutic and helpful. I did a mindfulness and meditation course for three months followed by mindfulness yoga. This has been life changing. It has opened up a whole new world of calmness and I try and meditate every day. A God send.

People have consistently said that I have to mind myself and I try desperately to do that and I should go away on girlie weekends to ‘get away from it all’ but there is huge carer’s guilt. How does my husband ‘get away from it all’? I wish I could take his recovery, with all its associated pain and tiredness and carry it for a couple of months to give him a reprieve. A serious illness, like cancer, will test the strength of any relationship and I can’t imagine anyone going through this on their own. They must be the loneliest people on the planet.

I find that at times I’m an emotional wreck – crying when I hear a particular song come on the radio or feeling tears catch my throat at the most inappropriate times. I dread these moments and they come without warning. Like an emotional tsunami crashing down on you – the perfect surfer’s wave.

The hardest thing that I found, as a carer, is the complete helplessness you feel. A hug or holding of hands just isn’t going to cut it when your loved one is crying in pain, foetal position, sweating out whatever infection is cursing through their body. You can’t unsee or unhear any of this anguish but you can try and thrust it to the furthest corner of your mind. Nothing prepares you to cope with this ‘new norm’ as it is complete anathema to your previous cancer-free life. However, you do manage to get through it and it’s important to note how – by creating as many distractions as possible.

I feel like I took a deep breath three years ago and haven’t fully exhaled yet. I hope we do not have too long to go before that happens. I look forward to a day where we can get back our planning privileges for the future because month by month we’re heaping loads and loads onto our bucket list! I hope by the end of this year, my husband will be finished all blood treatments and off all meds and that we can look back on all of this as a bad experience that we got through.

Cancer for the patient and the carer is life changing. We have a new filter on life and it’s a good one. It’s important to surround yourself with optimistic and fun people and to avoid, at all costs, negative and draining people who are toxic to your well-being. I think that there should be an annual ticker tape parade for anyone who has had to endure cancer – they are true warriors!

Three years on and I still can’t believe that my husband nearly died in front of my eyes had he not gone to the A&E when he had. His consultant told him when he was in remission, that he didn’t think the treatment would work! That his cancer was so advanced! I’m glad he did not show any inkling of that pre-chemo. I cannot dwell on that too much; it’s not helpful. What I can think about is the fact that I still have my beloved husband with me; it wasn’t his time to go. We have far too much living to do. He has two daughters to, potentially, walk up the aisle and future grandchildren to cuddle and spoil rotten and hundreds of rounds of golf to play!!

I still ask the question why did he get leukaemia? It still goes unanswered. His professor came back with the most erudite medical explanation possible – “you’re just unlucky!” I’m afraid that answer just sucks! But then why do others get cancer, get treatment and then don’t respond to it? They pay the ultimate price to the disease. Again, the medical answer is probably…they’re just unlucky and that just sucks too…life can be so cruel to so many.

Cancer is hostile; the devil incarnate…a complete monster who belligerently attacks good, decent people. It doesn’t discriminate. But medical science is winning because without it, my husband would not be here and I am so grateful for that.