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 postponed 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.