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.
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.
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.
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.
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.