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

blog-pix

 

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.