Facing up to the truth about life before death

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A few months ago I had a medium- to long-term future, but now I don’t – and coming to terms with that has brought many challenges.

There have been many articles in this supplement written by people who have been diagnosed with life-threatening illness.

They have, without exception, been courageous, brave and inspirational.

However, as far as I know, few, if any, of the writers have dwelt on the thorny truth that for some of us, there are no cures and with the diagnosis comes the reality that we are beginning our final journey towards death.

For those of us who have been travelling with the certainty of a future, this is a stark deviation from which there is no change of route, no calm reassuring satnav voice offering us the choice to “re-calibrate”.

Often, as in my case, even if my treatment works, it is likely to prolong my life for only a brief period, so I do not have an extended period of time in which to prepare myself.

So where do I turn for assistance?

My family and friends are incredible, but are coping with their own reactions. Besides, there is the obvious truth that none of us has done this before. I believe it is from life’s experiences that we gain knowledge and wisdom.

Helpful literature 

I know that the wisdom is out there within the medical, religious, armed forces and psychological professions, but what about those in the humdrum of everyday life?

Death is part of the reality of life. Most of us have encountered it somewhere along our life’s journey but there is a reticence to speak of our experiences.

For every other major life event there is advice, debate and discussion on offer. For entering life, there are libraries of books on the process of childbirth.

Advice on how to prolong life, survive surgery and stay young is prolific. Yet for the event that is a certainty for all of us, the leaving of life, there is a dearth of helpful literature and information.

It seems there is a taboo on open conversation, discussion, humour and practical advice. Fear silences us.

When talking about dying and death, our vocabularies become limited. We have to borrow words. If I had written down the number of times that I have been told I must stay “positive” I could have filled an A4 notepad.

It is, apparently, important to “fight” and “battle”. I have been told that if I have sufficient faith, God will heal me. I choose to remain silent as to what I believe He wants for me. (He and I are having our own discussions.)

No solution 

Why is our mortality such a shock?

I suppose we are so used to finding solutions to every problem for our busy lives that in the face of something that has no answers, we are overwhelmed and silenced.

Mortality so hard to grasp 

But why? We all know that there aren’t cures for every disease. Death happens, yet our own mortality is so very hard to accept. I am finding it almost impossible to grasp. However, if we could share a bit more honestly and were open to learning from each other, I’m sure it would help.

On that basis I offer the following nuggets of wisdom I have gleaned in my short journey so far. 

Ten tips I am working at to make the last portion of my life bearable:

  1. Develop a dark and wicked sense of humour. Fast. You are going to need it to “do battle” with the Irish healthcare system.
  2. Extend your powers of imagination. When you are trying to sleep scrunched up on a trolley for a second day, waiting for a bed with your legs bent at strange angles, pretend you are on a long haul flight to a lovely holiday in Africa or South America. The physical discomfort and the surrounding din are the same so it’s not hard to trick the brain. I’m serious. It helps.
  3.  Count your blessings. For me, they have been multiple. The meals, flowers, cards and messages of love. Often the people one least expects, become champions. Every small gesture, kind word, sunny day, smile, and moment of laughter is a gift. Celebrate them.
  4.  Immerse yourself in the love that surrounds you. I have been completely overwhelmed by it. I am deeply blessed by the love of my husband and family but the love of friends and acquaintances is amazing. My children’s friends have flown home to give me a hug and express gratitude for my part in their lives. A group of friends in France financed their pastor to fly over and spend time with me, others sent a parcel of French food and goodies to sustain me, another arrived from France with a suitcase of gifts from friends and neighbours. English friends fly over at the drop of a hat. Dublin friends offer me their precious time to drive me to hospital and keep me company for the sometimes three- or four-hour wait for treatment. Hard seats in crowded waiting rooms are no fun. Candles are being lit and countless prayers offered on my behalf. Cards and emails arrive daily. Others ask repeatedly what they can do to help. It’s incredible.
  5. Learn to ask for that help. This is one I’m finding difficult but friends keep telling me what a privilege it is to do things for me. How amazing is that?
  6. Recognise how hard it is for other people. Especially when they say crass things and get it wrong. They mean well. It’s tough for everybody. I am trying to be kind and non-judgmental but am having to discern between “real” conversations and concern and the ghoulish brigade who feast on the dramatic element. This crowd is to be avoided. Time and energy are the two things I don’t have and are too precious to waste.
  7. Learn humility and trust. I’m learning. Hard for me as a control freak used to being in the driver’s seat, the matriarch of a big family and used to co-ordinating and decision-making at work. Suddenly, I am the patient being told what to do. I have nose-dived into a deep and strange pool where I can control nothing and know little and it’s hard not to feel like I’m drowning, unless I learn to trust the people holding the life belts. I have amazing people holding mine. My consultants, Helen Enright and Karen Murphy, my specialist nurse Joy Lewis, the nurses in the beautiful new oncology ward, but especially those who work in the noisy chaos of the St Anne’s day ward of St Vincent’s Hospital, belong to a very special band of sisterhood. Incredible women.
    My GP Dr Paddy Duggan and Dr Kumar in Vincent’s are men whose commitment to their jobs is to be deeply respected. When I see Dr Kumar is on duty, I feel safe. My life is in all of their hands. I am humbled by their knowledge and desire to give me the best quality of life possible.
  8. Beware the internet. I refuse to look anything up with regard to my disease unless it’s from a website recommended by one of my medical “team”. I have seen friends terrify themselves with information gleaned from Google about conditions they think they might have. I know what I have and am quite terrified enough with the information I currently possess to want to know more from sites which may not provide accurate facts. Besides, it seems that even the reputable websites can get it wrong.
    Apparently, my condition (one of a variety of myelodysplastic syndromes or bone marrow cancers) rears its head in three to four people in 100,000. The average age of these unfortunate few is 72 and it mostly affects men who have been heavy smokers or who have been exposed to radium or some unpronounceable chemical.
    Apart from having a bad back, I am (or was) a fit, slim, 58-year-old woman who, apart from a flirtation with Gauloises Disque Bleu in my college days, has never smoked. The only exposure to chemicals I have knowingly had has been to bleach when I clean our bathroom, to oven cleaner (on the rare occasions I brave attacking our oven) and to the smoke from our bee smoker when we work our beehives. I have never had to have radium treatment, thankfully.
  9. Prepare for isolation. I was completely unprepared for the cabin fever that I have experienced and for the loneliness of being excluded from “normal” life. Having worked all my adult life, the change of life space and pace has been marked. Instead of going out every day to work alongside cherished office companions, on the days when I am not attending or in hospital, the hours can be long in an empty house. I have to turn down offers to socialise with groups of friends due to the risk of infection; busy shopping centres, libraries, sports centres, cinemas, theatres and public transport are out of the question for the same reason. 
    I miss my interactions with my French class friends, my hydrotherapy companions and my book-club buddies.
    My neighbours and friends are superb and pop in and out when they can but have to stay away at the hint of a sore throat or upset stomach.
    However, for the first time in my life I have begun to enjoy TV and am enjoying catching up on box sets, much to my children’s amusement. Radio has always been my companion but internet radio is incredible. You can tune in to so many different stations and travel to places in your mind, as you snooze in your chair. Yesterday I listened to a Tanzanian radio station and went to Dar Es Salaam again where we lived for the early years of our married life. Magic.
    Setting oneself mini-tasks to complete, helps. I love making things so am setting myself projects to make Christmas presents, complete tapestries for friends, and knit baby clothes for my unborn grandchildren. Some jobs can only be completed in small doses. Compiling family photo albums and sorting through my children’s memorabilia reduces me to a raging, weeping heap.
  10. Take out long-term serious illness cover. We didn’t. Having a terminal illness is expensive. We have been saving hard over the past few years for our retirement so I have no hope of a medical card.

My husband needs our car for work so if I need to go anywhere independent of family or friends or get home from hospital on my own, it involves an expensive taxi. I get cold easily so need heating on during the day. I can be wobbly going up and down stairs so we need to put in an additional stair rail.

I no longer have the energy to do housework and am blessed with a wonderful helper who comes to help me clean the house every week but she needs to be paid.

If I manage to stay at home as I deteriorate, the list of adaptations to the house will grow and there will be other things I will need. I am grateful for my workplace’s sick pay and the Social Welfare cheques, but they don’t make up for my sudden lack of earnings and the hidden costs of being seriously ill.

Three years ago, I had major surgery on my neck to remove a collapsed disc that had been pressing on my spinal nerve and compromising my mobility. I vowed that if I survived and got my mobility back, I would never again take life for granted.

I haven’t. There hasn’t been a day since when I havent given thanks for the joy of living. Learning to live “mindfully” and in the everyday has enriched my life enormously. However, it is a myth that living mindfully stops one thinking about the future.

On the cusp of a new chapter 

Ours was within reach and we were so excited about it. We have two grandchildren on the way. Retirement in our beloved France was a reality. Our youngest child is launching herself into independent adult life so, after 33 years of child-rearing, that phase of parenting is nearly over.

We were on the cusp of a new chapter of life. There are no words to describe the loss and grief of knowing that I will not be part of it. A few months ago, I had a medium and long-term future, now I don’t. I’m not alone.

It could be you tomorrow so let’s loosen up a bit, shall we? Let’s be realistic. “Staying positive” may help everyone else feel better but when the prognosis is anything but, it can actually feel dishonest.

Let’s try to be a bit more honest and start talking about this thing called death and learn to treat it as a reality so that we can prepare ourselves through shared experiences and common wisdom.

I have travelled all my life but this is the hardest and loneliest journey I have ever made.

I had thought it was a journey I would be taking many years hence, so had never taken time to consider what I would need for it, or the routes it might take.

I could do with a guidebook or two or some help in acquiring the skills I am going to need as the going gets tougher. Anyone got any ideas?

‘Facing up to the truth about life before death’ was originally published in the Irish Times on 29 January 2013. It is republished with permission.

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