Facing up to the truth about life before death

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.