My mother in law died yesterday. She was three days short of a new year and three months short of her 81st birthday. Nothing remarkable about that one might say – death is as natural as birth, and as commonplace. But all this unfolded in the space of 28 days and all under the shadow of cancer that reduced a healthy, vibrant senior person living an independent life in Spain to a bed-bound invalid.
The news of her illness came as a shock. She was supposed to come to Finland on her own steam in 11 days time to spend time with her family, to make Christmas, to help with the children’s care over the long holiday. Then a dispatch came from a translator announcing her illness, a suspected stomach cancer. Further tests were needed. She had been in the town’s university hospital already for days largely alone, visited occasionally by friends, treated by indifferent nurses and absent doctors, none of whom spoke English well. It must have been a desperate, lonely time.
My wife with her typical energy booked a flight for herself and her brother the same evening and left the next day. The sight that greeted them did little to give confidence for the future. She lay in a narrow bed, her hands tied by bandages to the side bars. Apparently, she had been ‘restless’. Her arms and hands were bruised from clumsy, unpracticed needle insertions. A young trainee doctor explained the situation – advanced cancer. They were not going to treat her. Even the simplest thing like going to take a shower required the permission of a doctor. My wife took her there.
There was little else to do but bring her back to Finland but even this proved to be a bureaucratic maze lasting over a week. She had residencia in Spain and despite the fact that she continued to pay taxes to Finland from her pension as a former teacher every month, she would have to reapply for a national insurance card and change her address to our own. As with everything in this life, protocols must be observed. Christmas was turning into its own kind of nightmare.
More vital than anything else, there would need to be proper transportation back to Finland. Commercial flights were no longer an option and by turning 80 – a happy celebration earlier this year, no insurance would cover the ambulance flight.
My wife and brother pushed through, made the arrangements and accompanied her on the flight. Thanks go to them and the professionals who made this happen. The alternative would have been a lonely isolated death in a foreign hospital.
She was transferred by a waiting ambulance directly to the hospital in Vantaa. We all had hope. It was her greatest wish to spend Christmas at home with us. There was still hope or denial of the truth that chemo could begin when she had been stabilized. Ironic that still today, the options for cancer are to cut, burn or poison the patient back to health. You must be strong enough to endure the cure. This was never an option.
Nobody informed us of the true gravity of the disease. Understandably nobody could give an end date but then again the hierarchy of the Finnish medical system leaves much to be desired when communicating to near relatives. Nurses did an orderly job attending to her. Only through them did we hear that she was not to be resuscitated owing to the nature and extent of her cancer.Had this been communicated to the patient? We weren’t sure.
One phone call from the ward doctor outlined the facts: a stomach cancer with metastasis to the liver and possibly to the pancreas. A liver biopsy could not be performed owing to her weak condition and the possibility of an irreparable bleed. All we could do was wait.
As weak as she was, Terttu was still able to talk. We shared a quiet few hours on Christmas eve watching the declaration of Christmas peace from the town where she was born and raised. Her daughter and granddaughters painted her nails. Our special needs daughter Cara ate the Christmas dinner she could not, laughing happily to herself. Outside a gale was blowing rain against the window. The next day we brought gifts.
Visits from other family members came and passed. She grew tired easily and her words became less and less clear. On Boxing day, her condition collapsed. She could not be roused from her sleep. Her breath became laboured. Pain meds were prescribed and administered. For the first time, at our request, a doctor appeared in her room. This was to be expected, he explained. No, there was no possibility of further medical intervention. At some stage, the condition of patients at this stage of cancer collapses… My wife, defending her mother to the last, challenged his authority and his indifference. To my left, the nurse smirked.
The next day we came early. Doctors were on their rounds and by request to the nurse we were granted a meeting with the head physician who took us to her room. For the first time we were told, despite the initial appraisal that this was pancreatic cancer. It had metastasized to the liver and possibly elsewhere. It was the kind of cancer that is difficult to diagnose, has often spread by the time it is diagnosed (quickly and asymptomatically) and notoriously difficult to treat.
A biopsy would serve no function, other than an academic one, we were told. Her liver function under the stress of the secondary cancer was shutting down. Yes, we could increase the morphine for the pain, yes, a transfer to a hospice was possible. It was a question now of days, possibly a week.
This was the day before she died.
December 28th was a bright, clear day – the kind where the sun hanging low on the horizon burns into your retinas. One last ignominy awaited us. A letter from Kela had arrived requiring the signing of a consent form from the patient to enable matters to be handled on her behalf. There was no negotiating in spite of the facts. Protocols must be observed.
We went to the hospital room. We elevated her bed and guided a pen to her hand. Gasping for air, her eyes opened with a look of recognition, bewilderment, and despair. She was fading out of view before our eyes. Further morphine was administered. Her breathing calmed. Matters had to be attended to. We would return later in the afternoon. In our absence, she died.
My wife and I returned and spent an hour by her side. At times, in her stillness, it seemed as if she could still be breathing. Did I imagine that with our last look towards her, her face had become calmer, more peaceful?
What can be learned from this? The first is if you live abroad in Spain, expect no special treatment when you are up against it. Second, make sure your paperwork is in order. Bureaucracy is indifferent to suffering. Third, expect solid care from the medical profession in Finland but poor communication. I’m sure there are many notable exceptions to the rule but it was our impression that if you don’t ask, you don’t get. As a result, we lost valuable time for further care options.
Regrettably, doctors here are much like generals far behind the front line, directing strategy and treating the disease but not the person. There is a remarkable sense of detachment.
My wife and I have been seared by the experience we have gone through – the sense of loss is palpable. It was all over so quickly. I don’t seek to blame anyone and I certainly won’t hang this one on 2016. Nevertheless, we look to 2017 with the knowledge that somebody very important has gone from our lives. Of course, we are no different from other people at this age with old parents but it doesn’t make the pain of separation any easier.
Terttu lived as she died, with little fuss or calls for sympathy. She loved her life in Spain and made the most of her retirement years, pushing it to the outer limit of her ability to remain there. We must celebrate her choices, mourn her loss and now learn to live without her.