Remembering Iris

Iris Berg

Today’s post is written by a friend of ours, Hilary Berg. Hilary’s mother died of breast cancer on 22 October 1994, 17 years ago today. I first met Hilary after she’d read Being Sarah, and she was completely bowled over by it and I delighted in her praise. She went on to tell me some of her mother’s story and I could see it was incredibly painful for her. So when I asked her to write for my blog I wasn’t sure if she would want to. But I’m really glad she has and this is a very moving and emotional piece. I cried when I read this. And I don’t mean my eyes filled with tears, I mean my face was streaming with hot, burning tears of anger as I read about the shoddy medical treatment Iris received, and another life ‘cancelled by breast cancer.’

Hilary Berg, daughter of Iris

I have to admit that when I was diagnosed in 2007, one of my initial reactions was feeling worried about the level of care I might be about to receive on the NHS. All my previous encounters for minor medical conditions were really mostly very average and consistently patronising. However, my care from 2007 onwards was excellent, not always, but the majority of my medical care has been given with dignity and respect for the patient; and I do know that it has not always been the case in the NHS. But I now know that in the late 1990s health advocates caused a shift in how the NHS treated patients, and the ‘patient experience’ has become core to how the NHS deliver their services. Not always perfect I know, but certainly improved from the time that Iris received her treatment. 

In my head I carry the names of women who have died from breast cancer, and sometimes I recite them and I remember why I do all this. Why I still write, why I still get angry, why I still talk about breast cancer. Because I want things to change. That’s why. 

So, get a tissue ready, and please read this beautiful tribute to a wonderful woman. Iris. Thank you Hilary.

“Seventeen years ago today I found myself holding a worn pair of spectacles in my hand, with smudged fingerprints and flecks of compost on the lenses. I found them on the table in the greenhouse just after the funeral director’s men had left, taking our mum, Iris with them.

And there I was, silently holding on to her gardening glasses – cocooned in the warmth of the greenhouse – surrounded by her trays and pots,  balls of string, gardening gloves, scribbled lists on scraps of paper.  Completely unable to grasp the fact that this full, warm, joyful life had, quite suddenly, been cancelled by breast cancer.

The greenhouse was always one of her favourite places. She was an enthusiastic and talented gardener. We joked that she could grow anything and she would rescue dying plants from friends, only to take great pleasure from turning them into what us kids referred to as ‘triffids’, filling whole corners of rooms. She would confidently quote Latin names, discreetly take cuttings from the gardens of stately homes and swap plants with elderly neighbours. They said she had green fingers.

But this was only one of her talents. She cooked, sewed, created complicated pastries worthy of a French chef and baked cakes for every community occasion.  When faced with death she did what only a mother would do. She baked non-stop until she filled a chest freezer with all her best creations. We cried over the last fairy cakes months after she had left us.

She was born before her time. In the 1950s this girl from a Liverpool Council House learned Italian at night-school and toured Europe on sleeper trains.  I have a photo of her at the casino in Monte Carlo wearing a beautiful white dress. More than that, she loved language and history, and politics.  And she hated injustice. As teenagers we joined her family boycott of South Africa, went house-to-house collecting money for famine-stricken Ethiopia and supported the miners. Her experience of spending part of her childhood in a Welsh mining village, then seeing one factory after another close in Liverpool, led to a level of rage at Margaret Thatcher (“that dreadful woman”) that was at times incandescent.

Most of all she loved people. When a Pakistani family first arrived in our neighbourhood in the 70s, it was to her they came. She showed them where to shop, introduced them to our neighbours. In an unfolding relationship worthy of a Mike Leigh film script, our friends turned up unannounced one Sunday with a large bag of gold – a dowry for us to look after while they were overseas. This was kept hidden under the stairs behind the vacuum cleaner and mum was too worried to leave the house for a week.

She loved children and animals, and they loved her. She was extraordinarily kind and she was funny.  An abiding memory of growing up is my parents, both helpless with laughter.  And she was my dad’s soul mate, the love of his life. They adored each other. And then one day, just as she retired from work, full of plans to travel back to Italy, to garden, to study, to look forward to grandchildren, she found a lump in her breast.

This child of the 1930s thought that the National Health Service was one of our greatest achievements. She had an unwavering faith in system.  The local GPs’ surgery had been part of the fabric of our family for three generations, the doctors playing a role in the stories of births and deaths, accidents and childhood illnesses, always with respect verging on reverence. But the system let her down. Instead of a friendly doctor she faced a stranger who did not examine her, but made her strip to the waist and hold her arms in the air; who refused her request for a mammogram because she had had one two years’ earlier; and when she pressed for another opinion, smiled and said; “Come now, women of your age imagine all kinds of things.”

Almost three months later she returned to see another doctor who sent her straight to hospital.  The X-rays and tests commenced. The surgeon said there was nothing wrong but the radiologist argued that there was.  All of it felt harsh and impersonal with no room for discussion or debate. The differences in opinion meant it was two more months before she was operated on. She had a mastectomy and her lymph glands removed, was told it had gone well. While having treatment she gathered other women around her to comfort and reassure, to encourage them. One young woman she cared for revealed that her husband had left her because of the diagnosis. Another wrote afterwards to thank her for her support and companionship. She was ill and in pain, but we all thought things were going to be OK.

Then some weeks later, mum and dad found themselves sitting in a waiting area watching a string of women leave the consultant’s room, one after another, all sobbing. Finally, they took their turn. The man inside asked them to sit then told her brusquely that the cancer had spread. She asked what could be done. He replied: “You’re 62 years old. We won’t be doing anything else”.  A nurse passed her some tissues and mum handed them back, saying: “I won’t need those, I’m not going to cry.”  It was a short conversation. Before they left she said: “What should I expect now?”  His answer? “A lot of pain”.  Years on, the memory of the conversation still takes my breath away.

And somehow this woman, who spent her whole life fighting for justice and opportunity for other people, was denied the chance to fight for herself.

It was ugly and brutal, but despite the impersonal system, the lack of information and choice, the fear – and what appeared to be an absolute lack of understanding of how people really feel in these circumstances, she somehow remained dignified and courageous. My God she was courageous.  In a world of mastectomy bras, wigs, drugs, pain and constant fear, she stuck to her chosen job of supporting other people.  And this precious, special person, who held a torch for kindness and justice, deserved better.

After the final diagnosis, my parents moved house. Dad went to the local GP, who listened and said: “But 62 is not old. And he’s wrong, we can do something.”  This is where she met the team at Clatterbridge Hospital, and started radiotherapy and chemotherapy. These were good people – caring, listening, trying to make things better. But she met them too late.

When she was unable to leave her bed, she watched scruffy teenagers from the local high school walk past every day and explained why she thought they were beautiful. She would point out the intricacies of individual flowers people brought, often her favourite Freesias. She said cancer made her appreciate the small things in life.  She took time to write to people, call them, ask how they were. She made us promise to look after each other.

As with many families, the angels in our story were the Macmillan nurses who turned up near the end. Practical, knowledgeable and empathetic, with just the right dose of humour, they kept us together.

She was 64 when she died. Protected from the worst of it by her, it was only in the last days that I realised, with shock, that she was angry – more than that, she was raging at this awful disease that had taken everything from her.

I am angry too. When she died, I did what everyone seems to do. I raised money for a cancer charity. Because of my job and my connections I raised a lot of money.  But immediately after that I couldn’t talk about it. I turned off radios and televisions if the subject of breast cancer was mentioned, couldn’t bear to hear about the heroines, the campaigns, the fun runs, the pink. I have been angry for years.

Because of breast cancer and maybe because of her treatment, Iris missed the birth of her grandchildren. She missed seeing the spectacular human beings my brothers grew into and the impact they have had on the people around them. She missed having time to enjoy with dad, and of seeing the legacy of the love she invested in all our childhoods.

I met Ronnie, Sarah’s partner, through my work and liked him a lot. Because of him, this year I read ‘Being Sarah’ from cover to cover in one sitting. I felt as if I had been punched in the stomach.

I so wished that Iris had had a Sarah sitting next to her in the waiting room. I wished I had done more to help her deal with the system, I wished we had complained, and argued and fought for her instead of accepting the authority of the experts. In my heart I know I let her down too.

Sarah shows us that it’s not only OK to question, challenge, be angry; it’s how we should be. It’s the way to change things. Since mum died my job has involved campaigning for social justice – so I truly admire all the women and families working so hard to fundraise, to make a difference. But we raise money for a cure for cancer without stopping to ask the fundamental question of why is this happening? We look for a cure while peddling potential carcinogens in cleaning products, toiletries and foods; we mix cocktails of chemicals to make things smell better, taste better, last longer. Often it is the sales of those very products that support the cause.

When I was young, Iris had a group of eight women friends who used to meet up every week – we called it ‘The Tuesday Club’. Occasionally they would go out for dinner or to the theatre. They all lived in the same street and were a similar age, and when they were together they laughed. Thirty years on, I have lost touch completely with three of them. The five I knew about all had breast cancer and four didn’t survive it. If she was here she would want to know why. She would be researching, blogging, campaigning to find out. Those women would be fighting to make sure the same thing did not happen to their granddaughters.

People who loved Iris will be thinking of her today. Seventeen years on from losing her I think things are very different now. The Internet is empowering. Knowledge is greater and treatment more effective. I know many breast cancer survivors, including my amazing Auntie who was diagnosed in her 50s. She read the first two chapters of Being Sarah and said: “This is about me.”

Iris’s legacy for her family and friends is that we are now fighters. We no longer have unwavering faith in the system. We seek knowledge, question and challenge. And the best medical professionals welcome that, working with the people they are treating.

Although she had moved away from her home town, Iris’s ashes are buried in Liverpool, in a spot she picked. Opposite a village school where she hoped she could hear the children at playtime. She said it was the best sound on earth.”