How does a mum tell her three adoring sons that she might not get better?
Mum-of-three Louise Metcalfe, from Ballyclare, who was diagnosed with Non-Hodgkins lymphoma in 2010 tells Marie Foy how Cancer Focus NI's family support service helped them during their darkest days
Louise (38) discovered she had cancer almost by sheer fluke. Luckily it was diagnosed early and today she has successfully come through chemotherapy and is feeling well.Cancer, she says, changes your priorities and while husband Colin (41) and sons, Eoin (13), Jack (9) and Thomas (4) were always at the centre of her life, family time suddenly became all the more precious.
Louise is fortunate to have good family and friends around to give practical support and comfort but she was naturally very worried about the long-term impact her diagnosis would have on her children, who were 11 months, six and nine at the time. "As well as the stress of coping with the cancer, I had to give up work so we became a one-income family, but it was much more important to focus on building memories and spending time together," she says.
Eoin, Jack and Thomas are lively young lads with inquiring minds and they had a lot of questions which their parents sometimes struggled to answer.
Louise was worried that the older boys in particular were bottling their feelings up. The couple decided to seek advice from Cancer Focus Northern Ireland, which has a family support service that helps children cope when a mum or dad has cancer. The family shared their story, introduced by Kylie Minogue, on BBC's Children In Need and Colin and the older boys were in the London studio audience.
"I was diagnosed in September 2010 after I was admitted to Antrim Area Hospital with suspected appendicitis. I was given an endoscopy and cell samples were taken from my stomach. I was discharged on a Sunday and the next day I got a call to come and see the consultant, but I didn't twig that anything might be wrong. Colin dropped me off for the appointment and went to the supermarket. The waiting room was packed but my name was called almost immediately, and I still didn't think anything was wrong.
"When the consultant broke the news, I couldn't believe what I was hearing. I was so overwhelmed by it all my first thought was that I would be dead by Christmas. It sounds melodramatic and I suppose I can be a bit of a drama queen, but in my head I thought 'This is it'," Louise recalls.
"I had six three weekly cycles of chemotherapy at Laurel House at Antrim Hospital spread over about six months – the staff there are amazing.
"In between chemo sessions there were regular check-ups and blood tests, so it was pretty full on.
"I was concerned about how the children would react to me losing my hair. Eoin said he never wanted to see me bald, so I agreed to wear a wig or scarf all the time. "When my hair really started to fall out Colin took the clippers and cut off the last little bit. When he saw the wig Eoin said he'd take a peep and decided I looked all right, which was a relief."
Sadly Colin had to perform the same hair cutting ritual for his mum, Molly, who died a few weeks ago after her breast cancer recurred.
Louise finished treatment in February 2011 and in June was told she was in remission. "In March last year I had terrible trouble with my stomach again and, of course, the fear was that the cancer had returned. I had a biopsy but it came back clear. Eighteen months later I'm still alive – I have a hernia, but I'm here!"
During the worst of the Metcalfes' ordeal, Cancer Focus' family support workers Rachel Smith and Cherith Cousins spent many hours with the boys, encouraging them to express their emotions and explaining some of the facts about cancer in a way they could understand. Rachel also spent time with Louise and Colin.
"I had a baby just over a year old, I didn't know what the outcome was going to be and was really worried that if I died, Thomas wouldn't have any physical memories of me," Louise says.
"I wanted to write a letter to the boys and sat up 'til four in the morning agonising over it – Colin did too. It was very emotional. In the end it was a letter you'd give an adult, not a child, and I didn't know what to do with it.
"Rachel suggested the Cancer Focus Writing for the Future project. One of the charity's volunteers spent time with me over six weeks and kept everything I wrote in a box. She took it away with her and so I didn't need to think about it until the next time we met. It was one thing off my mind – I found it really helpful. I still have photos and a few things to put in the box but the narrative is done, something handwritten by me. It's something that the boys will have from me forever," she explains.
"I'd been avoiding questions from the boys. How do you explain to a six-year-old what chemo is and why you have no hair? Eoin would ask 'What happens if the treatment doesn't work, what if you die?' and I didn't know what to say. Rachel was able to help with that."
Eoin and Jack took part in the Cancer Focus CLIMB programme (Children's Lives Include Moments of Bravery) where they met other boys of a similar age in the same situation.
"They got oodles and oodles out of that. I hadn't realised how isolating it was for them – they didn't know of any other children at school whose mum had cancer," Louise says. "After my diagnosis a lot of the normal things stopped. The boys had had nine months which were very home focused. I couldn't take them swimming any more, their friends came round less often, we had no day trips. I just didn't have the get up and go.
"Then Eoin went on a CLIMB residential week in Cornwall. He had a ball. He met children whose parents had died and for the first time he realised they were still able to laugh and have fun.
"He told me he could see they were ok, if anything happen to me, it would be hard but it would be ok. It hurts to think of the children thriving without me, but I was pleased he had the maturity to realise that. He seems to have more confidence now.
"Jack, who was struggling and could be quite aggressive at times, worked with the charity's art therapist Joanne Boal, which helped him enormously. He didn't have the vocabulary to express how he was feeling and art gave him space where he felt in control. He drew, sculpted, and made a treasure box and a glitter grenade which exploded in the back of the car making an awful mess. Thomas was just too young to know what was going on."
Colin, a photographer and electrician, says: "There were about 48 hours when I thought this is the end of life as we know it. I thought, 'How will I manage three nights on night shift when my wife isn't here?' But I knew that with that attitude, we would never get through. I decided not to dwell too much on the negative and take each day as it came.
"It was a very tense time but I put my head down and got on with it.
"We had great support and had a weekly timetable to get through. But when Lou's treatment was over and she'd had her last battery of tests, I was just totally exhausted and ended up taking a month off work to recover. I didn't have any energy left.
"Rachel was an angel and so generous in her heart, her spirit and her time. She made a real difference to how we were able to cope."