Ann's story

Caring for someone who has lymphoma can be a very challenging task. Ann Clausen, whose husband Peter lost his fight against lymphoma in February 2002, shares her experiences. Ann and Peter were members of LBF's Rotorua support group.

"As a carer you run a whole gamut of feelings from sad, angry and upset to feeling at peace with the situation.

The carer sees the illness from a very different perspective to the patient, as they witness all they go through without physically experiencing it. Peter and I were fortunate enough to have our strong Christian faith, the support of our three married daughters and family and friends, from the day of diagnosis in 1997 through to his passing.

One of the worst moments for me was coping with Peter's diagnosis of non-Hodgkin lymphoma and his admission to hospital. Dr. Humphrey Pullon our haematologist became, as one of our daughters said, "a very dear family friend" over the course of Peter's illness.

The initial diagnosis for Peter did not look good, but after much discussion we decided to see how his body would respond to light chemotherapy. At about the same time as the treatment started we began keeping a journal in which we both put down our feelings, as well as recording how the treatment was progressing and Peter's blood counts. We found ourselves talking a new language, a result of the treatment, and terms like neutropenic and autologous became second nature for us and gave us instant rapport with other patients and carers.

We started to take ownership of Peter's illness as we shared our feelings with each other. We were also very open about the illness with family and friends, all of whom we really needed in the bad times. Not long after Peter's illness I learnt to drive after my daughters asked how I would get their father home from the hospital following treatments. I was not confident about learning how to drive but knew I had to do it. And since then it has opened up a whole new world for me.

On one occasion a friend visiting Peter whilst in the hospital asked how I was doing. Without thinking I said Peter was ok, that it was "a good day". The friend stopped me mid sentence and repeated the question. I had become so involved with Peter's illness that I hadn't heard the question properly and was surprised to find that people were also concerned with how I, the carer, was coping.

In amongst the seriousness we also managed to have a lot of laughs. On one occasion we were talking about Peter's hair loss as we neared Cambridge, on our way home from Waikato hospital. He decided he wanted to get his head shaved and went in to a bookshop to ask where the nearest barber was. I could not and would not go with him. About twenty minutes later he re-appeared and took his hat off to reveal his shaved head. Unbeknownst to me he'd been taken through the back of the shop by staff to a nearby barbers. We both laughed because it seemed to me that he'd had his head shaved in a bookshop.

Following the initial chemo Peter was put on a stronger regime of treatment for the next eight months. During this time our oldest and only granddaughter learnt to walk in the hospital and our second oldest daughter spent nearly the whole of Peter's treatment in hospital with severe morning sickness, so instead of returning to Rotorua we headed to Auckland in between treatments.

Peter was considered for an autologous stem cell transplant and we had a successful two years following this treatment where he was able to return to work as the manager for a local nursery. Unfortunately, it wasn't to last and he came out of remission.

As a family we did lots of things together which have left us with many happy memories. Fortunately, Peter was able to walk our youngest daughter down the aisle and have fun with five of our grandchildren before his passing. And whilst he didn't get to personally meet the family's newest addition he knew his sixth grandchild was to be a boy, having seen a scan the day before he passed away.

Throughout Peter's illness we were grateful for the support we received from friends and medical staff at Rotorua and Waikato hospitals and the Leukaemia & Blood Foundation. Taking ownership of Peter's illness and finding out all we could about it from the outset made coping with the experience a little bit easier."

If you are caring for someone with leukaemia or a related blood disorder and would like someone to speak to, contact one of LBF's Support Services Coordinators on 0800 15 10 15.