Jan and Liz

Jan talks about her diagnosis of low-grade non-Hodgkin lymphoma and the invaluable support of her children

Liz pictured with her mum Jan

You may recognise Jan’s daughter Liz. She is a member of the girl band Atomic Kitten, is a television presenter and won Celebrity MasterChef in 2008. And it was as the family were preparing to appear on Celebrity Family Fortunes that Jan became concerned and went to see her GP.

 
You may recognise my daughter Liz. She is a member of Atomic Kitten, is a television presenter and won Celebrity MasterChef in 2008
Jan

Roles reversed

‘Looking back, what took me to the doctor seems to bear no resemblance to the lymphoma diagnosis I eventually had. I felt well but I had a sore breast, so my GP referred me to the breast clinic. I had a mammogram done and they noticed that the lymph nodes under my arm were enlarged, so I had a biopsy done.

When I went back for the results they told me that they had found nothing wrong with my breast, but were still waiting for the results of the lymph node biopsy. The news was reassuring and I wasn’t at all concerned. But where the biopsy had been taken became infected, so I went back to the clinic. I asked the nurse if the results had come back.

I had recently trained as a counsellor and think I’m pretty good at reading people, so when the nurse came back in I instantly knew something was wrong. The doctor told me I had lymphoma and would need to be referred to a haematologist and have a CT scan. I had never heard of lymphoma before, but it seemed that all I could hear was the word ‘cancer’. My sister had come with me and I watched her as she went grey.

An appointment was organised for the next day and, despite having hectic schedules, both my children insisted on coming with me. My sister also wanted to be there, as did a close friend. I had a room-full, but I really needed that support.

The consultant told me I had low-grade non-Hodgkin lymphoma. He explained that it was incurable, which of course I interpreted as ‘untreatable’. He tried to explain it to me by likening it to diabetes - something you have long term that you have to monitor and manage. We hadn’t had any time to look into lymphoma and felt this comparison was trivialising the fact I had just been told I had cancer. Over the last four years I have grown to understand this analogy, but at the time it was all too much to take in. It all seemed so complicated and we are all feeling frightened.

I was given some information and the consultant warned me about searching the internet. He explained that there were many different types of lymphoma and that I could read things that would be misleading and confusing.

In fact, despite having trained as a counsellor, I found that I was scared to look into lymphoma myself. I was afraid of what I would read and find out. It was Liz who wanted to find out everything about it and who did all the research. For me, this has been enormously helpful and, in a way, has given me permission to put my lymphoma on the back burner and get on with my life.

I found the diagnosis very difficult at first and although I carried on my counselling work for six months after the diagnosis, mostly helping people cope with bereavement and sexual abuse, I found I was really struggling emotionally. I had to take time off work with stress and to come to terms with things. But I have now changed my job to one that is less pressurised, which suits me better.

What sticks in my mind is the enormous sense of guilt I felt when I got the diagnosis. I had always been the one supporting and encouraging the family, particularly when Liz was in Atomic Kitten and had a gruelling tour schedule. And when Liz was approached to be a contestant on Celebrity MasterChef she was really reluctant because she hadn’t even used an oven. But I had trained as a chef many years before, and had always loved cooking, so wasn’t surprised she had a good palate, which proved invaluable in the competition. When she won Celebrity Masterchef in 2008, I couldn’t have been more proud. But now I feel I am causing Liz and Joe - and the rest of my family - so much anxiety at a time they should be enjoying life to the full.

I was put on ‘watch and wait’. It was explained that this was the best option in my case; holding back chemotherapy until I need it. I have to go back to the clinic every four months to have my bloods checked and to be examined.

Liz always comes with me to my regular check. We decided early on to turn it into part of a weekend, where we would go out for dinner the night before and have lunch after the appointment. Sandwiching it between two nice things makes it something to look forward to rather than something to worry about. However, we both worry once we get to the hospital. Liz tends to ask all the questions and I just have to look at her face to know if the test results are good news.

I know what to look out for, but sometimes when I feel exhausted at the end of the day, I wonder if it could be due to the lymphoma. But then I talk with friends who are the same age as me and find they get exhausted too! I also start to worry if I get aches and pains – in the past I would just think I had been overdoing it. It can be difficult to know whether these things are just normal for my age or whether I should be concerned. But it has got easier with time.

What has been the hardest thing about living with lymphoma? Well, if you ask me today, it would be finding travel insurance!’

Liz’s comments about her Mum’s diagnosis

‘When I first found out Mum had a form of cancer it was the most harrowing day of my life; I was so worried about how it would affect her. As a family we knew nothing about lymphoma and those early days were just awful. But I have found that learning about lymphoma has helped enormously – understanding the disease has made it less frightening. The Lymphoma Association is great because it provides the information you need and takes away the worry that you are reading misleading material. It’s also like having a support network at the end of the phone. I always worry before Mum’s four-monthly appointment, but so far everything has been fine and she is doing really well – and of course it is lovely to spend that time with her.’