‘My Daughter Tilly had just turned seven when I was diagnosed with anaplastic large T-cell lymphoma in March 2016.
My husband Frazer and I had hoped to be able to get help to explain my cancer to her, but in the end it happened in a far less planned way. Frazer was picking Tilly up from school as I was in hospital, and some of the mums in the playground asked how I was doing. Having told them about the diagnosis, we both realised we had to tell our daughter now in case she heard about it from someone else.
So rather than the formal talk, I sat on the bathroom floor with her and explained about my lymphoma. I told her what we knew, that the treatment would make me very poorly, that the strong medicine would make my hair fall out, but that the kind of cancer I had was very treatable and the doctors were working hard to make me better. We found a couple of books really helpful, Nowhere Hair and the Secret C, and used these as a way to let her talk openly about what was happening. I think it really helped her articulate, for example, how angry she was.
My illness had come on quickly at the beginning of the year. I was so exhausted, I was having to drag myself to school to pick Tilly up. I also had a cough that wouldn’t go away, a persistently high temperature, swollen lymph nodes and night sweats. I was also out of breath. I booked into the GP for a health check. I was 46 and thought they would just tell me these were symptoms of menopause. The GP thought I may have been sitting awkwardly at work and suggested a workplace assessment, but also referred me for a chest X-ray and blood tests.
Before the results of the chest X-ray were available I was rushed into A&E as the tightness in my chest got worse and I felt really ill. The hospital doctors suspected lymphoma and carried out a biopsy from a swollen lymph node in my neck. After a terrible waiting game, where the fluid on my lungs got so bad I had to have a chest drain, I was diagnosed with anaplastic large T-cell lymphoma. The consultant haematologist wanted to start chemotherapy straight away with six courses of CHOP chemotherapy every 21 days. I was ALK-negative and it was planned that chemotherapy would be followed by a stem cell transplant using my own stem cells.
I ended up in hospital after each cycle. I had infections and neutropenia and, when I wasn’t in isolation, having to visit me on a hospital ward was more difficult for Tilly. We explained how people are in hospital because they are ill, but still had to make sure she was quiet and well behaved, so that she didn’t disturb the other people. We were always made to feel she was welcome and the nurses would spoil her with biscuits! It was important to me that we still spent time together, so we would do colouring books and play games like travel Scrabble.
Once I was home, if I couldn’t do much, it was still nice to snuggle up and share books together, or sit with her and help her craft or play with Lego. One thing I was determined not to miss out on was school sports day and I made sure I entered the mothers’ race. I thought the other mums would let me win, but they didn’t! But it was great to be able to participate and show Tilly that I was still her mum.
The stem cell transplant meant that I was away from home for at least three weeks. Before treatment started we took Tilly to Build-A-Bear and she chose a teddy with a recording of my voice saying goodnight to her for when I was away from home. In fact I was away from home for a long time, initially in ambulatory care, receiving high dose LEAM chemotherapy, and then in hospital once my neutrophils became very low and the side effects too bad. While I was in ambulatory care, we went out for walks and visited museums together as a family. It was quite surreal to be doing that with the chemotherapy attached to me, and of course I didn’t go back home with Tilly and Frazer.
Frazer has his own business, a 2-hour commute away. During my treatment, he didn’t want to be too far away from home and, thanks to the support of his colleagues, was able to adapt things. Not only did he have to adjust working patterns, but had to get to grip with lunch boxes, school uniform, after school clubs and cooking - although he was already a good cook! Friends were also brilliant and put together a rota to pick Tilly up from school and give her play dates.
When I knew I would be having a stem cell transplant, I did a manual for Frazer. It felt important to me to still be involved - some might say I am a control freak! I wanted to pass on little things - like what her favourite breakfast is, when her friends’ birthdays were. I wanted life to be as normal as possible. But some things that I would never have allowed started creeping in, like chocolate in the lunch box, hair washed less often, toe nails uncut. Throughout treatment it felt important for us both to take her lead. So, for example, when I was away from home having the stem cell transplant, she didn’t want to Skype or Facetime as she found it too upsetting. I sent her little postcards and text messages instead.
I think the normality of school was really helpful for Tilly. The teachers and home link workers were aware of the situation, and allowed her to take days off to visit me and to bring in her teddy if she needed to. It was quite low key generally, but I know they would have supported us if we had needed any additional help.
I knew I would lose my hair and eyebrows and we talked about this. Initially Tilly said she wouldn’t speak to me if I had no hair. When my hair began to fall out, I told her she could cut it for me. Tilly thought this was great fun and something she loved doing. Once it was really thin, I let her use Frazer’s electric razor and remove the rest of it. Involving her in this really seemed to help and as my hair was growing back, she liked stroking it – I suppose we all found a new normal.
When I came home from hospital, I was still very ill and fatigued easily. I couldn’t do very much, which really wasn’t like me. I love having Tilly’s friends to play, but that wasn’t possible for a while, as I was so susceptible to infections. I am nearly a year post stem cell transplant, and I am back to work and, although I work from home most of the week, the one day I spend in London is really exhausting.
Cancer has changed our family. But being a mother of a young child has really helped my recovery. She gives me a reason for getting up in the morning. She makes me laugh every day. The stem cell transplant is a tough treatment but I am so grateful that I’ve got more of a chance of seeing her grow up.’