Clare

Clare shares her story of follicular lymphoma and explains that with or without it, she won't just wait for life to come to her. Her lymphoma experience has led to her being recognised for her volunteering work. 

Picture of Clare

In 2010 I noticed a swelling in my abdomen. Because I have fibroids I just thought it was them. But I found I was uncomfortable, particularly around my waist area and it hurt when I sat up. I mentioned this to my neighbour and we agreed I should visit my doctor.

My GP arranged for me to have a colonoscopy which was inconclusive, so an ultrasound scan was planned, followed by a CT-guided biopsy.

Then it was a waiting game, while the slides were sent off to be examined for an accurate diagnosis. After around two weeks, I was told I had follicular lymphoma

I was to have treatment straightaway in the form of R-CHOP chemotherapy followed by two years of maintenance rituximab.   

My life started to revolve around three week cycles.  Week one I felt really terrible, week two was a bit easier and week three felt like party time.

I avoided planning anything for week one as I felt incredibly tired. I avoided sleeping in the day because I didn’t want to ruin my sleep pattern, but I couldn’t have coped with doing very much.

My hair started to come out in handfuls, so my neighbour came over and shaved my head. I would have found it more distressing seeing it disappear in handfuls than taking control myself and removing it. In fact, although I always covered my head, usually with a beret, I wasn’t devastated about losing my hair.

I had a PET scan before treatment started and then CT scans to ascertain how the lymphoma was responding. I was thrilled to hear that the lymphoma was responding to the treatment and the scan at the end showed that the tumour had shrunk by 95%.

I decided to try out a support group. Although I went along with some trepidation, from that first visit I have found the group really supportive and have made many new friends. 

Having lymphoma has totally changed my life. I'm a great believer that you can't wait for life to come to you. You have to go out and make new friends and do the things you want to do.

I get involved in volunteering at the Macmillan Information Centre at a local hospital and am a buddy for Lymphoma Action. I have also spoken at a Lymphoma Action conference. I was delighted to be awarded a Beacons of Hope Award for my volunteer work as a buddy, ambassador and at my local support group.

I would like to thank my medical team for the wonderful treatment I have received, which has meant that I am here today to enjoy life with my sons and to watch my three amazing grandchildren growing up.