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.