Lesley

Lesley talks about dealing with her son’s diagnosis of follicular lymphoma and how she started to feel suspicious about her own health

Lesley with her son Richard

At the beginning of 2010 my son Richard, who was 37 at the time, found a lump in his neck behind his ear. His GP diagnosed a swollen gland.

Richard suffered from sinusitis and towards the end of 2011 had an appointment to have nasal polyps removed. When he went for his pre-op, the surgeon felt the lump in his neck and referred Richard for further tests.  

At the end of January 2012, and following several tests and a biopsy of the lump, Richard was diagnosed with follicular lymphoma.  

I can still recall receiving a call from Richard at 11.30pm telling us about his diagnosis. I felt utterly devastated and worried about him, his wife and their children.  Not only did he have a young family to support but he had recently been promoted to a senior role at work.

Because the lymphoma was in one place, radiotherapy was suggested and In March 2012 Richard underwent 3 weeks of radiotherapy.

Richard wanted to deal with it in his own way. He kept it very much to himself and wouldn’t really talk about it, although his wife and I talked to each other a lot of the time as we were worried about him. I suspect he worried too – about the treatment, about his job and young family – but he didn’t show it and coped with the treatment really well.

The radiotherapy went well and had 4-monthly check-ups, and was discharged in Apri 2015.  He has since had an operation to remove polyps from his nose. He keeps a very close eye on his health and regularly checks for lumps or other symptoms. He feels tired, but isn’t sure whether this is a side effect of the treatment he’d had or because he has a busy job and a young family.

I noticed that I was feeling increasingly fatigued. I was still working as well as helping my 92-year-old mother who lived nearby.  I found that I only seemed to have the energy to go to work and do a few essential jobs before I needed to go to sleep.

I was experiencing dizzy spells, so I had my eyes tested and was prescribed stronger reading glasses. But the tiredness did not go away so my GP took blood to test for anaemia. I was beginning to think that I had no time for myself and that my work and life balance wasn’t right for me. So I decided to reduce my working hours to 4 days a week.

In October 2013 I woke up with a terrible pain in my stomach and thought I had indigestion, so took an indigestion tablet. But I was doubled up with abdominal pain and so my husband took me to A & E.  I was in hospital for a week having various tests, including a CT and ultrasound scan. They discovered a mass in my abdomen.

I was scheduled to have a laparotomy to remove an ovarian cyst. While they were carrying out this procedure, the surgeon noticed an enlarged lymph node which he took away for biopsy.

Recovering in the hospital, I was in a room with 4 other ladies who had undergone the same operation. They were getting out of bed and all seemed to be recovering at a similar rate.  But I just could not move at all and had a blinding headache that felt like drums banging in my head. I was given really strong antibiotics which weren’t helping. I sensed something was wrong. Complications set in and 10 days after the laparotomy, which was the day of my discharge, I was told that the results of the biopsy on the lymph nodes and blood tests had shown that I had follicular lymphoma.

I was referred to the same consultant my son Richard had seen the year before. Further tests and a CT scan were carried out before they confirmed I had stage 1B follicular lymphoma.  I was put on watch and wait, but straight away started getting colds and flu which I could not get rid of.

I developed lumps in my neck and just above my collarbone which I could feel but couldn’t see. My medical team were keeping an eye on them, but said that at that stage I still did not need to start treatment. I found this a worrying time and a close eye was kept on the lumps. From January and May 2014, my follicular lymphoma went from stage 1B to stage 3B.

The medical team talked about the different treatment options, but even though I had thought about this while I was on watch and wait, it still felt like I needed time to gather my thoughts and read information and decide the best way forward for me. After some discussion and research it was agreed I would be treated with bendamustine plus rituximab (B-R).  

Going into the chemotherapy suite was a shock. I hadn’t expected so many people to be there, but everybody was treated as an individual.

I felt very emotional, frightened and alone starting chemotherapy. My husband was telling me to stay positive which led to a terrific row. In hindsight this was as a result of 2 years of worry - a release of emotions. I was also still struggling from the operation I had to remove the cysts.

The first course of bendamustine plus rituximab went well. I was given an anti-histamine before the drugs which knocked me out and I think I slept through most of it.

Through the chemotherapy, the thing I struggled most with was nausea. The first course made me feel sick, but this was worse on the second course. By the fourth month I was physically sick for 3 days. I could not keep any of the anti-sickness down so needed an injection to stop me vomiting. On a positive note, I did not lose my hair and was told this is one of the advantages of bendamustine. 

Fortunately, a CT scan showed the treatment was working and I am currently on maintenance rituximab. Apart from struggling with tiredness, I feel well.  I really enjoy my garden and find that when I feel tired, or down, I spend 10 minutes just pottering around, pruning and deadheading flowers and I immediately feel better.

I planned to go back to work after treatment, although my husband had already retired and I had only 9 months left before I could receive state pension. I spoke with my employers, who were really supportive, and we agreed I should take early retirement on health grounds.

My family were really shocked that both my son Richard and I had the same diagnosis and worried whether it is hereditary, but were told this is extremely rare for both to have been diagnosed with follicular lymphoma.    

I know that both my son and I have a different approach to life since our diagnoses and both make the most of opportunities that we may not have taken advantage of before.

Richard has got very involved in fundraising and was part of a big group who trekked in Nepal, coming back just 2 weeks before the earthquake.

And I am thoroughly enjoying life. Retiring was the best thing for me to do as it gives me time to spend with my grandchildren and to really enjoy my home life.’