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Pat talks about living with follicular lymphoma, coping with peripheral neuropathy and the importance of listening to your body

Pat with her husband

‘In 2000, at the age of 56, I felt absolutely fine – I had no suspicion at all that anything was wrong with me. I went for a routine mammogram where they noticed enlarged lymph nodes under my armpits. They dealt with it immediately, referring me to the haematology clinic that same day. The haematologist told me that they were fairly sure it was lymphoma, but that further tests would be needed to find out which type I had.

I had to wait for the results of a biopsy which confirmed I had follicular lymphoma. Because my lymph nodes weren’t causing me problems, I had no other symptoms and my tests didn’t show lymphoma in my internal organs, it was explained that I would be put on watch and wait and the doctor anticipated this would probably be the case for 2-3 years.

I felt numb. I didn’t know how to feel. All I could think was that I wasn’t ready to die. I still had a lot to live for – a wonderful husband, a wonderful family and three wonderful granddaughters - two of them were 6 years old and one was just 3 at the time. I didn’t want them to have to see their grandma being ill and I really wanted to see them grow up.

Getting everything sorted

From the start, my husband has been an amazing support. Once I received the diagnosis we talked about everything under the sun. I was frank and honest with him and talked about everything, right down to funeral arrangements. I wanted to plan how I would tell my two sons about the lymphoma and had a real urge to be organised. Strangely, I still recall one of the first things we did was get rid of 39 leylandii trees in our garden – something I had wanted to do for some time! I started doing all those things you never get around to, and accomplished far more than I would have done otherwise. I felt I was on borrowed time. That was 14 years ago.

We would do things as soon as we thought about them – ‘Let’s go for a run’, ‘Let’s have a picnic’, ‘Let’s go on holiday!’ We didn’t put anything off. Maybe it was being busy that helped me come to terms with the lymphoma, but all I could do was deal with it in the best way for me.  

The end of watch and wait

Just 1 month short of 3 years later, the lymphoma started to affect me.

Towards the end of 2002 I developed a sore back, which at first they didn’t think was connected to the lymphoma. But the back problems became so bad that I could barely walk and I was losing weight rapidly. I knew something wasn’t right and I was going downhill really quickly.

I started CHOP chemotherapy, but felt extremely ill. I kept getting infections; I had lost 5 stone and could barely walk anywhere. I was spending every third week in hospital on antibiotics.

Losing my hair

I knew I would lose my hair, but it was still a shock when I woke in the morning with hair on my pillow. So I asked my hairdresser to just take it all off. This was a bit of a shock I can tell you, but easier for me to deal with. At the hospital was a wonderful Macmilllan Specialist Nurse who was brilliant. Not only did he talk over my worry about my granddaughters knowing I had no hair, but he also helped my husband by giving him leaflets and talking over worries he had. Of course, he was quite correct, I did not have any problems with my girl,s as children accept things at face value and they enjoyed trying on my wig.

I was pleased when my hair came back red – the colour it had been before - and in fact when it first grew back it was curly, which I liked. Unfortunately the curl didn’t last though.  

I knew it was the chemotherapy making me feel so ill, not the lymphoma

During treatment I felt like a real fighter. I felt I could deal with most things and had a strange confidence that I would get over it. But it helped me to think that it was actually the chemotherapy that was making me feel so ill and not the lymphoma itself. It helped me to  think that once the treatment finished, things would start to improve. My care was outstanding, but towards the end I had really had enough.

My taste vanished. Even water tasted foul; chocolate tasted overly sweet and food generally tasted horrible. On our wedding anniversary my husband asked what I wanted for a treat. I was on the hospital ward, together with two other patients. I told him I really fancied fish and chips, but pointed out that he would need to offer it to us all. The staff said it was OK for us to have a fish supper and I can still recall how fine that meal tasted. I’m not sure the smell of the fish was so popular with everyone though!

I found I had friends I did not even know I had and my husband was rushed off his feet looking after visitors and arranging flowers.

Peripheral neuropathy

The lymphoma returned in 2008 when I discovered a swelling under my left armpit. A CT scan showed that the follicular lymphoma had come back. The chemotherapy I was receiving led to my having peripheral neuropathy. Apparently one of the drugs – vincristine – causes this and as it got worse, my treatment needed to be adjusted because the peripheral neuropathy became so bad that I could barely feel my hands or feet. I could not lift a kettle or open a tube of toothpaste. I love bowling, but could not possibly have managed to hold the ball. I would try to complete a crossword, but couldn’t write well enough. The peripheral neuropathy lasted for quite a few months, but it gradually improved and I now have very few problems with it; just a coldness in my toes. My hands are fine now.

Maintenance, check-ups and knowing what to look for

The lymphoma returned in 2008 when I discovered a swelling in my left armpit. A CT scan showed that the follicular lymphoma had come back and I had another course of treatment.

Five years after my treatment I was put on maintenance rituximab and have needed no other treatment since then. I have check-ups every 4 months and feel I am doing wonderfully well. But I am realistic and know it will come back, and know to look out for lumps, tiredness, sweats, stomach problems. The best piece of advice I was given about what would alert me to anything ‘suspicious’ was ‘Listen to your body’.

Lymphoma has changed my life

Being diagnosed with follicular lymphoma did change my life. It changed my attitude to what is important and made me think carefully about what I want out of life.

One of the things I found invaluable was being able to speak with someone else who was also on watch and wait for follicular lymphoma. That is why I became a buddy for Lymphoma Action.  

Most people think I am cured, and knowing that I will never be cured has been a really big hurdle to get over. When I was on treatment and feeling ill, I felt negative about having lymphoma, but I find it much easier to cope with when I am feeling well.    

Everyone copes in a different way. All I would say is, don’t worry about what others think. I certainly don’t think of myself as ill and prefer people to think I am someone full of go.

My wonderful grandaughters are now 20 and 17 and I am now 70. I am back to bowling, eat lots of wonderful food and despte the follicular lymphoma, the last 15 years have been full of pleasure. In a way this has been heightened because I still feel I am on borrowed time. I certainly don’t take life for granted in the same way I used to, and really appreciate everything I have got.’