Penelope

Penelope talks about her diagnosis of follicular lymphoma and coping with peripheral neuropathy and hair loss. 

Penelope

I first realised something was wrong in March 2021. I am 74 and had been very active and generally well. I started to get strange cramps between my knee and hip, which were really painful at night. As well as the cramps, I had a pain that started in the middle of my back and moved round into my rib cage. I thought I must have caught a nerve in my spine and that the problem was actually to do with my back.
 
My left hip was also occasionally giving me pain, but I put off contacting the GP because I thought it was not urgent and that they would be too busy because of COVID. It never occurred to me that it might be something serious. 

After about 10 days I was exhausted with the pain, so rang the surgery. I was given a telephone appointment a week later and the doctor suggested I see a physiotherapist the next day. By the time I had this in person appointment, I was losing my balance and walking strangely. I also had a numb feeling down my back and my legs and feet were going numb. I was told it would be a blue light emergency if I lost control of my bowel or bladder.  

I had an MRI and CT scan, followed by a biopsy and PET scan. Within a week I received a telephone call saying I had grade 2, stage 4 follicular lymphoma. I was told I had a mass around my aorta which was compressing the nerve in my spine at the junction it split and went down my legs and this was the reason I was experiencing the numbness.  

I didn’t research follicular lymphoma. I realised it was a complicated disease, and everything felt overwhelming, so I put my faith in my medical team. In truth, I don’t remember much of the conversation, but I do recall being told they were planning to start treatment with chemotherapy and steroids straight away. I clung on to that at the time and didn’t ask many questions. 

A diagnosis of cancer was a shock. My husband had an incidental finding of pre-cancerous cells several years previously and so in my mind I thought it would be me looking after my husband and not the other way round.   

I had the diagnosis on Friday and the chemotherapy started on Monday. Steroids started a few days later and their effect was almost immediate. I had been in so much pain that the effect of the steroids felt like a miracle. 
 

 
My consultant told me that if the treatment did not work, he had other things up his sleeve.
Penelope

I didn’t know what to expect with the treatment, but I found the chemotherapy difficult. I had a mixture of chemotherapy drugs and steroids as well as a monoclonal antibody (obinutuzumab) – all intravenously. I would go to the day treatment unit first thing in the morning and was usually the last patient to leave at the end of the day. Early on in my treatment I was thrashing around in the bed at night with tingling feet and hot flushes not knowing where to put myself. Steroids made me hyper and then depressed and I found it very difficult to sleep. 

The chemotherapy was for five months, so my life was punctuated by the three-weekly Mondays when I would return to face another session. I was also given prophylactic anti virals (acyclovir) and anti fungals (fluconazole) and a stomach protector drug (omeprazole) to take daily during the gap in the 3-weekly cycles of chemotherapy. Initially it was planned to give me prophylactic antibiotics, but as they brought me out in an itchy rash they were discontinued.

After the third round of chemotherapy, I developed a pain in my groin, which is still causing me problems, especially when I stand up or walk.

I was worried that it may be indicating that the lymphoma had gone into my bone marrow. However, a CT scan showed that the lymphoma had reduced by 50% which the nurse said was a wonderful result. This was reassuring and I started to feel confident that the treatment was working. My consultant had also told me that if this treatment did not work, he had other things up his sleeve, which was also comforting to know. 

I have struggled with side effects. I have peripheral neuropathy (PN) in my hands and feet, which gives me a sensation like numbness or tingling. It is a really peculiar sensation during the day, but is far worse at night-time. Someone suggested I use a cream with 1% menthol (which helps with itching). I often use it at night and find that it does help. 

I was told that the hip/groin pain was a result of nerve damage caused by the compression of the nerves in my spine and that vincristine, one of the chemotherapy drugs, would be stopped for the last three sequences because nerve damage is a known side effect. I was worried that because the vincristine had been removed, my treatment would be less effective. I was reassured that it would not be disastrous, and that it was important to report side effects.

Before treatment started, a nurse had told me I would lose my hair. After nine weeks my hair was still there, albeit a little thinner. But after the fourth treatment my hair noticeably fell out. I was really upset by this, despite knowing it was likely to happen. I already had a wig that I had bought after the first treatment, but it wasn’t a success. My daughter suggested we look on the internet, where there were lots of sites, three of which I found particularly good. I ordered several wigs, which were posted to me and which I could post back if they weren’t right for me. 

I decided not to buy a real hair wig as I didn’t expect to need it for very long. I also thought they would need a lot more care and attention than a synthetic wig. The wig I did buy was heat resistant, so I could style it how I wanted and it didn’t cost a fortune. It can be itchy, but it is nice to have the option to put it on when going out. 

I have used some complementary therapies to help with some of the side effects I experienced during treatment and continue to experience. I've had massages to help with the feelings in my legs. I found one lady who made a real difference. She seems to intuitively know which muscles feel tight and how to release the tension. I think it helps to talk in detail about where you are experiencing pain and not to be afraid of saying how the massage feels as you are having it. Because I have been struggling with my sleep, I have tried reflexology also.  

I am blessed with a wonderful family and husband. My children are all adults now, but I have been fortunate that two of them live nearby. They have been an enormous support and do everything to keep me safe. My son is a doctor, so he has been invaluable in helping me understand my lymphoma and the treatment I am having. 

A month after I completed the chemotherapy I had a PET scan which thankfully showed I was in complete metabolic remission. Research shows that if you continue with maintenance of the monoclonal antibody infusion treatment (in my case obinutuzumab) every eight weeks for two years you are more likely to remain in remission. I have had two maintenance treatments to date.

 
I have used some complementary therapies to help with some of the side effects I experienced during treatment and continue to experience. 
Penelope

Covid has made life very much more difficult. No visitors are allowed during chemotherapy. Treatment means that I am immunosuppressed and have to be extra careful, which limits our lifestyle. I will be having a fourth vaccine in a couple of weeks time which I look forward to, as the previous three have not produced any antibodies.