Pat

I have a non-Hodgkin lymphoma called extranodal marginal zone lymphoma. When I was diagnosed I felt a mixture of alarm and relief. I suspect this is a common sensation felt by people who receive a diagnosis after months, sometimes years, of investigations and odd or distressing symptoms. 

I had been fit and well apart from a tiny lump in my mouth and some acute stab-like pains in my scalp, which came and went.  

In August 2017, I mentioned the lump in my mouth to my dentist, who referred me to the maxillofacial department at my local hospital. I had a number of visits and was told that it was probably nothing serious; perhaps a salivary duct swelling or a swollen lymph node due to an infection. The registrar reassured me I was not wasting their time as ‘lumps and bumps’ should always be investigated. 

I had a scan and a biopsy into my cheek which revealed some unusual cells. The surgeon who was about to excise the lump examined my mouth, asking me how I was feeling. I replied that I felt fine and didn’t think I’d need an operation. He replied rather gravely that this would need further investigation and we talked about the possible outcomes.  It dawned on me then that I could be facing what everyone dreads; a cancer diagnosis.

Waiting for that minor operation, my mind went back to earlier that year and some of the signs that something was amiss; a pleasant day out when I had a sudden sharp pinching sensation on my scalp. This had been the first of many acute but brief pains which had continued to bother me for months.

I had gone to my GP and had blood tests and a scalp examination, but they had revealed nothing out of the ordinary. I mentioned my scalp pains again a couple of times, both to another GP and the hospital doctor, but neither expressed a concern that there could be an underlying problem in that area.

These pains on the scalp were an example of what I call 'odd symptoms' which suggest that something might be wrong, but not worrying enough to do more than ... well worry.

Pat

There was little I could find on the internet which would support any concerns. These pains on the scalp were an example of what I call ‘odd symptoms’ which suggest that something might be wrong, but not worrying enough to do more than… well, worry. My hair was thin in one place on my scalp towards the back of my head. I found myself touching it often and wishing it wasn’t there. But the pinching pain on my scalp only occurred every few weeks and there didn’t seem to be a pattern, so I decided in the end to ignore it. 

After surgery to remove the lump inside my mouth I recovered well, but was managing a swollen face and the challenges of eating and drinking. I found out that the biopsy revealed lymphoma cells. I needed more tests to identify what type of lymphoma it was and was referred to the haematology department. I was diagnosed with extranodal marginal zone lymphoma. 

Appointments were being arranged ‘at a pace’ and I felt I was in good hands. It was as if I was being carried along a peculiar journey for which I had no plan. Whatever this thing called lymphoma turned out to be, the only thing I could do was wait, and in the meantime, I tried to find out as much as I could.

I think of lymphoma as a strange and ‘sneaky’ illness; it can hide and mimic other conditions. One option could be to embrace it as a moody and somewhat unpredictable friend; someone who you don’t hear from for a long time and then reappears needing your full attention.

Reading about lymphoma when first diagnosed was very different to reading about it after treatment. At this very early stage, information seemed theoretical only, not real. I could not connect what I was reading with what was happening to me. I expected to understand it all at once, but learning doesn’t happen like that. Elizabeth Adler’s book Living with lymphoma: A Patient’s Guide is a comprehensive, science-based account, not only of her own experience of living with lymphoma, but of the latest advances in treatments. This book and the smaller publication by Lymphoma Action, Low-grade non-Hodgkin lymphoma have become my 'go to' reading when I have a quick question. It's taken a long time to take it all in.

After the initial confirmed diagnosis, the good news was that there was no need for any treatment at that time: the condition would be managed by active monitoring or ‘watch and wait’ where I would receive regular monitoring of my general health and any symptoms. The not so good news was that the disease could become active again and reappear anywhere in the body, although it was explained that the most likely place would be the location of the original tumour; in my case the cheek or face area. 

I think of lymphoma as a strange and 'sneaky' illness; it can hide and mimic other conditions. One option could be to embrace it as a moody and somewhat unpredictable friend; someone who you don't hear from for a long time and then reappears needing your full attention...'

Pat

I had a meeting with a very helpful nurse specialist who said I could contact her if I ever needed to between appointments, which were roughly every three months. Feelings of anxiety arose as I felt for lumps and bumps before each appointment, but much of the time I was able to forget about the diagnosis altogether. 

2018 was a good year. There were trips to see family and friends, city breaks in London and Amsterdam, a new grandchild, a nephew’s wedding and a house move. My partner of 18 years and I settled into our new home and started to enjoy long walks in the local countryside and I was able to indulge my life-long love of painting in my new garden studio.

Lumps in my neck started to develop in February 2019. At about the same time, I had noticed strange visual disturbances similar to those preceding a migraine headache. It was as if I had been staring at the sun and could see the afterglow. My optician assessed my vision and urgently referred me to an opthalmologist at my local hospital a few days later. I was told that my vision seemed normal, which was confusing, but my concerns were referred back to my haematologist. 

I had an MRI scan to investigate whether there was central nervous system lymphoma. This revealed thickening in an area of the underside of the scalp, which I was told could be a benign tumour called a meningioma. My medical team recommended I start low-dose chemotherapy, due to the increased size of the swellings in my neck, forehead and scalp. In the meantime, another MRI was scheduled and my consultant told me that neurology had recommended a biopsy be taken from my scalp. This biopsy revealed that there was lymphoma was in my scalp and it too was extra nodal marginal zone lymphoma. Low-dose chemotherapy was planned. 

Although the various swellings on my head and neck were obviously growing, I felt well and had no discomfort. Low-dose chemotherapy was planned to start a couple of months later and at the time I agreed with this non-urgent approach.  

In November 2019 while driving, I had found myself unable to tell whether I was pressing the correct pedal and felt unsafe to drive. It was a strange sensation, as if my brain didn’t quite know where my foot was. Something similar had happened earlier that year while on a walk.  A few days later, I was upstairs folding laundry when I suddenly felt light headed, my leg gave way and I sank to the ground.

My leg began to shake and I felt as if I was losing control. I was just able to call for help before starting to shake violently. An ambulance arrived very quickly and took me to the local hospital. I went straight into A&E and then to a medical admissions ward. Two days later I met my new consultant haematologist who explained that an MRI scan confirmed that the lymphoma had breached the blood brain barrier, causing a swelling in my brain. I found out that this swelling, or brain oedema, was what had previously been thought to be a possible meningioma (a tumor that arises from the meninges, the membranes that surround the brain and spinal cord). My understanding is that the lymphoma on my scalp had moved through the meninges via the lymphatic vessels in the cranial cavity. 

Further tests and scans took place and 3 days later I started a course of R-CHOP chemotherapy, with a plan for intrathecal methotrexate and two courses of intravenous methotrexate. R-CHOP is an intensive and aggressive protocol of six three weekly doses of three chemotherapy drugs, one monoclonal antibody and steroids. Although I had one period in hospital with a mouth infection, I found the treatment bearable and am immensely grateful to all the NHS staff involved. Two and a half years after my treatment, I am in clinical remission, having made a good recovery and with no identifiable lasting neurological damage. 

I am aware that my slow growing extranodal marginal zone lymphoma may still have surprises in store, but I feel better prepared for now for any new symptoms and any treatment required. Hopefully, as more understanding of lymphoma emerges, people will feel more confident in asking questions when they know something is wrong. It is after all a strange and sneaky illness.

Published in Lymphoma Matters 124, Winter 2022 and on the web on 16 November 2022