Jayne’s story – Lymphoma

I am Jayne, I am 61 years old and live just outside Bradford in the village of Wilsden. I am a Keighley girl (If I can still be classed as a girl at my age?) and am a single parent to two girls, Lisa 40, who is married and lives in Keighley, with her husband Andrew and my grandson Joseph, 11; Laura 34, who lives with me as my full-time carer, but works part-time from home, as a writer. We have had our fair share of cancer in the family and I have always been aware of the signs for it, so when I had a telephone appointment with my GP in January 2021, I wasn’t surprised when my symptoms alerted her to ‘red flag’ me through the two week cancer pathway.
I had noticed that my left ankle was a lot more swollen than usual; my right being swollen all the time thanks to nerve damage caused by bulging discs in my spine and an emergency surgery in 1996. So to have both of them swollen made me think possible kidney problems or my hypertension medication maybe needed changing.
My GP informed me that recent blood tests had shown a very high amount of red platelets, and asked if I had any gastric problems. I told her yes, constant heartburn despite taking daily Lansoprozole (to reduce acid production) and a couple of really bad bouts of indigestion. She was concerned and asked if there was a family history of gastric cancer, yes, my dad had pancreatic and my grandma (his mum) stomach cancer. So, a week later, I was on my way to Airedale Hospital to have an endoscopy; I had had one 7 years previously and knew what it entailed, but I was so nervous this time that the doctor couldn’t carry it out properly and the procedure failed. He ordered two CT scans, one with a barium meal, the other with dye injected via a catheter in my arm.
Another week later, I drank lots of water and had nothing to eat, before my first of two scans within three days. The radiographers at Airedale were lovely and talked me through the scan; I have had MRI scans before, but never a CT. I needn’t have worried, it was a doddle compared to the tunnel of an MRI. I left feeling that they would probably tell me that all was well, I just needed to up my medication. That evening though, I was scratching my neck and head having had a reaction to the dye used in the scan and I discovered a lump in my hairline, about the size of a 1p in circumference and raised about 1cm from my skull. Two days later was the barium meal and I had heard all kinds of things about that! But, off we went (myself and Laura) to Airedale once again and I was taken into the room almost immediately. Two lovely ladies gave me a thick, grey, chalky liquid to drink as they took X-rays of my oesophagus whilst I swallowed. I stood on a platform, with a large table to my left, turning slowly with each drink. Then the table was slowly lowered, with me on it (That was a weird sensation!), for them to take more X-rays of my stomach at different angles. Then off I was sent to await the results in a week or so…
The following day my phone rang, it was the hospital; my heart sank, that had to be bad news so quickly. The lovely specialist nurse told me that the scans had found several problems, the biggest concern being enlarged lymph nodes, which they wanted to take a biopsy of. Alarm bells rang, they suspected cancer. The other problems were a muscle spasm when I swallowed, which is what was causing my digestion problems and a blockage in my right kidney, but they would sort out the biopsy first, that was more important. I received my appointment that weekend and it was for the following Wednesday, they really were pushing things through quickly and that scared me, but I tried not to show it to my family. On the afternoon of the biopsy, my friend and neighbour Elaine, took me to Airedale and I went to Radiography to await my appointment. I was called in pretty quickly and the radiologist numbed an area just above my collarbone, talking me through each step as he took the biopsy. I didn’t feel a thing and about 15 minutes later, I was on my way home again with a dainty little plaster over my “wound”. As I left, the radiologist had said that they take around 7-21 days to get the results and sometimes they asked for another sample, but not always. My mind was all over the place, but I kept thinking positively, it wouldn’t be cancer, I wasn’t unwell, hadn’t lost lots of weight, no blood coming from places there shouldn’t be… I’d be fine! Yes Jayne, you keep telling yourself that!
Exactly three weeks later my phone rang just after 9am, it was Monday March 1st 2021 and I knew immediately that it was my results. It was… The lovely specialist nurse asked if I would like an appointment to see the doctor in a couple of days or she could give me the news over the phone. I chose there and then, I wanted to know! I will never forget hearing her say that the biopsy had revealed a lymphoma, which I knew was cancer and as she explained that it was a slow growing blood cancer called follicular lymphoma, that it was treatable yet incurable, my heart raced and tears began to fall. I had cancer. I might not see Joseph grow up. I might not live to old age… I wanted my mum! (Sadly both my mum and my dad are dead, mum in 2001 and dad 2010) But the nurse answered what questions I could think of, which weren’t many, and then said that I would be referred to haematology now and they would take over things from now on.
So here I am almost twelve weeks later and it all feels pretty surreal. The lump on the back of my head is slightly bigger, but nothing to make treatment imminent. My appointment with the haematology doctor was on the phone (thanks to Covid-19) and he assured me that the affected lymph nodes were small at 1-2cm in size, they would wait until they were 4-5cm or I developed more symptom; drenching night sweats, drastic weight loss and more lumps developing which I can feel or the existing ones are bigger. I am now on what used to be called ‘Watch & Wait’ but is now ‘Active Monitoring’ and I will have three monthly hospital appointments for bloods and scans. So I feel a little in limbo. Explaining to people that I have cancer for the rest of my life and I’m not having any treatment (yet) is weird. People automatically hear cancer and assume chemotherapy, radiotherapy, bald head etc. I know I used to, but this cancer is different to others. When I told a nurse friend her reaction has stayed with me, it was , “Oh follicular lymphoma is a good cancer to get if you’re going to get one!” And I can see her point…