2022

I was asked to come for a routine blood test at the GP's office. I have at this point been suffering from extreme pain throughout my body for about 7 years and have had various tests done, and the only conclusion they could come up with was fibromyalgia. The year before, my husband, who is a dentist sent me to the hospital to get tests done on my neck as I had two glands that were not going down, even though the GP and the specialists at the hospital said it was nothing to worry about, some people get swollen glands and can take a long time to disappear. So I had my routine blood test, and 2 days later I got a call from the GP (a locum Dr, that I had never met before) asking me to come in straight away. He sat me down and said he had gone over my blood works over the last couple of years and he was concerned and would like to do a physical examination. Once done he told me to take a seat, and he said, "right, I think you either have an autoimmune disease or lymphoma." My spleen and liver were very enlarged, and the glands on my neck were still there. I thank God every day that I got to see this locum Dr, cause not a single Dr that I had seen over the years had taken any notice of my symptoms.

Fast forward a week and I go to my appointment with Professor Davies. They booked me in for various blood tests and an MRI scan. I see him a few days after my MRI and am asked to bring someone with me, so my husband and my youngest son, Daniel accompany me to my appointment. I guessed it wasn't going to be good news since they wanted me to not come on my own. Professor Davies was blunt and to the point, which is how I prefer it. He said I am sorry to tell you Mrs Visser, but you have Non hodkins lymphoma, and we are going to have to do a biopsy to find out what stage it is etc. I had the biopsy a week later and at my next appointment was told it is stage 4, non-Hodgkins lymphoma and I will need to have 6 months of chemo, starting within the next few weeks. Non Hodgkins is a slow-growing cancer, so I understood that there was no major urgency to start treatment immediately.

I don't think any amount of reading material they give you, can prepare you for what the next 6 months of treatment is going to be like.  Everyone is different, and everyone reacts differently.  I was having two weeks of chemo and two weeks off.  I had to go into hospital for them to administer a drug call Rituximab and then I would have chemo tablets for two weeks.  I had such a bad reaction to Rituximab, so after the first treatment they had to admisister it extremely slowly, because if they did it at a fast rate I couldn't breath, I had a constant feeling of what I can only describe as a spider web feeling all over my head and face and the pain in the bottom of my back was beyond excruciating. I would be in hospital for 3 days while they administer this drug. The hardest part was the week before I started treatment again, I would feel amazing, but for 3 weeks I would be beyond tired and in so much pain all over.  By my 3rd treatment I remember sitting in the lounge crying my eyes out in pain, and said to my husband, I don't wanna do this anymore, I don't wanna be here anymore, that was the lowest I had ever felt, the pain was so bad that I ended up making some hash cookies, so I could at least get some sleep.  They did help, but on the flip side, I felt so discombobulated and I hated that feeling.  A few days before the start of each treatment, I had to take a high dose of steroids to help with the side effects of the treatment, and this in turn helped HUGELY with the pain, which was a massive relief.

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/rituximab

6 months on and having finished my treatment, I had another MRI scan to make sure the treatment had worked.  I had an appointment with the Oncologist a week later and we were over the moon, the treatment had worked and I was in remission. 

But... the pain, the pain was still there all over my body.  From my feet upwards, some days I could barely get out of bed.  Taking the dogs out for their daily walks had become such a mission, that most days I couldn't do it, so was left up to my husband to get them out before he went to work.  I can't even explain the frustration.  I was so hoping that this pain that I had been living with for almost 8 years would be cured with the treatment, but sadly this was not the case.  My only way to deal with it was taking steroids daily.  Not ideal, but it was the only way I could function on a day to day basis.

https://www.cancerresearchuk.org/about-cancer/non-hodgkin-lymphoma/about

https://www.cancerresearchuk.org/about-cancer/non-hodgkin-lymphoma/stages