Lymphoma and FND

[shandyhaggis]

Hello all. I mentioned in a previous post over a year ago now that my journey with Lymphoma took me to various weird places. I was ill for a number of months before I was diagnosed, I couldn't walk properly, I literally couldn't pick my feet up from the floor, I dragged my feet, it was weird. I had RCHOP and afterwards when I expected to get better but I found that I still felt the same as before my diagnosis. I couldn't walk, couldn't lift my feet and I was so tired I couldn't stay awake for long.

I had a PET scan to see if the lymphoma was coming back, it wasn't. My legs developed jerks and ticks and that moved to my arms and eventually to my face and head. I developed a series of movement disorders and I had little control over my limbs. I went to see a neurological specialist in London who diagnosed me with functional movement disorders. He said it was due to the trauma of the condition and chemo treatment and that my body was still recovering. I mentioned to the consultant that I became slightly better if I took prendisolone. I also mentioned that I had been kept on high dosesages of prendisolone during the treatment rather than just taking the dose during each cycle. He advised me to to take the steroids. It helped a bit but to be honest I was so traumatised by the undiagnosed problem that my jerks and ticks continued.

I read that prendisolone caused weird side affects and also that it was used to treat addisions disease. The more I looked into the symptoms the more I wondered if the cancer had affected my bodies ability to produce cortisol. I went to see an endocrinologist and had a synacthen test. It showed that I had an issue producing cortisol. I was prescribed hydrocortisone instead and I gradually got better. I was also prescribed sertraline by the neurologist as he said that I had a form of depression that physically manifested itself as FND. It took 3 months but the FND subsided. It took another year to feel as normal as I could

3 years after becoming ill apart from still having lymphoma, that wont go away Im now almost normal - whatever that is.!

Anyway the reason for my post is that my journey was strange and took me to places which I can only refer to as a living hell. I couldn't go out as I couldn't walk. I had been a fit and healthy person before, I ran a marathon 2 weeks before I became ill. In the middle of it all I decided that I needed to focus on something else as I was stuck at home, I couldn't work and I was bloody miserable. I honestly didn't think I was ever going to be normal again. I wrote a book to keep busy and I published it a couple of days ago.

Its not about me, my cancer, my FND etc, its a fictional novel. I chose a story and backdrop that reflected the helplessness and trauma that I felt. Its based in the mid 1970's in East Berlin during the cold war.

amazon.co.uk/dp/B07BVF8JBV/

Its not a plug - honestly (well a little) I guess I just wanted to share my situation with others who are going through a traumatic time. I found that writing really helped me, it was cathartic and helped give me hope. The lesson I learned was that even though I wasnt the same person as I was before I became ill, I was stuck in the house for nearly 2 years, you can still achieve something and be proud of your achievements even in the most testing and challenging of times. The people of East Germany are testimony to that, they were amazing.

When you feel helpless and all is hopeless .... keep going and keep hoping keep dreaming. Worked for me

Thanks

Andrew