Today I’m very happy. In October 2019 I was diagnosed with stage 4 non-Hodgkin Lymphoma, or more specifically a rare and incurable type called Splenic Marginal Zone Lymphoma. I underwent six months of chemotherapy and came out the other side in complete remission. Today I am still in remission.
Hearing the words stage 4 and all the connotations associated with that panicked me but I was told that I should treat it more like a chronic disease as opposed to incurable cancer. The haematologists said I will probably die with it as opposed to dying from it as it’s such a slow-growing disease. Splenic Marginal Zone Lymphoma (SMZL) is a slow-growing (indolent) B-cell non-Hodgkin lymphoma (NHL). It usually affects the spleen, bone marrow and blood. It can sometimes affect lymph nodes in the abdomen. I had a massive spleen (two to three times its normal size) and a 30% involvement of the bone marrow and I lost almost two stone prior to diagnosis. It was classified at stage 4 because of the bone marrow involvement.
I was supposed to have six months of chemotherapy and immunotherapy followed by two years of bi-monthly immunotherapy (what they call “Maintenance” treatment). However, due to Covid-19, the decision was made to cancel the maintenance so my immune system could recover just in case I caught Covid. With maintenance the average remission time is 2-6 years. Without maintenance it would likely be shorter.
Well today I am now 15 months post-treatment and I’m still in complete remission, in fact, my bloodwork is better today than it was six months ago.
I don’t want to say the word “cured” as there is no way of telling if I am cured of this incurable disease but: my bloodwork has improved; my folate (folic acid) levels are now normal; the liver seems to have made a full recovery after the damage caused by chemotherapy; and I have had no symptoms whatsoever that virtually crippled me at periods leading up to the diagnosis. If I can make ten years without a relapse then “cured” possibly could be said but for now I just have to keep taking one day/week/month at a time.
Needless to say, after today’s consultation, I am incredibly happy and thankful for the wonderful treatment, care and attention given to me by my haematologists (Dr Munisamy and Dr Osborne) and the chemo nurses at the Celia Blakey unit at the William Harvey Hospital in Ashford.
Dr Munisamy told me when I was diagnosed that it was his mission to get me to 100-years-old. I’m holding him to that otherwise I’m going to haunt him! I also recently got a message from my musical idol, Garth Brooks, who told me he hopes I will “die of old age, like record old age”. I’m holding you to that too Garth!
Forward to 13:23 in the video…
Garth Brooks: https://fb.watch/68w2bw1OQ-/