Hello everyone,
It's been ages since my last connection to this wonderful group. Finished my 2 years of oral Venetoclax recently after chemo sessions in 2017/18 and then 23/24 ( combination of IV and oral).
Just wondered if anyone is on this " watch and wait" stage of their journey and how they feel? I am a very optimistic person , usually, but can't seem to shake a feeling of anxiety about my future. I seem to pick up every virus that's around and now beginning to panic about mixing in large groups and getting angry with myself as I am usually sociable and love being around people.
Would love to hear from anyone who shares these feelings. Thank you.
Hi Gran52 …… I was looking back for your older posts but did not find any so I am assuming that you are using a different community name.
I don’t have CLL, SLL or HCL but have been n my journey with 2 types of rather rare T-Cell Non Hodgkin’s Lymphoma for over 25 years now.
I have actually been in remission now since Sep 2016 and had regular monitoring appointments until June 2018 when my Cinsuktant discharged me with the words…..”get in with life Mike and if you need us you know where we are”
I was only ever in partial remission during my first 15-16 years with the longest period being 9 month between treatments so I spent a lot of time on Active Monitoring (Watch and Wait)…… I much prefer the term Active Monitoring as it was more positive as over my first 12 years I continued to work in a demanding teaching job on a full timetable at the same time as having g treatment…… so in reality I lived life as normal as possible with my team keeping an eye on me.
Between late 2013 to late 2015 I had some full on treatment due to my second type of T-Cell appearing…. so 750+ hrs of chemo, 45 radiotherapy zaps and 2 Allograft (donor) Stem Cell Transplants.
I was carful for the first 6 months post SCT but we then did our best to get back to
normal, yes I had lots of infections requiring hospital stays but my immune system got stronger and my 2 sets of on the shelf antibiotics that I had on repeat prescription has helped me catch any infections developing.
My great CNS kept reminding me and my wife that we must not let the past cancer journey to define us….. we had to define how we lived life.
Although CLL and SLL has the word Leukaemia in it, in Heamatology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.
Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL……. with one monthly group for people who are in remission, a place to share their experiences of living post treatment.
Always around to chat.
