Hi... it's been a while...
Just when I thought things were improving, I feel like it's back to square one as new problems have occured...
I'm getting an MRI to find out why I'm in so much pain with my back and in my left side mostly. My biggest worry is the cancer was not fully caught and has spread...so here I am watching Yellowstone in my jammies, trying not to worry, but I worry more about how my family will cope seeing sick again and being a burden...
I hope everyone who reads this is doing well and surviving/living their own journey...
Hi Debbie TKjedi and I am sorry to read that you are experiencing back and side pains.
Living with an incurable type of Low-grade non-Hodgkin lymphoma like the Follicular Lymphoma you have does mean that it may show its face again in the future……. but at the same time any ‘new’ aches and pains will immediately be connected to a possibility of a relapse of your Lymphoma.
As you know I have a different type of low grade NHL and over my 24 years I have had to be investigated multiple times for various health problems…… yes I relapsed multiple times but that is life living with this type of Lymphoma……
But as I have grown older I am having to deal with other ‘medical stuff’ that must people have to deal with at various point in time that have nothing to do with my Lymphoma.
Back in 2010 I was having back pains, it was all checked out and nothing to do with my Lymphoma but was found to be Thoratic & Lumber Spondylosis - Spinal Osteoarthritis….. that I now live with and manage successfully.
I am 7 years 8 months out from my last Lymphoma treatments but back in December last year I was experiencing unexplained (bad) aches and pains in my back and side…… fast forward 6 months and a long list of tests including Colonoscopy, CT scan, MRI, Prostate Biopsy and loads of blood tests absolutely nothing has been found and yes…… the pains have gone.
The various medical professionals said that at times the body does stuff that can’t be explained, I could have had an undetectable infection that had lingered and caused the pains, It ‘could’ have been X or Y but the full body MOT showed nothing.
The body can throw curved balls at us at times but based on my many years experience of living with my incurable Lymphoma……. until there is actually something found that is of any concern then I park the stress……. do temeber that stress in itself is debilitating.
Lets hope you get answers soon and that this is not your Lymphoma waking up…… but if it does there are many lines of treatment available.
This Emotional Support Group is a general group that cover all cancer types and experiences……. should you fund yourself on the Lymphoma treatment rollercoaster again or just want to specifically talk with others who are navigating life with your type of Lymphoma do use our dedicated Follicular lymphoma support group that you have used before.
((hugs))
Hi Mike
Thanks for your wise words...I was just hoping for some semblance of have some kind of break from any problems for a while after the rollercoaster I went on last yr...
I went down the road of therapy but wasn't for me. I feel I'm coping ok, but just annoyed at my body for not giving me some time out and trying to work on feeling fitter than the last while. If the I does show something wrong...well I will suck it up as they say and put on the boxing gloves...
Have a great day
Debs
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Hi Debs, I totally understand your desire to get a break……. but unfortunately you are living with a type of blood cancer that is basically seen as a chronic health condition and like othe chronic health conditions we have to develop the ability to ‘live’ during the nine treatment times.
Over my first 16 odd years the longest partial remission I had was about 9 months before having to go back into the treatment rollercoaster but I got into a rhythm…… for the first 12 years of my diagnosis and treatment I was still working in a demanding Further Education job on a full teaching timetable so my employees were great and arranged my teaching slots to fit in with my treatments…… but once my condition became aggressive I took early retirement.
The interesting thing was I could not get medical retirement as my Lymphoma ‘did not fit the criteria in that it was not seen as life threatening’……. !!!!
Hi...
I totally get you on this...I think any cancer can be a life threatening disease and having to change your lifestyle to adapt is not as easy as some would think...lose of extra income, dates for the next treatment and trying to think healthy can take it's toll...
You get some ppl who think your just being lazy as the physical signs are not always there to show your ill. Giving up my cleaning job was really hard, and I bet it was the same for you also...
I still feel ppl misunderstand cancer and see only what shows on tv. I still get 'you look so healthy!!' or 'I'm so sorry!' ...lol
I hope we all can get through the bumps in the road...
Debs️
