Hello everyone, my elderly Dad has been suffering from non-Hodgkin lymphoma for 2 years now. Not a cancer with a bad prognosis but he had chemo 2 years ago and developed horrendous chemo-sepsis, yet it is by some miracle he survived it. He’s now looking unwell again and the hospital is investigating and I think the rollercoaster of worry, treatment and anxiety is about to start again. The level of concern and fear I have about him is very hard to live with. I have a demanding job and young children yet I find myself constantly thinking about my Dad and the wait to find out if the cancer has returned to a level that he needs treatment. It’s hard to worry about a loved one for so long, to try and stay positive. Love to all in this community.
Hi Emily57 and very warm welcome to the Macmillan Community…… and I am sure that group members will pick up on your post.
I don’t normally post in this group but noticed your post and I wanted to introduce myself.
I am Mike and I help out around our dedicated Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well having released a number of times over my 26 years……. I was also diagnosed with Asbestosis in 2012 and Prostate Cancer this April past.
We do have a number of dedicated Lymphoma Support groups although with over 60 types and sub-types of Lymphoma we can’t have a group for every type but these are our main Lymphoma groups listed below.
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support from both patients and caregivers.
Back in 1999 I was told that the median survival for my first type of NHL was set at 3-5 years…… but the developments in treatments proved this ever so wrong and although I relapsed a number of times I am am now 11 years out from my last lymphoma treatment and remain in remission.
Yes I have Prostate Cancer but again should I require treatment there are treatments available…… but at the meantime I turn 71 in a few weeks and concentrating on getting on with life.
The Lymphoma groups are there if you want to connect with others navigating the lymphoma rollercoaster.
