Hey,
Hope everyone is doing as well as they can be and that you've all drank some water!
Almost felt like I should start with some kind of joke to break the ice, but honestly? I'm not even sure I know what to say at this point.
I was first diagnosed ten years ago at 18. It then relapsed during the pandemic, and I've been on 'watch and wait' since. It feels like it's a lot of watching and a load more waiting than I'd like it to be, but that's the joys of NLPHL, I guess?
I don't really know what I'm doing at the moment. I was at my appointment recently and was told that I'd need updated scans, and scanxiety isn't really something I've learned to get over just yet.
I've had such a complicated relationship with my diagnosis, and have had for years. I suppose I've reached a point where I'm unsure about the support available to me right now. I love my family and friends- obviously, but there's only so much I can do or say to them without feeling like cancer is all I can talk about with them.
I have to decide in a few weeks about whether I should do some radiotherapy. I've had it before, and it helped, but it just feels like it's putting a plaster on a very slow-growing problem. I don't know many people in the same boat as me, so it's a little isolating. Was just wondering if there are others with the same conflicting feelings about 'active monitoring'/ 'watch and wait', or if it's just a me thing?
Hi crow and a warm welcome to the Macmillan Community…… and from my point of view your journey sounds ever so familiar.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin lymphoma but I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 43……. when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.
The New to Community area is like our reception desk ……. but I do see that you have already found and joined our dedicated…..
…….. support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Do come over to the group and introduce yourself as we are a friendly bunch…
Just click on the link above……. then once the group page opens you can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you.
