Hello, I was diagnosed with Hodgkin’s Lymphoma early this year. I had chemotherapy for a few months and then unfortunately now needing to have immunotherapy for a few months more (which wasn’t the original plan!). To summarise the treatment experience so far, I’ve had intense side effects with them all, with a few hospital stays mixed in while going through chemotherapy.
I was always a hypochondriac before, constantly googling any symptoms I had and “self-diagnosing” myself. Since the start of this whole journey though, I definitely took a backtrack from that. I didn’t want to accidentally google scary stuff and then just freak myself out so I’m not looking for a community to know more about Hodgkin’s or about other people’s symptoms/side effects, as I’ve come to realise everyone’s journey is unique to them and I get all flustered when I hear other people’s experiences. I start to compare myself to them and get down when others have been able to do so much alongside treatment e.g work or go holidays which physically I’ve not been able to do.
But the support I do want is how to deal with the feeling as if my life is on pause/I’m stuck in this moment and I’m “missing so many plans I had for this year” while other family and friends are planning all sorts in their life and “moving on”. Physically I’m not in a position to work/go on holidays/exercise intensely - I’m quite weak/get fatigued super quickly. Is there a group for this? Thank you for any help!
Hi and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Hodgkin’s Lymphoma diagnosis and treatment journey.
I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 with a rare, incurable Low Grade Non Hodgkin’s Lymphoma so I understand this journey rather well.
Going through Lymphoma treatment is very demanding so can be a very challenging journey and moving on with life is one of the massive challenges.
The Community is divided into support groups (discussion rooms) so can I recommend you join our Hodgkin lymphoma support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions, get support and see how others are navigating the post treatment world.
If you'd like to connect in with a group click on the Green (Bold) link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
