I'm not really sure what to do I'm just new to the online community. I have Primary mediastinal large b-cell lymphoma. I was sick for months with countless doctors appointments before a 14cm by 9cm tumour was found 31st November 2023. I was diagnosed with lymphoma about 10 days later and went from the diagnosis straight into hospital and on oxygen. Two days later chemo began, I had to stay in hospital a week at a time for 6 weeks with four 24 hr bags then two shorter bags of chemo. Sometimes I would have to stay longer due to infection. I had the typical side effects of losing all my hair, nausea, exhaustion and so on. Now I've been off chemo for a few weeks I feel normal again. I had my pet scan yesterday so am just waiting to find out if all the treatment worked. The thing is I feel guilty now that I feel normal whilst everyone I've known with cancer is either dead or having a horrendous time. Yes things were bad but nowhere near as bad as everyone else around me so I feel terrible admitting that things are difficult when they're suffering more. I don't really know what to do as I've felt lost since the tumour was found. It sort of hijacked my life and now I'm out of hospital with no routine and just floundering. Things have gone so quickly and i can't talk to those at home as they either get too upset or remind me that if I get upset it'll make others feel bad so I shouldn't. I've not really spoken about things due to that. I just feel a bit lost as things have been such a whirlwind. Any advice would be appreciate. Also sorry if I'm using the site wrong!
Hi Tina C and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma journey.
I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.
Can I recommended that you join our dedicated Diffuse Large B-Cell Lymphoma. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To join a group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can 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.
