Who would've thought i would end up here?
It all seems a bit silly really. One day I am plodding along dealing with kidney stones as a niggling background issue. Next thing I'm being told I have lymphoma (not been told what flavour yet). It just seems bizarre and a total head flick.
Anyway, I definitely want to be here when I have my inevitable hissy fit, and I want to support other people here too through my journey. I like the idea of is all helping each other.
I have a meeting with an oncology consultant and a CNS on Wednesday, hopefully they will have the results from my PET CT. My biopsy went to another hospital who are more expert in the field to double check but with it being bank Holiday weekend it is just kind of dragging on. But hopefully those results will be back too.
I'm guessing this will be some sort of low grade lymphoma and they will want to just like, sit about and see what goes down. But hey... my little demons in my head are all no rammalamma... it'll be a big fat tumour, feel the niggle? Oooo was that a pain? Etc. Ridiculous. Or maybe not. I just don't flipping know!
Anyway I'm here. Lovely to meet you all. I'm going to read through some posts and hopefully feel inspired by you and reduce my self pity a bit. Or maybe I should feel self pity???? I really don't know. Gah. What a mess i am.
Xxx
Hi Rammalammadingdong and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups.
For context 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 although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well…… but the most important thing is I am 9.5 years out from my last treatment, I turn 70 at the end of this year and I am living a great life…… this can be done.
There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups 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.
Once you know your Lymphoma type have a look at the group list above…… then click on the link that best fits your type of Lymphoma……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
But until then I am happy to answer any questions you have on this thread.
