Hi all,
So this is weird. I never imagined myself in a space like this but I guess that because I never thought about what it would be like to have cancer.
I’m still reeling. I had my biopsy and the consultant said there were abnormal lymphocytes so I have lymphoma but they are still staining to identify the type.
I accepted it and have told my family but 48 hours later I suddenly started doubting it. It was the ENT consultant who told me, he’s not the expert, maybe he’s wrong. Maybe abnormal lymphocytes aren’t always lymphoma. Maybe when I go back on Thursday it’ll all have been a big mistake? Let’s just ignore the mass growing in my throat making it difficult to swallow.
I think this won’t feel real until they tell me my treatment plan. or maybe when I start treatment?
In the meantime my life is on hold. I know I should cancel my holiday but I can’t bring myself to do it yet. I feel frozen. My work have arranged some counselling sessions for me which I’m hoping to start next week.
I started googling and there is so much advice out there. How do you separate fact from superstition from outright lies trying to take advantage of people’s fear? What are the “good” resources. No BS just rational down to earth advice and shared experiences.
Hi Sam Sam H2026 and a warm welcome to the Community and sorry to hear you are on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL).
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 750+ hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015…….. but I am 10+ years out from my last treatment, turned 70 back in Nov and I am living a great life.
I was actually under Dermatology for my first 14 years working in a demanding teaching job on a full time table for the first 12 years after my diagnosis……. lived a normal life, holidays etc……. but when my second Lymphoma appeared in Oct 2013 it was Oncology then ENT that arranged all the tests and the biopsy….. a few weeks later I meet my Heamatology Consultant for the first time and I started treatment later on that day.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated…… you will see in my story I had a brick sized mass grow in my neck…… but the minute treatment started the mass started to break up….
There are over 60 types and sub-types of Lymphoma so until you know your exact type it’s best stick to this thread but once you have that diagnosis you can then join and post in our main groups (we don’t have a group for all the 60 types)……. in Lymphoma one treatment does not fit all types of Lymphoma……
The difference in Lymphoma is clearly shown in the Staging of Lymphoma….. is is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
When you are ready these are the links to our main groups….
General Non Hodgkin's Lymphoma
This period of diagnosis is frustrating and often takes much longer than you would want but it is very important to find the exact type you have as this then opens the correct door to treatments.
As for information your only go-to place should be the Lymphoma Action website.
The Lymphoma Action is the main UK charity for Lymphoma and their website has lots of good, reliable, up to date information, videos..... basically all things Lymphoma....... pre, during and post treatment.
You may find these 2 links very helpful as you navigate your appointments…. Clear accurate information is very important…..
Top tips for getting the best from your appointments
Questions to ask your medical team about lymphoma
Always around to chat and answer questions ((hugs))
