Hi everyone, just joined, the last few days have been a bit of a shock and not really sunk in yet.
I have been feeling achey and having night sweats for about a months. People have also been saying I have been loosing weight for a few months. I had a large lump appear on my neck literally last Sunday, then I got a blood test and my HG was 95 when normal range is 130-180.
since then I’ve had a X-ray and CT scan. Had a biopsy today and they are pretty sure it’s lymphoma. Only seem to have swelling in my chest and neck but my HG has now dropped to 84 so now worried it’s in my bone marrow but they can’t provide any questions .
my whole life has turned upside down and I don’t really know what to think or feel. I’m being kept in hospital because of my blood and will need a transfusion if I drop below 80.
they won’t know what type of Lymphoma or stage for a couple of weeks so can’t get any comfort at all.
physically I feel well so I’m finding it all very hard to process
super worried of course but keeping positive that it’s treatable and usually curable . Any advice/support would be greatly appreciated
Hi Steve S and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from yours I do appreciate the challenges of this journey rather well.
Diagnosis can take time and far longer than you would want but as there are over 60 types and sub-types of Lymphoma it can be difficult to pinpoint the exact type quickly.
As I said I have a rare type of NHL and although my consultant as rather sure as to what I had it took a good year and 6 biopsies to get the truth……. but this delay made no difference to my outcomes as I am still here 24 years on living a great life.
Unfortunately you are as passenger at the moment and you have to go with the flow and trust the system to get the truth.
It’s important to get clear information so this link Questions to ask your medical team about Lymphoma will help you ask the right questions to get a clear picture of the way ahead.
Always around to chat or answer questions.
