Just saying hello - I've already 'met' Thehighlander in the Travel Insurance forum where I started off.
This all started with seeing my GP in January with a couple of lumps in my neck, then an ENT consultant, both of whom thought it was probably just swollen lymph glands. However after my ct scan which led to the diagnosis, I was handed over to a haematology consultant where more tests were done and a type with a German name that I've forgotten but intitials of LPL was given to me and I was told they would 'watch and wait'. An appointment every 2 months to start with. I have no symptoms apart from the 2 or 3 lumps which haven't changed.
The NHS have been brilliant apart from everything being so slow. The biggest gap was from my referral to the ENT consultant and my first appointment, although I was on the accelerated cancer thing. I was given an appointment the day they phoned (which was quite soon after) but I couldn't physically get to the hospital in time as it's not my local hospital. So I was given an appointment about 4 weeks later.
At my diagnosis appointment with the ENT consultant, there was also a haematology nurse who could tell me more rather than waiting for my appointment with her consultant for basic details. I have a phone number and email for the nurses who answer any questions I have and one of them has, so far, been at my subsequent appointments.
I know things will probably get worse at some stage, but mentally I'm feeling so much better now with a diagnosis than I did waiting at home for phone calls for appointments and then the wait for the actual appointment.
I also knew this would be difficult for my 2 (adult) daughters who were children when their dad died from kidney cancer 6 months after diagnosis after being told he should have up to 10 years with us. However, again, the NHS has been brilliant and welcomed them to all my appointments since I was diagnosed (I waited for a diagnosis to tell them as I didn't want them to worry unnecessarily) and said they can contact the nurses any time they feel they need more information.
Apologies, this was only going to be a short hello but I seem to have unburdened a lot of the stuff that's been unsaid inside since January. I promise to be more succinct in future posts!
All my best wishes to others treading this road at the moment.
Hi again Gill GillB and well done navigating across to this corner of the Community although.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is most likely different I do appreciate the challenges of this journey rather well.
I was basically on Active Monitoring (Watch and Wait) for about 14 years (although I was getting skin treatments as my type was a skin NHL) before I needed big gun treatments….. I Ali g with a lot of people who have been on the road for some time don’t act like the term Watch and Wait……. Active Monitoring is a far more positive way to look at how your condition is being looked after.
What type of low grade NHL do you have?
Most low grade NHLs are incurable and are seven as life long health conditions just like diabetes and when required there are many tools in the tool box to treat.
The group is always here to help out and support ((hugs))
