Hi, my names Phil.
I was diagnosed with NHL 18 months ago, had the usual biopsies, scans and a month of treatment and was ok both mentally and physically throughout the whole process.
Last week I’ve noticed further lumps under my right arm and have been told to just monitor them.
for some reason, this time Im feeling so anxious and can’t help but feel that this is the beginning of a whole lot of trouble.
Im not normally a worrier and have no idea where this has come from.
im not sleeping properly, I’m so fatigued and the anxiety is through the roof
Any tips out there?
cheers
Hi HappyPhil and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 with a rare incurable but treatable type of low grade skin Non Hodgkin’s Lymphoma Stage 4a (CTCL) and although my NHL ‘type’ my be different from yours I have experienced most types of treatments used but not necessarily the exact same drug mix……. and the range of emotions and challenges.
Depending on ‘your’ specific ‘type’ of NHL (There are 60 types) the reoccurrence of symptoms can happen and ongoing monitoring will be part of life and for some, like myself and many with low grade NHLs this will be for life.
What type do you have?
What treatment did you have?
Tips….. until its actually confirmed that you have relapsed you haven’t…… sounds rather simple and you may think unhelpful but after year and years of ‘what if’s’ like this I have galvanised an ability to understand my body and recognise the signs.
Happy to talk more and help you unpack this.
Hi Mike, thank you for the welcome, I appreciate it.
I was diagnosed with low grade follicular 3A and had a month of Radiotherapy to my groin area 
(great balls of fire 
)
I had a scan in may which showed nodes under my left arm (15mm) and now I have a lump under my right arm (approx 40mm)
The first appointment I can get is 21st September, which feels just too far away.
I know my life now is likely to be full of lumps and bumps which may come and go, but this time, I ache, have dull pain in the area, getting upset stomach and bowels, sweats etc. All the things we don’t want.
as I said, normally I’m able to laugh it off and not worry, but this time just feels so different.
thank you for taking time to reach out, I appreciate it greatly.
I hope you’re currently well
regards
phil
Hi Phil, thank you for this info, first we actually have a dedicated Follicular lymphoma group. FL is one of the more common types of low grade so you may find this group helpful as well.
I am great thank you and living the dream. I am now coming up to my 5th year in remission (I will never hear cure), rather amazing in that it it took over 17 years to hear I actually had got there and more so as I was told I would never be in any longer term remission (Hit my community name for my story)
Having relapsed many times over the years I developed a Teflon approach in that I don’t let the ‘what if?’ thoughts stick and direct my full attention on what is next….. as there is always a next.
Ha ha I have been told this a few times but I am happy with winning life itself as this is a result in my book 
We stay just outside Inverness below the forest that leads to Culloden Battlefield on one side and the Moray Firth on the other….. rather amazing views.
The NC500 is a rather spectacular journey and we have done it before it became a ‘thing’ in both directions including an add on trip to Orkney….. that is worth a visit.
