End of treatment, start of my journey

Hi again TKjedi, I do hope you had a good weekend, we had a trip back to our old hometowns at the weekend to meet up with family and friends - it was great......the reason I opened my reply with this information is to highlight that life does go on.

As you know I have been on my journey for over 23 years and am now 6.5 years out from my last treatment for my type of Low Grade NHL.......... so be encouraged........ and yes my type is also incurable and 'could' come back but that is not my focus as I know there are other tools in the Hematology tool box to deal with this 'if' required....... my focus is to continually live 'in the moment' and leave the 'what if's?' firmly on a very high shelf so I can't see them.

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

This groups activity comes and goes so it depends on who is looking in but you may want to extend your support platform by looking at the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars…. but more importantly they run regular Regional Lymphoma Online Support Groups and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide amazing support.

Always around to help more or just to chat

Hi Mike,

I had a look at the Lymphoma Action site, nice to know there's something like this...

I know there is always hope and the Lymphoma could come back, but I'm not going to let it rule my life. I have some tough decisions to make to do with work and so on, plus getting myself to a good level of fitness both physically and mentally and those are challenges I will take on with enthusiasm.

Your advice has been a great help...

Many thanks

Lymphoma action had a really good forum.

But they killed it by changing the format ,then they decided it was under used.

It's like they don't want  non medical people discussing things.

There are lots of different treatments and you have not said what you had ?

The LA forum was indeed underused so the focus went onto the Closed Facebook page that now has over 2800 members and very active.

Hi Doh,

I was fortunite to find the lymphoma in the early stages. I'm currently going through radiotherepy...but I was warned that it may not work completly and I may need more treatment to keep it in remission.

Ppl have a right to discuss thier symptoms to others as clinical trials can only do so much in finding side effects from treatment as they are not in a controlled enviroment. I felt better knowing about stuff from others and feeling I was not imagining things. 

Be well..

I am not on social media now Mike and I don't remember them saying find us on Facebook when I was.

It was only under used when they changed it and made it more difficult to find things.

Doh said:

when they changed it and made it more difficult to find things.

Lol…….that could be about this Community over the years 

The LA Facebook page started to be promoted more a few years back before the LA Forum was closed - I am one of the Mods on it

One of the reasons I stopped posting here was they were promoting their app for smartphones.

I thought it was going to be the only option available.

They said it was new and exciting.

I said what's exciting about having Cancer ?

I filled in the Dashboard and the options are