Good morning and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you have been diagnosed with one of the many types of Non Hodgkins Lymphoma Follicular Lymphoma.
Being diagnosed with a blood cancer can be such a shock but at the outset you do need to know that this is very treatable. I was diagnosed with a rare type of T-Cell Lymphoma over 20 years ago and I am still around doing very well so be encouraged.
Blood cancer are very treatable and many - like FL can be seen in the same vain as long term chronic conditions. At the moment FL can not be cured but can be controlled.
Back in 1999 I was told that my condition was also incurable and I would never see times of remission....and it would get me some day some time........ fast forward to September 2016 I was told I was in remission for no disease evident. This is because of the progress in research and treatments - so again be encouraged.
What do you say to your family - from my point of view - the truth along with the fact that this can be treated.
I see that you have found and joined our very supportive Follicular lymphoma group, this is the place where you will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link I have created then hit the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group, expert your thoughts and ask your questions.
By doing this you can connect with people who have walked the walk so can talk the talk......... along with getting reliable information (not Dr Google) you will start to control the whirlwind that is going on in your head right now.
The one tool that you must start using is a good old note book. This is the place where you start to put down every question, thought.....just unpack your brain. This goes to your appointments and when you get asked "have you any questions?" the note book comes out........ and we can help answers some of the questions.
I see that you have put some info in your profile - well done and also you can hit our group names to see our journeys.
I will keep an eye open for you in the Follicular lymphoma group and we can start to walk this journey together ((hugs))
Hi again Maggs, yes my journey is full of ups and downs but the main focus was to get through the dark tunnel and live.
It's important to know that the staging will only be used to identify the best treatment route and how long the treatment will last. Blood cancers are nothing like solid tumour cancers - I was stage 4a2..... in other types of cancers this would have been a death sentence, but in blood cancers this is not the case.
Do come over to the Follicular lymphoma group and introduce yourself to the folks.
(edit) I just seen that you have posted in the group.
((hugs))
