Feeling alienated follicular lymphoma

Hi Guller40 and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you are felling isolated due to your diagnosis with Follicular Lymphoma. I am Mike Thehighlander and help out in our various Non Hodgkins Lymphoma Groups.

A blood cancer diagnosis can bring a lot of stress, confusion and questions but talking with people who are on the same journey can help a lot.

Can I direct you to this link to our very supportive Follicular lymphoma group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment. You will find friends in this group who 'get' where you are at.

To encourage you, I was diagnosed with a rare type of NHL 20 years ago and I am still around doing great.

Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

I will keep an eye open for you.

Dear guiler, I am sorry to hear of your diagnosis but am glad to hear you don’t need treatment straight the way, however it would be wrong to say that being on “watch and wait” does not bring its own kind of stress, which it seems you have already identified in your self. Do you think you would benefit from talking through any fears you have about the future, or possibly joining a support group or attending a maggies centre if there is one in your area. As a blood cancer patient myself I identified very early on the absence of adequate emotional support in the Hematology department and have built my own support network to compensate and this has helped me cope better with my own set of circumstances. It’s ok to have concerns about the future despite the fact you are not on active treatment, you deserve support regardless.

best wishes 

jane

Local Macmillan Support in your area or a Maggie’s Centre.

Hi Guiler40, I am sorry you are feeling alienated but understand how this happens. It is very common for people to avoid you for fear of saying the wrong thing or not knowing what to stay. I think people cannot really understand cancer unless they or a close relative have had it. It is not that they are isolating you deliberately, they probably don't understand how you are feeling. Do you have a Maggies or cancer group that you can access easily? It is far easier talking to others with cancer as they truly understand your fears. You will make new friends through this illness and will learn who remain true friends and those people you should move on from. The results may surprise you! Please try and find a local group and make use of this forum. The people here are friendly, welcoming and supportive and you may enjoy meeting new people as you get used to your new situation. So here is one virtual friend already! Wishing you all the best.

love pat x