Hi, I hope you don't mind me posting. I'm very very new to all this and things are so jumbled up in my head. I feel like I don't know how to start making sense of it myself, let alone explaining!
I have a recently confirmed diagnosis of follicular non-Hodgkin's lymphoma (earlier this week), Stage 3B. I am 28 and I am a mum of 2 year old twin girls and I work 0.6 at present.
This all started about a couple of months ago when I noticed I had swollen lymph nodes in my neck and groin. I'd also lost weight and was getting night sweats. To start, I thought it was a virus or something, but eventually I went to my GP. She is normally super chilled, but on this occasion she seemed quite anxious and made a referral on the 2 week pathway. I also had a low RBC and platelets.
I did a bit of research and I could guess what might be coming - my husband and I even spoke about it. I thought i was mentally prepared. But in the event, I feel totally thrown. I know my husband is struggling, my kids are too young to understand anything, my friends have all been totally shocked... I feel so awful about causing people all this distress. I even felt bad about upsetting my lovely GP, who called me this week and sounded really shaken. It was thanks to her that I was seen and diagnosed quickly and I am so grateful for that.
I'm now supposed to be considering my treatment options: basically either watch and wait or go into chemo and rituximab treatment straight off, which I think was suggested because of the stage and the B symptoms. I'm basically changing my mind on this every 5 minutes! My husband thinks it's better to go straight for the treatment. But I'm so worried about how it will affect me and how we will cope.
I find it so hard to even acknowledge the things I feel. I want to be healthy, I want to see my kids grow up. I know I should keep positive...but these black thoughts keep seeping in.
I am sorry for this rambling post - I don't even know quite what I'm trying to say or hoping for, but thank you so much for reading to the end!
Hi 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 FL
A blood cancer diagnosis can bring a lot of stress, confusion and questions on but talking with people who are on the same journey can help a lot.
I am Mike Thehighlander and I help around our Lymphoma groups. Can I first direct you to this link to our 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.
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.
I was diagnosed with a rare type of T-Cell Lymphoma and I am still around doing very well but I was on a type of watch and wait for 14 years as it was seen as being in my best interests to keep an eye on my lymphoma and to save other treatments for when they are needed.
There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.
You do need to understand that FL is very treatable with great results. Your stage 3B gives your team the information that sets treatment protocols, in other sold type cancers 3B would be an issue - this is not the case with blood cancers like FL...... I was 4a2 and I am still around :)
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
Our Online Information and Support Section is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.
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 on the FL groups as it’s the best place to keep your supper together ((hugs))
