Hello everyone,
I was recently diagnosed with relapsed and refractory neuroblastoma...stage 4...high risk. This is something i dealt with as a child, but now in my 20's I have no idea what to do. I feel like my life is being torn apart. I have opted to not do any curative treatment, and Im struggling with how to tell my fiancee. He doesnt know anything yet, and I just don't want him to leave me. How do I make my relationship feel normal when I know I am dying?
Hi and a welcome to the Online Community but so sorry to hear about your diagnoses and ongoing challenges.
This is such a stressful time for you, I have no first hand experience that I can help you with but when it comes to getting support and asking questions there is nothing better than talking with others who are on the ‘exact’ same cancer and emotional journey.
The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our supportive Head and neck cancer and Diagnosed at a young age support groups. These are safe places to talk to others with a similar diagnosis, treatment experience, emotional choices to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) Group Links I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Macmillan have many support services so do check out the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide practical information, emotional support or just a listening ear.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Do get back to me if you need further help.
