Hello,
So its been less than a day since I was told I have a rare form of Lymphoma which has effected the lymph nodes in my nose.
No idea on the extent of the disease yet. Close friends and family have been told and as expected are super supportive.
Not slept at all, don't want to eat, nose is so blocked it feels like my head will pop, any advice on how i can carry on?
Thanks
Hi and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here.
I am Mike Thehighlander and I help out on our various Lymphoma Forum. I was diagnosed with a rare type of Skin T-Cell Lymphoma in 1999 and yes, I am still around to tell the tail and talk with you.......so be encouraged. On the whole, Lymphoma is becoming more and more treatable with great results.
A blood cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot and will help reduce the whirlwind wind that is rushing in your head.
This may well be a type of NK T-Cell Lymphoma - have your team given you any specific information about the type?
There are more than 80 different types of Lymphoma but once you have clear information the noise between your ears WILL start to calm down as you can then concentrate on getting through treatment.
There are various treatments used and this will depend on how your condition is presenting but Radiotherapy and Chemotherapy may well be on the list.
Follow this link to our T-cell lymphomas forum where you will connect with people who understand the journey you are on. You can ask the folks questions about treatments, what to expect and how to help you during this time.
Follow the link and join the group. To do this hit the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts. If in the future you don’t want to receive notifications just switch off the email notifications tab.
The best way to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first post.
Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our Online Information and Support Sectionwhere you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers.
When you feel up to it thank about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.
I will keep an eye open for you.
