Hello I am new on here I've been battling cancer for two years I had non Hopkins lymphoma CNS the cancer was also in my eyes it's been a year since treatment still struggling with weakness on the left side of my body my hand shaking had lots of chemo and steam cell transplant
Hello Sardonnick
A warm welcome to the Macmillan Online Community - I am Brian one of the Community Champions here.
The Community is divided into cancer specific groups/chat rooms and I would advise you to join us (I have Prostate Cancer myself) on the Prostate Cancer group - here's the link
Just click on the link I have provided and once the page opens up, click on "join" on the black banner at the bottom of the page. Once you have joined us you can either copy and paste or repost your original post in the "New Here - Say Hello" section.
You are assured of a warm welcome, trust me I am a Gleason 9 and have been around for over 3 years!! I look forward to "meeting" you again in our little part of the Community.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Star25 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m sorry to read that you've been living with non-hodgkin lymphoma for the last two years.
The online community is divided into different support groups so I'm going to recommend that you join the non-hodgkin lymphoma group which is a great place to ask questions, share experiences and get support.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Star25 and a second welcome from me.
I am Mike and I help out around our various Lymphoma groups.
I don’t have CNS Lymphoma but I was diagnosed way back in 1999 at 43 with my first rare incurable Cutaneous T-Cell NHL....... eventually reaching Stage 4a in late 2013 when a second, also rare aggressive Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well........ especially as I have had 2 Allo (donour) Stem Cell Transplants (June 2014 then Oct 2015)
Do consider putting up a post and introducing yourself to our dedicated Non-Hodgkin lymphoma group...... but we also have a dedicated Stem Cell Transplant group.
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support........ you may also find this long running discussion helpful..... Life after a SCT - A Survivor's Guide
I will keep an eye open for you in the groups.
Hi again Star25 ……. My Lymphoma journey is very long and complicated……. you can see my story in this link > See my story…….. it took a good 2 years to say I had come out of the post SCT dark tunnel but I am over 9.5 years out from my second Allo SCT, I turn 70 this year and I doing great.
Do look at the groups I have highlighted as you will be able to connect with others who have been through treatments.
You may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
