My brother has two weeks ago been diagnosed with this and I don’t know how to handle it. He’s caring for his wife with motor neurons and lives nearly 200 miles from me. I’ve been up twice speak
most Days but today I rang and he was very nasty to
me I know he’s in pain and I understand. But it hurts so much when he’s nasty. I’m so lost at what to do or who to talk to
Hi Blueyes and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your brothers I do appreciate the challenges of this journey rather well.
The journey while living with and eventually being treated for Lymphoma can throw up many different reactions…… being diagnosed with Lymphoma is very challenging so you may find that your brother is not himself at times.
There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To join a group first click on the “Bold Link” I have created above that covers his Lymphoma then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support or just a listening ear.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
Unless there is danger to life surgery would not be used as this can not removed Lymphoma.
Lymphoma a cancer in the blood, Lymphatic-System and bone marrow so most of the time this needs chemotherapy, but other treatments like radiotherapy can be used.
I was stage 4 back in late 2013 and it had become very aggressive and the pain was off the scale but the treatments did the job and I am still here 10 years in.
Lets hope that he was having an off day when he was being nasty to you but as I said having a Lymphoma diagnosis can be life changing.
There are lots of helpful tools that can help him but it’s getting him to connect in with places like here but also the Lymphoma Action website.
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
No one treatment fits all the various types of Lymphoma as there are significant differences across the various types ((hugs))
Sorry to hear about your parents, you may want to look at the links I have given you so you can understand Lymphoma better.
Lymphoma is the 5th most common cancer in the UK after Breast, Lung, Colon and Prostate cancers but most people just don't know much about Lymphoma and it's important to 'get' in these early days that Lymphoma is rather different from most other cancer because it is a cancer of the blood and on the whole very very treatable.
Staging in Lymphoma is not like in Breast, Lung, Colon and Prostate where getting a high stage of say stage 4 would be a poor prognosis it's just not when it comes to Lymphoma. Remember I was stage 4a back late 2013 and I am still here doing great.
Staging in Lymphoma is 1) used to identify where the Lymphoma is presenting (it can show up anywhere) 2) what is the best treatment for that specific type and your presentation and 3) how long the treatment should last.
You best stick to this thread until you find out his actual Lymphoma type. But I am here at any time on this thread to help you out and answer questions as best as I can.
The questions you need answers for are:
What exact type of the 60 types of lymphoma does he have?
What is the r m SCT name of the treatment he may be getting and for how long?
Where is his Lymphoma presenting in his body?
((hugs))
