Hi and welcome but sorry to hear that your son has been diagnosed with NHL.
How can we help?
I think you need to understand that on the whole many types of NHL are very treatable - I was diagnosed back in 1999 and I am still around doing great.
There are 60 types and subtypes of Lymphoma so all the information needs to be put together to find a clear path forward.
Has he been told what type he has?..... Lymphoma is a cancer if the blood so where the blood goes so can cancer cells..... but unlike solid tumour cancers like breast, lung etc this is not a major problem.
I was stage 4 and if this had been a solid tumour cancer I most likely would not be around - it is so different.
You need to read some good clear information about NHL.
Do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of clear information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.
This is the link to the NHL Information
lymphoma-action.org.uk/.../non-hodgkin-lymphoma
Keep your questions coming.
You will find your way around the site so please do not apologise- I have problems from time to time.
It will take time for the complete story to be put together for a clear diagnosis. As I said there are over 60 types and subtypes of Lymphoma so care has to be taken to get the exact diagnosis as this will help pinpoint the best treatment for him.
Information is going to be key so I always recommend you and/or your son have a list of questions ready as this helps reduce the noise between the ears.
Get a note book and start with this basic framework plus’s add your own thoughts
I work on a 6 Ws and an N set of questions.
What...
what type of blood cancer is it? (the exact name and stage)
what is the plan to move this forward?
what treatment(s) are you getting? (The exact treatment name)
Why....
why is this route being proposed?
why is this treatment better than others?
Who....
who have the team discussed your case with?
who are my contacts? (name and numbers etc of your Cancer Nurse Specialist if they have one)
Where, When and how long……
where will this be done, will it involve inpatient stay, how long?
when will this be done?
….. and how long will the treatment be? Number of treatment cycles?
Worry’s...... about the process.....
I have Spinal Osteoarthritis and hours of Radiotherapy did not go together well.
Never....
never leave an appointment wishing you had asked an important question!
In ‘normal’ times I would always say have someone with your son to hear the 90% of information he will miss.... so do ask if someone can be with you as hospitals are stating to open up more.
But use technology to its full if he is on his own.... get him to hit the speaker phone button during phone appointments. Have someone sit in on any video calls.... and remember he can ask to record everything.
Make sure someone takes him to an appointment and then immediately sit (with a cup of coffee when we can do this) and unpack the meeting while it’s still fresh in the mind.
((hugs))
Great, although these appointments can be overwhelming it is important to be head and for you to understand. If the consultants says something you don’t understand stop them and ask for it to be put into language you do understand.
Make sure they also give you a print out of the exact diagnosis and treatment plan as this helps you understand more and can help us connect you with others who have walked that same path ((hugs))
