Hello everyone
I've had a bit of a whirlwind few weeks. I found a lump on my neck and was quickly referred to ENT who suspected thyroid issues..with a few tests and a biopsy, I was diagnosed with NHL last week.
I'm 29, and I have no other symptoms. I feel absolutely fine in myself and my appetite is more than ok! So apart from the lump, I would never have known. But I still feel utter disbelief and even a bit of a fraud.
I have had a PET scan and awaiting those results before treatment starts. Which looks like it could start in the next few weeks - right as we start another lockdown. I'm starting to get more nervous about covid than the actual cancer!
Would appreciate any words of advice and how people have found treatment during lockdown. My husband will be isolating with me so it's going to be a long few months for us both - and over Xmas too.
Thank you :)
Hi and welcome to our little corner of the Community but sorry to hear about your diagnosis.
You are rather fortunate that you had a proactive medical team as many people can take a long time to get a diagnosis where there are no other symptoms apart from a lump.
I was diagnosed way back in 1999 with a rare skin NHL and never had any other symptoms, not even lumps.
I have talked with lots of folks who have had their treatment during lockdown and once they got past the first treatment they had no real issues apart from having to attend hospital on their own.
There are over 60 types of Lymphoma so have they told you the actual type you have?
Once all the jigsaw pieces are put together a treatment plan can be put in place and you do need to understand that blood cancers like NHL are very treatable.... and even if you are told your are stage 4 (as I was) it makes no real difference as this is used to pinpoint the type of treatment and for how long.... the other thing at this moment is blood cancers are nothing like solid tumour cancers so a high stage is seen as bad news.
If it is seen as a low grade, slow growing NHL you may not need treatment but time will tell.
Happy to answer questions.
Yes, the word cancer can hit a button that we all did not realise existed and the space between our ears goes into a whirlwind........ but most people would say that once a plan is in place the noise does calm down.
This link to Lymphoma Action - Types of Lymphoma is a very good place to get a grip of some of the information.... but don't look to deep until you know the 'EXACT' type you have as there are many different types of treatments depending on type and stage.
Every journey is different and you can hit some of the group members names to see their story.
The one thing I would recommend is between now and Tuesday you get prepared.
I always recommend an old-fashioned note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.
The note book should have questions like:
What type of condition has been diagnosed? - exact name and grade etc.
What are the proposed treatments Chemo, Radiotherapy......?
What are the names of the Chemo Regime?
How many cycles of Chemo and how long will each cycle last?
Does this require inpatient time (over night)
How many sessions of Radiotherapy and how long will all the treatments take?
Remember to express any reservations about treatments........ an example - I have Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.
Finally you are allowed to record your appointment - this is a big help in times where you may not have a second pair of ears with you.....but do tell the consultant you want to do it.
Always around to help.
Hi again.
We do have a dedicated Diffuse Large B-Cell Lymphoma group so worth joining, having a look round and put up a conversation.
