Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

Husband diagnosed with NHL

Purplemad
Posted by

Hi, I was signposted here from the main group. My husband was diagnosed with NHL on 22.5.19 after we noticed lumps in his neck and is due to start chemo 24.6.19.  We met the consultant two weeks ago who said he has elements of low and high grade lymphoma. We then got sent for blood tests and were told we'd hear from her after the next team meeting which was last Tuesday. Since then though we got a call for him to go in for bone marrow samples and now they're sending him for a muga heart scan.  However, still not heard from consultant.

We haven't had any more information about his tests, don't know his staging and the lumps in his neck have grown massively this week to the point his whole right side is extremely swollen. Our keyworker nurse was going to find out if the consultant wanted to see us and I've tried to contact her to see if she's heard anything as I'm getting really worried about the additional tests because they weren't mentioned at our initial appointment but haven't heard anything. We also haven't had any more information about the treatment itself. He has pre assessment Friday but I have no idea what that involves either. 

Just feeling really out in limbo here and getting more concerned by the additional tests and how quick the lumps are growing. Husband thinks calling the doctor Monday will help despite me telling him it's the keyworker and we can't get hold of her. Sorry for the long post, don't know if I'm asking questions or just venting but it's hard to move forward when you have no idea what's going on. I plan on trying to contact our keyworker nurse tomorrow to try and pin down some details and results so fingers crossed.

Thehighlander
Posted by

Good morning Claire  and good that you have now found our little corner of the Online Community.

As John said in your post in New to Community you need to get your pointy elbows and feet in the doors of your husbands team, try not to fall out with them as you are going to see a lot of them but be pleasantly persistent.... always looking to get clear answers...... and try and find out the name and numbers of the clinic secretary or the consultants secretary as these folks can move mountains ;) 

If you have not done this already, start a note book - I have a few going back my 20 years. 

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 and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

Directly after the appointment go have a cup of tea/coffee and sit and talk about what has been said to ensure that you both have clear understanding of any plan that is in place as with this you are starting to take control of the mental battle, the medical one is up to your team. 

The note book could 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.

Come back to us with this info as one of us will have been on the same road.

Its amazing once treatment starts as it does work very effectively rather quickly.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Hi again and good to see you have joined the group, just to add to what we have said so far, blood cancers are different to solid tumour cancers and most blood cancers respond well to treatment and in a number of them after a couple of rounds the nodes or masses reduce considerably. The second point is chemo is not as bad as we all fear before we experience it and who experiences which side effects varies and the is no science to explain why. To help his body to cope we advise drink lots of fluids it protects the kidneys and flushes the dead cells out and he should try to exercise everyday, walking is good and the is research that shows exercise has a positive impact on the outcome.

once you know more or any questions keep posting in this thread, that way you have a record of everything in one place.

john

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are