How do I help a family member through this awful time?

Hi and welcome to the site though sorry to read you have a family member who has received a diagnosis, here is a link to an article that explains some of the feelings and emotions cancer patients may experience.

https://www.cancer.gov/about-cancer/coping/feelings

Sometimes people have to go through the cycle before they accept their diagnosis and how long they dwell at each stage varies. Key words used are - denial, anger, grief, and similar feelings. 

Some struggle with watch and wait but that's not the case here, others look at FNHL as a chronic disease which needs treatment when it flares up and I am sure others will share their coping strategies. 

The best advice is let them now you are there to listen and talk if they wish and give them the space they need, try not to keep asking how they are and try to treat them as you normally would, though this may be hard it works in many cases. 

any questions just ask and it would be good to now what treatment they are having if you ask any questions about side effects etc. 

hope this helps 

John 

Hi  and a second welcome to the Community.

So I was diagnosed with a rare type of NHL back in 1999 and as I am still around take this as a big encouragement and you can see our stories by hitting our Community names.

Conquering the battle between the ears is one of the big challenges. I will always say it’s about positioning yourself on a line that has despair at one end or focusing on the other end and where the end goal is a positive outcome. This often requires doing stuff that moves you in the correct direction. For some folks anger is their choice of how to handle this but from my long experience, anger actually is so counter productive as the main thing this does is sap energy and positivity......... and energy and positivity is the main thing that everyone can put into this to help get through

Blood cancers are on the whole very treatable and are becoming more like a chronic disease.

We do have a dedicated Follicular Lymphoma so it would be worth posting in there as well.

I would suggest that you introduce your fiends to the Community as this is a great place to get support from people who have walked the walk.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

It would be good to find out what treatment they are getting as we can help with that.

We are around to help as best as we can.

Thank you so much for replying so quickly, I really do appreciate it and you have made me feel a bit better so thank you.

I will do as you suggested, all the help I can get at the moment the better in understanding what’s happening now and what the future may bring. 

my brother is having anti-body and chemotherapy treatment for 6 cycles. He is on a cocktail of medication including steroids and anti allergy drugs. He had a reaction last night to come of the oral meds so it was a trip to A&E for him as they were worried about him.

he has also developed a huge anxiety surrounding any kind of treatment and the cannula is causing him all kinds of trouble mentally wise.  

Thanks again for taking the time to reply, the fact you are still helping people after your journey has finished is exemplary. So pleased you got through yours and cane out the other side.

Thanks John, your reply is much appreciated.

i have recently tried to take a back seat as I was constantly asking how he was. I guess it’s all so new and I’m finding my feet with it all and how I should be. 

I am now being led by him and how he feels and taking each day as it comes. I’m trying to help where I can, he has two small children so if I can help with them I will and with dinners etc. Just wish I could take it from him :( 

he is having anti body and chemotherapy for 6 cycles and then I think they will re-scab and bone marrow biopsy to see how well he has responded. Keeping everything crossed

Hi again, the issues he has been experiencing sounds just like a regular treatment journey.

The first time things unexpected happen it is stress city but its all-out getting into a rhythm and expecting (and being prepared) for the unexpected.

Try and find out the exact name of the treatment as this helps us give answers.

Keep posting as we do understand.

Thanks, it’s comforting to know what he is going through is what a lot of people go through, he’s not alone. 

on a more positive note he has had a good couple of days and has actually managed to get out to work. Next lot of anti body tomorrow so his anxiety is creeping in again, he’s doing well to try and manage it.

he is on the following treatment: Obinutuzumab and bendumastine. Is that how you spell it?! Does anyone know much about these? 

Hi, O & B as it is often referred to is a newer treatment combination, however the are a couple who have posted in the FNHL group who had this earlier this year so they will be able to answer any questions. its replacing R & B because the O is a drug that people should not react to in the way they do to R which is rituximab and about 50% of people do. 

Ok thanks, I’ll post in the other group and see if anyone has any thoughts. It’s good they are coming up with drugs that have less side effects, makes it a little easier for those going through it

Hiya,

The newer drugs that your son is having are not just gentler than the older treatments - they're really effective too!  I had a similar treatment last year for advanced bone marrow follicular lymphoma.  I'm now disease free, feeling fine and able to do every normal thing I want to do.  The bone pain was unpleasant for a bit, but I guessed it was due to the treatment attacking the lymphoma.  After a few weeks more treatment, it got better and hasn't come back since.

The hand cannulation is sore for many of us.  I found a little ice pack & some arnica cream when I got home after chemo helped a bit with the soreness.  I've since discovered from a needle phobic friend that there's a local anaesthetic cream called Emla that you can buy from a chemist, or get prescribed.  You apply it a couple of hours before treatment & cover it till you get to the hospital.  It helps make the skin less sensitive.

Best wishes to you and your son,

Cecren