Hello

Hi Toff and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma as is your Follicular Lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘types’ are different I most definitely appreciate the challenges of this journey rather well.

I relapsed multiple times over my first 15 years with the longest remission being about 9 months…… but here I am, turning 69 in a few months and getting on with life.

Way back when I was first diagnosed my great CNS said…..

“Mike, you need to see your Lymphoma diagnosis as though you have been diagnosed with a chronic health condition like say type 2 diabetes….. or a heart condition.

Unlike these conditions you are not going to be on medication and treatment all your life…… and if it does kick off there are lots of options to put this back to sleep”

……. and this is how as a family we have lived……. we define how we live…… we don’t let my lymphoma define us.

When I was as first diagnosed our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 16 years.

But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I am now 3 months away since my last treatment 9 years back and we continue to look forward to what else life has in store for us to enjoy.

I think it developing the mindset of living for the moment and not letting the ‘lymphoma what if’s?’ rob you…….. if I had done this for the past 25 years I would have become a grumpy old git 

Hello 

Thank you for your email. 

You have certainly been through very challenging times over the 15 years and I appreciate your response about getting on with life.

I was for a time then I lost my husband nearly 3 years ago.  It has broken me and left me wondering what's the point.  My health has deteriorated (not lymphoma) I am pleased to say.  I find myself thinking a lot about how ill I was at the time I was first diagnosed and how i wait every 5 months to see if all is ok. I don't have any family. I have a sister here but I cannot discuss anything with her.  Most people along with her think you should just get on with it. Easy for people to say when they have never experienced illness and the loss of someone close.

I know I need to focus on life more its just difficult when there is no one and your health is not so good.

Thank you for responding, I appreciate it.

Toff

Hi again Toff ..... sorry to hear about your husband..... Honestly I can only imagine the challenges this brought.

It is often the case that people have more challenges with 'other' health conditions then their Lymphoma especially low-grade NHLs......

I was also diagnosed in 2012 with Asbestosis and have had a heart attack over 2 years ago so I can understand in part the road you are on.

Talking can help a lot.......

You may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms......... I highly recommend these groups (online and in-person) as there is nothing better than ‘talking’ with other who have walked or are walking the same journey.

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Do also check for a local Maggie's Centre as these folks are amazing and give support ((hugs))

I do mine over the phone every 12 months now when I saw how busy it was on my last visit.

I just have a blood test at my GPs and they sent it to the hospital.

You will know first if anything is wrong.

Just get on with your life.