Hi all,
This is Andy, I am 57, live in NW London and was diagnosed with stage 4 mantle cell lymphoma in September '23. I received 6 R-CHOP chemotherapy treatments and my
From September '23 to March '24 all I knew was hospitals, tests, chemo, injections, consultations - a daily and relentless regime for 6 months. It was the worse 6 months of my life.
My PET scan in March returned a "complete metabolic response" - which meant no signs of lymphoma after the initial 6 treatments.
After the PET scan in March I started a 2-year maintenance plan receiving Rituximab every weeks.
I have good friends that support me, family that support me too, I have neighbours that have been so unbelievably caring too and I have been lucky enough to be able to retire at only 57 and not have to worry about finances too much.
Physically I feel fine. But, I am really, really struggling emotionally. Whilst I am happy that the initial chemotherapy I received has beaten back this rotten disease, the future petrifies me. All I know is fear. So much so that I am struggling to come to terms with fact that I have a life changing (and life threatening) cancer and I am also struggling to live my life to the fullest.
I am aware that MCL can return at any point and more aggressively too and that scares the hell out of me - so much so that I am too scared to "go and live my life".
Instead of travelling, going to parks, galleries, museums etc - living life to its fullest, I mope about at home and abuse alcohol instead.
Your help and advice please would be welcomed
Andy
Hi Andy Andy1967 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 Mantle cell lymphoma but I was diagnosed way back in 1999 at 43 with a very rare 8 in a million incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Your journey sounds rather familiar, the all encompassing month of diagnosis and treatment…… I know how the overwhelming fear of relapse can rob you of living life to the full.
I relapsed multiple times over my first 14-15 years…. My story is rather complicated See my story as I had to have various treatments but I am over 8.5 years out from my last treatment, turned 68 last Nov and living a great life……. It is ever so important to not allow the journey to define your life…… you have to take control and define how you want to live….. and not rob you of the gift if life.
Unfortunately alcohol abuse is not going to help you, in fact due to your treatment your body is very fragile and over indulging in alcohol may well develop medical issues that compared to your Lymphoma journey could be much worse…. if that sounds scary it was meant to do that as I have talked with many folks over the years who walked this path and come to regret it.
‘Talking’ to others who have walked the walk can help..
You may want to check out the Lymphoma Action website. 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 as there is nothing better than talking with other who have walked the 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 Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
But this group is also here to help.
