Just wanted to say hello as a fairly new (couple months) 50 yr old mantle cell patient. Was discovered pretty randomly after another lymphoma (malt) was discovered. Just finished treatment (radiation) for the malt and been advised to do watchful waiting for the mantle cell. Currently have mantle cell in my bone marrow and blood but told it was very low %s.
While grateful it seems early, can’t help thinking of it like a ticking time bomb. Nobody has been able to advise when it may accelerate. Appreciate their honesty, but find it pretty unsettling. Know I need to focus on the positives and embrace life in the present, but my thoughts swirl to my kids and wife. Guess still processing.
Anyway, wanted to say hello and, if anyone has suggestions for managing the mental side of this disease, would be most welcome.
Thank you.
Hi Ny dad and a warm welcome to this corner of the Community although I am always sorry to see folks 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 rare, incurable but treatable type of Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well……. especially the living with the time bomb thought….. but I have to say that my bomb exploded in late 2013 and I am still here all these years later still living a great life….. My story is rather complicated but you can see my journey in this link See my story.
My amazing Specialist Cancer Nurse (SCN) of many years was blunt and honest and I did appreciate this and went is came to the anxiety of waiting for results, scans or for things to click off she told me…… The ‘cancer anxiety train’ is always sitting in the station....... but we can only get on it if we go to the ticket office and get a ticket....... don’t go in the queue and get a ticket…… go into another queue for something that you enjoy and that will distract you…… you can throw all the stress and anxiety you can muster up at this but the only thing it will do is make your stress and anxiety worse and then you get sick”
There are a few new members joined the group lately so let’s look for them to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
Always around to chat and help out.
