Stage 4 MCL - the future petrifies me

ThanksTrevor

I could do with some of your positivity!!

Mike - have now signed up for a few on-line group meetings with Lymphoma Action

Mike - Just had a reply from LA and apparently I can only sign up for one on-line group? Disappointed with that. Need to look for a better service provider now

I see you have joined the LA Closed Support Group…. As for the online groups…… one group per month is sufficient to develop a relationship with the group members.

With a significant number of people looking for places in the groups this is why there is a limit put on……. as a charity there is a limit as to how these groups are run and funded…… don’t let this put you off in anyway.

Regrettably and with irritation, it has put me off them. Maggies nor MacMillan act like that

I have never heard of joining criteria for a cancer support group

Hi, I was diagnosed I when I was 41 and am now 50. I'm new to the group but had the same diagnosis, and I have my dark days too, wondering when it will return. Every time my haemotology consultant appointment, I am always convinced it's back, but each time my consultant is very pleased with my blood results.  And the last time he saw me he said people are increasingly staying well in all different cancers. 

I'm wondering: so you get pain in your joints and muscles after your treatment? as I do, and it keeps getting more painful. 

I've recently moved flats with my husband and it's a much more quieter place with lots of nice walks, living between two woods, but still in walking distance to town. I find my peace in walking around the woods or somewhere quiet and take in the sights and sounds of nature 

But there are the days too, where I get very depressed and anxious. 

Hope this helps in any way. 

Hiya,

Many thanks for your message.

I must be one of the fortunate ones because I had very few side affects following my 6 R-CHOP treatments (apart from total hair loss). And, I've now had 3 Ritixumab treatments and no side affects at all. 

I am really struggling with the knowledge that my mantle cell lymphoma could return and that is stopping me living my life. It's like I am not permitting myself to be happy by living life to the fullest incase that happiness is shattered with a relapse. 

Hi I know you posted a month ago but after reading your post it touched a cord with me . I have had chemo for a rare lymphoma and not sure when it will return and like you am struggling to live a normal life . Hopefully we will be more able to adjust to this new normal. I wish you well x Chris 

Hi Chris,

It's learning how to adjust to all to all the adjustments that's proving challenging. Plus, being frightened all the time that my cancer will return - which, with mantle cell lymphoma, often does. It's only in the past 3-4 months that I have began to feel like me again. So much so that I am now doing voluntary work and I am trying to get more physically and mentally active which is so important too. I wish you all the versy best Chris