Anxiety after treatment

Hi Speedtripleboy and warm welcome to this corner of the Online Community although sorry that you had to find us. I am Mike and I help out around our Lymphoma groups. I don't have Mantle Cell Lymphoma but was diagnosed way back in 1999 with a rare, incurable Low Grade NHL so I understand this journey rather well.

My treatment journey has been rather excessive (See my story)....... but I do understand the post Stem Cell Transplant (SCT) challenges as I have had 2 Allo (donour) SCTs (June 2014 then Oct 2015).

I view the journey through the eyes that back in late 2013 I was told that SCT was my last throw of the dice as there were no other treatment available for my rare type of NHL (CTCL) so the fact that I am still hear talking with you today is amazing as I was only given 2 1/2 years if things didn't go well........ so for me I am constantly living in the moment and not worrying about tomorrow.

It's also interesting that in the 6 years since my second Allo SCT two new drugs have been developed for my type of NHL so if I do relapse I have a fall back.

Over my first 16 year the longest remission I had was about 9 month before I went onto the next treatment...... I am now over 5 years  into my longest remission so I am living the dream.

Speedtripleboy said:

I feel anxious and stressed most of the time is this normal? 

For some this will be the case, but for me the answer to this is no. I don't live like this, I can't live like this......... it would rob me of all the hard fought for victories I have had over the years..... but I have had a lot of time to develop the ability to pigeonhole everything that goes with a Lymphoma journey and not to let having an incurable cancer define me....... rather I define how I live.

Happy to chat this though more.

Thank you for your reply highlander, your story has many similarities to my own and I'm impressed by your attitude to this damn thing. I feel guilty for my anxiety as I have had such great care and have come so far, Maybe I just need more time to adjust to my new life, did you get back your physical strength?, I have been told I would qualify for the new car - t therapy, so that is something to hold on to. 

Good afternoon Speedtripleboy, yes CAR-T has opened doors for a small number of NHL types and I have talked with a few on here and more so on the Lymphoma Action Support Platformes who had a failed SCT and went on to have CAR-T and are doing good.

As my story says I landed in a wheelchair after my second Allo SCT, I had lost 27kgs, was not eating that well and due to being in bed for so long during the second SCT I had lost my muscle mass.

So once I was home I was having physiotherapy twice a week for 4 months to get me up and walking with sticks then after 4 months I could walk unaided. My SCN then took me across to our Maggie's Centre where she enrolled me in their Where Now? course........ these 7 afternoons over 7 weeks helped my get my head space sorted out although I did not have any real mental challenges during all the treatments..... it was more about look to move my hard fought for life forward........ I also enrolled in a weekly men's (cancer) circuits class that was run by a cancer trained fitness instructor who set individual exercises for everyone....... this was very hard work but over the first year I did see the slow progress.... I even got some of the resistance bands for home and was doing the exercises everyday...... and still do.

So I went for only being able to do very small walks at 4 months post SCT to doing 10,000 steps a day within the year.

Anxiety is a battle between the ears that has to be fought and controlled.

I often talk about the concept that when we first get our cancer diagnosis we all get an invisible ruck-sack put on our backs.

We then walk through our journey including our treatments, clinics, blood tests, scans, side effects……. and unknowingly, we continually throw stuff into the ruck-sack…… and the stuff builds up. It’s only when we finished our treatment (rang the bell) and look to try and ‘live’ life we realise that it’s not that straight forward.

This is due to the weight of the ‘stuff’ we have collected in the ruck-sack pulling us down…. stuff like pent-up anxiety and stress, the ‘what if’s’, the difficulty in seeing a way forward with life, the disappointments around how some of our family and friends supported us, the silly things people said during and after treatment….. the list goes on.

There comes a time when we hit ‘the wall’ and this is the point when this ruck-sack needs to be taken off out backs and over time cleaned out. It’s not an instant fix but a process…. but the healing process can only start when we are willing to do it and to achieve this we often need help so these are some links that you may want to follow up and see where you can find this help.

One thing I did have to deal with was survivors guilt as I lost some very good friends to different cancers over my years and "why did I survive and they did not".......... but again the Maggie's Centre especially their Where Now? Course and One on One support. sorted this out for me.

Lymphoma Action run a very good online Live Your Life Course

Sometimes we have to ask for help to help ourselves.

Always around.

Hi Thank you so much for your message, I appreciate it, I understand the guilt associated with survival it's a bit strange but I too lost people I met along the way, I guess I just have to kind of reset myself, I am no longer physically strong but mentally I have been through hell of a journey so maybe I'm more capable than I think? Anyway good to know I'm not alone, thanks again