Recovery from primary mediastinal NHL treatment

Hi LookTheSea 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 was diagnosed back in 1999 with a rare, incurable type of Skin NHL Stage 4a so although my Lymphoma ‘type’ may be different, I like many in the group understand the challenges of the journey well (hit my community name to see my long story)

The 'post treatment' part of the journey for some can be the hardest. At times, living the post cancer journey is like living in a parallel universe - you can see your old life/self but regardless what you do you can not get back on that same path.

Following my many years of treatment and now 6+ years into my post treatment life, a situation I was unwillingly put into. It did actually make me review life and everything that we once thought important. So some things from our old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.

It takes far longer than you would think or even hope to get to a point where you are back near your old self....... you have to be very patient and live within the limits of your body........ but at the same time you do need to be moving forward.

As for the 'what if's?'......... I have relapsed multiple times over my first 16 years with me only ever having 6-9 months before I had to go back on the same or different treatments....... but Sep 2016 full metabolic remission was achieved and I am living the dream. I think I accepted early on that the 'what if's?'...... had to be turned upside down to 'what can I do now in life?' 

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

Talking to people face to face when on a cancer journey can be very helpful so do check to see if you have any Local Macmillan Support in your area as they run post treatment courses.

Do also check out for a local Maggie's Centre in your area as these folks are amazing and run a 'Where now?' course, this was excellent as was the Lymphoma Action Online Course Live your Life course.

The post treatment journey is like driving a car........ the future is open for you to see through the big wide front windscreen...... the past is only visible in the little mirrors........ if we concentrate on the little mirrors we miss the future and more importantly be crash.

For context what actually type of NHL do you have? and what chemo did you have?

Always around to chat.

Mike, thank you very much.  The link to Dr Harvey's article is particularly interesting, and Maggie's Centre is a new one to me, so I'll have a look at that.  Much appreciation, Nick.

Hey there!

 I had the exact same experience, same type of lymphoma, same treatment, full metabolic remission after R-CHOP No4. I'm recovering really well. I look alright and my PET scan is scheduled for the 1st June. I have never felt more insecure and stressed. Recently I have strange feeling that I'm sick again. I can't fully describe it but it's very similar to what I felt before I was first diagnosed last summer. In any case, the scan will show if there is anything. I think post-treatment is harder because we finally have time to process and time to think and overthink sometimes  In a way I feel like I recovered too fast -too good to be true, so my anxiety is through the roof. I'm doing amazingly according to all tests and physical performance challenges but my whole perspective on life changed and I have no clue what to do with this newly found wisdom. Happy to chat about it, I don't have anyone around me who has experienced lcancer and its aftermath (and I'm very grateful for that).

Hi mrbatsasho and ai see it’s your first post so welcome.

We all develop newly found knowledge and wisdom on our journey. I was diagnosed back in 1999 and my great GP always said that I knew far more about my rare type of NHL than he did.

I have been helping out in the Community for over 5 years now and there is always someone new caught in the diagnosis headlights who need some of our knowledge and wisdom so do look out for these folks.

I would always advise folks to put their story into their profile (link at the bottom of my posts as to how this is done) as many folks doing the community to ‘look in’ but often never build up the courage to post so out profiles area great help. Hit members names to see if they have done their story and it gives you an idea.

It takes time to develop trust in your body and how to distinguish what is a problem and what us just normal day to day life stuff….. I have had multiple relapses so have had a lot of practice at this.

The paper by Dr Peter Harvey After Treatment Finishes - Then What? is a good read and gives a helpful insight to the post treatment journey.

Hey Mr Batsasho!  It is very good to hear from you, and a comfort to know that I am not alone.  Of course, I knew this deep down, but it is great to hear from another human with such a similar experience :-)

Yes, I am also very aware of my review scan, soon.  Also PET.  And yes, l am definitely finding this period the most challenging, which might sound surprising to some people, may be to friends, and some family.  For so many reasons.  Like you say, my mind is taking stock, and sometimes panicking in the face of so many unknowns.  When I meditate, I can see it trying to take control of the situation, or imagining scenarios.  I recently had an energy crash, after over doing things physically the previous day - this was a frightening experience, a reminder of what has happened to me, and sewing seeds of doubt.  Can I trust my body?  Is it ready for work? Will I be able to trust it again?

On the one hand, I HAVE recovered remarkably well.  But my mind is a step, or 5, behind.  I think a part of me is keen to pick up the things I enjoyed - of course.  And some of those things I have been trying out.  Walking with my dog, and some yoga is as much as my body can handle, physically.  Sometimes my mind wants me to go a little faster, may be partly out of fear - wanting to build strength in case the cancer comes back, and I need more chemo; may be out of excitement - yesss, let's go, let's get working, and living life fully again!  BUT, I am finding my mind is needing more time.  There are moments when I suddenly find tears rolling down my cheeks, uncontrollably (it really does feel like grief).

AND, I am learning things about myself - realising that I have ignored some really important aspects of life, especially in the Arts (I play guitar, like singing, and sometimes draw / sketch).  As a boy, observing my Dad I learnt that it is REALLY important to be a 'provider', to have a 'serious' job.  And I learnt to ignore what I enjoy, what I love.  Before cancer, I sometimes listened to that joyful voice, but rarely.  And my job, working in mental health (NHS), rarely allowed for joy.  I have a passion for providing therapy for people, but sadly in my 'area' of work, this was dampened by the strain our dear NHS is under, and local management decisions.  So, recently, I handed in my notice, and I plan to offer therapy privately - but in time!  I can't rush this.  SO important to time this right - I owe this to myself, and my future clients.  I have an appointment tomorrow with the MacMillan support team at the Citizens Advice Bureau to discuss benefits, etc.  And I need to talk with my GP about readiness for work, etc.

I'll stop there for now.  Please do chat away, either here, or privately if you wish.

Very best wishes to you, and to all those in our group, and beyond.  

Thanks Mike, That's great advice and the article is really nice to read too. Relapse is indeed up there on my list of fears. Unfortunately, my family and friends are very very happy that I'm officially in remission, so nobody really understands that relapse is a very real possibility and the risk of developing (late) side effects from treatment. I guess time helps with that but I'm 28 and was going really strong, having to rebuild everything I worked for so hard is enough of a challenge. Waiting is not my strong suit I suppose! :) 

Hey LookTheSea
It's great to be in this community. Seeing you are mental health specialist gives me more hope than you can imagine! I tried counselling and that definitely helped but I guess I just need to readjust. My head is a mess though! Interesting what you say about hobbies and arts. I've never been an artsy type - reading was more my hobby. Lots and lots of books. At the moment I'm struggling to finish a single book, I've completely lost my desire to read. What I'm looking for is to have some sort of a creative outlet - reading does not necessarily allow this. 
I know time will help, but as I mentioned in my previous comment waiting is the worst! Especially when I'm still experiencing some post-treatment effects and there isn't much I can do to prevent those. 
Regarding sports: I enrolled in something called Battle Cancer Program - fully funded gym sessions for cancer patient (with the approval of your doctos) and the results are startling. I suggest you keep an eye on it - it's a safe environment and the coaches and gyms participating understand and support the physical recovery after cancer. Can't recommend it enough. :) 

For those who think that everything is ok and think you just move on with life send them the paper as it says everything they need to understand about the forgotten 1/3 of the journey…… the first 2/3rds was your diagnosis and treatment.

Hey Mike.  Thanks for the advice re. the profile.  And I totally get that - I haven't always felt comfortable to disclose personal experience, and of course, it's not always necessary, or desirable.  But I have learnt when it is helpful, both for me, and potentially others.  As it happens, I've been thinking about this the last couple of days.  I might turn to the Blog pages, too.  I want to write about the very human experience of the cancer journey, and how my experience as a therapist and Buddhist have helped. Very best wishes.

Turning our journey to be a positive support for others is great. Just watch the Blog pages as they can be temperamental at times but gI’ve it a go…… the main area people will normally look at first is our profiles.