NLPHL - Post treatment negative mindset

This all sounds very familiar to me! I think it's a pretty common state of mind in the cancer world. You are absolutely  not alone.

My main way of dealing with this mindset is to act with a degree of healthy denial. No one, not even your oncologist, can say with any certainty what is going to happen to you.

You could set yourself a time frame that feels manageable to you, and not concern yourself beyond that. For example, you might focus on your next scan in 3 months and not preoccupy yourself with anything that falls beyond that. So you start to live in a more immediate  present tense kind of way. And then when the scan comes and goes, you readjust your time frame to the next 3 months or whatever. I live my life in 3 month chunks with an eye on 12 months overall and have been doing this since becoming stage 4 three years ago. 

The losing interest in things is something I understand. I used to be someone who always had a big project on the go. Not any more. So it's small scale stuff now, but I do try to engage with something. I listen to lots of audio books and have the bbc sounds app for radio, and watch lots of high end TV drama eg Pluribus, Severance, True Detective, Succession, Better Call Saul. 

I would say let yourself adjust to where you're  at but look for little opportunities to reengage with the world to avoid becoming isolated. 

Can't go wrong with True detective! Your insights are incredible and I'm very thankful for your response. I think I'm trying to battle against the adjustment you mentioned rather than accepting it for what it is and making the most of the fact I'm still here. The isolation is tough but you're right, there has to be rengament from my side. Again, thank you so much and I wish you all the best on your journey.

Hi Danielm and a warm welcome to this little corner of the Community.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Nodular lymphocyte predominant Hodgkin lymphoma (NLPHL) but I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Cutaneous T-Cell Non Hodgkin’s Lymphoma (CTCL).

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) very type of aggressive Peripheral T-Cell Non Hodgkin’s Lymphoma (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

The journey can be ever so different for everyone....... back in 1999 it took a full year and 6 biopsies to eventually find out what I had...... back then the median survival for my CTCL was set at 3-5 years based on all the information I was given.

Our 2 daughters were 14 and 18 back in 1999…….  but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters.......

I am now 10 years out from my last treatment, tuned 70 last year and I am living a great life.......

Yes my CTCL is still seen as incurable and back in 2013 when my main treatment started I was told that the plan that was starting was the last throw of the dice..... See my story ....... eventually after 2 years the plan worked and in the past 10 years some new treatments have come on line.... so I have a fall back if required.

It is all about who or what defines us........ is it our Lymphoma defines us?....... or do we take control and we define how we live...... as a family we live with the mindset that defines life.

One of the many lessons I have learned over my 25+ years living with my 2 type of rare T-Cell NHL is encapsulated in this thought….

The road we navigate on our journey has two directions to follow. There are two signs along this road one sign is pointing to Pessimism, a mindset that always sees the worst will happen, not appreciating that the many treatments available can do the job, where stress and worry controls every aspect of life and as a result the journey is made extremely hard and draining.

The other sign points to Optimism, a mindset that is full of hopefulness, determination, confidence about the future and appreciates that the treatments available can turn the Lymphoma tide….. even in the most challenging storms. It’s important to continually seek to choose the optimistic direction as this simple thing can define how you walk out cancer journey.

........ this mindset helped me to continue to work for 12 years in my demanding teaching job on a full timetable that was fitted in around my various treatments...... once my second NHL appeared I had to make some changes to how I lived life....... be all these years on life is good.

You have found this group..... so you are one step away from being isolated.

To widen your support base you may want to check out Lymphoma Action.

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.

All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… you may want to widen your support and information base by checking them out

They run various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 6200 members and unfortunately you would most likely bump into me on there also ;)

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 Buddy Service where you can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support. 

You will overcome this. Although it is not all that popular anymore, I decided to dive deeper into my faith. I tell no one what to believe, but reveal what I believe. We are adults and we can choose. Although unworthy, I am the beneficiary of thousands of prayers, ultimately leading my agnostic haematologist to call my recovery "a miracle." 

Whatever is beneficial and has been of assistance to you, delve into it, as this journey is relentlessly personal. Even though surrounded by loved ones, there is an overriding sense of loneliness, but we are never alone.