Dear all,
A few months after my first course of chemo- and immunotherapy, my follicular lymphoma returned. I have now started a second, more intensive round of treatment (obinu and benda). The first course was physically harder than I had expected, mainly because of persistent nausea. When it finally subsided, it felt like a liberation. The current cycles are going reasonably well: two unpredictable weeks, followed by two better ones.
But another problem presents itself. Living with this illness — and not forgetting the treatment — sometimes feels empty and without direction. Of course, as far as one is physically able, you can try to enjoy things such as nature, travel, good food and spending time with friends and family. But I would very much like to mean something to others as well, to live meaningfully now that I am still here.
Acceptance of the illness and its limitations is a first step. If you are fortunate enough to continue living, with all the limitations the condition brings, acceptance is incredibly important. But acceptance alone does not answer the question of how to fill the time you have — with all its uncertainties and limits — in a meaningful way.
What I rarely come across is this question: how do you find happiness, and above all a sense of meaning, after a profound change in your life, when your former self, your previous role and your vision of the future have fallen away?
I have been thinking about writing something about my life for my family and friends, perhaps even trying to publish it later.I was born in the former Czechoslovakia and now live in the Netherlands.
In my work, I had colleagues who supported each other when things went wrong, who could laugh together when the pressure became too much, and who inspired one another. They were not family and not friends, but people united by a shared purpose.
I miss that now. That is why I am curious how you deal with this.
Thanks for your thoughts on “happiness and purpose”while living with this disease and dealing with uncertainty
Anka
Hi again Anka and well done navigating across to this corner of the community.
I won’t repeat all I said on how as a family we approach some of the thoughts you are highlighting both on here and in that first post in the New to Community area of the site…… like to that post below.
meaningful life despite chemo for lymphoma
Your Follicular Lymphoma like my first type of T-Cell Non Hodgkin’s Lymphoma CTCL (Mycosis Fungodes)…… fall into the large group called Low-grade non-Hodgkin lymphoma.
This group is an odd type of Lymphomas….. and is actually the largest group of Lymphoma types.… Classed as incurable but treatable.
My first consultant way back in the early days advised me and my family that we had to see this all in the same lights as having a chronic heath condition. He used Diabetes as the example.
Living with diabetes is a life long, 24/7 journey that has you on a daily monitoring and treatment rollercoaster….. as long as you are disciplined, things will go well but one laps can result in significant problems…… some serious.
Living the Low-Grade NHL journey is rather different as you only need treatment when treatments are required and on the whole life can go on in between….. and this was certainly our family’s experience.
Lets see if there are any group members looking in who can give you their wisdom.
The one thing I have realised that over the years….. yes some treatments can get more demanding….. but with the developments of new treatments…… some are now less depending.
In late 2013 when my second type of NHL appeared I was told the 2 year treatment plan that was being put in place would be a last throw if the dice and if it did not work I would have a few years…… so I decided to go out fighting if required.
Yes the treatment worked but over the past 10+ years there have been a few new treatment developed that if I relapse I have options….. these treatments are significantly less demanding than most of the treatments I have had in all my 25 years….. I know this well as I have actually been involved directly with the pharmaceutical company who have developed the treatments.
Even although FL is one of the most common types of Low-Grade NHLs this group has become slower over the past few years…….
This is most likely due to the high profile of the UKs main Lymphoma charity Lymphoma Action.
Unfortunately it is a UK only charity so you would not be able to access their support services :(
