Dear all,
A few months after my first course of chemo- and immunotherapy, my lymphoma returned. I have now started a second, more intensive round of treatment. 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 more difficult weeks, followed by two better ones.
But now 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 children and friends, perhaps even trying to publish it later. 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.
I was born in the former Czechoslovakia and now live in the Netherlands, but I have not found a suitable forum there to ask this question.
With kind regards and thanks in advance for your responses,
Anka
Hi Anka and warm welcome to the Community but sorry to hear you find yourself on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
I was diagnosed in 1999 age 44 with one of the rare (8 in a million) hard to treat incurable type of slow growing Low-Grade NHLs - Cutaneous T-Cell a skin NHL when our daughters were 14 and 18…… and as my condition progressed quickly the then median survival at that time was set at 3-5 years was on the information I was given.
I continued to work for 12 years in a demanding teaching job and yes had various skin treatments treatments over these first 14 years then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4……. So I went on to have some intensive treatment between late 2013 to late 2015 (750+ hrs chemo, 45 radiotherapy zaps and 2 Allograft (donor) Stem Cell Transplants)……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 years since my last treatment……
Based in my long experience there certainly is meaningful life during and post treatments (See my story)
As a family we kept ‘journey’ diaries and to this day family and friends keep saying I need to turn them in a book.
During the 2+ years full on treatment (Sep 2013 to Oct 2015) plus’s the 2 years recovery I kept a regular Facebook update going available to a my friends and family……. this was called ‘The Joy in the Journey’
What every your hear is saying to do / do it
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you look to join one of more of our dedicated Lymphoma groups….. we can’t have a group for all the 60 types and sub-types of Lymphoma….. but these groups cover the main types.
General Non Hodgkin's Lymphoma
Always around to chat in this thread or join a group and put up a thread there - I will keep an eye open for you and so can give you further help.
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
Hi Anka
Welcome to our community, I hope you find it both informative and supportive.
The new to the community forum is something of a welcome mat here though it is not the most active, you might like to try posting your question in our Cancer chat forum where perhaps more people might see it.
Something I know many people find helpful is in trying to give something back, we often here the statistics of one in two people being affected by cancer but people often seem to think it will be them or someone they care for.
I wonder if you asked in the hospital you might be directed to support services near you and through that you might be find the outlet that could help you. Certainly in volunteering on here I have found some real positivies that have come from my expereince with my wife.
<<hugs>>
Steve
