Hi, I was diagnosed with Stage 4 lung cancer in December 2022, and have had my head down getting on with treatment. I started chemotherapy in January 2023 and I've got 3 rounds left of maintenance immunotherapy to go, which means I am going to finish my treatment plan in January 2025.
It's been a long 2 years with all of the twists and turns you'd expect, but treatment has also become part of my routine. It's looking like my body has responded really well, and I'm currently No evidence of Disease. It's so strange, I should be delighted that it's nearly over and has been so successful, but I think I'm going to feel like I'm in freefall when I finish treatment.
I know I need to start getting my head in gear for moving on after it is all over, so wanted to know if you had any tips / hints to manage this transition (head wise), as I can feel it's going to be another major head battle!
Do you ever feel confident that it won't come back?
Do you ever get free of scanxiety?
How do you manage the step down to six monthly rather than three monthly scans?
How do you get over the almost imposter like feeling of 'I'm here, but I shouldn't be' having been given worst case scenario at the beginning? My friend (also stage 4) and I (who met when we were receiving chemotherapy) call ourselves 'the Fraud Squad' because we both assumed the worst about our prognosis after diagnosis.
How do you do it? Any advice from previous stage 4ers who have lived to tell the tale would be gratefully received! Thank you.
Hi Newbie abd welcome to this corner of the community.
Well done you navigating your journey so far.
I have been on my incurable cancer journey for over 25 years..... and like yourself I have had significant treatments over these years (See my story)
I was diagnosed back in 1999 at 43 with a rare (8 in a million) incurable, Cutaneous T-Cell Non Hodgkin's Lymphoma……. then reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell Non Hodgkin's Lymphoma was presenting.
So do appreciate the challenges of this journey rather well.
Over these 25 years I have never officially been cancer free...... but as a family we have the ability to control the noise that can scream between the ears and not let my cancer define us....... we aim to define how we live our lives around our uninvited squatter.
I am now coming up to 9 years out from my last treatment so aim has been to focus on going forward….. it’s like driving a car where 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.
Nothing is guaranteed on this journey but not letting our cancer define us is imperative.
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.
In my early days post treatment I found the paper and even now when I post this great paper, folks will come back to me and say that they think that the paper had been written just about them. But I would always challenge (like I did years back) folks to become proactive after reading through it and using it as a vehicle for change and life improvement.
So get a note book or some sheets of paper and put pen to paper - it is a good way forward.
So a page per subject heading. Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards.
When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.
The headings would be:
What steps am I taking to regain trusts in my body?
What steps am I taking to regain trust in myself?
What steps am I taking to overcome living with uncertainty?
What steps am I taking to deal with the world?
What steps am I taking to regain mastery and control of my life?
