Advice on coping with treatment

Hi - I remember a time when I was forever thinking about the cancer and awake a lot at night reading medical white papers and trial results.  

I would suggest not to think too far ahead, (years) or try not to think about "what if".  Set small targets of weeks and focus on the current.  

We can't do anything to improve the treatment outcome.  It will be what it will be, regardless of our state of mind.  No point worrying about it then - sometimes easier said than done.  

I think the thing that helped me move on from constantly thinking about it, was the continued success (and I mean that the treatment went ahead - it wasn't cancelled because my bloods weren't sufficient) month by month.  Every month became another cycle of the drugs inside me, doing their stuff.  And more = better.  

Hello Gunner66 

We are all different but here you go:

* I am a bit of a nerd  so I need to know everything about my cancer and it took possibly 12 months to fully understand where I was with it and all my results. I knew in my own mind even though I was told my treatment was "curative" I knew it wasn't and planned accordingly.

* My wife and family come first - cancer comes second. Life goes on as normal with the odd adjustment for medical appointments.

* Hormone Therapy for Prostate Cancer comes with "side effects". I think I have had every one on the list and some not even listed - but life goes on. Every side effect has an option, fatigue - take the dog for a walk, itchy skin - decent moisturiser, hot sweats - sage tablets and so on. 

* Always look on the bright side  - keep to as normal life as you can. Holidays, days out, evenings at the pub with your mates  - carry on as normal. 

With the support of your wife and kids - you can do this. Always happy to chat through any issues you feel there isn't a solution to. You already have a positive attitude, that's half the battle.

Best wishes - Brian.

You know what the advice is solid and sound and makes sense, I’m all about keeping things simple, it’s just nice to have this confirmed.

The treatment is better than no treatment so I do win, I just need to stay positive. I am very grateful for your kindness.

Hi Brian, yep very similar but I think I have been over thinking this and need to live my life, that’s the message I’m taking and as always I am so grateful for your kind words and practical thinking.

life goes on and yep I am positive I think but I will always look to be positive.

Take care Brian.

Hi Gunner66 

I haven’t experienced hormone treatment but have had various chemotherapy drugs, immunotherapy, and a very long course of high dose steroids as a recovery plan from complications. It’s certainly been my experience that cancer has had no side effects but treatment has brought many complications. On top of the physical issues, we incurables live with the mental effects of knowing we have a very uncertain future and have little control.

I have been living with stage 4 breast cancer since 2022. In line with some of the other comments, my own approach was to research the subject to death. I looked up academic papers, I read detailed documents from clinical trials. I subscribed to some specialist oncology resources and spent quality time understanding my particular cancer (which isn’t the standard breast cancer) and the developing thinking around treatment pathways and drugs currently in trial. It meant I could advocate for myself. Reading these glimmers of light on a cancer with a historically very poor prognosis allowed me to have some hope, even when my oncologist was distinctly dismissive of the prospect of a stable, long term remission. I continue to surprise her by remaining stable (although my next scan is tomorrow, so who knows?). Did it take away the worry? Not entirely, but it became more nuanced and I think I am mostly as I was before it all started. Other than my encyclopaedic knowledge of the PD -1/PD-L1 pathway and the risks and benefits of PD-1 inhibitors.

In a very odd sort of way, I find this site helps too, as it frequently exposes me to stories worse than my own, which puts my situation into perspective. I often describe living with stage 4 cancer as being on a train where you know the destination but not the route to be taken. I am wary of being encouraged to fight, or to remain positive. There are several threads on here on toxic positivity and the sorts of things people say to you. It’s your cancer and you have to do it your own way. If you need to wallow around for a bit, that’s fine. If you want to do an iron man, that’s also fine. It does become easier to accept over time. 

Thankyou so much for your kindness and yes what you say makes sense.

still early days I am trying to get my head round it but  I do intend to stay positive and believe that has to help.

i wish you happiness in ways that work for you.

Hi Gunner well incurable different cancer to you. Was bowel, then mets all over the place. 12 to 18 months. I lived my life as good as possible, still had a wine or 2, walked danced, went on holiday, went out for meal, My treatment was at home, immunotherapy every 4 weeks instead of the usual 2 years on my treatment they kept me o  it for 4 and 1/2 years. I'm cancer free now having 4 monthly scans, that was in 2019. Live your life as best you can, there will be down days and days you get sick of plodding on. But stick with it . My oncologist told me she has her second patient like me. We have hope. Keep making memories with your family. Good luck, take care x

Moi

Ment we have HOPEHi Gunner well incurable different cancer to you. Was bowel, then mets all over the place. 12 to 18 months. I lived my life as good as possible, still had a wine or 2, walked danced, went on holiday, went out for meal, My treatment was at home, immunotherapy every 4 weeks instead of the usual 2 years on my treatment they kept me o  it for 4 and 1/2 years. I'm cancer free now having 4 monthly scans, that was in 2019. Live your life as best you can, there will be down days and days you get sick of plodding on. But stick with it . My oncologist told me she has her second patient like me. We have hope. Keep making memories with your family. Good luck, take care x

Moi

Hi Moi Your advice is solid, this group has helped me put my feelings down in writing, once they are down I start to feel better. 
For me I can’t change it and i have adopted a great saying from that amazing movie Shawshank Redemption. Get busy living or get busy dying, I choose living and yes I am making those memories.

Thank you for your kindness.

I think we are all going to have episodes of anxiety flare ups especially when starting new treatments/ scans. I try to think

I cannot control the length of my life but I can control the quality of my life. Trying to shift my focus to something else rather than keep going down the rabbit hole. Plan things I enjoy short term and medium term. Always have something to look forward to. A new recipe to cook, meeting with friends, visit a new garden, a holiday to book. 

I also know that the outcome is not determined by what I am thinking of. Therefore I choose to focus on the optimistic outcome ie good scan results. It soothes my mind to have realistic hope. 

Acceptance comes with time, be kind to yourself. 

Stella