moving on after stage IV

[Sav1986]

Hi everyone, 

I am new to this group after calling the council about getting some help for my mental recovery. I recently went into remission from stage IV stomach cancer. 

I was a healthy fit 33 year old and have just finished my last round of chemo. I've started tablets and have to continue on immunotherapy for the foreseeable future.

Just as I came out of this the world went into lockdown which hasn't helped obviously. 

I'm grateful for getting my life back, especially after initially being told there was no hope for me. I'm finding it hard to adjust back and I guess there is a level of survivors guilt when I still have friends fighting it everyday. 

I think naturally the biggest thing for me is a fear of recurrence. I still cry a lot and find myself getting anxiety at random moments. 

I guess I started this thread to try and connect with anyone who is now in remission and how they managed. I am meditating, playing music, exercising and speaking to a psychologist as well. 

I have only been in remission 4 months. 

Thank you 

[sch]

Hi Sav1986,

I'm sorry to hear about your cancer, but I'm very happy to hear that it's in remission.

Yes, it seems relatively common for the doctors to tell people with a major illness that there is no hope. I think that it would probably be more difficult if they told you that there was hope, where it turned out that there was none. But I think that it gets overlooked is the patients who are in the middle of this. Maintain your hope!

Yes, I've had survivors guilt in the past. I had an illness in 2005 which I've managed to mostly make a full recovery from, while some fellow patients had no options but to move into a nursing home when aged in their 30's or 40's.  I struggled with that for some time.  Why did some peoples social/career/family lives effectively cease, while I had managed to somehow hobble things together? It didn't seem fair.

I've tried a few psychologists, but unfortunately I haven't been able to find one that I can work well with. I think I've just about given up. I've managed to fumble my way along this far, I guess I can fumble my way along a little longer.

For me, I've always found that running has been very therapeutic. It creates a personal space and also allows me to be very relaxed outside in the open air.  If I had the time, I would run every day, but I have two young children, so running becomes an exercise in time management.

But music is also very important to me. I listen to a lot of music!

Do you have someone with you that can help support you?

Best of luck in your recovery.

-s

[Sav1986]

Thanks for your message . I live with my friend and my parents are very supportive as well. It's still up and down each day. I guess the first year is always the hardest and in times like this it's even more difficult. 

I can't run or exercise as normal at the moment as my side effects are making me short of breath so that not helping. 

Even 10 minutes of cardio is overwhelming at the moment. 

I guess I have to hope the tablets will sort themselves out soon. 

Thanks 

[sch]

Hi Sav1986,

How long has it been since you finished chemo? 4 months?

After my colectomy, I have to say that things were pretty damn uncomfortable to say the least.

All I could manage was a very slow walk/shuffle. And that had to suffice for exercise for me for some time.

I've finished my chemo and many many months afterwards, I still have peripheral neuropathy in my hands and feet.

As far as cardio and, really, exercise in general. I wouldn't be starting off for a run and think that it will be all back to normal again. You need to start this up again very slowly. You really do. Let me know if you want to discuss this further.

It gets easier over time as you work out what your body is and isn't comfortable doing.

-s

[Sav1986]

Hey,

I'm doing alright. It's up and down at the moment. I only finished chemo at the start of March. I know I'm being hard on myself , plus all that's going on with corona is only adding to the anxiety. 

I had just moved out and started applying for jobs when all this happened. 

I wanted remission and I got it and quickly. I went into it within 10 weeks from a stage iv, nothing short of a miracle. I guess it was that fast that it feels like it was almost too easy, that the other shoe will drop, despite going through 12 rounds, losing my hair and still having neuropathy. 

I know the first year will be the hardest, I still am on tablets and immunetherapy which means hospital visits every 3 weeks. 

I really appreciate you taking the rime to write to me and I'm eased somewhat by the shared trauma and triumph people discuss on here. There's nothing better then hearing about someone beating it years ago and being absolutely fine. 

no feeling is final.

did you have any luck finding a psychologist? I was recommended mine by the cancer council but I had a bad experience with my first one so I switched. 

Thanks and speak soon 

[sch]

Hi,

Feeling up and down is a pretty normal response at this stage I think. Everyone experiences similar feelings. No-one is every 100% certain about what is going to happen.

After a while, I found that the hospital visits became a bit mundane. Yep, hook up that cannula, you don't even think twice about it after a while.

I like your attitude that no feeling is final. And I think you're right. Terrible things can happen sometimes, but hopefully we'll feel better after a while or learn to deal with and accept that which isn't.

It can feel awful when this happens to you when you're young.

I know that I can't go back to being the way I was before my illness. That's a fact.

But I've learnt to live with what has happened and what has changed as a result of surgery. I've adapted to it. This is life. It rarely goes the way we planned.

I like to think that the experience of the cancer has helped turn me into a better person. If I'm not, oh well, let me live with my illusions 😉

I have a question for you actually. Do you have to stay in hospital while the immunetherapy is administered? Sorry, I know nothing about immuentherapy. How long does it take?

-s