Postby Rock_Robster » Tue Jan 03, 2023 12:03 am
This is such a good question, as I think sometimes identifying what we’re actually most afraid of (and not afraid of) is key to then managing that fear.
So firstly, what I’m not afraid of:
- I’m not afraid of being dead, or the afterlife. I’m not religious, so my only assumption is that it’s the same as before I was born - which as far as I can remember was fine.
- I’m not super afraid of dying itself. I figure I’ll be out of my gills on opiates and anti-anxiety meds if all goes to plan. Worst case scenario, Voluntary Assisted Dying has just been approved in my state, which is definitely a relief.
- I’m not too afraid of treatments. I like action, and can handle procedure. Surgeries are great. Having an ostomy was manageable. Radiation was like a part-time job. Chemo sucks donkey balls, but I can manage it.
So what I am afraid of:
- Firstly, I’d say I’m afraid of fear itself. Getting bad news, hearing ominous things, and the stress and torment it puts my wife and family through. Hearing that no more can reasonably be done. Living life in fear of the next piece of bad news or medical crisis. Even the ‘good times’ being full of foreboding joy.
- Making hard choices. Stopping treatment, starting hospice, using VAD. “Choosing” to die is just unfathomable to me. Easier if it happens to me without my consent.
- Uncontrolled pain. I’m not good with pain. I like pain meds and hope they work and continue to work. I hope to have a good proactive palliative care team.
- Loss of agency. This is probably the biggest one. Being the “sick one”. Not being able to work, to contribute, to be a husband, friend, etc. Only getting sympathy. Life being nothing but medical appointments, pain, treatment. Not being a complete person any more. Losing the things that make me, me.
- More than anything though, I’m afraid of - and most sad about - missing out. At 40 years old, I feel like I’ve been cheated out of another 40 amazing years of my life and time with my wife. That part is just not fair. But nothing about this disease is fair.
Well, that’s my list. Thanks for the audience.
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial