Mental Health Help and General support.
I was diagnosed with Pancreatic adenocarcinoma Stage 1A - Valentines day 2020, age 48 Male- so I just passed 3 years! I got lucky and had jaundice eventually, the CT scan the prior week missed my tumor. I had 6 rounds of Folforinox, & had a Whipple at AdventHealth Orlando.
I have really bad PTSD, probably like a survivors guilt and have been very negative, aggressive, anxiety and probably a little depression.
I want to hide behind it all, and have been drinking Red wine quite heavily to numb the thoughts, and get some sleep. I take anxiety meds and CREON only (not including all the Iron, Vitamin D, B3, B12 and Thyroid meds).
I was blessed to get a second chance, and really need some help. I have a medical Marijuana card in a Medical Legal state, and that really helps kick start up appetite. I can't use it in the day as I need to function for work and well; function as a non stoner! So I tend to eat late. My diet is mixed, there is absolutely no hunger trigger to my brain otherwise. I easily go 3 days without eating a single thing. I am maintaining weight luckily, but I shouldn't imagine I'm getting the best nutrition these days.
Anybody experienced anything similar? Are there Hospices that offer a stay for a few days, or any that provide mental Health support?
I saw a mental health counsellor for about 6 or 7 visits last year, but I really didn't get much from it, as I don't think the understood the mental strain and anguish living through this terrible disease.
All advice greatly appreciated!
WesternBayFisher Member Posts: 2 *
I am in a similar position in terms of age and stage but unfortunately had a PDAC relapse about 12 months after my Whipple’s surgery and Folfirinox treatment. As the relapse was in my liver I stopped drinking and have started to be very nice to my liver. It’s kind of crappy advice but I would suggest (i.) being nice to your liver because it is where PDAC likes to go second, and (ii.) having on-going monitoring CT scans as often as possible. We found out the hard way that the blood markers like CEA and CA19-9 can be unreliable.
Similarly, medical marijuana may be is useful for sleep and appetite and helping with neurological stuff during chemo but I have tended to keep away from that because it can be an immunosuppressant which is not so good if you are suitable to go down the immunotherapy route.
I would also suggest (iii.) getting your PDAC screened for MSI/dMMR as soon as possible (preferably at the first biopsy) because if you are one of the lucky few (5%) then immunotherapy may be for you - and it can be a game changer that is way better to factor into your treatment regime than chemo.
Some of the meds I take need to be taken with food so that means I can’t miss meals. I guess if you are not losing weight or condition then you probably don’t have to worry too much about it. It’s the wasting that Cancer does when you are eating normally that is scary.
I have linked up with our local hospice (which unfortunately is on the other side of the world from you) and they are awesome at managing this stuff and do offer short stays and mental health support but your cancer would need to be stage 4 before you could get referred there.
It’s awesome that you are still working. I really enjoyed my last 6 months of work and was genuinely happy to be able to be there.
All the best with your journey and sorry for the crappy advice. Stay positive - PanCan is a **** that can be beaten - and the journey can be fun too as long as you keep laughing and keep smiling!
Thanks for your thoughtful reply, much appreciated!
I am English but lived in USA since 2005. The medical bills and navigating the hospital systems is a nightmare! My 2020 total medical expense was $700K! Thankfully I have good insurance!
Being America, and how we love paying out the butt for medical expenses, I could find somewhere that will take my money I'm sure!
I am on a medical trial which has been showing good results, I have a blood screening every 2 months that can detect early cancer cells - Signatera Residual Disease test, Have full panel blood work every 3 months and CT scan. I probably glow in the dark from all the radiation! ;-)
I carry the BRCA2 mutated gene, so the cancers are random, my mom had breast cancer, my sister had a hysterectomy last year to minimize her risks, it seems most on my mothers side carry it, direct cousins also. It's a 50/50 apparently if you pass it on, but everyone who has tested on my moms side are BRCA2 also.
I will heed your words on not drinking, I know it's not good! It's just a support but it is becoming habitual! I went to a few AA meetings, but I don't feel I'm an alcoholic, just want to give up for health! I'm not a wake up drink a gallon of Vodka for breakfast drinker, so again I didn't feel part of the system, but it's the best few dollars you will spend on mental health 'Counselling' in front of people that are also hurting for multiple reasons.
Appreciate your time and thanks for messaging!0
stevenbcdk Member Posts: 3 Member
Hi all. I had my whipple in January 2022. After 12 sessions of chemo I’m using creon with every meal because I can no longer digest my food. I’m taking insulin every day because my body can no longer produce it. I still have issues with digestion and fatigue. I have neuropathy to a point I can feel the bottom of my feet. As you I suffer from depression sometimes wishing my cancer would return and let me die. My Ca-19 number is starting to increase but CT scan shows no growth. At 77 I went to work PT due to the economy but I can’t be far from a toilet so I had to quit. I find that smoking cigars relaxes me and helps with depression. Former LE so I find it difficult to use marijuana . I want to say hang in there. We are survivors and each day is a blessing. We will never get beyond “watch and wait”. Take care and enjoy your life as best you can0
Codetalker Member Posts: 2 Memberedited April 3 #5
I'm really sorry for the diagnosis you have to face.
Regarding your question about hospices, some hospices do offer short-term stays for patients who need additional support, including mental health support. However, hospices are generally for end-of-life care, so you may want to look into other options if you're not at that stage yet. There are also palliative care programs that focus on improving the quality of life for patients with serious illnesses, and they can provide a range of services including symptom management, emotional support, and assistance with navigating the healthcare system.
In terms of mental health support, it's important to find a therapist who specializes in working with patients who have cancer or other serious illnesses and will have a better understanding of what you're going through and be able to offer more tailored support. You can also consider joining a support group for cancer patients, either in person or online. Sharing your experiences with others who are going through something similar can be very helpful.
It's good to hear that medical marijuana has been helping with your appetite, but it's important to use it responsibly and in consultation with your healthcare providers. There may also be other medications or supplements that can help with appetite and nutrition.0
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