Feeling really sad and in need of support

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VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Feeling really sad and in need of support

Postby VeggieLvr » Fri May 25, 2018 8:56 am

This is such a wonderful forum and community, everyone is so wonderful and supportive. I feel bad abut writing such a downer post but I'm in a really rough place at the moment. I just finished my fourth treatment and it's just so hard - they haven't reduced the Oxi yet so maybe I need to ask them about that. Even though I've found a way to make treatments a bit easier by doing restricted calorie-fasting, it's still so hard to get through them. I absolutely hate being connected to the pump for two days, I get anticipatory nausea on the drive to the appointments, I can barely drink even lukewarm water during treatment and always end up dehydrated which obviously makes me feel even worse (they gave me fluids on disconnect this time which helped and I think I'll need to do that going forward). I wonder how I'm going to find the strength to go through however many more rounds I need, which at Stage IV could be many.

I read stories of Stage IV survivors and people getting to NED, and I feel encouraged - but then I read about others who don't make it and it gets me down...and I just feel so terrible for everyone dealing with this terrible disease. Sometimes I feel like I want to quit treatment and enjoy whatever time I have left without all this suffering...but I only just started this journey and I know I need to keep fighting.

I really do enjoy my good days, and cherish the time I get to spend with my friends and family. I schedule my life in advance around my good weeks so I have something to look forward to. My mom and husband are my only family and have been wonderful, but I feel terrible that they need to go through this too. My friends have been so supportive and amazing, which I am grateful for. My mother-in-law is coming to visit from Australia soon for over a month, which I am looking forward to (she's lovely), but I am sad I will have so much time when I won't even be well enough to spend time with her, and keep thinking that this may be the last time I see her.

I go to a counselor, which helps, but I've always been an over-thinker and it's hard to deal with my thoughts sometimes. I come from an abusive background and as a result have never been a particularly positive person, have dealt with depression and anxiety my whole life...I try to take it a day at a time but I already just feel so worn down and sad. Cancer really sucks and it's so very unfair that we have to deal with this terrible disease.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

Mercy110
Posts: 105
Joined: Wed Aug 16, 2017 12:13 am

Re: Feeling really sad and in need of support

Postby Mercy110 » Fri May 25, 2018 9:06 am

So sorry for your symptoms for chemo. Maybe reducing oxi is a good idea coz that’s what my mum did in her treatments and she has finished10 folfox. My mum likes having soup instead of warm water since soup has more nutrient and taste better.

Cancer is a depressive thing that always pop up to one’s mind. You may try doing exercise and keepinng yourself busy so that you do not have to think about it always.

God Bless.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

zephyr
Posts: 110
Joined: Thu Aug 18, 2016 7:31 am

Re: Feeling really sad and in need of support

Postby zephyr » Fri May 25, 2018 11:13 am

I'm so sorry for what you're going through. So very sorry. It made me teary reading your message. I've been on that ride several times and my experience has been that you just need to ride it out. It will pass but it may take a day or maybe a few days. I wish I had a better answer for you. It's hard ... it's beyond hard. There's a steep learning curve and the most frustrating part, at least for me, is that you try something on one round and if it works, great!, but if it doesn't work you need to wait another two weeks to try again. By the time you think you've finally got it about figured out, the cocktail changes and you need to start all over. Well, maybe not ALL over but more tweaking for sure.

Is your nausea only anticipatory or do you suffer with it throughout the chemo round? Are you in a medical marijuana state? I've found that a 1:1 CBD/THC vape pen helps with nausea without making me goofy. I was told that it's often the preferred choice of professionals who need relief from nausea but need to keep their wits about them. The downside is that it doesn't last very long, at least not for me. I wasn't able to take the Zofran because it worsened my side effects but at night I sometimes take lorazepam for nausea and the anxiety that tags along. You might ask your doctor about it if you haven't already.

Maybe the best piece of advice I was given early on is to be vocal about what you're experiencing. Tell the chemo nurses and make sure your doctor knows too because sometimes the information doesn't get passed along. Don't be shy and don't downplay it. They can't read your mind and they can't help you if they don't know what you're experiencing -- what you're REALLY experiencing. This has been a challenging one for me to learn and I suspect (from your background) that it might be a tough lesson for you too. My oncologist recently reduced my dosage of one especially troublesome drug. I initially objected: I'd had a very good scan (finally!) and didn't want to change anything. Not. One. Thing. He reminded me that the goal was to cure the cancer without killing the patient.

If you ever want to communicate privately with another veggielvr, fasting, Stage IV patient, please don't hesitate to PM me. It's not that I have any special knowledge - and there are certainly others on this amazing forum with a lot more experience and knowledge. I'm just throwing my hat in the ring as a friend to whom you can reach out. We're all in this together.
Oct-2009 Stage I CC
Jun-2016 Stage 3 (T3 N1c)
Jun-2016 Surgery
Jul-2016 PET: Probable Stage 4 with inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza; beg in Oct-2017, receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break; preparing for surgery
Aug-18 Recovering from German laser surgery on R lung, 8 mets removed plus middle lobe

User avatar
betsydoglover
Posts: 922
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Feeling really sad and in need of support

Postby betsydoglover » Fri May 25, 2018 12:34 pm

Sorry for your side effects. You should ask your doctor to consider Xeloda (capecitibine) tablets as an alternative to the pump ( different people experience and many find Xeloda easier (if only because you don't have to bother with pump)). Surprised you don't have Avastin your mix - common for Stage 4 and has minimal / no side effects.

Many people need an oxaliplatin reduction - your onc should be asking you about side effects and will consider dose based upon those side effects.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Fri May 25, 2018 1:09 pm

zephyr wrote:I'm so sorry for what you're going through. So very sorry. It made me teary reading your message. I've been on that ride several times and my experience has been that you just need to ride it out. It will pass but it may take a day or maybe a few days. I wish I had a better answer for you. It's hard ... it's beyond hard. There's a steep learning curve and the most frustrating part, at least for me, is that you try something on one round and if it works, great!, but if it doesn't work you need to wait another two weeks to try again. By the time you think you've finally got it about figured out, the cocktail changes and you need to start all over. Well, maybe not ALL over but more tweaking for sure.

Is your nausea only anticipatory or do you suffer with it throughout the chemo round? Are you in a medical marijuana state? I've found that a 1:1 CBD/THC vape pen helps with nausea without making me goofy. I was told that it's often the preferred choice of professionals who need relief from nausea but need to keep their wits about them. The downside is that it doesn't last very long, at least not for me. I wasn't able to take the Zofran because it worsened my side effects but at night I sometimes take lorazepam for nausea and the anxiety that tags along. You might ask your doctor about it if you haven't already.

Maybe the best piece of advice I was given early on is to be vocal about what you're experiencing. Tell the chemo nurses and make sure your doctor knows too because sometimes the information doesn't get passed along. Don't be shy and don't downplay it. They can't read your mind and they can't help you if they don't know what you're experiencing -- what you're REALLY experiencing. This has been a challenging one for me to learn and I suspect (from your background) that it might be a tough lesson for you too. My oncologist recently reduced my dosage of one especially troublesome drug. I initially objected: I'd had a very good scan (finally!) and didn't want to change anything. Not. One. Thing. He reminded me that the goal was to cure the cancer without killing the patient.

If you ever want to communicate privately with another veggielvr, fasting, Stage IV patient, please don't hesitate to PM me. It's not that I have any special knowledge - and there are certainly others on this amazing forum with a lot more experience and knowledge. I'm just throwing my hat in the ring as a friend to whom you can reach out. We're all in this together.


Thank you zephyr so much for your kind words. It really means a lot and definitely helps.

I suffer from nausea throughout the round - usually until day 4 or 5. It's much more manageable with fasting, and comes and goes a bit, so that's good at least - my first two rounds I ate normally and the nausea was severe and constant. Just brutal. I am in NY so I definitely should ask them about medical marijuana, but in the interim I have a friend who has given me some and it really does help a lot - especially in the days after where I'm not that nauseous anymore but just have no appetite. I wouldn't be able to eat without it! I agree it doesn't last that long unfortunately. I do take Zofran for the nausea, I'm sorry it worsened your side effects at night, I haven't noticed that as yet - although for this last round I mentioned how bad it gets and they gave me Ativan. Honestly I don't know that it worked any better than the Zofran but I took it as much as they said I could while the pump was on and the day after.

That's good advice about telling them my symptoms in detail - I think I have been wanting to just "power through it" and get as much of it in my system as possible in the hopes I can get through it faster, so I totally get why you initially objected to your dosage reduction. You're right that with my background it can be hard to speak up as well. I also wanted to do full doses at least until my first scan, but that is scheduled for next week (so scared of what that will show too ugh). I also haven't seen my primary oncologist in a while, so I'll be sure to tell her everything, especially based on your advice. (My main oncologist is in NYC at MSK, but I've had my last 3 treatments at the local MSK office as it's much closer to home. My next treatment is in NYC so I can speak to her then.)

Thank you again for your encouragement and support. I will be taking you up on that PM offer. :)
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Fri May 25, 2018 1:14 pm

betsydoglover wrote:Sorry for your side effects. You should ask your doctor to consider Xeloda (capecitibine) tablets as an alternative to the pump ( different people experience and many find Xeloda easier (if only because you don't have to bother with pump)). Surprised you don't have Avastin your mix - common for Stage 4 and has minimal / no side effects.

Many people need an oxaliplatin reduction - your onc should be asking you about side effects and will consider dose based upon those side effects.

Take care,


Thank you betsydoglover. I will definitely speak to my doctor about those options. No one has mentioned Avastin to me yet, maybe because I am so new to treatment, but minimal to no side effects sounds amazing. I will ask about lowering the oxi too, hopefully that will help too. It's been full dose for all four rounds thus far. Anything to make it even a little bit easier is worth it.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Fri May 25, 2018 1:20 pm

Mercy110 wrote:So sorry for your symptoms for chemo. Maybe reducing oxi is a good idea coz that’s what my mum did in her treatments and she has finished10 folfox. My mum likes having soup instead of warm water since soup has more nutrient and taste better.

Cancer is a depressive thing that always pop up to one’s mind. You may try doing exercise and keepinng yourself busy so that you do not have to think about it always.

God Bless.


Thank you Mercy110, I agree that reducing the Oxi is probably the way to go at this point. That's a good idea your mum did with the soup, that would help with the awful taste I get in my mouth as well so I will try that.

You're right, cancer is depressing...it's the worst ugh. On my good days I do like to get out, I agree that does help. I do need to exercise more for sure - I am very inconsistent with it but I am sure it will help if I do it every day I feel up to it.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

heiders33
Posts: 275
Joined: Sat Nov 04, 2017 11:08 am

Re: Feeling really sad and in need of support

Postby heiders33 » Fri May 25, 2018 1:25 pm

VeggieLvr, I am in NYC as well. If you ever want to get together for a cup of coffee and chat when you’re here just send me a DM. I am not stage 4 but happy to talk if you want. Just let me know.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

zephyr
Posts: 110
Joined: Thu Aug 18, 2016 7:31 am

Re: Feeling really sad and in need of support

Postby zephyr » Fri May 25, 2018 2:08 pm

VeggieLvr wrote:No one has mentioned Avastin to me yet, maybe because I am so new to treatment, but minimal to no side effects sounds amazing.


There are side effects to Avastin but many people do not experience them. It's an amazing drug but you should be aware of the known side effects in case you start experience strange symptoms. I had to go off Avastin and take a two month chemo break because of healing issues.

https://www.webmd.com/colorectal-cancer/avastin-questions-answers
Oct-2009 Stage I CC
Jun-2016 Stage 3 (T3 N1c)
Jun-2016 Surgery
Jul-2016 PET: Probable Stage 4 with inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza; beg in Oct-2017, receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break; preparing for surgery
Aug-18 Recovering from German laser surgery on R lung, 8 mets removed plus middle lobe

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Fri May 25, 2018 6:21 pm

heiders33, thank you so much, that's so kind of you. That would be lovely, I will reach out to you before one of my next trips into the city. :)

zephyr, I'm sorry you ended up with healing issues on Avastin. I'm totally unfamiliar with that drug so I really appreciate the link, thank you!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

User avatar
ANDRETEXAS
Posts: 585
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Feeling really sad and in need of support

Postby ANDRETEXAS » Fri May 25, 2018 8:18 pm

I would never say "I know what you're going through" because I don't. Every single person's side effects are different for different drugs and different amounts of drugs. I can only say that I have experienced going through 12 rounds of FOLFOX with full oxi. It is not easy. But from the beginning, and I can't really explain it....I put my mind in a place by itself...I talked to it every night...I never got ahead of myself....I put myself in some sort of fog for five months....I walked 2 miles a day through the first 5-6 rounds, and then as much as I could from 7-12 because FOLFOX does make you tired. I also had fluids each time, and it helped tremendously. I am generally an optimistic person, so setting goals for treatment came easily to me. I really never considered that FOLFOX would not work. I had total faith in my oncologist, and we addressed my treatment plan before each round (my seriousness of my side effects and what was best and what I wanted to do). I stayed the course.....and just went about my life with one goal in mind...the months flew by faster than I thought. You can so this. Is it going to be easy? No. But if you are determined and have faith in yourself and your ability to face obstacles, you can do it. All the best to you....Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sat May 26, 2018 7:02 am

ANDRETEXAS wrote:I would never say "I know what you're going through" because I don't. Every single person's side effects are different for different drugs and different amounts of drugs. I can only say that I have experienced going through 12 rounds of FOLFOX with full oxi. It is not easy. But from the beginning, and I can't really explain it....I put my mind in a place by itself...I talked to it every night...I never got ahead of myself....I put myself in some sort of fog for five months....I walked 2 miles a day through the first 5-6 rounds, and then as much as I could from 7-12 because FOLFOX does make you tired. I also had fluids each time, and it helped tremendously. I am generally an optimistic person, so setting goals for treatment came easily to me. I really never considered that FOLFOX would not work. I had total faith in my oncologist, and we addressed my treatment plan before each round (my seriousness of my side effects and what was best and what I wanted to do). I stayed the course.....and just went about my life with one goal in mind...the months flew by faster than I thought. You can so this. Is it going to be easy? No. But if you are determined and have faith in yourself and your ability to face obstacles, you can do it. All the best to you....Andre


ANDRETEXAS, thank you for sharing your experience and for your support and encouragement. 12 rounds with full oxi sounds unbearable to me right now, but then again so did four rounds (after that first treatment) so I've made it this far. Did you walk during treatment or after? I'm on day six today (3rd day after disconnect) after my last treatment and am finally feeling like I can do some exercise today. I know exercise helps a lot and I need to do it more consistently - just couldn't imagine doing it in the days during and right after treatment.

Do you have any lingering side effects? I am experiencing neuropathy that is almost constant (especially in my feet) but not quite. The last several treatments they keep asking me about it and each time they say "you're still able to zip up your shirt okay?" which scares me because I use my hands a lot and it would be terrible for me to not be able to use a zipper! I also get this weird effect that I call "claw hands" where it's like my fingers are being pulled together and it's like I am fighting against my hands to use them...my thumbs in particular seem to involuntarily pull towards my palms. It comes and goes, it's worse while I'm connected and goes away completely in the couple of days before my next treatment, then comes back as soon as treatment starts. It scares me and I don't like it one bit!

One more question if you don't mind - did you have any breaks in between your rounds? My next treatment is going to be one week behind as my NYC oncologist will be away for when it was originally scheduled, so I get an extra week break (which I am very happy about!). I did ask them if it's okay to do that and they assured me it was fine, so i am considering asking for another one week delay while my mother-in-law is here so I can spend more time with her and maybe even go away with her for a few days.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: Feeling really sad and in need of support

Postby lakeswim » Sat May 26, 2018 7:49 am

VeggieLvr wrote:
ANDRETEXAS wrote:I also get this weird effect that I call "claw hands" where it's like my fingers are being pulled together and it's like I am fighting against my hands to use them...my thumbs in particular seem to involuntarily pull towards my palms. It comes and goes, it's worse while I'm connected and goes away completely in the couple of days before my next treatment, then comes back as soon as treatment starts. It scares me and I don't like it one bit!


Hi VeggieLvr.
I have had that claw hands thing before - many years ago. I was not on chemo - so completely different situation. But I had been dizzy, then started vomiting for hours, then got the claw hands. That sensation is very bizarre and scary. They told me at the ER that my potassium levels were low from vomiting for so long and explained it as a side effect of my low electrolytes. (I have read claw hands is also a sign of hyperventilating from a panic attack.) Anyway, I know how bizarre that is and I'm sorry you're going through it. What does your ONC say about the claw hands?

I think I'm going to watch your posts - as you are ahead of me with your FOLFOX treatment (though I think yours is after surgery while mine is the first thing I'm doing). Good luck and I hope you get some relief.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

lovelife789
Posts: 108
Joined: Thu Aug 24, 2017 5:28 am

Re: Feeling really sad and in need of support

Postby lovelife789 » Sat May 26, 2018 7:55 am

I read stories of Stage IV survivors and people getting to NED, and I feel encouraged - but then I read about others who don't make it and it gets me down...and I just feel so terrible for everyone dealing with this terrible disease. Sometimes I feel like I want to quit treatment and enjoy whatever time I have left without all this suffering...but I only just started this journey and I know I need to keep fighting.


I can't say I know how you feel physically, but I know how you probably feel emotionally. The latter part of your para here really motivated me to share my experience. I, at one point (actually for a short period of time), insisted and told my close family that if I have a recurrence, I will not spend anymore money in treating it, killing it, fighting it, whatever people wanna call it. I wept endlessly and felt really, really tired, just bone tired. I had Erbitux as targeted therapy and I had serious breakouts on my face, chest and back, of which the marks are still very visible now. I wanted to exercise but I looked so bad I think even kids would be scared away screaming. I had two major liver resection and removed 70% of my liver. After the surgeries, my back was killing me with very little muscle left and sitting around all day, I just had port installed then and it was giving me pain too, so I could not do any exercise due to woundssss healing and fatigue from many rounds of folfox (I did 13 rounds).

2 weeks after I had my last round of chemo treatment in Dec last year, I immediately took a short trip with my loved ones and another one 1 month later. Right after, I changed my mind, I told my mom calmly if this bloody disease comes back, I will fight it. I'm willing to stick that needle in my port, which has become my friend now and go through those crappy nausea feeling, neuropathy, terrible, terrible first bite syndrome :evil: :evil: :evil: , hair falling off and may be (!) those breakouts all over again. Because every single minute I have enjoyed treatment free in the past 6 months were so worth it. My mom almost couldn't believe her ears, and 2 months later, I said I'm not desperate to get the port out, it can stay in (I originally said I needed it out right after chemo, like on the very next day).

I feel that part of the reasons why the whole cancer fighting journey is so painful and dreadful is because (on top of physical sufferings) it puts you off from your normal life, you suddenly cannot go about your daily routine, people would come out of nowhere telling you you can't have sweets, have a dozen of food they want to recommend you taking that can magically cure cancer, the whole self identity is diminished into a statistics of a terrible disease or a "patient"- and where is ME? It takes time, give yourself time, to get used to the routine of doctor's appointment, add something that gives you a sense of satisfaction in your daily life helps (for me, I did puzzle and for every piece I finished I felt more confident chemo brain hasn't got to me...), rant on forum here, have your family let you help with some housework (folding some clean laundry), on the bad days weep all you want but do a self talk (i.e. Ok I let you weep for 10 mins, but give me 10 mins of positivity so your body chemistry can work in your favour sth like that) and let out your frustration all help a little bit.

btw, I did some Chinese stretching started 7th round of chemo which helped neuropathy a lot, 2 months after my last treatment, all my neuropathy was gone. I believe regular stretching that brings more blood circulation to fingertips would work similar way too.

Hang in there!!! It's worth it, life is worth it, I promise you!!!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that has always been there grew from 5mm to 8mm - CEA 1.0
Aug - VATs scheduled

lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: Feeling really sad and in need of support

Postby lakeswim » Sat May 26, 2018 8:06 am

lovelife789 wrote:
the whole self identity is diminished into a statistics


I don't want to hijack VeggieLvr's stream but I wanted to tell you that the sentence above really resonates with me. It's all about the damn statistics. But I guess those stats have gotten us some of the treatment we have. I try to remember that when I get mad when they cite yet another percentage.

So much of what you said hit home - but I am curious about the chinese stretching. Where can I find info on that? I find myself lying around too much already.

AND I am curious about the first bite thing. Mine seems bad after just this first round. So, it gets worse and worse? How did you eat? I start to dread it. I feel for you if yours was particularly bad.

Lastly, my infusion nurse and my homecare nurse both told me that the experience I have this week (after my first FOLFOX infusion) will be how it will be for all the rounds. But everyone here says it gets worse! Who to believe? (I believe the patients!)

Thanks for your post.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)


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