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Started By
Message
re: Cancer...Is the pain or the mental battles the worse?
Posted on 6/18/23 at 9:35 pm to TigerinPurgatory
Posted on 6/18/23 at 9:35 pm to TigerinPurgatory
Non-Hodgkin’s lymphoma Sporadic Burkitt’s lymphoma.
Surgery
bone marrow transplant
inpatient chemo
Pain- mostly from the tumors in the lower abdomen pressing against my nerves.
mental strain- in the beginning you don't know what to expect for surgery and treatment.
Surgery - easy 8 hours. I was up walking the next morning as my surgery went to 3 am. Walk alot to wake up your stomach area which is where they did my surgery. I was in the hospital a week.
Bone Marrow transplant
- don't feel needle going in if the numb it right
- feel needle when it near the bone.
- In a room with a room before the room where nurses, doctors, limited visitors put the chicken suit (body suit, gloves, mask), and almost isolated for a few days.
Chemo
- 4 treatments mostly 1 to 2 weeks inpatient.
- Come home and rest for a few days when counts get back up go back in for your next treatment.
- First time your hips jump and hurt from bone marrow trying to produce blood cells when your anemic is scary.
After that you understand it is coming and isolate a few days as you blood counts are low.
- Hated when they did the spinal tap to put chemo in my spine.
If they offer to put the thing in your head then do it versus doing the spinal tap.
- 1st one is rough as have to adjust to the medications to counter act the chemo.
- Lose body hair, hair on your head, eye lashes, mouth sores, etc.
Minor stuff, but yes it wears on you mentally.
- After that you have good and bad days.
All I can really say is you going to have good and bad days.
Take them in stride and your job during this time is to get better.
If you have any pain or usual things going on let the PA or doctor know during those visits.
Surgery
bone marrow transplant
inpatient chemo
Pain- mostly from the tumors in the lower abdomen pressing against my nerves.
mental strain- in the beginning you don't know what to expect for surgery and treatment.
Surgery - easy 8 hours. I was up walking the next morning as my surgery went to 3 am. Walk alot to wake up your stomach area which is where they did my surgery. I was in the hospital a week.
Bone Marrow transplant
- don't feel needle going in if the numb it right
- feel needle when it near the bone.
- In a room with a room before the room where nurses, doctors, limited visitors put the chicken suit (body suit, gloves, mask), and almost isolated for a few days.
Chemo
- 4 treatments mostly 1 to 2 weeks inpatient.
- Come home and rest for a few days when counts get back up go back in for your next treatment.
- First time your hips jump and hurt from bone marrow trying to produce blood cells when your anemic is scary.
After that you understand it is coming and isolate a few days as you blood counts are low.
- Hated when they did the spinal tap to put chemo in my spine.
If they offer to put the thing in your head then do it versus doing the spinal tap.
- 1st one is rough as have to adjust to the medications to counter act the chemo.
- Lose body hair, hair on your head, eye lashes, mouth sores, etc.
Minor stuff, but yes it wears on you mentally.
- After that you have good and bad days.
All I can really say is you going to have good and bad days.
Take them in stride and your job during this time is to get better.
If you have any pain or usual things going on let the PA or doctor know during those visits.
This post was edited on 6/18/23 at 9:39 pm
2
Posted on 6/18/23 at 9:49 pm to TigerinPurgatory
Mental is worse. For me. Lung cancer, non-small cell, stage 3. Finishing Infimzi immunotherapy next month. So far it seems like the cancer is gone, dissolved with the Infimzi after the chemo and radiation.
But yeah, you feel alone and end up wondering if it was worth it, if you don’t watch out. I’m so tired. So tired. It’s hard to know what causes all the joint pain I have now. Bad, bad trigger finger and muscle spasms at times.
The radiation was worst for me, too. Couldn’t eat right for several weeks. Pain meds did not work well at all. Constipated the hell out of me.
My body is wrecked, but it’s mostly fatigue and joint pain. Cannot take anything but Tylenol for any inflammation. Once the immunotherapy is over I will have a better handle on what my body is really like.
The biggest key is to not stress out. That is hard, but there are prescriptions for that.
But yeah, you feel alone and end up wondering if it was worth it, if you don’t watch out. I’m so tired. So tired. It’s hard to know what causes all the joint pain I have now. Bad, bad trigger finger and muscle spasms at times.
The radiation was worst for me, too. Couldn’t eat right for several weeks. Pain meds did not work well at all. Constipated the hell out of me.
My body is wrecked, but it’s mostly fatigue and joint pain. Cannot take anything but Tylenol for any inflammation. Once the immunotherapy is over I will have a better handle on what my body is really like.
The biggest key is to not stress out. That is hard, but there are prescriptions for that.
Posted on 6/18/23 at 9:52 pm to johnnyrocket
quote:
johnnyrocket
frick, man. I’m so sorry.
Posted on 6/18/23 at 10:12 pm to CCT
I am very lucky.
I had my cancer 30 years ago.
I survived which alot of people were not as fortunate as me.
I had my cancer 30 years ago.
I survived which alot of people were not as fortunate as me.
Posted on 6/18/23 at 10:22 pm to TigerinPurgatory
The cancer doesn’t kill you, the treatment does.
Posted on 6/18/23 at 10:23 pm to TigerinPurgatory
I’m sorry you’re going through this. May god give you and your family strength. God bless.
Posted on 6/18/23 at 10:41 pm to TigerinPurgatory
Depends where it is at.
Radiation destroyed my throat and mouth.. 17 months later still have significant issues, like no sliva and scar tissue making it hard to swallow.
Chemo made me ill but it lasted only a few days.
The cancer for me wasn't painful except for a sore throat prior to treatment.
However, other parts of the body cancer can be extremely painful....pancreas is one.
Radiation destroyed my throat and mouth.. 17 months later still have significant issues, like no sliva and scar tissue making it hard to swallow.
Chemo made me ill but it lasted only a few days.
The cancer for me wasn't painful except for a sore throat prior to treatment.
However, other parts of the body cancer can be extremely painful....pancreas is one.
Posted on 6/18/23 at 10:55 pm to TigerinPurgatory
For me, it's the pain. Mine is bladder. As others have said, a whole lot of it is from the treatment. The chemo nearly did me in itself back in September. Spent 12 days in the hospital over 3 stays just during that time. Radiation can really do a number on your organs as well.
Mental for me has not been bad. I've been lucky and led a blessed life with great family, friends, neighbors, etc. For loved ones, of course the mental and emotional part can be difficult.
Mental for me has not been bad. I've been lucky and led a blessed life with great family, friends, neighbors, etc. For loved ones, of course the mental and emotional part can be difficult.
Posted on 6/18/23 at 10:57 pm to BHTiger
quote:
painful....pancreas is one.
Just lost a dear friend to that. Diagnosis to passing, five weeks. Unreal
Posted on 6/18/23 at 11:07 pm to Rouge
This is accurate
Posted on 6/18/23 at 11:53 pm to CCT
quote:
For me. Lung cancer, non-small cell, stage 3
My dad had "oat cell" lung cancer. I don't remember what stage it was, but he had a terrible prognosis. He had quit smoking in the late '60s, but had been smoking like a broke stove for years when he was in the Air Force. (People were trying to kill him, I understand.)
He did as well as can be expected in chemo. Every thing looked positive. His oncologist suggested 28 radiation treatments to his brain because this particular type of cancer was prone to metastasized to the brain. We were forewarned about potential problems, such as early onset dementia. The estimate was 6 or 8 years.
We knew something was wrong in late Spring. By his birthday, July 3rd, he was hospitalized. He was dead by mid-October.
It was a huge mind frick. He "beats" a cancer with a shitty prognosis, but ends up dieing anyway.
Posted on 6/19/23 at 9:57 am to johnnyrocket
quote:
Non-Hodgkin’s lymphoma Sporadic Burkitt’s lymphoma.
Apologize for the length of this post. So much has happened in only a few months.
*****
6 months ago, I wouldn’t have known what Burkitt’s is; my otherwise-healthy husband was diagnosed with Triple Hit Lymphoma in January. Triple Hit is similar to Burkitt’s in the small percentage of NHL patients affected and in its aggressive nature. As I write this, we are at the hospital waiting for them to take him back for bone marrow biopsy. It’s been a tough year. I’m a 10 year breast cancer survivor, but I don’t compare our two experiences. Mine was lumpectomy, radiation and aromatase inhibitors for 5 years. His was 6 21-day cycles, with the first 5 days of each cycle spent in the hospital for 24 hour chemo. 4 of the inpatient stays included the spinal infusions of methotrexate; he’s not a fan of the spinal injections, either. He tolerated them well, but the procedure itself usually left him with a headache and angry. The only significant pain was excruciating headaches after the first round. He has a high tolerance for pain, but it was excruciating. They did a CT and he had a brain bleed; he’d been put on anticoagulants due to blood clots shown in chest CT, but they had to stop them. He vomited once, during the first Rituxan infusion. He would have occasional nausea, but it was easily controlled with meds. He’d lost 65 lbs before treatment-in a few months. He actually gained weight during chemo; his appetite remained pretty strong, it was just a matter of finding what he could eat. He had pregnancy-level cravings. (Steroids). The biggest issue was extreme, crushing fatigue when his counts bottomed out.
Pre-treatment diagnostics indicated involvement w/ spleen, kidney, bone marrow and multiple lymph nodes. 5 months later & post-treatment PET showed complete response to treatment and no evidence of disease. Hallelujah! If the bone marrow is clean, his port comes out. He still has consult with radiation oncologist to see if there is additional benefit in chest wall radiation; primary mass was on mediastinum. Blood clots resolved as did brain bleed. We have resumed some normalcy; meeting friends for dinner, hanging out with family, going to the grocery store... We made it through 4 innings of Regionals and the entire Game 2 of Supers. He is back to mowing the lawn and is increasingly active. He is a walking miracle. His “frame” looks like him. His face looks like him. He doesn’t look frail anymore; his gait is different due to some neuropathy, but it’s improving.
I think the mental aspect is more of an issue for him now, post-treatment. Everything happened so quickly, there wasn’t a lot of time for hand-wringing through diagnosis and chemo. During treatment, there was constant support from family, friends, nurses, Drs, lab techs etc., but post-treatment seems to be more isolating. Your medical team becomes family, and you miss them. The “battle” mindset changes as you transition to survivorship.
The one thing that has been consistent between his experience and mine is the people you meet. The oncology field draws exceptional people, and they are absolutely angels. We had so many people praying for us. My biggest recommendation would be to reach out to praying people you know (or don’t know) and ask for specific prayer. I don’t like the term “caretaker”-I am his wife-but having people pray for both of us was a game changer. “Doom-scrolling” on the internet rarely has a positive result, but I think many of us are compelled to do it. I finally got to the point where I’d start & recognize that it was toxic and I’d do a Bible study in the Bible app instead.
To the OP, if you’re facing this, make sure your oncologist is the best. Ask around, almost everyone has a loved one who’s had cancer. It’s so important. Ask a medical professional who they’d treat with if they were diagnosed with cancer. I thank God for ours. Take everything a day at a time, because things can change so quickly.
quote:
Johnnyrocket
Prayers for you with Burkitt’s.
Posted on 6/19/23 at 10:12 am to BHTiger
quote:
Radiation destroyed my throat and mouth.. 17 months later still have significant issues, like no sliva and scar tissue making it hard to swallow.
my then 76-yr-old dad was diagnosed with throat cancer 3 yrs ago. Did chemo and radiation, lost all of his teeth, throat is still raw and never really healed from the treatment. Had the feeding tube because he couldn't eat, swallow, or drink. He has no strength and atrophy has set into his muscles. Sadly he's dying a slow miserable death and is ready to check out.
Not sure how much time he has left as cancer sucks. I've come to face reality and know one day soon I'll be getting that call from my mother or brother. prayers and support sent for everyone that's been affected by cancer and experienced it first-hand.
.
This post was edited on 6/19/23 at 10:14 am
Posted on 6/19/23 at 10:33 am to VernonPLSUfan
quote:
Daughter found out she had cancer just after Easter. After chemo she wasn't the same person. Died next Feb. That's what was hard.
No greater pain than watching your child suffer, none.
Posted on 6/19/23 at 11:15 am to BHTiger
[quote]Radiation destroyed my throat and mouth.. 17 months later still have significant issues, like no sliva and scar tissue making it hard to swallow.
Same here. Had 33 treatments of radiation 10 chemo. Im 11 months in recovery. Doing better than some i guess still a few throat issues but over all ok. Mentally this crushed me way worse than the treatments. Good news is the tumor is gone and im getting better, many people a lot worse off, i'm Blessed!
Same here. Had 33 treatments of radiation 10 chemo. Im 11 months in recovery. Doing better than some i guess still a few throat issues but over all ok. Mentally this crushed me way worse than the treatments. Good news is the tumor is gone and im getting better, many people a lot worse off, i'm Blessed!
Posted on 6/19/23 at 11:35 am to TigerinPurgatory
All cancer is different as are the patients. Tough to generalize.
Last December I got diagnosed with stage 4 melanoma in lungs, stomach, skull, brain, femur, appendix and gall bladder. I immediately got taken off my leukemia chemo since it was probably demolishing my immune system to cause such a rapid spread. I thought I was about finished.
A month later I got put on infusions and when they did a rescan two months later melanoma shrinkage everywhere from 30 to 50%, rescanned again three months later and continued significant shrinkage of another 30- 50% and only one new brain melanoma identified.
I feel great, being off chemo makes a world of difference and my leukemia is in remission. Don't know how long this stuff will work but it activated the shite out of my T cells and cancers arse is presently being kicked.
Previous had prostate cancer (radiation) and several surgeries for skin melanomas removed. Nothing caused any pain but the chemo for the leukemia and that was very bearable.
if there is a point to the story it is medicine is getting better, and sometimes you get lucky. in my case i've been lucky often. Also, don't know how long this will work but for now I am more than pleased.
Last December I got diagnosed with stage 4 melanoma in lungs, stomach, skull, brain, femur, appendix and gall bladder. I immediately got taken off my leukemia chemo since it was probably demolishing my immune system to cause such a rapid spread. I thought I was about finished.
A month later I got put on infusions and when they did a rescan two months later melanoma shrinkage everywhere from 30 to 50%, rescanned again three months later and continued significant shrinkage of another 30- 50% and only one new brain melanoma identified.
I feel great, being off chemo makes a world of difference and my leukemia is in remission. Don't know how long this stuff will work but it activated the shite out of my T cells and cancers arse is presently being kicked.
Previous had prostate cancer (radiation) and several surgeries for skin melanomas removed. Nothing caused any pain but the chemo for the leukemia and that was very bearable.
if there is a point to the story it is medicine is getting better, and sometimes you get lucky. in my case i've been lucky often. Also, don't know how long this will work but for now I am more than pleased.
Posted on 6/19/23 at 11:38 am to Methuselah
quote:
. Mine is bladder. As others have said, a whole lot of it is from the treatment. T
I have Leukemia. The only pain comes from swollen lymph nodes or swollen organs.
Ive been on an oral chemo for 18 months, and just finished 6 cycles of infusion.
The mental part is easy, its the routine and constant appointments I hate.
Posted on 6/19/23 at 6:06 pm to 4LSU2
Stage 4 Colon
Posted on 6/19/23 at 6:33 pm to TigerinPurgatory
mental battles
even with a strong support system, many will consider suicide at least once.
they have to tell themselves to keep going constantly.
and for what? We're all going to die someday. Would it be better for your family to just get it over with? Would it be better for you?
.
.
see what I mean? Your head goes places when you have any serious illness, and you have to deal with it. constantly. 24/7
even with a strong support system, many will consider suicide at least once.
they have to tell themselves to keep going constantly.
and for what? We're all going to die someday. Would it be better for your family to just get it over with? Would it be better for you?
.
.
see what I mean? Your head goes places when you have any serious illness, and you have to deal with it. constantly. 24/7
Posted on 6/19/23 at 6:40 pm to CCT
quote:
I’m so tired. So tired.
One of the last things my Mom said to me when she was still fully lucid and in Pallative care before coming home to hospice (metastasized breast cancer) was this. And that she just wanted to be home again and was ready to see her Daddy and son (my brother passed in 2009). The one thing I’ll never regret is being in a position to bring her home for her last days. Even if it was incredibly hard on us.
quote:
The radiation was worst for me, too. Couldn’t eat right for several weeks. Pain meds did not work well at all. Constipated the hell out of me.
That’s where it really went downhill for her. Mets on her brain and the radiation caused some decent cognitive issues. As well as sores in her mouth and on her head.
Not too long after her kidneys started shutting down (what put her in her last hospital stretch) and the oncologist basically said her body just couldn’t handle the treatment anymore.
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