The Colon Club

....it's been 4 weeks since you disconnected me...

and I'm just not feeling it. No sense of relief that I'm done chemo, no real sense of accomplishment, just this lingering feeling there's still something wrong inside me. My post chemo CT scan was clear, but I am scheduled next Thursday for a PET because my CEA levels are still going up.

I don't have the constant nausea, and my brain feels much, much clearer but physically I feel possibly worse than before the colectomy. No stamina, still unable to sleep for 8 hours straight, aches and pains everywhere, full blown neuropathy that showed up after round 10 accompanied by a lack of balance. Cold drinks still numb my lips and my interest in food is only because I know I should eat. The really weird thing is that sometimes I look at my arm and miss my PICC line as I knew it was there to help me slay the beast.

I know many others here are going through much worse and I really am trying to "suck it up, buttercup"...

mob

For those that don't know "the Ladies" here's the song that I sort of channelled...
https://youtu.be/fC_q9KPczAg

mobrouser wrote:...., aches and pains everywhere, full blown neuropathy that showed up after round 10 accompanied by a lack of balance.
]

While it took me about 6 months, walking REALLY helped me and still does. I mostly live a normal life today, thanks to my daily walking. I was sooooo slow when I started, butt now I power walk. Radiation, chemo aches and pain left me looking like granny who needed a cane. And I was only 47 then. This was after 12 rounds of FOLFOX

If you can walk, do it. I suffered a clot in my hip 3-4 yrs following treatment and another surgery (we all believe clot was radiation related). I walked around my cul-du-sac, once, then twice, to the end of the block, to the school, and beyond, etc,. Now I power walk. My PCP feels my power walking prior to clot and everything else is probably why I'm doing good today.

I had a surgeon who could not fix my clot tell me. "I hear you are a walker, well walk, and don't stop".

Worked for me,

Lee

mobrouser wrote:For those that don't know "the Ladies" here's the song that I sort of channelled...

Classic BNL from a time before Steven Page thought solo was a good idea ...... not !
LOVE the Ladies actually and still laff at the time Toronto politicians banned them because of their name !!!!
would never happen out here in lotusland !!! probably name a day in their honour and smoke some BC bud ......

only been 4 weeks homie
it takes TIME

you are going thru what sounds about right as I recall
you are in a pattern of "undoing" what has been done to you

A kind of PTSD for CRC patients
be patient with yourself, keep getting the tests and follow up etc.
Deal with what IS ..... not what ifs

AND if I may inject my own BNL take on this ...

cancer, we never really knew each other anyway
BUTT
It all started with the big BANG!

If I had a million dollars for every time I felt like
Lyin' in bed, just like Brian Wilson did

well
"It's all been done
It's all been done before"


we are here for you my friend

Cheers and Harmony on the Journey
CRguy

Miserable, understandable...all of it.

Have you done a search, run across this thread on neuropathy?
viewtopic.php?f=1&t=56876



Best Wishes on that PET SCAN. Let us know how it goes.
BS

Hey mob,

I finished chemo on 02/28/18 and still feel some effects from it - many of which you mention. That stuff really takes a lot out of a person. Just know that it will get better. Six months later and I can almost sleep through the night and my stamina is close to pre-chemo levels.

The feeling of something being wrong inside definitely lingers - it's difficult not to worry. I just had my six week labs done and my CEA is up a bit, but CEA has never been useful for me since it was completely normal when I was diagnosed so I don't worry about it. My ALK is way up so I looked at my history on the MSK patient portal and every time I had labs done within a week of a Neulasta shot my ALK was high. And I'm currently giving myself Neulasta shots due to antibiotics destroying my WBC. As you can see, I guess I just find ways to explain things away so I won't worry.

Take one day and one battle at a time.

hiker

mobrouser wrote:....it's been 4 weeks since you disconnected me...

and I'm just not feeling it. No sense of relief that I'm done chemo, no real sense of accomplishment, just this lingering feeling there's still something wrong inside me. My post chemo CT scan was clear, but I am scheduled next Thursday for a PET because my CEA levels are still going up.

I don't have the constant nausea, and my brain feels much, much clearer but physically I feel possibly worse than before the colectomy. No stamina, still unable to sleep for 8 hours straight, aches and pains everywhere, full blown neuropathy that showed up after round 10 accompanied by a lack of balance. Cold drinks still numb my lips and my interest in food is only because I know I should eat. The really weird thing is that sometimes I look at my arm and miss my PICC line as I knew it was there to help me slay the beast.

I know many others here are going through much worse and I really am trying to "suck it up, buttercup"...

mob

For those that don't know "the Ladies" here's the song that I sort of channelled...
https://youtu.be/fC_q9KPczAg

I know exactly how you feel. I am about four weeks out. The first steps on the floor in the morning hurt. My joints are sore and I feel arthritic, something that I never felt prior to chemo. Balance is off, clumsy, watching my feet, careful about carrying laundry, stuff up and downstairs. My typing is really off, text messages are the worst.
I was eating because I was told that I couldn't shouldn't lose any weight but not the same pleasure as before but it is getting better every day. I carried a bag of ice the other day and enjoyed an a tall glass of iced tea. There is no sucking it up, this all sucks. Everyone says how good I look but how I feel that I keep to myself.

I am waiting to have scan, oncologist wanted a full six weeks out before scheduling. My CEA was .4 but in reading out reports it seems like tumor was CEA negative? so I have no point of reference. As bad as the drugs were I felt "safe" now feeling a little out in the wind.

The naked ladies I know are up in my yard, pink lilies waving in the wind.... a positive vibe to end with and a big bump of support.
S

Thank you all for the thoughts, suggestions and the song lyrics. Truth be told, I've been Brian Wilsoning for the past four Sundays. Without the million dollars though.

This all started when I had my pre-chemo appointment prior to round 11 with my substitute oncologist. I didn't have this dreadful feeling after I received my diagnosis, nor after finding out I was 3C from the surgeon.
So it's very hard for me to understand what's going on in my noggin.

Anyway, I will start a walking regime on Sunday as it's been used successfully by many here and build from that.

Thanks again!

mob

One to two months after chemo is when my neuropathy was the worst, and while it might not completely go away, it will get better. It got so bad my wife had to button my shirts and tie my shoes. Driving was fun because I couldn’t feel the gas or break pedals. I’m almost a year out from my last chemo and it’s much better now.

Yesterday my feet were tingly and I had a hard time dealing cards to play cribbage with my husband. It comes and goes, hope it will be gone. I read some folks have permanent issues. I have awful peri anal skin problems, don’t need more. Keep going forward.

PET scan was on Thursday. I thought I would have to drink a contrast fluid like for the CT scan but was pleasantly surprised when all they did was inject me with radioactive isotope F18.
Judging from where the bed started in the scanner they were looking at both femur bones and hips in addition to the abdomen and lungs.

I got a phone call from the oncologist's office Friday afternoon to schedule an appointment Monday to review results. This was followed shortly after by a phone call from the surgeon's office to schedule an appointment, also on Monday, to review the scan results. I'm not sure what to think at this point, I just want results.

I know people like to complain about Universal health care in Ontario, long wait times, shoddy treatment etc., but I have to say that my experiences in the past 10+ months, except for the very odd occasion, have been exceptional. I am so very grateful that I am only 15 minutes away from our Regional Cancer Centre, and so grateful to the local businesses and residents whose donations and support helped build it. It is 7 years old and every attempt was made to make it feel welcoming and not institutional. It is a pleasure to go to. I will try to get a picture of the main reception area and post it here. Other than Thursday's PET scan everything was scheduled within days. My oncologist or her assistant was available by phone every day, and I never felt that I was being rushed in my assessment appointments so that I could ask as many questions as I wanted.

In contrast my PET scan was done at a downtown Toronto cancer centre. Despite being a separate building from the hospital as soon as you walk in the door you know you are in a hospital. You walk directly into the waiting area from the front entrance, and everyone is assigned a number which is posted on TV monitors when your chemo chair is ready or your doctor. The imaging area had a poster stating that they treat 700 radiation patients per day. I have no idea how many chemo patients are treated each day. It was just mind boggling for me.

mob