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Exercise Discussion and Sharing Information with Your Medical Team

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Pete posted an article about exercise and the benefit to CRC patients, though it may have been a bit confusing to some as his delivery (to me) came off as a bit militant where it did not need to be.

It does raise the question: How do we share the information we read with our medical team?

Using the review Pete brought our attention to, here are some simple recommendations:

Where possible, always start with a source document. This is the medical professionals bread and butter, and carrys much more weight than a simple internet article. In this case, there was a link to the source in the article Pete posted and the full document was available for anyone to pull down and read (this is not always available, and you may just have access to an abstract. Even that is better than an internet news piece).

Ask yourself "can I get a script for this?" Again, stay with what your doctor knows how to do. If he can write a script for you, he can do the same for others, integrating the information into his practice.

In this case, the script would be for Physical Therapy (PT). Based on this review a script for PT is appropriate regardless of stage or where you may be in the treatment cycle (even for those who are "finished", as there is a long term benefit here).

For things that do not require script, share them with the infusion nurses. Many of us talk more with our nurse than we do with our doctor, and it is well within the nurses purview to recommend something like going for a walk. Consider also that most offices are shared by multiple doctors, who may not really talk with each other much. The nurses though do, and messages like this one will probably spread a lot farther with the nurses than with the doctor.

Once again, here is the link for the source document:

The importance of physical activity for people living with and beyond cancer: A concise evidence review

This is about as easy to read as they come, and perfect to share with your medical team.

For those who want to read it, here is the article from Mednews Today:

Exercise Benefits Cancer Survivors, New Report

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I was a bit...confused with Pete's original post.
wonder if he should switch to decaf???
But his main point was able to come across. You have made it more concise though and I thank you for that. I have also found that the nurses are easier to get a hold of and they do pass info on. I had found something that helped with my split fingers (Duo Derm Bandage) so I told my nurse, then brought in a sample for them to give to others. It's all about spreading information, either from outside RELIABLE sources or from our own experiences.

But as the saying goes, you can lead a horse to water but you can't make glue out of them anymore.
-p

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i dropped coffee 14 months ago, alas, no caffine for my little liver to process. i still sneak chocolate but trying not to. its got caffene as well. alas!!

for that matter no dietary fat either, if i get across the line, the liver is my number one crc fighting tool.

the leading horses to water is so appropriate.

my website umustwalk could have a sister site umustdrink.

lets get the message out together, while where still spinning our together on this crazy mixed up pill of dirt we call home.

hugs,
pete

dorookie
Posts: 1736
Joined: Jul 2007

Very well put.

No offense Pete, but he did put it a little bit less militant as he called it. Although I do admire your passion for this cause. You might even have convince me to get off my fat arse and walk or swim...Thanks

HUGS
Beth

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i am thick skinned and a bit obessive.

my tears for my friends lost / wasted years have dried.

the tears replaced by militancy for living, number one target is walking. how simple.

is this to much for csn ???????????

the answer to that is ? no

we are csn!!!!!!!!!!!!!!!!! i am a small part.

every stage 1-3 crc visiting our board will get a warm welcome and an invitation to join the walking post and the walking message.

at least as long as i type. no pressure to walk.

no sweat literally, that's what kills. every drip of my sweat, i smile at.

no sweat either, sit on the couch, its your life, enjoy it, its our freedom our right.

its also our right to be informed!!!!!!!!!!!!!!

walking saves lives!!!!!!!!!its simple and easy!!!!!!!!!

it starts with onestep!!!!!!!!!! ok now just do one

ok now do two !!!!!!!!! great you got the hang of it.

for me its 1000 walks over 5 years.

now 6000 steps per walk is 6km for me.

thats 6,000,000 steps i have to make to live!

join me beth? if you want.

hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

walking = success = living = not deing.

of course i appreciate your suggested diplomatic approach to doctors, i got a script for pt yesterday or physio for my abdominal muscle see walk post.

my miltancy or enormous frustration is its not our job to warn and advise.

the doctors are paid to care, that means clearly telling us stage 1-3 crc's umustwalk.
its that simple.

that the website i registered yesterday. i will get a nice website up for this warning, i hope i find someone who will help me.

using the onc nurses is a great idea.

hugs,
pete

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

"my miltancy or enormous frustration is its not our job to warn and advise."

Actually Pete, it is your job. Some Oncologists specialize, but most treat any cancer that comes to their door. They are bombarded daily by the latest study, review, and change in approved medications. They are also trying to run an office, pay bills, make visits to patients in the hospital, and attend their kids soccer game. To expect that they know every latest thing about YOUR disease is probably a bit much.

So we get someone like ACS to create a forum, join with others on the same journey, and share what works with each other. If something comes up that we think our medical team needs to know, we write it down and take it to our next appointment.

The patient is their own advocate, the doctor can treat you, and I do believe that he knows better than I, but I do have something to share, and I can/should be part of the research team.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

but still they can hand over the walking shoes and pedometer at the first meeting.

we get patients being responsible from the first visit.

that waiting at first is dx before treatment is scary, walking would ease the fear and help.

i guess its just the medical system is slow,

maybe we can be the grease that gets it moving faster.

ultimately we help ourselves. i hope other crc print the executive review and take it their onc. now thats simple. then they could say please tell all colorectal , prostrate and breast about this.

lets get physical therapy in the treatment cycle early.

hugs,
pete

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

G'day Pete I don't often comment on peoples ideas on survival. Why? Because it is individual and quite frankly you only get one chance at it. Sometimes if someone has a firm enough belief in what they are doing I believe it helps as much as what they are doing.
what I will comment on is if someone asks "have you tried" then yes I will comment but not on the effectiveness but on the fact that I have tried it ,usually quite by accident.
when it comes to excercise,yes for nearly two years during my survival I walked. I don't mean that I walked..I WALKED. Over50 miles a week ,every week. By the end of two years I shed over 35 kilos. I also became very ill. After A long walk I would sit and rehydrate.After ten minutes I could hardly move, I would sieze up. I started passing kidney stones and finnished up in er with acute pancreatitis. I lost my gallbladder and developed ulcers so bad that they thought I had stomach cancer. After years of being told by doctors that I was too fat my surgeons comments to me were like a slap in the face. He virtually asked me if I was trying to kill myself by walking so @##$$% far. He was serious. In a much nicer tone he explained that once you are passed your prime if you want to get fit and excercise, first see your doctor ,get a full medical ,then do it under supervision.

After that i did not walk much,not because I did not want to,The neuropathy in my feet and legs had started to get a lot worse as had my arthritis. Both the surgeon and my rheumatologist believe that my excessive walking had accelerated the onset of some long term side effects of the chemo. They both suggested any future excercise programs be centred on water. my rheumatologist suggested swimming. I had bi-llateral frozen shoulders at the time.I asked if he was trying to get rid of me,we both had a good laugh.
So I guess what i am trying to say is sure excersise but please do it in a controlled manner, remember you are not just unfit ,you are trying to recover from a serious disease in a body that has been belted from pillar to post by all manner of diabolical treatments, cheers Ron.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

It's totally up to us to maintain our health and to do things to improve it when possible. Doctor's have PLENTY to do without holding everyone's hand and checking to make sure they do their homework. I think I made the comparison to school earlier. We don't just dump kids in the 1st grade and pick them up in 12 years and expect perfect, smart kids. We have to be involved as parents. Same goes with OUR health. It's OURS, we own it...the good, the bad, or the ugly (couldn't resist).

This also goes hand-in-hand with the idea of the e-Patients.
We can be, and should be, part of the solution.
maybe it's the air mixture, too much nitrogen???
;-)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

ha ha ha
hugs,
pete

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

:-)
I did 8 hours hard labor the past two days of road repair. That meant spreading out 2 cubic yards of item #4 stone to make our private road (dirt road) less pot-holed. I actually did about 3 hours on Wednesday right after I got home from chemo, then 5 more hours on Thursday followed by swimming both days and practically every day. I may take tomorrow off although the grass needs cutting...
-phil

relaxoutdoors08
Posts: 520
Joined: May 2011

Well Done. Thank you for the reports. It gives me an incentive to keep going with my exercise program.
NB

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i printed steve new info about vitD and left it with my GP.

he said i should get off all supplements without even knowing what and why.

i wonder if he will change his mind about vitD.

but i left a hard copy in his in tray, as he signed my blood test orders.

its the way to go. i am seeing my onc today, i am going to print the executive summary.

hugs,
pete

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