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Be Strong

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For sure I know that WhatNext will be there for me.

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Thanks to WhatNext, to Dave, to Greg and all of you that post here. You have made my journey easier.

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When you change the way you look at things, the things you look at often change.

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Have a happy 4th

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And it is not bad for other things!

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What is Your Take On Post-Treatment Help?

Or what is a long term survivor to do about the collateral damage done by treatments?

In the old days of cancer treatment, it was “treat and street” with not much guidance available for patients at time of discharge. In recent years there have been more resources available for helping in the transition. Even with these services the oncologist is unable to fully serve those dealing with long-term or late-effect symptoms; they are basically fulltime in the treatment business.

Discharged patients are mainly monitored by their treatment medical team members for a period of time after treatments are completed for signs of relapse of cancer or acute post conditions. There is usually a point where the primary care physician takes the lead for future care.

Resources to help survivors with their long term post treatment issues exist mainly in large cancer centers. For those unable to use these specialized centers there are now means to help give them a clear sense of the next steps after they finish treatment. Your doctor may be one that provides this service if not the survivor may have to initiate this action with their medical team members. Remember, patients are allowed to get copies of their medical records.

To prepare your plans use available website templates (See Journey Forward.org below) for the Treatment Plan and select the appropriate template for the Cancer Survivorship Care Plan. For the care plan you will find formats for a few specific cancers and there is also a generic format for all others. Select and fill them in on your computer or print them out and fill them in by hand. Remember to request the necessary records from your doctors in order to complete the forms.

The information in these plans is to provide the important medical history to establish the optimum treatment of long-term or late-effect side effects or the return of your cancer. The importance of the plans is that there may be considerable time between the completion of your treatment and when the plan’s information is needed. You having recorded the information at the time of treatment insures the information being available to you and your medical team at your time of need.

Be proactive and request your plans. If denied, ask for your records and fill-in the plan on the web. Here are two websites to help you get started.

Here is a source for templates to use for your treatment and care plans.

Journey Forward http://www.journeyforward.org/

Journey Forward™, a combined effort of NCCS, Anthem, Inc., the UCLA Cancer Survivorship Center, Oncology Nursing Society (ONS) and Genentech that promotes the use of treatment summaries and follow-up plans that give clear steps for care and monitoring after active cancer treatment.

Journey Forward’s custom-made Survivorship Care Plan Builder is available for use by any oncologist. In addition, Journey Forward offers an electronic Medical History Builder where patients can record their health history in a format that makes changes easy and avoids the need to fill out medical history forms repeatedly.
Here is additional Information from the National Coalition for Cancer Survivorship
http://www.canceradvocacy.org/resources/planning-your-care/

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My fifteen-year cancer journey has enlightened me to the fact that in the long-haul it is self-management that is my strongest card. My medical staff has done and continues to do a superb job in keeping me alive and comfortable during and for some time after treatments for my four occurrences of cancer. I was fortunate to be told there was no longer evidence of disease after each episode. It is dealing with the negative effects of the cancer treatment’s both long-term and late-effect, where more cancer survivor support would be helpful. Unfortunately, there are not many AAA type businesses for human-body shop repair and maintenance of cancer treatment side effects.
For years I have dealt with these lasting infirmities using treatments I call the “Hale method of brute-strength and awkwardness.” I choose to not elaborate on the details of my efforts as they often have resulted in negative outcomes. As Thomas Edison said “…failure is just another way of doing things…”
The search was on for what can be found to be operative for self-management beyond my medical team’s recommended things of nutrition, sleep, exercise, mindfulness, helping others and possibly some of those “maybe this will help” pills.
My condition after my first and second set of treatments produced a new normal each time that was workable. After a few months I resumed most activities. There were the lasting symptoms of fatigue, chemo brain, dry mouth, trouble swallowing and peripheral neuropathy that took time adjusting too. I was retired and could do work-arounds on the bad days. Most of the time everything was alright. Overall it was manageable and better than being under the grass.
The third and fourth occurrences took more time to get over the chemo side effects; then I found what my new additional long term side effects were. The most annoying new effect was my mornings had periods of monetary vertigo with head movement. This was random and did not occur every day.
The most limiting new effect was my new intolerance to temperature change. As a result I no longer can be very long in warm sun without going into heat exhaustion. Likewise I am extremely sensitive to cold. Further, the fatigue is to the point I can no longer be as active to keep physically fit. I do miss this as I have always been active.
With these side effects my medical team has no responses or treatments. There are now medical researchers working on treating cancer side effects both long- term and late-effects but they are not ready for prime time.
This was when I decided to start researching for current approaches to self-management. I reviewed what complimentary medicine was offering starting with, massage and chiropractor. Then came classes in meditation (mindfulness,) and a six week class in living a healthy life with chronic conditions. Next was a few years working with a doctor of health sciences using bioidentical hormones.
The massage, chiropractor and using bioidentical hormones did not prove fruitful. The Chronic Conditions workshop did give me better tools to deal with my existing issues and helped me to live my life and not my chronic circumstances. I got to thinking that everything could be returned to normal is a bit of a stretch. My search activities have now been in progress for the last five years and I was running out of choices I was willing to peruse. There was naturopath and acupuncture still on my list.
During this last year a new late effect occurred in my neck that amplified what was already there -- meaning the vertigo issue. I went to many doctors during the year and the ER twice and no one was able to recommend treatments other than those I had already tried.
My condition continued to worsened and I decided to seek an acupuncturist. I felt this was my last resort. I started receiving treatments using needles and cupping. With each treatment I received relief. This was the first sign of any reduction in five years for the vertigo and finally a reduction in pain in the neck and shoulder. With each trip my symptoms are fading away.
After eight treatments I am much better and do not require as much sleep. Most importantly, I can now enjoy my daily life and am more eager to do things that were difficult before having acupuncture. I plan to continue on a maintenance plan. Finally something worked for me.
It has been worth the long struggle to get some rewards. I suggest considering taking the reins of self-management for your long-term, late-effect situations or other chronic issues and toughen up to this medical reality: Be careful but become your own advocate.
“Believe in possibilities. Believe in human potential. Believe in yourself and you’ll have the power to change your fate.” - Kevin Ngo

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I borrowed this question from [email redacted] to share here on WhatNext.

Today's question of the day: In your own words: Write a six-word narrative about living with cancer.

What is your answer? Here is my answer:

Have patience - positive attitude – hope - faith

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If you had chemo on Monday and today is Thursday this is my take.

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