CSN Login
Members Online: 6

Validation, validation, validation

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Just got validation that most likely points to Chemo Brain from my doctor and it prompted me to write this particular posting about the importance of validation in our journeys with cancer.

Any symptoms you experience you have to report to your doctors no matter how small they seem to be. Document them and report them without exclusion because you never know what symptoms might be a clue as to some new stage in your cancers or some side effect that might be resulting from treatments or medications you may be on. Validation of your symptoms medically can go a long way too in not only properly diagnosing your conditions but also in validating how we are truly feeling by the medical profession itself and that can ward off a whole ton of emotional issues like depression (at not being believed perhaps) or simply feeling that we are 'imagining medical issues. Validation is sooooooooo important.

Too it is very important to stand your ground when you see a symptom that is new and get the testing you feel is necessary. Trust your gut as to whether there is something wrong or not that should be investigated. After you get the testing done make sure you get copies of the doctors/radiologists reports for your files. That might all help down the road in creating a clearer picture for new specialists in the future. Too it will document your medical diagnosis for things like disability if you need it for payments if you can't work.

Let's not forget the huge issue of validation of our conditions and symptoms from friends and family as well. So many times if too much time has passed since our treatments/diagnosis validation wains as people closer to us might assume we should be 'moving on' by now or say things like 'gee your treatments were so long ago' - insinuating that by now things shouldn't be that bad and we feel invalidated. That's tough on a person who is dealing with medical issues that are being sloughed off due to a poor understanding of the actual survivor's medical situation. It's hard enough to deal with cancer and it's side effects let alone not be believed or validated on top of it all. It happens all the time so don't feel alone in it all.

All in all in life validation is something we crave to confirm our feelings and situtions and when it comes to our own health and wellbeing the anti is upped as this is about our ultimate survival.

Just validating how important validation truly is in our journey with cancer. Stick to your guns if you think something is wrong it needs to be investigated. I fought for nerve conduction studies that I knew would confirm my nerve damage from chemo drugs and got it and now fought for a head CT and got that validation too. It makes a difference. I was telling my doctor of symptoms for the last 25 years that I knew were related to my treatments and only in the last 10 years have I seen the shift to actually believing more survivors and I suppose one of the reasons is that they are simply seeing more long term survivors with the same symptoms - hard to ignore the masses. With improved treatments today hopefully alot of these side effects will be all but eliminated with the move to less invasive treatments if at all possible - trying to target only the tumours and leaving other healthy tissue out of it.

Blessings,

Bluerose

Noellesmom
Posts: 1315
Joined: Aug 2010

:)

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Again, Blue, you've nailed it.

I have experienced this issue quite a few times with various doctors and specialists, especially when telling them about some new symptom that I am experiencing that doesn't make sense.

What the doctors don't realize is that for me, at least, I do the research before I bother them with it. I get on the boards or I start Googling the symptoms to find out the likelihood that it is tied to the cancer. I've been told so many times "that can't possibly be tied to what is going on with your head". Really? Even though the brain is the computer of the body and it controls everything? You still think it's not related?

I was rewarded earlier this year by not 1, but 2 doctors (specialists actually) who had the guts to admit to me, "you know more about these tumors than I do". How refreshing!! I could have hugged them both!

But too many times the doctors laugh and tell me that I am the patient and perhaps I ought to leave the "detecting" to them. And I don't laugh and I look them straight in the eye and tell them that if I had done that originally, I would be dead by now and they wouldn't have me for a patient.

Validation is hard to get when you're a patient, but I continue to fight for it when I know I am right.

Blessings,
Teresa

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

You and Teresa make good points.

A point to make about doctors - they are human just like us and
are fallible. I've met some "not so bright" physicians in my day
also.

I'm probably one of those people who doesn't report minor things
and bluerose made a valid point. I am on disability from work
and social security right now. I have a tendency to be a people
pleaser and don't complain very much. Maybe I need to rethink that.

Hugs and positives,

Jim

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Go with your gut instinct and not settle for something that just doesn't feel right to you. There is a difference.

I am a great believer in survivors being able to admit it if they feel down or want to air some issues they struggle with because 9 times out of 10 we all feel the same ones at one time or another. This 'we have to be brave all the time or we are complaining complainers' has got to stop because let's face it we can't be brave all the time and in reality we sometimes feel upset or afraid even if it's for just one fleeting moment in a day. It's good to be able to get that out and know that in validation we do not feel as alone and that is healing in itself.

I believe in positivity and good energy as much as the next person but I believe in honesty too and a survivor needs to feel they can talk about all sides of the cancer journey.

Dats my 2 and a half cents. lol.

Bluerose

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Bluerose,
I'm also debating right now whether to go to my Dr. or not,I've been having a lot of pain but I'm also like Jim, I don't like to bother people. I'll undermine my pain and say that I'll go to the hospital when I won't be able to stand it anymore. I'm really undecided since my pain doesn't fall into the general symptoms that you read about in the cancer sites. I should have more guts and make my Dr. check me out, but I'm just afraid that they'll dismiss me as a crazy person. God please give me the courage to speak and stand up for myself.

Thank you Bluerose for writing so honestly,
Sincerely,
Liz

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

The reason we have pain is because our body is trying to tell us something is wrong so why not listen to it and check it out? no one is going to think you are crazy and if the doctor does give you that impression then you need a new doctor. You know when you need to have something checked out so try not to doubt yourself. It's better to have it checked out than to be sorry for leaving it too long and leaving the pain til it's so bad you can't stand it anymore is not the right way to go. I am sick of doctors after all my health problems but I still know I have to go when something hurts and is new or different. Just go Liz.

You mentioned that your pain doesn't fall into the general symptoms you read on 'the sites'. Well you have to remember that not everyone has symptoms that are always like common symptoms either sometimes. Everyone is different and the pain is your measurement of how you are doing not a list on some site that may not have a complete set of symptoms anyways. Also too you have to realize that what might be happening with you might be something totally different from what you think it is and what you are looking up. Reporting your symptoms to your doctor and getting a diagnosis for YOU is the only way to find out what is causing the pain - it could be quite unique to your situation only. Don't try to diagnose yourself.

I do hope you will see your doctor about your pain. Don't be afraid of what it might be, it might be something that is not even related to a cancer but something quite simple to remedy like perhaps a small infection or something similar. Get it checked out please.

Keep us posted.

You can do it Liz.

Blessings,

Bluerose

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

wrong with asking your doctor is there is something wrong with you. The only "crime" you'd be committing is that you are concerned about what is going on with your body. But an even bigger "crime" would be if it were something serious and you didn't get it checked out and then you'd be faced with the "woulda, coulda, shoulda".

Also, please don't be distracted by the thought that your symptom(s) don't "fit" what is going on with you. If I had a $1 for every time a doctor or specialist told me that, I could retire. And the majority of the time, the symptoms DID have something to do with my tumors, either directly or indirectly. For example: January/February of this year I was hospitalized. Doctors couldn't figure it out. They were concerned it had to do with the brain cancer. Couldn't find a link. My husband and I finally got them to run a multitude of blood tests only to discover that my adrenals and thyroid were both underactive. Why? Because of the radiation therapy I received in 1996 and the damage it did to my hypothalmus (which had tumors very close to it).

Please don't be afraid of asking questions or saying that something doesn't sound right. I'd rather have people come on the boards asking the questions than to know that they didn't and now they are in serious trouble.

BTW? Anyone who is positive 24/7 ain't rowing with both oars in the water!

Hang in there sweetheart!

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Do they put "wisdom" in that Canadian water? ;).

Thanks as always for your words.

Jim

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Just kidding, I can't drink anymore - stupid late effects. Man, life just isn't fair. lol.

Take care Jim,

Bluerose

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hey Bluerose!
Nice to see you posting again my dear friend! Always good, helpful advice. Thank you once again.
Tina in Va

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Where have you been? I have been posting a fair amount but in many of the groups so bouncing all over, lol.

We all help each other, that's the beauty of this site. How have you been?

Bluerose in Canada

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network