Sunday, March 12, 2017

I can only imagine

"I can only imagine" are words we've all felt or said. I've said them and I know I will say them again, about many subjects. To anyone I've said them to, I'm sorry. They are only words and they are all I have but no matter how good my imagination is, it's not good enough to replace your feelings.

There are so many things that this could apply to, so many situations but I'm going to point out one I thought I "got" but I didn't, not until I was there. 


I thought I knew what it was. I had read friends' attempts to describe it. I had put myself through university working 2 or 3 jobs at a time while studying. I worked all nighters. I was a marathon runner. I am a single mother of twin boys since conception. I had read the spoon theory and other comparisons. I thought I understood fatigue. I didn't. Yes, I knew about being tired, about exhaustion and sleep deprivation but I didn't understand fatigue. 

Fatigue is not exhaustion; not even close. Fatigue not physical nor mental exhaustion, nor even a combination of the two. Fatigue can exist at the same time as either physical or mental or even both but it can also exist with neither being present. 

Fatigue has nothing to do with sleep; quantity or quality, abundance or lack of. Fatigue can be there with continual regular nightly sleep and even additional daytime naps. It can also exist when you are sleep deprived too but fatigue is not about sleep.

Fatigue is not about how much energy you do or don't have.  Coffee is irrelevant.  

Fatigue is not about spoons and a limited or unlimited supply of them. This was one person's attempt to describe it and it helped some people to a degree but it's not enough to cover what it truly is. 

To anyone who has fatigue who tried to describe it to me and I said "oh yeah, I know what you mean", I'm sorry. I only thought I knew. 

Fatigue contains emotional, physical and psychological components at the same time.  It can exist because of a chronic condition or terminal illness. It can exist because of medication to treat a chronic condition or terminal illness.  It is not something that can be controlled with sleep, rest, time away, food, meditation or medication.  Fatigue is something you deal with when it hits, often without any warning. 

Some of my friends are far into the genius category. They still wont get it because it's not about what you know or can read about. Some of my friend are the most caring and empathetic people you will ever know. They still wont get it because it's not about how much you feel for another person. I know that now. I was one of them before. I thought I knew. 

Fatigue cannot be described with words. It is one of those things you need to experience to understand. I hope you never experience it.  

Accept it when someone says they are dealing with fatigue from a condition or illness that they know themselves what they need, when and how much.  And if they don't know what they need, they know what they don't need and what they can't handle, so don't force it on them. 

Accept that they could cancel plans at the last minute, even plans that are important or carry a financial cost. 

Accept that they can look amazing and healthy.

Accept that when you see them they seem to have a ton of energy but suddenly say no, I need to sit, now, here, indefinitely, even after what seems like no physical exertion. 

Accept that they don't answer your calls or take a long time to respond to a FB or text message.

Accept that they are doing the best that they can. 

Accept that you have no clue what they are feeling.


Tuesday, November 15, 2016

Snake Oil and other cures

It came up that some people thought I was against hearing about any alternative treatments for cancer. This is not even remotely true. I am more than willing to hear about them. Chances are, I have already heard about them AND done my own independent research on them.

Last year there was a series that came out called The Truth About Cancer. It's release was very timely, I was in the hospital with a fever and respiratory infection. I was bored out of my mind and had nothing to do. So I watched it, every episode, some more than once. In it, I found some words of wisdom and some good options to explore. I found some common knowledge. Unfortunately, I also found lies, propaganda, blatant mistakes and unproven methods being touted as 100% successful options and there were some things being promoted that I would outright call 'snake-oil' solutions.

Happily I am not a "throw out the baby with the bathwater" type of person and I took the time to research those things that were applicable to me. I am also not a "believe all and drink the kool-aid" person so I also researched some of the broader reaching claims. I was also locked in an isolated hospital room, bored out my mind.

So yes, I am open to exploring other options. I already do/have tried some. However, I'm not locked in a hospital room right now. So I don't have hours and hours to fact check each claim. This means that if you present something to me as an option: DO THE RESEARCH FIRST!

When I say do the research, I don't mean check out only the information and links that are provided by those promoting it. Don't tell me that you heard of someone who heard of someone who tried something and was cured. Find independent support for the claims. Independent support is not some other website that offers affiliate links with claims that it works. The best independent support is a double blind study of significant size where people with like qualities were randomized into 2 groups and one given the 'cure' and the others not. That is the best independent support.

Can't be bothered to do that much work? Then let me give you a couple more guidelines if you want me to take the time to do that level of work.  If the answer is no to any of these, then thank you, but  no thank you.

Was any successful testing done on hormone negative breast cancers?

  • not all cancers are the same
  • not all breast cancers are the same

Are the only reports from those who either charge for the 'cure' or have a personal story with an affiliate link to the 'cure'?

  • find anything unbiased that does not profit it, otherwise it is highly suspicious

If you heard of a friend who was cured, first make sure it is your friend, not a friend of a friend or a neighbor and then are they willing to talk to me personally?

  • "A friend cured her cancer with cannabis oil" - oh great, so what kind of cancer, what combination of CBD/THC, what dose, how often, how long, how was the cancer diagnosed, how was the cure diagnosed? Without this information, I can't go forward. FYI, I have done a fair bit of research on this as an option and have tried it, without success. I will continue to use products with CBD and THC for managing symptoms. Meanwhile, there are many medical studies on right now, double blind testing on cannabis oils. It is being investigated because it has show to help SOME people. 

This is a good starting point.

If you want to watch the series the weekend of the 25th, please do, and use my link to register. In transparency, the above link is an affiliate one (anyone who registers gets one) and if 25 or more of my friends register, I get a $25 visa card.

If you do watch it, and want to discuss it, I'm up for that. But before you ask me "have you tried" based on what you saw in it, please, please, please research it yourself, not only from the places the series tells you to go, and not only positive results. Dead people can't write posts about how they tried it and failed, but look for families who posted less than successful stories also. Balance them out. Question all. Then if something seems amazing, please let me know (along with what research you've done to support it so I don't duplicate it).

One thing you may want to suggest that I have already squashed after much research:

  • laetrile/B17/amygdalin -  there is only an anecdotal support for this, and fantastic unproven stories of success by sites that make money from it's promotion. There have been scientific studies that showed it was not effective. If it had been effective "big pharma" would have marketed it already. Because it is a cyanide, incorrect dose can also cause death.   

Things I already do:

  • Meditate
  • Exercise (I am going to add rebounding because it seems a fun form of exercise) 
  • Green and a couple other recommended teas
  • Group therapy
  • Positive self talk
  • turmeric supplements

Things I am researching:

  • diet changes (angiogensis has the most studies with promise, although more towards preventing and less successful in treating)   

Sorry for the long post. I may still snap if someone posts an "They have a cure for cancer but are hiding it" meme. I may seem like I ignore or don't want your miracle cure. I would love a cure. Just please, make sure it's real before suggesting it.

Thursday, October 13, 2016

Metastatic Breast Cancer Awareness Day

Near the middle of Breast Cancer Awareness month falls October 13, Metastatic Breast Cancer Awareness Day. For all those that are aware of BC, not many are aware of metastatic BC. I know that until I actually had Breast Cancer, I didn't really pay much attention to it. I'm sorry for that. Metastatic Breast Cancer is the only form of Breast Cancer that kills. Breast Cancer contained in the breast and breast nodes, doesn't kill. It is when it spreads to the lungs, bones, kidney and brains that death is occurs. There is no cure for metastatic breast cancer. There are treatments that can sometimes prolong life but nothing so far there has been able to stop the spread, stop the death. The average life span from time of diagnosis of stage 4 (metastatic) to death is 18-24 months. 


MBC Time