Friday 3 October 2014

Something Ive read in someone's blog .... not sure what to think of it

Women with metastatic breast cancer: feeling alienated during Breast Cancer Awareness Month

Joan Oliver Emmer/Parental GuidanceBy Joan Oliver Emmer/Parental Guidance 
on October 17, 2012 at 6:01 PM, updated October 17, 2012 at 8:33 PM
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How would you feel if the whole country threw a party, supposedly for you, a party with cupcakes, balloons, inspirational speeches, giveaways and cheer?
But what if the party invitation – probably pink in color - included a tiny footnote saying that, even though the party was for you in name, you would be barred at the door from entering? Because your mere presence at the festivities was a downer?
This is how some women with metastatic or Stage 4 breast cancer feel about October, National Breast Cancer Awareness month. During this month of pink and circumstance, saturated with the message that if we become aware of our risk, get our mammograms religiously and invest in all kinds of pink-themed products, walk, run, chant and stay positive, we will not only survive the beast, but thrive in spite of it. It’s a message of hope and strength (and not incidentally, corporate profits), which satisfies our need to be in control of a frightening disease which affects more than 200,000 American women each year.
Only it’s not true.
Women whose breast cancer has advanced to Stage 4 (there is no Stage 5) have suffered a spread of their breast cancer to another site in their bodies, usually the bones, liver, lungs or brain. Once breast cancer has spread beyond the breast, there is no cure. While some women with Stage 4 breast cancer live for many years past their diagnosis, these women are the exception, not the rule.
Let me say it again – there is no cure for metastatic breast cancer. And the reason this should concern the National Breast Cancer month-“celebrating” public is because “early detection” means almost nothing when you consider the fact that approximately one-third of breast cancer caught at an “early stage” will advance despite having been found “early.” Early detection doesn't assure a good outcome because so many breast cancers are beyond the current curative capabilities of medical science, no matter at what stage they are found, no matter how faithfully a woman keeps her mammogram appointments, no matter how much money is diverted to “awareness.”
So women with Stage IV breast cancer – many of whom were already hyper-aware of breast cancer at the time of their diagnosis, scheduled yearly mammograms, ate healthily, exercised (in the words of one woman on my online breast cancer support group, “did everything right”) feel alienated in the midst of the big “party” celebrating early detection, awareness and hope. They see little recognition of themselves or their needs in the “Pinktober” hoopla. They are dismayed by the party atmosphere that pervades the month, an affront to the reality of the cancer growing in their livers or brains. They are tired of silly messaging that equates “boobies” and “tatas” to the “breast cancer experience” as they undergo painful surgeries, lose their hair to chemotherapy and drag around oxygen tanks. Insulted by large corporations that donate a (usually small) portion of the sale of questionable pink-themed products to the “cause,” but whose bottom lines are the ultimate beneficiaries. Incredulous to hear the message that breast cancer is the “good cancer to have” despite the fact that nearly 40,000 women will die of the disease this year, nearly the same number as succumbed 20 years ago. Enraged when told that maintaining a good attitude will help them to defeat their disease, all the while attending funeral after funeral for their upbeat, optimistic friends.
They want to talk about the more salient issues, like about how only 15% of money donated to certain breast cancer organizations goes to research, a key element in discovering how to prevent or cure the disease that afflicts them. How surgery, radiation, chemotherapy and hormonal treatments are so expensive that in trying to prolong their lives temporarily they may be bankrupting their families permanently. How shocked they were to discover their cancer had advanced, because they had been led to believe that early detection equals a cure. How too many entities (pharmaceutical companies, manufacturers, even some of those running major breast cancer organizations) are profiting from their pain.
I asked the members of my online breast cancer support group what they would like others to know about how they feel about having Stage IV breast cancer during October, the month of “awareness.” Here’s a sampling of their responses:
“Our society likes success stories and happy endings. Why would anyone give us the spotlight?”
“When all of the hoopla occurs every October (I hate it), the entire emphasis is on inferred permanent survival. Those of us at Stage IV know that this will never be for us. While it's true that we have "survived" this year, next year or maybe more, eventually, and likely relatively soon, we will die of our disease.”
“My biggest concern is that all of the awareness is going to backfire. People will start to think breast cancer is curable, mammograms are infallible and breast cancer is no big deal. Well, it’s not curable, mammograms don’t always detect breast cancer and breast cancer is a big deal.”
“People have good intentions when they donate – they just don’t know [the realities of breast cancer].”
“When I was first diagnosed I contacted a local cancer support center and inquired about their support group for newly diagnosed breast cancer patients. I was told not to go to their support group because I (an advanced breast cancer patient) would frighten the other members. OK what else do you have, I asked. We have nothing for you, they replied. So, right from the start I was kicked to the curb by the very people I thought would give me support simply because I am what every early stage woman fears."
“I just wish people would stop asking when I will finish my treatments. I have told most of them so many times I will be in treatment for the rest of my life-there is no finish!!”
“And it seems that the greatly touted "early detection" is simply not an indicator that metastatic disease will be avoided. I wonder if others knew these facts, then more interest, effort and a larger amount of funding would be directed toward a cure rather than "awareness."
Breast cancer is not pretty. It’s not pink, it’s not cute, it’s not a cupcake, a ribbon, a “ta ta” or a marketing opportunity. It’s unpredictable, stealthy and too often deadly. The realities and needs of women who are living with advanced breast cancer must be recognized not only during October, but all year, despite our fear, because only by acknowledging what we fear will we get to the bottom of this awful disease.
Joan Oliver Emmer blogs at Body of Work.

Thursday 2 October 2014

Beautiful Poem


“She was a free bird one minute: queen of the world and laughing.
The next minute she would be in tears like a porcelain angel, about
to teeter, fall and break. She never cried because she was afraid that
 something 'would' happen; she would cry because she feared
 something that could render the world more beautiful, 'would not' happen.”
― Roman Payne, The Wanderess

Thank you my dear friend Susan for sending  me this beautiful poem
Xxx

Not Feeling Great ...


I finally got my new wheels !




I wasnt excited at all when they ve delivered it. The reality of whats happening to me is drowning me way too fast. I know if i want to see a little bit of the outside world I d have to use this chair whether I like it or not and I really don't like it !  The guy came around explained how to use it and left. I was reluctant to sit into my new chair but I had to try it.  The nurse came to visit and I mentioned I was happy to have my new chair but it would be good to have oxygen cylinder space. She said she ll inquire into it and will try to provide me with electric chair so its easier for my parents too.

Also I bought this little gadget to check my oxygen saturation levels



Its a great little thing to have. However in my situation it keeps on telling me that I can't really live without oxygen !

The same night, yesterday night I was so excited to talk to my friend Silvi in Germany. We ve not seen each other for a while but do talk over the phone regularly. I was so happy to talk to her and I'm really looking forward to seeing her. She s coming at the end of october, fingers crossed I m still alive to see her.
While talking to her I felt incredibly sickly... I said silvi Im gonna have to go and rushed to the bathroom. I needed to vomit so much but nothing was coming out.
The next few hours I spent on the bathroom floor and when I finally got to my bed I desperately needed to vomit. I felt so sick and in pain, my head was hurting so much, my liver felt like its gone into spasm, I felt weak and trembling. Mum was quick and got me a vomiting bag.
Few minutes later Ive tried to get myself again to the loo to vomit some more.

My mum dad and our family friend Amara ( the psychologist who is very kind to leave her work and spend time with us when we need her the most. she and her whole family are the most generous people Ive ever seen) were all there to see an awful and not very pleasant situation.

So I was on the bathroom floor and couldn't get up. I was so worn out and exhausted physically. My dad kindly picked me up and helped me back to my bed. As he was doing that I had a little tear in my eye. I couldn't ever cry properly as I was so exhausted. I thought to myself, no parent should go thru what my parents are going thru.
This is such a difficult situation to be in, to see your child disintegrate slowly, loose their independence at the best age of their life and to be on the bathroom floor unable to get up as cancer is starting to slowly take its toll. There were moments last night when I honestly thought Id die and probably would not see another day. I felt dizzy and in terrible under the rib pain but mostly my head was hurting so much. .. is this what dying feels like I kept on thinking to myself.
As my dad said when you re healthy its hard to imagine what it must be like for an ill person. Its almost impossible to put yourself in their situation unless something happens to you too
I really agree with him on this

Amara stayed with us until I settled and went to bed. I ll be ever so grateful to her for being there for me and my parents. She even missed her holiday as she wanted to spend the time supporting us while I was at the hospital and at home now

My little dog Freddie spent to whole night watching over me as well


I found him by my bed this morning...