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STROKES / ZOLPIDEM

My mother had a massive stroke four years ago , she died a year ago last June , just days after her birthday…. I found myself sending flowers for her birthday and within moments a wreath for her funeral.

I, too sick to attend her funeral in England…, friends arranged a small service in our local Church here in Spain for me to say good-bye to my mother….not quite the same as kissing her for the last time on the cheek…but…the best I could do… I had not seen my mum for almost a year, although I could speak to her by phone she could not answer because the stroke had left her without speech. The one saving grace , my mother never knew I had cancer….had she been healthy I would have wanted to cry in her arms…the one person we need the most when life turns sour is our mother..

I remembered today the spite and cruelty from a forum named Sang Froid…..about my mothers illness, a woman they had never met, made fun of in the cruellest of ways….because her daughter did not believe in FAIRY TALES..I did not visit the site but there are always those ‘ever helpful’ who like to send you a copy of what has been said.

We seem to be in a state of ‘deja vù’ but remember it is not only me you attack, but every single person who has cancer. Apart from your belief in FAIRY TALES what kind of people are you?

To continue.

During the time before I was diagnosed with Cancer, I would travel on a regular basis to visit with my mother. I would act the clown and do everything I could to make her laugh.

I cannot remember how I came to hear of Professor Ralph Clauss or his findings in how the Sleeping drug ZOLPIDEM helped stroke victims…I am only glad that I found him. Professor Clauss works in the Nuclear Department at the Royal Surrey County Hospital in GUILFORD. (For more information I have left a link in the sidebar)

My mother, as a stroke victim, was as bad as it could get, she could not walk or talk and was double incontinent.

One day I telephoned Professor Clauss out of desperation, never for one moment thinking it would be he himself who would answer the phone. I explained through tears and much grief about my mother and how I had heard about him and ZOLPIDEM although I could not remember where or how….A gentle man with a gentle voice told me to calm down so he may ask me some questions. First , before we could even think of trying ZOLPIDEM we must wait six months for the swelling to subside in the brain…luck was on our side six months had passed…Second we must have permission from my mothers GP….BIG sticking point my mothers GP refused, I phoned, I e.mailed, I begged…finally after Professor Clauss wrote to my mothers GP and told of his findings he agreed.

My sister terrified, I also though trying to put on a brave face gave my mother her first tablet of ZOLPIDEM….we waited and we waited…if there was to be any reaction you should see some change within 30 minutes. Nothing. Tears of disappointment stung my eyes, when suddenly my sister said’ Dan LOOK’…I turned to see my mother rosie cheeked her crooked smile had straightened up and she was sitting up in bed looking like her old self. We both said to her mum, mum and her eyes looked at us as though she had done something very clever…my sister and I jumping up and down like a couple of two year olds. The down side, the effect of ZOLPIDEM only lasts a matter of hours and the patient returns to their normal state.But for a few precious hours you may have your family member back as you knew them.( It is important to give the recommended dose the SAME time each day )

NOT everyone will have a reaction to ZOLPIDEM for some there will be no difference at all, but one thing I can say if you have a family member who has suffered a stroke ZOLPIDEM is worth a try.

NOTE:

Professor Ralph Clauss has written books on his findings with ZOLPIDEM you can look him up on the INTERNET.

http://www.consumer.es/web/es/salud/investigacion_medica/2006/09/29/155948.php

Article also in Spanish.

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Good News IRONSIDE LOL

I knew it would happen and you did not disappoint. However, I am not DEAD yet, nor likely to be in the near future. So sorry to disappoint.

I was very foolish to use my blog for the MORAIS garbage and have it tainted, but too late now.

I am hardened to your spite and hatred BUT friends who read my blog are not…and when I say my friends I am talking about Cancer patients .

Do you wish the same for my friend ???’Shall I pass on your good wishes OR am I the only Cancer patient you have such JOY for?

I post again my friends post who gave her permission to use on my blog.

I am not like you and hope you NEVER have to go through this.
You will NOTE if you are interested my friend has a wonderful sense of humour and I love her dearly.

xxxxxxxxxxxxxxxxxxx
QUOTE

The following is not a list of complaints. My posts, along with my journal are documenting my “journey” so I want to throw down some of the newer chemo side-effects for personal posterity. Won’t be fun reading but you’re welcome to it.

*Mouth taste: it’s as if I haven’t brushed my teeth in weeks – kind of furry, swollen, slippery; no amount of brushing changes it. Kiss me baby.

*Sores from the inside out: my hands, feet, mouth, nose, esophagus, rectum have sores that I can feel on the inside but mostly can’t see on the outside. For example, trying to bend my thumbs makes the palm-side joint feel like it’s going to rip open.

*Hair: loss of hair, lashes, brows is not a just a self-image issue. No nose hair means constant nasal drip, nose sores and unprotected respiratory; few lashes brings a lovely pea tinted goop that seals eyes shut at night and sometimes when blinking (No! Mr. I’m not winking at you, my eye’s stuck shut) – this eye goop comes from external crap landing and swelling in normal eye liquid and from “chemo trash” (my doctor’s words) trying to wash it’s way out of the eye; hair stubble is painful as it picks & sticks to, and rubs the wrong way on, a pillow for 10 to 15 hours – grrrr; pubic hair loss is shocking as purple tinted skin appears; leg, armpit & nipple hair loss has no down side, I’m going to Italy on the money I save not buying razors!

*Energy swings: Remember Lucy from Charlie Brown? She always pulled the football out from under poor Charlie just as he was feeling his most confident and able. I wanted to scream “that’s not fair!” Well, It’s like that when I’m confident enough to gently “work” a couple hours in my garden or cook dinner or defend myself against roving dog-hair-balls. I feel good and believe my body is benefitting from the exercise but what it really does is stir up all the chemicals and lands me on my back for recovery time. That’s NOT fair!

*Anxiety: OMG! Out of the blue anxiety, the likes of which PMS would die to have in its arsenal, sneaks up from behind and makes you want to jump out of your skin! Probably my most disparate cancer/chemo moment was an anxiety attack fueled by Compazine. It felt life threatening.

*Tears: like anxiety, tears are part of the game whether you feel like having them or not. Let-em flow, it’s good for sticky eye syndrome. There may be times when crying is a response to feeling and then there are the chemo tears; all good for pity’s sake. These tears are different from the constant eye “tearing” (see eye pea-goop above).

*Chemo brain: born a dyslexic, shinny-thing syndrome blonde I’m used to occasional brain failure but utter meltdown is noticeable. If there’s “chemo trash” flushing through the eyes, internal sores and the rest, what’s that poor swollen itching brain going through? I use the buddy system whenever leaving the house. Doc says forgetaboutit; things will return to normal a few weeks after chemo if complete.

*Weight changes: who cares! I’m already bald, sticky, scabby, crying and psychotic, who’s going to notice the weight?

*Blurred vision: possibly a blessing.

*Scent: maybe I stink too – do I stink?

I’m just sayin’ there’s hugs and kisses in that candy bowl, grap yourself a few fistsful.

P S GOOD NEWS! FRIDAY’S ULTRASOUND SHOWS A 50% TUMOR REDUCTION. ATTAGIRL!

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Hello, I really do not know where to start and what to say. I only know I wanted a SPECIAL place for you, my fellow bloggers.

Madeleine, brought us all together, a group of people with the biggest hearts and so much love.

I realise I have confused some over my gender , a message left on TEXTUSA wishing me well, once I have sorted my sex out.

I had realised in the past some thought of me as male and others female, my name only adding to the confusion.

This page is not about Madeleine or myself, this page is for you and today I asked Pam if she thought it would be alright for me to post your good wishes on my blog.

I have not been a member of a forum for a very long time, I therefore am without access and was unable to answer you. I did not want the time to pass without you knowing how much I appreciate every single one of you.

Pam has very kindly brought your messages over to me and with your permission I would like to place them here.

I would also like to mention Pams new blog which is about creating Breast cancer awareness. I have no idea to most of your genders either, whether you are male or female is of little importance to me,  BUT what is important is the fact that BOTH men and women can have breast cancer.

It is also not true that women under forty do not have breast cancer. I know young women in their twenties and one who is only eighteeen who has breast cancer.

Please everyone, if this is not possible on the NHS make an appointment for a Private consultation and have a yearly mammogram….it is not a waste of money and could save your life.

If I may ask one favour of you, add Pams link to your twitter page and give her a tweet each day and help her through you to reach as many women as possible….lets all become more aware of our bodies and this dreadful disease that if not caught in time is a killer…..leaving small children without mothers and husbands without wives.

I love you all and remember keep yourself safe.

Take care

Dani xxxx

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A woman with two small children tells her story as she is told she has eleven months to live.

A woman with strength and courage knowing she has so little time , shares what time is left to reach out to others and try and save JUST one woman from Breast cancer.

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After breast cancer treatment, becoming obsessed with symptoms and worrying that every twinge or cough might be a sign of metastasized cancer is all too easy. A few women go to the other extreme and live in denial despite clear warnings from their body that something is wrong.

The bone, lungs, liver and central nervous system are the most common places for cancer to spread, and each has its own symptoms.

On lung imaging tests like an X-ray, CT or PET scan, metastasized breast cancer in the lungs will usually be more diffuse than a lung cancer tumor, which tends to start in one spot  and grow from there.  Because most breast cancer lung mets are spread out, surgery is not usually an effective treatment.  Chemotherapy is the most frequent treatment for lung mets.  If fluid builds up in the lungs, it may be drained as part of the treatment.

Liver.  Breast cancer metastasis appears first in the liver in about 10% of cases.  The symptoms vary widely and include changes in appetite and digestion, pain under the rib cage on the right side, and jaundice.  During a physical exam, the doctor may notice that the liver is swollen, and blood work may also give clues that the liver is not functioning properly.  Then the doctor will order imaging tests like a CT, ultrasound, or PET scan to find out whether the patient has liver mets or some other less dangerous problem.

If  the tests show just one or two spots, the doctor may try surgery, radiation or radiofrequency ablation to remove the cancer.  Radiofrequency ablation targets specific spots and uses heat to kill the cancer cells.  More often the spots are spread out.  Either way, the doctor will probably recommend chemo because even if only one tumor is showing, the underlying assumption is that more cancer cells are present but not yet visible.

Central Nervous System.  Because breast cancer mets to the central nervous system are hardest to treat, it is fortunate that they are also less common–occurring in 6-15% of cases.  Headaches, changes in vision, seizures, or weakness in one part of the body might be clues to brain or spinal cord mets.  The brain controls our whole body, so symptoms can vary widely depending on what part of the brain the tumor is putting pressure on.  A tension headache that lasts a day and goes away is nothing to worry about, but check with your doctor about any persistent changes.

The brain protects itself from toxic chemicals by something called the blood-brain barrier.  Unfortunately, this barrier does not work to keep cancer cells out, but can be very effective at preventing chemotherapy drugs and Herceptin from getting through.  This barrier makes  brain metastasis harder to treat.. 

If there is just one tumor, surgery may be an option, but as we have seen with other types of mets, frequently there may be several lesions.  Whole brain radiation may be effective at shrinking the tumors.  Another option is stereotactic radiosurgery, sometimes called gamma knife surgery.  This does not involve an actual scalpel, but uses concentrated radiation coming from several angles to treat tumors.  If the mets are causing brain swelling, steroids may help.  Sometimes anti-seizure medications are prescribed.

Research has shown that scans usually cannot catch metastases (mets) before the patient feels symptoms, so each woman needs to be alert and notify her doctor when something is wrong. Here are the most common types of mets, their symptoms, and current treatments.

Bone

The bones are the most frequent place to which breast cancer travels. Up to 70% of breast cancer patients with mets will have them in their bones. Bone pain is the most frequent indication of bone mets. Changes in blood work can also alert your doctor to the possibility. Because exercise, medications, and/or arthritis can also cause bone pain, see a doctor for any pain that lasts longer than a week or two, especially if the pain is constant. Bone mets pain does not “come and go” like a strain from exercise might, and it is not likely to be in the joints like arthritis pain. A bone scan is often the first test a doctor will order, but depending on the location and pattern of pain, the doctor may also use X-rays, MRI’s, and PET scans to diagnose bone mets.

Fortunately, bone mets respond better to treatment than some of the other forms of breast cancer metastasis. Bisphosphonates like pamidronate (Aredia) and zolendronic (Fosamax) help patients by strengthening the bone to make it harder for cancer cells to spread and by preventing the bone fractures that sometimes occur when cancer weakens the bones.

Radiation, chemo, targeted therapies like Herceptin, and/or hormonal treatments may also be used to treat bone mets. Although doctors do not typically use surgery to remove a bone mets lesion, they may need it to stabilize bones and prevent fractures. Long-term Stage IV survivors like Katherine Russell Rich often have bone mets.

Lung.

The lungs are the second most common place for breast cancer mets. In Dr. Susan Love’s Breast Book 4th edition, Dr. Love says that the lungs are the only place of metastasis for 21% of patients, and that of patients who eventually die of breast cancer, 60-70% will have it in their lungs. (Keep in mind that many people will have metastases to more than one location, so the percentages can add up to more than 100%.) Symptoms you should bring to your doctor’s attention include shortness of breath, chest pain, or a cough. If you just climbed a mountain or a cough is making the rounds in your community, don’t be alarmed. But if these symptoms have no logical explanation and don’t get better, see your doctor. Because the breast cancer cells are gradually displacing healthy lung cells, the symptoms may progress slowly.

Less common types.  Much less frequently, breast cancer can metastasize to the eye, bone marrow, or other parts of the body.

Deciding on treatment.  Although each type of metastasis has its preferred treatment, doctors generally want to use a systemic treatment when possible because so many women with mets in one organ will soon have them in a second or third organ.  If the tumor is ER or PR positive, hormonal treatments can be very effective.  Herceptin plus chemo may work well for Her2/neu positive tumors.  Chemo alone works well for some triple negative patients.  Because the cancer has already spread despite the original treatment, doctors will usually want to change up the medication from whatever was first used.

Typically Stage IV patients will go through several different drugs.  One will work for a while until the cancer develops resistance.  Then doctors try something else.  Each year doctors are learning more about how to treat metastatic breast cancer and coming up with new drugs.  Discussing the possibility of a clinical trial with your doctor is a good idea, especially if your cancer is not responding well to the more established drugs.

Although some women, especially those who have extensive metastases in several organs, may decide that they do not want further treatment, it makes sense to consult with doctors at a Comprehensive Cancer Center or research hospital to find out what can be done before reaching that decision.  If it turns out that the treatments interfere with quality of life or if they do not work, it Is much easier to stop treatment than to find out several months into a Stage IV diagnosis that there was a new medicine or procedure that might have added years of life.  Conversely, a woman should not continue in treatment to please her doctor or family if she is ready to focus on making the best of her remaining days. 

Life is full of surprises.  Sometimes the surprise is that a Stage IV cancer goes into remission.  Many doctors refuse to answer the “How long do I have?” question from patients because they have been surprised too many times.  One of my Stage IV friends was a smoker.  Her doctors didn’t tell her to quit because they didn’t think she would live long enough for it to matter.  She was an active volunteer in the breast cancer community in her city for five more years until her death.

Today there is hope for Stage IV patients.  We have better services through Hospice programs for those who are at the end of their earthly life.  Researchers are finding treatments that are more effective and less toxic.  More hospitals and treatment centers offer support groups and complementary treatments like Reiki, massage, and acupuncture to improve quality of life and control pain.  Science will use what it learns from today’s Stage IV patients to unlock the secrets of cancer that will someday give our sons and daughters a cancer-free world. 

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Where do you find the right words to say when a friend tells you they have Breast Cancer?

“Oh, my mum had breast cancer. She died. What a horrible experience!”

“I had a friend who did chemo, and it was the worst thing that ever happened to her…”

And there you have it, folks, two of the WORST things you can say to a woman who’s just been diagnosed with breast cancer.

Feeling a little uncertain about how to respond when your best friend, your aunt, or a colleague at work tells you she’s been diagnosed with breast cancer? OK, hopefully you won’t blurt out variations on either of the two statements above. But sometimes things come out of your mouth before you can even think…

What do you say when you’re face to face with a newly diagnosed survivor – and what do you absolutely, positively leave unsaid? These helpful hints may help you avoid one of those unhappy “WHY did I say that?!” situations.

What NOT to say:

1) “Don’t worry.” Followed by “I’ve known lots of women who’ve survived breast cancer,” or “It’s probably not as bad as they say,” or “You’re going to be just fine,” or…

Although all of the above are true, saying “Don’t worry” to a woman just diagnosed with breast cancer is like telling someone whose home has just been flattened in a hurricane.

The emotional impact of a cancer diagnosis is so great that it takes weeks to gradually internalize it. In the meantime, your friend does nothing but worry – about everything. Don’t make her feel bad by asking her to skip this natural first step on the way back to health.

2) “What can I do for you?”

Any woman diagnosed with breast cancer is immediately presented with an overwhelming number of potentially life-and-death decisions. Lumpectomy or mastectomy? Chemo – yes or no? Reconstruction? Your offer to help, though wonderfully generous, feels to her like one more decision to be made.

Rather than ask her what you can do, offer to make dinner next Wednesday night, and bring takeout pizza to the children on Friday. Or let her know you’ll take care of her children if any of her doctors’ appointments fall at awkward times. Tell her you’d be glad to come weed her garden Saturday. Trust me, it’s much easier for her to say, “Oh, I’d LOVE that!” (Or “No thanks”) than it is to try to think of what needs to be done.

3) “How do you think you’ll feel about losing a breast?”

As good a friend as you are, wait for her to bring up the emotional side of breast surgery. She may still be trying to decide between lumpectomy and mastectomy. So instead, ask her, “Have you made a decision about surgery?”

If she says she can’t decide, ask if she’d like you to listen to the pros and cons and help her make up her mind. The emotional side of mastectomy may very well come up during this discussion.

Heres a good one. Michael Douglas on a TV show in the States a few days ago….was told ‘ But you look so well, you do not look like you have throat cancer’

What exactly is someone supposed to look like when they have cancer?  Normal ,we look normal unless of course we are in the final stages, but Michael has only started treatment and although a little on the thin side (he can now only swallow liquids) Michael looks like Michael. Many times I have been told you look so well you would never think you had cancer. So here are a few more No, nos.

4) “I wonder why you got cancer? You seem so healthy.”

Yeah, she’s probably wondering the exact same thing! And worrying that she did something wrong along the way… Was it waiting too long to have her first child? The wild life she led in school? Birth control pills?

About 85% of us diagnosed with breast cancer have no known risk factors. It does absolutely no good trying to figure out why you drew the short straw. So don’t ask a question that encourages her to think along these lines.

5) “Are you going to quit your job, or…?”

A breast cancer diagnosis is a major life crisis. But for many women, so is quitting a job. Unless a woman’s very close to retirement, or in a dead-end career she dislikes, it’s unlikely she’s even considering quitting. And it’s VERY likely she’s afraid she won’t be able to do her job; afraid she’ll be fired or let go.

The fact that you’re even asking may ratchet up her worries, especially if you’re a work colleague. “Does she know something I don’t know? Am I going to get the sack ?” Don’t you be the one to bring up her work schedule; let her do it.

So, enough with the negatives. What’s the BEST thing to say to your friend or family member who’s just been diagnosed with breast cancer?

1) “Say anything you like to me. I won’t be shocked, offended, or hold it against you – ever.”

As women, we always worry about how our actions and words will affect others. We want to be a good friend: strong, generous, even-keeled, empathetic.

But as newly diagnosed survivors, we find ourselves feeling anything but calm. We want to kick and scream, cry, curse, and lash out at… something. Or someone It’s very hard to keep those emotions in check 24/7; nor should we. Offloading negative emotions is a healing process.

So telling your friend to “Go ahead, lay it all on me” is a gift. She may never break down in front of you, but if she does – she knows you won’t take it to heart, and you’ll be there for her afterwards.

2) “How about dinner and a movie?”

Newly diagnosed survivors want nothing more than a return to normalcy. A couple of hours of distraction – laughs and gossip with a girlfriend – are probably just what the doctor ordered.

3) “Would you like me to come to any of your appointments with you? I’m really good at listening and taking notes.”

The initial round of doctors’ and surgeon’s appointments is fast-paced and incredibly confusing. All of a sudden, your friend has been thrust into a situation where she doesn’t understand the vocabulary, is still trying to understand she has cancer, and feels woefully unprepared to make the decisions being presented to her.

Having a friend sitting next to you as the doctor fast-forwards through the next 6 months of your life is incredibly helpful. Take notes, or ask the doctor if s/he minds being tape-recorded. Ask clarifying questions; if you, the calm, collected one, don’t understand something, it’s doubtful your terrified friend does. Later, you can go over the notes together, and demystify her treatment.

5) “Want to do some research? I know of a great breast cancer site…”

Many women these days immediately turn to the Internet when seeking information. The moment I returned home I switched on the Internet to find out more and what to expect of the future….did I even have a future?

Advanced Grade IV, was not only bad,  it was very bad, at this time I had been told the cancer had also spread to my spine. I spoke with a Professor I knew in England and he said to me IF it has reached your bones it is very advanced.
Most survivors desperately want to connect with other survivors. Breast cancer is a sisterhood; we’re a long chain of women, some leading, some following, all holding hands as we get through this together.  I joined Blog For A Cure ,a group of people who are going through all stages and differnt types of Cancer. I find great comfort talking with these people and have woken in the middle of the night in a cold sweat needing someone to help me through the night…there is ALWAYS someone there on the end of the line to help you through those dark moments.
 This won’t apply to everyone, but if your friend is religious or spiritual, touch on that. Tell her you’ll pray for her; you’re sending her good karma, or that you’ll do some Reiki with her. Treat her to a therapeutic massage. Join her on the spiritual part of her cancer journey, if you’re able. Healing the soul is just as important as healing the body.

Finally, if none of the words above seem to fit your relationship (or the circumstances), a hug is always welcome. Or a shoulder squeeze. Even a simple pat on the arm. The human touch – literally – is wonderfully healing.

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PET SCANS: Are Crucial

There are some types of Breast Cancer that do not show up on mammograms, for instance mine.

For me I have to have Nuclear Pet Scans and even this did NOT show up the return of my cancer.

If you feel there is something wrong even if your Scan shows up clear go back to your Oncologist and ask him to check your markers in the area where you feel pain or discomfort.

I knew the cancer was back and the doctors were telling me No, no, no…I insisted until they checked my counts and sure enough it was back.

You and you alone know your body better than anyone and you must make the doctors listen to you. Three months was wasted taking drugs for a urine infection I did not have, it was cancer growing behind my bladder. BREAST CANCER.

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