Both Sides Now: What Happens When a Nurse Becomes a Patient?

As an oncology clinical trial coordinator that ended up on the “wrong side of the bed” myself, I found Sherri’s column struck many familiar chords. Well worth a read.

MBCNbuzz

Sherri blogs at http://www.sherrifillipo.com

“Once a nurse, now a patient” is how Sherri Fillipo describes herself on her blog.  Sherri was first diagnosed with breast cancer in 2010 just prior to her 50th birthday; her metastatic diagnosis followed in 2012 when she learned her cancer had spread to her liver. This past February, we spoke to Sherri about her guest post (“The Conversation“). We found her observations on end-of-life issues as well as her own recent treatment decisions very compelling. We asked Sherri to tell us more about life on both sides of the bed rail–and as you’ll see, she had some excellent insights! In Part One, Sherri reflects on knowing too much as a nurse and yet feeling overwhelmingly vulnerable as a patient; in Part Two she offers some practical tips for patients.–Katherine O’Brien, Secretary, MBCN

I was born and raised in North Carolina about four…

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In Memorium: Lisa Bonchek Adams

Vale to the lively Lisa. She travelled through the experience of metastatic breast cancer with defiance, strength and perseverance. She will be missed.

Journeying Beyond Breast Cancer

It is with deep sadness that I learned of the death of Lisa Adams on Friday, 6 March 2015.  While we never want to speak of winning or losing with cancer; the words of her family ring so true.

The thousands upon thousands who knew and loved Lisa Bonchek Adams; whether in person or via Facebook, Twitter, or her website and blog read around the world; whether up close or from afar; will find it hard to believe that her steely will and indomitable spirit were finally overcome by the disease she had lived with for so many years.

Lisa was a strong, fearless, passionate voice online – as Renn observed “she was a beacon of honesty. The transparency in her blogging was unsurpassed”; so it is up to us all to honor her legacy and keep her voice alive. Lisa specifically asked that anyone who wishes to honor her memory do so with a contribution to her fund for…

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A woman’s glory

reflections on the importance of hair

My Eyes Are Up Here

I like my hair. It is long, with soft curls, and dyed an appealing shade of reddish brown. I am in the last year of my 40’s and my hair is longer than it has ever been in my life. Even including the time in the 70’s, when I wore my long hair tied back with one of those over-sized yarn pony tail holders. Back then, I used to run around barefoot and spent a good deal of time climbing trees. For many years, my feet were very calloused and my hair consisted of a neighborhood of knots and tangles. I just used to brush the top layer of hair to provide a presentable appearance. Every once in a while, I would have to sit in a chair while my mom painstakingly separated the tangles and the knots. Ow! Ow! Ow!

By the time I was 12 or 13, I…

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jennt28

Such a gap… 3 years…

There’s been changes of course. Change of job. Moved house.

Both directly a result of the whole breast cancer experience.

The job change was needed – to move away from living and working with cancer. And now I sit in a children’s hospital research centre. Managing paediatric studies is pretty far from cancer. Particularly since this hospital has a separate oncology group and my centre oversees everything else. And yes. At this point it is “my” centre as I manage the centre and the staff and projects.

The house move? Well we moved from our big house to… A big apartment. And the kids all came too – which is why it had to be a big apartment!

Our lives have become simpler. Less tied to maintenance and upkeep. And for the first time ever I have a garden. Actually, three gardens on three balconies. Strawberries. Tomatoes. Hedges. Grapes. Lettuce. Herbs. Geraniums. Lots of geraniums. All red to remind us of our time in France earlier this year. The image here is of the balcony off our bedroom. Watching a summer storm rolling in.

And yes. Just a few days ago the third year anniversary of my breast cancer diagnosis past. No sign so far of it coming back – but my annual scans are due in January so an element of anxiety is setting in. Particularly in the early am when I’m lying awake (insomnia is a side effect of the drug I take daily to try and keep cancer from coming back).

Breast cancer does not dominate my life anymore and I rarely visit the support sites I used to. This is good – I think…

Whoever you are – I wish you a blessed Christmas and New Year this year.

Post-Treatment Depression

I totally agree with The Cancer Curmudgeon here. Owning my feelings has been key to me being able to start on the road to mental recovery after this experience. I still have days of depression or anger, and I “ride” them knowing that after everything I’ve been through I have a right to those feelings.

anotheronewiththecancer

I’ve been seeing a few graphics and posts on the internet about May being Mental Health Awareness Month, and a few blurbs mention cancer’s impact on one’s mental health. These pieces reminded me of how lost and down, maybe even depressed, I felt after I completed treatment. For me, the worst part was, and still is, the anger I had/have about cancer. I wrote this post last summer about an epiphany I had, at which point I began to improve a great deal. I continue to improve thanks to the therapeutic aspects of writing it all out on this blog.

That said, I am certainly not suggesting my method of getting better is one that anyone else should try. In fact, I’d say the opposite. However, the past year of dipping my toe into the realm of social media tells me that I am not alone with many of my…

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A New Life of Accommodation

The Sarcastic Boob’s return to blogging – sharing the challenges of trying to balance all the “balls” of life when travelling through treatment and recovery. A must read!

The Sarcastic Boob

It has been a few months beyond a year that I started blogging. And to tell you the truth, it’s been a little difficult for me to get back into the swing after my latest hiatus. Blogging has been the portal through which I unburden myself of corrosive and heavy thoughts. However, right now it’s all I can do to try to empty my head.

When we are beset with a crisis of any kind we long to return to normal when it is over. All I ever thought about when I was home this summer was the day I would return to the office–if just to have the chance to bitch about the things that everyone else bitches about. A chance to be with people, nudge the mind, and be like everyone else. But in reality the return is not so easy because after going through this it is…

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Dear blog,

I feel that I’ve neglected you over the past weeks, and I apologise.

There’s been a few reasons. Probably the same ones you hear from almost everyone. You know? Busy at work. Busy at home. Busy studying.

But, there were a few other reasons too. Busy going to the movies. Busy going to dinners. Busy going to lunches. Busy entertaining at our home. Busy getting out for looong walks and enjoying nature. Busy trying to find happiness!

What I haven’t been busy with is very telling about where I am in this breast cancer survivorship path. I haven’t been busy going to doctor appointments. I haven’t had to visit any pathology collection centres or radiology centres. I haven’t had to fill a prescription (well, maybe just once recently).

I did manage to go and sit in on a survivors support group talk at my new cancer centre. It was on lymphodema and it just made me realise that my previous centre definitely didn’t address survivorship issues very well.

I do have a 3 monthly check-up coming up next week with my new oncologist. I’m not overly worried there’ll be anything to find. I have a couple of niggling pains that I am naturally paranoid about, so I guess we’ll need to get those checked. Statistics assure me they are likely nothing – but there’s always that niggling anxiety at the back of my brain…

Speaking of anxiety. I found an interesting article the other day in the New York Times, “Anxiety Lingers Long After Cancer”. It made me realise I am not alone. You may be interested in seeing it?

Anyway, must run. I’ve got some more living to do. The dog needs a walk I think!

❤ Jenn

caring for the survivors…

I’m a “survivor”. A cancer survivor. And my question is…

How well does your medical system look after survivors. The people, like you and I, who have actually been saved by the drugs, interventions and modern medicine?

As a breast cancer survivor I feel abandoned by my medical system. My ongoing health and the quality of life I have during my survival feels of no interest to my doctors and health system.

Take them in. Treat them. Then send ’em on their way. This is what our health sytem appears to be set up for.

But what about the residual effects from the cancer or the treatments? We have chemo plans and treatment plans. Where is the survival plan?

ASCO (the American Society of Clinical Oncologists) has a statement. They have recognised the need for ongoing support for those the medical system has fought so hard to save. Their statement can be found here: http://connection.asco.org/Magazine/Article/ID/3440/ASCO-Issues-Recommendations-for-Improving-Cancer-Survivor-Care.aspx

“Most patients still want to see their oncologists even after they have finished active treatment. Oncologists are well positioned to lead and develop a strategy for coordinating follow-up care with primary care providers,” said 2012-2013 ASCO President Sandra M. Swain, MD, FACP. “We can’t let these patients, who are living examples of the progress we have achieved in cancer, fall through the cracks. ASCO’s statement provides a roadmap for closing the gap in survivor care.”

Their recommendations are:

Promote patient-centered coordinated care through the use of shared-care models.

Increase adoption of quality improvement programs, such as QOPI®, which help physicians monitor and improve care for all survivors.

Expand research on long-term and late effects to develop the evidence base.

Strengthen the education of health care providers on survivorship care.

Educate and empower cancer survivors and their families to advocate for their unique needs.

As a recent breast cancer survivor in Australia I have seen none of this. I have not, so far, had a medical professional ask me “How are you?” or “How are you coping?”. And, I am desperate for someone to ask, since I feel so lost in my survivorship.

I have recently changed to a new doctor. At my next appointment I will be asking for a plan. For some help with working this all out. For help with trying to address and resolve the residual effects of the drugs and treatments.

If you are a survivor, how have you found the follow-up from your medical professionals, team and system?

❤ Jenn

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Nelson’s perspective on mastectomy is not to be missed.

You may wonder what a male can contribute to this topic, but believe me, this is one valuable piece of writing!

Mastectomy – One Man's Perspective.

A boost for brain training: Lumosity can help lift ‘chemo fog,’ study finds

Worried about chemo brain? This start-up appears, from research, to have games that can help improve your brain function with regular “brain training”. I’m going to give it a go to see if it can improve my defixits after the whole chemo experience.

What I need is to be able to improve my memory recall which really suffered…

Gigaom

Brain training – that booming yet much-debated business – just got another feather in its cap.

In a study published in the peer-reviewed journal Clinical Breast Cancer, Stanford researchers demonstrated that breast cancer patients who had been treated with chemotherapy improved their cognitive function after using exercises developed by brain training startup Lumosity. Created by neuroscientists, Lumosity offers dozens of games (to paying subscribers around the world) that claim to improve their memory, attention and creativity.

In the last few years, several studies have demonstrated that up to 75 percent of cancer patients can experience cognitive impairment and mental dullness, that can last five years or longer, after undergoing chemotherapy.

But research led by Shelli Kesler, assistant professor of psychiatry and behavioral sciences at Stanford, found that breast cancer survivors who trained with Lumosity four times a week for 12 weeks significantly improved in measures of executive function…

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