We had over 20 sites in attendance and I was very impressed with the interest and enthusiasm amongst the group! Thank you to all who attended.  As promised, here are some links, references, etc… as a follow-up.

Oh, and if you didn’t get a chance to attend, you can view it via OTN webcast by clicking here.

Resources:

BATHE lanyard cards: Bathe Model

Canadian Association of Psychosocial Oncology

Canadian Partnership Against Cancer

Cancer View Canada

Cancer Care Ontario: Assessment of Psychosocial Health Care Needs in the Treatment of Adults with Cancer

I’m in the process of developing a reference list with good resources which I’ll share at a later date.
Hope this helps! Happy BATHE-ing!!

Ashleigh

I wanted to do a posting in honour of my dad during International Sarcoma Awareness Week (which runs from July 17- 24). Across the world this week, there are some amazing fundraising and awareness-raising events taking place in support of sarcoma awareness and research.  I encourage everyone to take some time this week to spread the word about sarcoma.

This week, to show my support I am doing a number of different things:

1. I’ve ordered some “Sarcoma Knows No Borders” bracelets for family & friends and have been wearing mine non-stop since it arrived 2 weeks ago (can be ordered through http://www.sarcomahelp.org)
2. Family & friends got together yesterday and took a group shot of all of us wearing our “Sarcoma Knows No Borders” bracelets (which can be seen on my dad’s Caringbridge website).
3. I’ve joined the online event on Facebook titled: The “Sarcoma Knows No Borders” Facebook Event (PLEASE visit the “Sarcoma Knows No Borders” Facebook Event page & join in on making it the largest International Sarcoma Awareness event to date! http://bit.ly/ddMW6G . People who are not yet participating in this event still have time to get involved. It is an all “electronic” event. It doesn’t take a lot of time, doesn’t cost a thing, and it’s simple to do.
4. I’ve changed my Facebook photo & status to reflect messages re: sarcoma.
5. I’ve Tweeted a number of messages regarding sarcoma (follow me @AshleighPugh_RN
6. Finally……I’m blogging now about Sarcoma!!!

These are examples of just a few small things that can be done to raise awareness. I realize that many people are busy with fundraising for other causes and the various cancer organizations that are out there, but I ask that you all take one small action this week especially in the fight to raise awareness about sarcoma…change your Facebook status, Tweet about sarcoma, participate in the online event, order a sarcoma bracelet, tell your peers about sarcoma, etc…

A great place to get information about the many types of sarcoma is www.sarcomahelp.org which is the Liddy Shriver Sarcoma Foundation’s website. Bruce & Beverly Shriver have done some amazing work in the area of sarcoma & I suggest you all stop by the site & say hello to them!

If you aren’t sure how to get started in raising awareness, here are some sarcoma facts you can share with others:

What is sarcoma?

• It is a cancer of the connective tissues, such as nerves, muscles, cartilage, joints, bone, or blood vessels.
• It can arise anywhere in the body, frequently hidden deep in the limbs.

How prevalent are sarcomas?

• About 1% of all adult cancers are sarcomas.
• Between 15-20% of all children’s cancers are sarcomas.
• There are hundreds of thousands of patients and their families struggling with sarcoma worldwide.

How are sarcomas treated?

• When possible, sarcoma patients have surgery to remove the cancer.
• Surgery is often combined with chemotherapy and/or radiation.

Why are sarcomas dangerous?

• They are often misdiagnosed. Sometimes they are thought to be sports injuries.
• When they are diagnosed, they may be large and difficult to remove surgically and they may have metastasized.
• Many sarcomas resist current treatments.

For more information please visit: www.sarcomahelp.org or http://www.team-sarcoma.net/sarcoma

You can also check out my dad’s Caringbridge website & leave a message in the guest book to show support!

Thanks & Happy Tuesday!

Ashleigh

All of the above mentioned surgery took place (in just over 12 hours) on May 26th. Dad had some major pain issues at the beginning but surprised everyone with his strong will to overcome his pain and regain mobility.After 12 days in hospital, he was discharged (June 7th) and has been at home recovering since. The recovery has been long, difficult, and often times very boring for my dad and I know that he has been faced with some difficult “roadblocks” over the past couple of weeks (one of which- he was fired from his job 2 weeks after being discharged from hospital). He is now preparing for his 6 weeks of radiation treatment which is being led by Dr. O’Sullivan and his expert team at Princess Margaret Hospital. Dad will have 33 fractions (doses) of radiation delivered every day (Monday to Friday). His first treatment will be this Thursday, July 15th and to me this is the final step in beating this monster!

As I’ve mentioned, the past few weeks have been very difficult and at times have felt impossible. I ended up taking the time off from work while my dad was in hospital so I could “take care of him” and be there supporting him. One thing that we did, that I think is remarkable and probably the most helpful thing we could have done as a family was we created a website documenting his experience. We used the popular Caringbridge website and so far dad has had almost 3,000 visitors to the site (in just over 6 weeks). I strongly recommend that you use this website if you or a loved one ever gets sick and I especially feel that you should advocate it to your cancer patients.

Anyways, this posting has been a difficult one for me to write but I want you all to know that I have been profoundly impacted (in ways that I don’t think I’ll ever be able to explain) by my dad’s illness and I have been changed as an oncology nurse!

Thank you for reading & I’ll try to be better at my bi-weekly blogging!!!

Thanks,

Ashleigh

My father is a very fit, vibrant and strong 54 year old man. He has never smoked and has always been in great physical shape. He eats well and takes very good care of himself overall. A couple of months ago he began complaining of a pulled groin muscle. After several weeks of it not resolving and him discovering a mass, I urged him to seek medical attention for it. He went to his family MD and was sent to a sports medicine doctor to perform an ultrasound. He was then sent for an MRI in which they found a mass and urgently sent him for a CT scan. On Monday, May 10^th he went to Mount Sinai Hospital in Toronto to have a biopsy of the mass performed by Dr. Jay Wunder. Within hours of having the biopsy, Dr. Wunder and his team gave us the news that it was a soft tissue sarcoma (cancer of the soft-tissue) and that it was rather extensive (into the femur) and would require immediate treatment. There is a hopeful prognosis for localized soft tissue sarcoma that hasn’t metastasized so we are hopeful for my dad’s survival. This blog post is meant to honour all of the amazing healthcare professionals that we came into contact with throughout the experience at Mt. Sinai.

I’ll begin by saying that the care provided to my father and our family was exemplary. All the doctors (residents, interns, and Dr. Wunder) were remarkable and took ample time to explain each step of the process along the way. My dad was quite nervous going into the hospital, staying overnight, having the biopsy and then potentially finding out he had cancer & the nursing care he received made his experience so much better. Dad had 2 nurses Ann Pakulis & Lori Hildebrandt that were remarkable. I didn’t have much of an opportunity to interact with his night nurse Ann, but both my father and his fiancé spoke very highly of her skill, knowledge, and ability to meet their needs. – Thank you Ann!

The day of the biopsy, I had the opportunity to witness my dad’s day nurse, Lori, providing excellent care as well. I honestly can’t say enough about how remarkable our experience was- despite the devastating news. Lori was attentive but also respectful of my dad’s need for independence. She answered all of our questions and if she didn’t have the answer, she would seek it out. She showed our family respect and helped my very proud father maintain dignity throughout an experience that made him need to rely on others for care. Lori is CON(c) certified, she has been an RN for 8 years (it was actually her 8 year anniversary of becoming a nurse that day as well) and is currently working on her Master’s degree at Athabasca University.  Lori even came in when we got the news from Dr. Wunder and his team and after they left she had a discussion with us about how we felt. Lori said that she was familiar with de Souza and plans on taking our chemotherapy course in the future.  I honestly can say that in my opinion Lori was an example of what I think a de Souza Nurse should be & I hope that she will one day in fact call herself a de Souza Nurse!

Our sincerest thanks to Lori Hildebrandt, Ann Pakulis, Donalda MacDonald, Christina Fabruzzo, Dr. Jay Wunder & his entire surgical team, and Mount Sinai Hospital. Although we got news that we had hoped we wouldn’t, it was remarkable to have been cared for by such great people. We have a long road ahead & hope to see everyone again the next time my dad goes in for surgery. Thank you all for doing what you do & especially to the nurses….Happy Nursing Week!

Happy Friday to all,

Ashleigh

In my Last blog post I talked about how I was reading Suzanne Gordon’s book From Silence to Voice. Well, in the middle of reading this book, my new Amazon book order arrived!!! (p.s. I LOVE buying books probably more than anything else). In the shipment was Suzanne’s newest book When Chicken Soup Isn’t Enough: Stories of Nurses Standing Up for Themselves, Their Patients, and Their Profession. I immediately began reading it and couldn’t put it down. The book is an amazing compilation of stories from nurses in all practice settings across the world and highlights how advocacy in nursing isn’t easy….but is very important. The stories, while all different, are in many ways the same. The overall message I got was that nurses have the potential for a powerful collective voice and have the ability to make positive changes to politics, policy, and patient care. Both of Suzanne Gordon’s books highlight this theme well. And so, now that I’m becoming more aware of the need to have a strong, positive, and united voice… I find myself becoming frustrated by- and more aware of- all the messaging that is out there in the world that is continually setting back our profession, especially with the increasing popularity of social media.

(Social)Media & the Potential Degradation of Our Profession:

If you google search the term “sexy nurse” you will find 2,780,000 potential websites related to the topic!!! If you search “nurse angel” you will get 1,590,000 potential websites! But it doesn’t end with just searching for websites…if you go to Facebook and do the same searches, you will find over 200 groups dedicated to the topic of “sexy nurses”! The sheer number of these types of  groups & sites reflect the pervasiveness of such demeaning messaging. As I’ve begun to use Twitter in my professional life, I’ve also noticed that some nurses who use Twitter (as nurses rather than for personal use) write degrading messages about other nursing areas, nursing practice itself, use profanity, and even write implications of drug abuse.

Nurse-to-nurse Degradation:

One particularly interesting story was shared by a nurse from Calgary, Alberta- named Gregg Trueman. This story began with Gregg entering a clinical placement as a nurse midwife student and quickly getting some very strong messaging from his (female) counterparts and leaders that being a male midwife was not appropriate and shouldn’t be an option. The story ends with Gregg finding a niche working in Hospice Palliative Care but addressed the fact that even in this present day, there is “gender-based ridicule and professional marginalization daily as they [males] seek their role as a professional nurse.” This is a sad and disheartening fact for me to think about.

I get so frustrated by the thought that this is happening all the time in our profession and in wider society & I believe through these messages we are drastically lessening our collective power. Nurses must not break each other down; we should be taking the time to uplift each other as individual nurses and as a professional whole. It is important that nurses don’t ‘eat their young’ or marginalize others because of race, gender, education, or even specialty area in nursing.

Dealing with this very topic there is another book that I plan to read called Saving Lives: Why the Media’s Portrayal of Nurses Puts Us All at Risk ;which takes this concept even further and expands on why the behaviours mentioned above impact the media’s portrayal of nursing. I found a quote from Newsweek magazine about this book that I felt was very relevant:“Saving Lives has a serious point, that the devaluation of nursing… discourages students from the field and contributes to a critical nursing shortage.” I think this says it all!

Oncology Nursing:

Think about this in relation to oncology nursing especially. It is already difficult to recruit (and retain) nurses into the field of oncology – I’d boldly suggest even more so than many other fields in healthcare- and so this ultimately takes the comment from Newsweek to the next level making it even more difficult to recruit into oncology.

With the ever increasing pervasiveness of cancer amongst all humans worldwide, and the ever decreasing (or some might say stagnant) public image of nursing, all nurses – especially oncology nurses- must be aware of the impact of how we are perceived by the public, politicians, the media, and our healthcare peers.  Without a change in our public image and voice, I worry about the implications to oncology nursing practice….and ultimately, patient and public safety.

I just wanted to close with a quote that I really liked in Gregg Trueman’s story, which according to the story was what many female medical students in the 60s were told: “stay the course, study and work hard, and ignore the gossip from those who do not know your heart” (Trueman as cited in Gordon, 2010, p. 232).