Posted by PastaCat on Jun 24, 2020 11:27 pm
Are there any other nurses on here? It's absolutely amazing how everything can change in an instant. I'm now on "the wrong side of the bed" so to say. I've found myself using the same resources (such as this message board) that I recommended to my patients and client's throughout my short career. I've worked in Health Care since I was 16 and graduated from Nursing in 2011. I've seen so many families go through this process, and now I feel a incredibly lost since it's our turn. Even though I have held so many hands and cried with so many families I feel like I have no idea what to do for myself or my own family. I'm only 32 and finally just hit my stride in my career. This is incredibly frustrating!
Is there anyone else out there with a similar story?
Posted by CentralAB on Jun 25, 2020 11:18 am
It must be challenging for you to think of all the possibilities, plus being a Mom, wife, and many other things. That sounds like a lot to deal with. I hope you will check in with us, let us know how things are going, we will be here. We are always happy to lend a listening ea, if nothing else.
Posted by Daybreak on Jun 25, 2020 1:56 pm
I am also an RN and agree that I much prefer being on the nursing side of the bed than the patient side!!
I have had the wonderful support of my family but I also have experienced expectations that I should know all the answers too
I have had to resist the temptation to "over" research on one hand but on the other I would have really appreciated having access to my chart - specifically pathologies reports. Some of the physicians have been forthcoming and some not so much ! I struggle with getting the information I feel I need yet I am reluctant to overstep boundaries - I guess I still come from the old school of nursing
I am single with one grown son and with any mothers instinct, I find I still want to protect him from the potential loss that this diagnosis brings
I my career I have helped families have these tough conversations but I still find it very difficult to have them with my own family I sometimes wonder if that is because of the countless years of being the helper not the one needing help
I pray that your journey goes well
Posted by PastaCat on Jun 25, 2020 3:45 pm
CentralAB you're right! I am in the diagnostic stages of things. I find I've panicked and gotten ahead of myself. Having worked in Palliative Care you see cases at the end, and I must admit that my mind jumped there immediately. I had a friend that used to say "I have Down Syndrome, but Down Syndrome don't got me". I think I should apply this to my diagnosis and tell myself "I had a tumour, but the tumour don't have me!". As for nurses in the hospital they were ok, most treated me like any other patient. I appreciated when they didn't dilute the information for me as I asked so many questions. The only problem I had was with one nurse telling me that 6/10 post-surgical pain was ok and that I didn't need analgesic!! Politely had a conversation with them.
Also I should tell you all that my Mum is a RN, my little sister is an ICU RN, and my Dad is a Paramedic. Thankfully those conversations are much easier than explaining to my non-medical family!!
Posted by supersu on Jun 26, 2020 12:23 pm
it really is a trip being the patient!
I'm not an RN, but a technologist, so I actually saw my breast cancer on the screen as it was imaged--knew the instant I saw it that I was now on the 'other side of the bed'
I try hard not to be 'that patient'.....and for the most part I think I succeed, but I do have a very bad habit of researching the s*** of everything.....ha ha ha
good luck with the diagnostics, do what you need to do to be comfortable, even if its being 'that patient' to get the information you need
Posted by Lianne_adminCCS on Jun 26, 2020 3:49 pm
Your post reminded me of this blog
It is about an oncology nurse who gets cancer. And figuring out that you never really "got it" even after so many years in her field. It's a good read.
I watched my dad go through cancer and thought I understood until I was diagnosed and realized I had no idea.
I remember a movie years ago about a Dr who becomes a patient and the difficulties that come with that.
Daybreak I am sure you know this but you have the right to ask for a copy of any of your test results. I get a copy of pretty much every test that is done to me. I find it a great reference point and also reminds of things like "oh yeah we are already aware of that and keeping an eye on it " for example.
that must have been hard to see that and know. I remember when I was getting a followup mammogram after finding a lump. The tech was saying things like " most times it is nothing" and the like, and it's probably nothing. She did though casually mention that she had diagnosed her mom's breast cancer from the screen. Shortly after she looked at my images , her tune changed and she said stuff like "even if it is there are xyz resources " and the like. Between that and her face I knew as well.
Great thread PastaCat
Posted by PastaCat on Jun 26, 2020 4:17 pm
Also her blog post definitely correlates with some of the feelings I'm having. Also I'm not crying ... it's just raining in here ... 😭
Also there has to be better language out there for people to read than: "Ki-67 was preformed on A2, which best shows the small nueroendocrine tumour". My surgeon said even he had to clarify what some of it meant!
Posted by Lianne_adminCCS on Jun 26, 2020 5:13 pm
You are so right about the language of the reports, and even in appointments I have had to clarify what is meant. And I ask. I know with my mom she doesn't ever like to challenge or question and often comes away with little knowledge of what is being done or why.
PS - the onions are rampant over here 😉
Posted by Miche on Jul 1, 2020 6:44 am
Posted by PastaCat on Jul 2, 2020 5:05 pm
Have you reached out to your Employers Employee Assistance Program? I've reached out to mine and I'm in the process of arranging e-counselling (darn COVID). If your company information is hard to find I know that HR always has information tucked away somewhere on helping employees through crisis. Depending on your province and location there's some great resources out there. I've also reached out to my family doctor to discuss my options for possible medication for the anxiety and depression I'm experiencing. CBT can only get you so far I find!
Sending you positive vibes!
Posted by Miche on Jul 2, 2020 8:39 pm
Posted by PastaCat on Jul 3, 2020 5:16 pm
Posted by JustJan on Jul 4, 2020 9:36 am
I’m sorry you find yourself here and I can empathize with your situation. I am not an RN but worked in the health care field for 30 years supporting RNs and physicians, primarily in perioperative care. I was diagnosed with breast cancer in January 2019 just after I retired. My good friend, who is an RN was with me the day I had my biopsy done and found out it was cancer. My husband was out of town on business and I was so grateful she stepped in. She told me that day, wherever the road takes me she will be there for me. Well that road took another strange turn when I was also diagnosed with ovarian cancer just 4 months later. I found it hugely beneficial to have her with me and my family during my appointments, surgeries and treatments. My husband is a great guy and has been a wonderful support for me but he hates anything medical so he was extremely appreciative of her support. What turned out to be a huge benefit for me was all the relationships I had cultivated through my job. It helped ease the way through my surgeries and recovery and also helped build the relationships with my cancer team. One thing my friend commented on was how little she knew about cancer and cancer treatments and how different it is from other medical areas. She has learned so much through this process. So my advice to you is to not be hard on yourself and don’t expect to know everything. Ask
questions and get clarification when you need to. The cancer world is very different and is so complex and each person’s journey is unique. I wish you all the best as you navigate this journey. You’ve got this!
Posted by WestCoastSailor on Jul 4, 2020 11:42 am
I've been watching this thread from afar and though not a nurse, I had a career until a few months ago as a first aid attendant on high hazard job sites. Not that that gives me any great insight into nursing but growing up in a veterinary household gives me a lot of insight into medical terminology and the challenges around knowing things that I maybe shouldn't know.
My family made me promise to let the doctor be the doctor and me be the patient. I love Dr. Brian Goldman's phrase "the view from the other side of the gurney." So far that has worked out well. I do find that I am the carrier of information from one specialist to another. It makes me wonder how people that don't have those skills manage. There is a very real role for patient advocates and I have found a lot of medical professionals on Twitter in particular who have cancer and talk about how it has changed their perspective.
I think it was the discussion of medical communication that got me jumping into the thread. I discovered Alan Alda (of MASH fame) has been teaching medical folks how to communicate for twenty years. He has some real insights from his own experiences and uses improv to help them understand that message sent is not always message received.
There are some really awesome support groups online (this one being no exception.) But http://cancerchat.ca has regular programs as well facilitated by professionals. I found their lung cancer one and their art therapy one particularly helpful. I'm still somewhat in denial over the metastatic nature of my disease so I haven't been bold enough to sign up for one of their metastatic groups.
Thanks for stating this important conversation here.
Posted by Kims1961 on Jul 5, 2020 1:39 pm
I have been following from afar and can so relate. I work in mental health, so when i was diagnosed with breast cancer, i felt i had some tools to manage my mental health, it would be the medical side of BC that i needed to educate myself on.....boy was i wrong!!!
When i started to experience some anxiety and side effects of this - and my tools did not work - it was very very difficult for me. Going to speak to my family doctor, who also refers to the agency i work for - was humbling and difficult. He was wonderful and i've come to see that "being on the other side" - has it's pros and cons. They pros are that we can understand the lingo/process - the cons is that we understand the lingo/process...lol...
What has helped is communication - that because we are in the field we are in - we may not have experience being a "patient". I tried to not have overly realistic expectations of myself, ask questions and ask again - and build the supports that worked for me. This included a positive relationship with care team, include family/friends/colleagues - get exercise, eat well, distract when i need to and also that it's ok to not be ok. We don't have to be the model patient - we are learning to navigate this journey too.
Thank you all for your openness and sharing. Very helpful for so many of us. Kim
Posted by PastaCat on Jul 14, 2020 11:02 am
For example: In my situation one teeny tiny neuroendocrine tumour was found during an appendectomy. Surprise! My family doctor feels that there's no need for further imaging or investigation as "these kinds of cancers are one offs and aren't anything to worry about". Research doesn't support that, so I looked up my own oncologist in my province who specializes in detection and care of said tumours and nicely demanded a referral. I'm not going to argue with someone that has their mind made up. The specialist is concerned and off I go to run the gamut of testing! Honestly it felt great to be vindicated, but I really worry for those that don't have the health literacy to look up things and be their own advocate.
Believe me when I say it's been an exhausting week as I'm still working part time, have other health issues, and I'm about ready to go off like a firecracker if one more person tells me that I just need to do a juice cleanse and it'll cure any cancer that's left 🤬
Posted by WestCoastSailor on Jul 14, 2020 12:28 pm
I laughed when I read about the juice cleanse... Been there with "you need to stop eating sugar and starve the cancer." I went off. I don't burn bridges in relationships easily. But I brought the full artillery of cancer experts, my own knowledge, and passion from being mid chemo/radiation to bear. It wasn't quite scorched earth but pretty close. I have the following disclaimer on my blog.
Whilst thankful you may be concerned enough to offer a clinical opinion and treatment ideas for my highly complex disease - I think my huge team at the Fraser Valley Cancer Center (Surrey) with a lot of years of oncology expertise behind them have got this.
Posted by PastaCat on Jul 14, 2020 1:06 pm
I've also gotten a lot of info shuffled my way on apricot kernels ... research shows they literally poison you ... then the token "alternative therapy" relative argues that it's no different than chemo. I just can't even 😒
Posted by Kims1961 on Jul 14, 2020 3:27 pm
PastaCat - I hope there are some strategies you find helpful - like exercise or hobbies - to help with some self-care/sanity! I would have to get outside, even if i was exhausted just to breathe and recalibrate. I am very impressed with your advocacy skills - well done.
Then...there's just "life" and life within COVID. Sounds like you're onto something with your blog idea!
Let us know how things are going. Kim
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