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Test Results BAD

Test Results BAD

Posted by FunnyBunny on Jun 29, 2020 1:15 pm

Mum has had a rare cancer since 2014. We’ve known that she will never rid of this cancer (her 3rd diagnosis/cancer; she is about to turn 55yrs old in a few weeks) since 2018. The cancer is vulva origin but is no longer there. It is in her left groin lymph nodes (and now right side as well). Things have been stable so far. She is not a candidate for clinical trials (tried & have been excluded), we did not get any genetic matches after sending pathology internationally for analysis, shes now in gemcitabine weekly with a CT scan every 2 months. Last scan showed possible minimal growth, the scan before that showed actual cellular necrosis (death). Suddenly last Thursday she is given her latest CT results over the phone by a doctor who is filling in for her doctor and told there’s new disease to a lung, a few in her abdomen and possibly left hip bone. That’s it. Now we wait 2 weeks for her doctor to come back from holidays and confirm, elaborate, explain, plan etc.

How do we all cope with this news & uncertainty? What can we do? 

Do we seriously just sit here & wait 2 weeks after a brutal report with such drastic changes and no explanation or talk about this?! 

Re: Test Results BAD

Posted by ashcon on Jun 29, 2020 8:45 pm

FunnyBunny
It's good to hear from you again, though I wish it was not with this news.  I watched your posts from last fall and winter as you were posting them and have been hoping for good news for your mom, each new time you have posted. 
She is young, and has been through so much (I can say that as I am of a similar age, so I can imagine what she may be feeling with this stupid disease that is stealing so much of her vitality.)

​​​​​​With your background as a paramedic, and the amount of advocacy and research you've done to this point, you know that you don't just sit and wait for that call back from the doctor. 
You think of possible Plan A, Plan B, even Plan C options so that when that call does happen, the conversation is more like, "ok, so what do we DO now?" versus "omg, what am I supposed to FEEL now?". 
Get ahead of the curve ball, versus getting hit by it, is what I always say. 
Question: is the fact that you are in different provinces exacerbating the feeling like you can't do anything? 

So at the risk of scaring you off, have you, or your mother and family explored the options and services available through Palliative Care services? Is this a discussion you've had yet with your mother? With your family? With her doctor? 
As I mentioned, I am similar in age to your mother, and I know that the greatest gift my daughters could give me would be to be brave enough to have these conversations with me, so that I wouldn't have to have them in my head, by myself. 
Virtual Hospice Canada  is a great resource for exploring what this may look like. 
Do you still have access to the Social Worker at your mother's cancer facility? I'm sure they could help you explore what else to consider as next steps in making sure your moms treatment continues, regardless of what that treatment plan may look like, so that you don't feel so helpless. 

I can tell you are going through so much to help your mom. How are you and your own family (incl your kids) taking care of each other? 

My heart is with you. ❤️
---- "Nothing ever becomes real till it is experienced." ----

Re: Test Results BAD

Posted by FunnyBunny on Jun 30, 2020 10:38 am

Hello and thank you for your reply. ashcon‍ 

My career as a Paramedic is making this difficult for me in a few ways: 1) I understand the pathophysiology behind what is going on with her and I have many questions that are yet to be answered 2) I have seen (many MANY times) the stages that are inevitable for her such as the end of life stuff.  We attend many "Palliative End of Life Care" calls on the ambulance where the treatments that are in place just are not helping or things have escalated and the patient needs more that what they have; EMS attends and we can do many things right there on scene (in Alberta) with the goal of keeping the patient in the home.  I feel very sad when I think of what's to come for her.  I am feeling very overwhelmed with not having all the details or even a plan in place (or a simple confirmation these are "new disease" spots as the other doctor stated) now until July 15th.  This is a prolonged period of time to sit and "stew" so to speak.  The mind wanders.

The provincial boundaries aren't so much of the issue for me as is the COVID thing mixed with my career.  I know legally I can travel between provinces and be there for her and Dad when needed, but is it smart? I would NOT want to be the one to give her COVID.  I have yet to catch it and my family has been safe thus far but that is a very brutal reality for me.  Is it selfish for me to go home and spend time with her given the fact that I work in a high risk high exposure career?  Other things that come to mind are last time (without the mets they're saying she has now) they said 6 months to a year...that was when they thought she had no other treatment options and her lymphedema was worsening and things seemed to be progressed underneath the skin.  That was VERY shocking news as she didn't have any confirmed mets.  That was Dec 9 2019.  Then Jan 29 2020 the gemcitabine was working and showing actual cellular necrosis.  Then March's scan showed minor growth or perhaps just the tumors changing shape so a little disappointing as there was no further necrosis...but now it's several mets.  It's fast, it's scary....what if she only has that 6 months to a year and due to COVID I can't see her or spend much time with her? My kids....my youngest won't remember her... It's all too much...

Back in December mum was referred to pain management clinic and palliative care program.  She didn't need anything as she was still (and is still) working full time and doing well; to look at her you wouldn't even know she was sick.  Then when January rolled around and the scan looked great and there was the cancer cell death the doctor and Mum pushed the palliative care referral for now.  Her pain is managed with just gabapentin (her only pain is sciatica-type stuff due to the lymphedema in her leg).  I flew home in January for the appointment when we got the great news and at the time we discussed her wishes.  She signed her goals of care with the doctor as an R1.  She (and Dad) refuse to talk about anything more and get quite upset whenever I have brought it up.  There are no wills or wishes in place at all.  Thank you so much for the link.  I will take a look and see what I can learn about how to handle these discussions with them both. Mum is not involved with social work or any counselling.  It is something she has emphatically refused to do (counselling).  Dad has tried very hard to get her to concede to it but nope.

I just wish we didn't have to wait so long for any concrete answers/confirmation and planning.  Her doctor definitely deserves her vacation time but I wish there was another option for us.

Again, thanks for reaching out.

How is your cancer doing these days?  You mentioned you were of similar age to Mum....

Cheers.

Re: Test Results BAD

Posted by Lacey_adminCCS on Jun 30, 2020 11:59 am

FunnyBunny‍ 

Sorry to hear about the recent test results. It must be so difficult to get the results and not be able to talk to your Mom's doctor for two weeks. Not knowing what the plan is can cause a lot of stress and anxiety.

I'm glad your talking to us here and getting things off your chest. You may also find it helpful to call our Cancer Information Helpline and talk out the results. They can listen and help provide information. It's toll free 1-888-939-3333. I know you are quite knowledgeable but sometimes its helpful to hear a voice on the other end of the line and bounce your thoughts off of someone. 

Canadian virtual Hospice is a resource I found very helpful when my father was give limited time. Have you tried talking about things separately with your Mom? I wonder if she is holding back in front of your Dad?

I remember the feeling of being in limbo and waking up each day working, caring for my kids, always worrying about my Dad. I felt like I was always waiting for the call wondering what I should be doing. My heart goes out to you.

Your parents are lucky to have you. Please feel free to connect with me anytime.

Lacey

 

Re: Test Results BAD

Posted by ashcon on Jun 30, 2020 6:13 pm

FunnyBunny‍ 
This additional information and background you shared certainly adds more meat around the tough situation you are in.  Yes, I can see how wearing the paramedic's hat can make this especially difficult for you in so many ways. Add the COVID thing, and it is easy to see how all of this would make you feel very sad and overwhelmed.

I was not one for counselling or therapy throughout my life, but cancer changed my perspective on that.  The counsellor at my Cancer Centre didn't do anything to "fix" my mindset, or escalate any treatment options for me, but she did make me feel that I was not alone, and would never be alone through the whole cancer journey. And that my daughters (who are now 25 and 28) would not be alone either.  This was a HUGE relief for me and perhaps was all that I needed to hear, to know, in order to pull up my socks and get on with living, even if it meant I was going to die soon.
(I am 57 yrs old and currently NED. I have returned to living a healthy, active life - thanks for asking)

There is so much value in just talking things out.  I learned that a solution may not mean a "fix" or a "cure. A solution may simply mean having the tools to communicate and navigate whatever cards have been dealt to us, and to do so with grace, dignity, joy, and peace.

I don't know anything about your family dynamics or relationship, but is it possible that your mom is worried that you are trying to be the paramedic for her, and all she may want or need you to be is her daughter? 

I'm glad Lacey_adminCCS‍ reached out to you. Her words, wisdom, and experience on this topic are only exceeded by her incredible caring and compassionate nature. 
---- "Nothing ever becomes real till it is experienced." ----

Re: Test Results BAD

Posted by Cynthia Mac on Jul 1, 2020 6:54 am

FunnyBunny‍ , I’m catching up on some posts, and want to concur with some of the things the others have already said.

I can easily see why your training and career would have you even more sensitized to your mom’s situation. With my Dad (also NSCLC), I knew his cancer was aggressive, and when he was diagnosed with his mets, even that knowledge was enough to give me a hard push toward the edge. So, I can really understand that your career life would have you on ‘high alert’ even before this blasted pandemic stepped onto the field. One of the things I learned about a  cancer diagnosis is that it is necessary to “shift gears” - sometimes upward and sometimes downward, and we have to try and prepare for those shifts the best we can.

One of the things that always impressed me about Dad’s medical team members is how they cope with this day after day. They have to have some kind of training to help them “decompress” at the end of a day. I know paramedics have such training for dealing with the after effects of trauma, and I wonder if you could lean into that aspect of your “career side” to help your “daughter side” right now.

I wish I could be more help to you with the covid situation. After this last week, though, my views about various means of end-of-life are pretty cloudy.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying