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COVID-19

COVID-19

Posted by CherylW on Mar 26, 2020 1:45 am

Thinking about all my fellow warriors during this time of the unknown. Stay safe and stay home <3 <3 Much love Cheryl

Re: COVID-19

Posted by Lianne_Moderator on Mar 26, 2020 12:18 pm

Hello CherylW‍ 
Nice to hear from you. How are you doing these days?

Stay safe and stay home - wise words my friend


Lianne

Re: COVID-19

Posted by CherylW on Mar 27, 2020 1:55 am

Hey Lianne,
  I'm hanging in there, trying to get stuff done in the house and start a workout program to keep my recovery going on. Found out that I won't be back at work for the forseeable future but it is what it is. Knitting a baby layette for one of my previous students so no excuses now to not get it done LOL. Take care my friend and keep in touch <3

Re: COVID-19

Posted by Lianne_Moderator on Mar 27, 2020 12:47 pm

CherylW‍ 
Good on you for making such good use of your time. I am still working full time ( from home now ) and trying to keep up my workouts in the evening and weekends so so far it doesn't feel too much different. Thinking of picking up the guitar again but we will see.
I saw a meme that said that this situation has made me realize I have no hobbies - ha - that might be me.

Take care

Lianne

Re: COVID-19

Posted by CherylW on Mar 27, 2020 2:27 pm

LOL <3
 

Re: COVID-19

Posted by WestCoastSailor on Mar 27, 2020 3:27 pm

Lianne_adminCCS‍  and CherylW‍ 

You two are so cute. And Cheryl it is nice to hear from you again. It has been a little strange not to have all the face - to - face support groups meeting but having said that, this community is amazing and to see and hear all the things that are happening in spite of physical distancing.

I did a grocery run yesterday and was surprised at how empty some of the shelves were. I use the bulk section a lot and that was completely closed for obvious reasons. I did manage to score a giant jar of peanut butter so I'm good for a while.

From a physical stand point I'm till walking morning and evening. Just having to walk around all the dogs instead of stopping to pet them. I'm trying to remember to stretch every day as well. I realized some flexibility had disappeared when I had to stretch for my last CT scan. So important to keep that stuff up.

Angus
 
My story: http://journey.anguspratt.ca

Re: COVID-19

Posted by Elsie13 on Mar 27, 2020 6:12 pm

Hi CherylW‍ , Lianne_adminCCS‍ ,  WestCoastSailor‍ , Some very scary things on the news this afternoon. Four people on that cruise ship died, the ship that's waiting to get through the Panama canal. And the reason that the number of COVID -19 cases jumped up in my province, Quebec, is that we had March break at the very beginning of the month. So people coming back from vacation, they start getting sick a week or two after returning. So I think that they might be saying that there will be a jump in the Ontario numbers soon, for example? 

I do step aerobics at home for exercise,followed either by abdominal exercises or arm toning. I was going to exercise every other day, but it seems to be every third day.  I did my aerobics today, and maybe tomorrow I will take a 22 minute walk to our Wal-Mart!
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: COVID-19

Posted by Iggy331 on Mar 28, 2020 9:37 am

Thinking of you all as well. As long as you wash, avoid touching the face, stay home as much as possible and socially distance you will be fine! I’m an essential worker so I’m out and about the community all the time. That does bring some worry about bringing something home and get my kids sick. I’ve started to undress as soon as I come in the door and hopping straight into the shower. Little precautions that we take like that and I’m sure we will get through this.  Remember to eat well, keep up with exercise and avoid too much reading in all the media. All the bad reports and negativity can wreak havoc on your mental health for sure. One thing I noticed and I love, is seeing communities and families work together to get through this. We’re all in this together and we will get through this!

stay safe all

Re: COVID-19

Posted by Cynthia Mac on Mar 28, 2020 10:32 am


CherylW‍ , and WestCoastSailor‍  - I was walking until Wednesday, when I found a really deep blister on one foot. 

Lianne_adminCCS‍ , this social distancing has shown me just how many hobbies I have - I still haven’t visited the weaving loom, and today isn’t going to be the day because today is vacuuming day! (The home owner’s workout...)

Elsie13‍ , I hadn’t heard about the cruise ship — that’s terrible!

Iggy331‍ , thank you for your voice of reason. This is so stressful for so many people, especially on an emotional level. Personally, I have “ramped up” my efforts in that regard — I’m doing meditation, morning and night, I’m reading affirmations during the day (or listening to them while I do work or including them in conversation with other, like minded people), and I’m reaching out to family and friends, to keep the connections. Thank you for all you do. I’ll add you to my “power thoughts.”
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: COVID-19

Posted by rxyxr on Mar 28, 2020 1:52 pm

Not sure how many of you either saw on the CBC news or read online the following:

'I'm angry and I'm scared': Patient with cancer concerned over treatment delay during pandemic.      
https://www.cbc.ca/news/health/cancer-covid19-1.5512599

As the health care system begins to be seriously impacted and more and more dysfunctional due to this pandemic it is so important that cancer patients and their families/ friends/ caregivers stand together and support each other as we do here!  Thanks to all of you!

Yesterday my partner got “the call” from the hospital re: his “urgent” head and neck surgery scheduled for this coming Wednesday.  The message was that he should be prepared for a delay or delays...everything is quite uncertain and changing from hour to hour it seems. He said he even wondered if the woman on the phone thought she was talking to a different patient for most of the conversation as she seemed absolutely convinced for most of it that his surgery was scheduled for Monday!  Next time he said he would first ask them to confirm full name and date of birth before continuing the conversation.  Lesson learned...Take note!

 Hospitals are doing their best under difficult circumstances but are understandably stressed to the max these days and the fallout on cancer patients in particular is sobering to say the least...  I knew my partner was trying to prepare himself and get “psyched up” but getting more and more stressed and withdrawn these last few days as the surgery date countdown began: 5 4 3 2 1... Heartbreaking that this roller coaster continues the stomach churning ups and downs...

Today though we are getting focused on immediate needs and planning a grocery run...the where and when...advance ordering vs shopping in the non busy quiet hours...the list of “necessities” that might have to be altered at the last minute to just whatever is available?  Nice not to be grappling with those life threatening decisions and uncertainties around cancer treatments and surgery in particular!

 

Re: COVID-19

Posted by Elsie13 on Mar 28, 2020 4:59 pm

rxyxr‍ This must be so worrying for you and your partner. The article says , "...waiting four weeks extra for surgery probably won't impact your ultimate prognosis."  When I had my surgery in 2016, in Quebec, they said that cancer patients would generally wait a month for surgery, in 9 cases out of 10. In my case though, I was diagnosed with large ovarian cysts in August, and had my surgery in November, and got my cancer diagnosis the evening after the surgery. So I wasn't 'a cancer patient' until November. 

Anyway, it sounds like the article is saying to expect an additional 4 weeks delay for surgery. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: COVID-19

Posted by rxyxr on Mar 29, 2020 12:33 pm

In my partners case he was diagnosed in early February, but the painful area under the tongue was initially misdiagnosed in 2018 by a (in retrospect) younger and inexperienced family doctor as a “blocked saliva gland” that would eventual resolve itself on its own. Knowing the cancer had likely been there for at least two years already was a bit scary and seemed to indicate to all concerned that surgery should proceed as quickly as possible. Fortunately the CT scan of his upper body appeared to indicate that there has been no visible spread to lymph nodes etc despite the two years delay in treatment. A great relief at the end of February....Perhaps that could suggest a delay now might not be as dangerous as we were lead to believe?

Actually at this point concern over exposure to the Covid19 virus in a hospital setting (or elsewhere) has become more of a concern for us than a delay in surgery and my partner now seems to be leaning towards choosing to postpone. He will endeavour as soon as possible to speak with the doctors involved and get an opinion as to what might be the riskier option....  Of course decisions made at the administrative level to keep hospital beds open for pandemic patients may for the foreseeable future remove  the option of a personal decision not to proceed. 

Re: COVID-19

Posted by WestCoastSailor on Mar 29, 2020 2:22 pm

rxyxr‍ 

I just want to encourage you to keep the conversation open with the surgeons and oncologists.

There may be oral  chemo options or other things to explore while you are waiting. This is a new reality and doctors are exploring just as much as we are. I was surprised the other night in listening to a webinar on lung cancer treatment and Covid. Four of the top oncologists in the US discussed what some of the options were and what some of the barriers were. Some of it was American so FDA and insurance companies are a much greater factor. Often though there are alternative protocols that are approved just not used frequently because "this is the way we've always done it."

I'm hearing more and more stories of successful telemedicine conferences that may be suitable for discussion too. LIke in real life though "webside manner" vs bedside manner is something that is an evolving experience and we need to be patient as oncologists, nurses, and other practitioners work it out how to do it.

Angus
My story: http://journey.anguspratt.ca

Re: COVID-19

Posted by Cynthia Mac on Mar 30, 2020 8:40 am

rxyxr‍ , ask the oncologist about protocols in this “new age.” At my local hospital there are separate entrances for anyone coming in with covid and those patients are being put in completely separate areas of the building. As I understand it, covid patients don’t need surgery, so I would think it would be rare for the surgery floor to have such a patient on that floor of the hospital. 

It’s certainly worth having the discussion.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: COVID-19

Posted by lgasoi on Mar 31, 2020 1:34 pm

Hello everyone.
New here, but wanted to join in this discussion. Diagnosed with stage 3 rectal cancer last November. Brachytherapy treatment successful, and was all set for an APR surgery (removing rectum, anus, and creating permanent stoma) in late March. Found out yesterday that surgery is postponed indefinitely.
My surgeon has been wonderful, as have the entire team looking after me here in Montreal, QC. But I am now frightened, frustrated, and most of all, simply angry. I recognize we face a difficult situation, but we did not choose to get sick in the midst of a pandemic. The world does not stop when a virus hits. Shutting down surgeries is not the answer... it simply means one group of people will suffer rather than another.
I wrote to the Quebec health ministry this morning and await a response. I don't propose to speak for anyone but myself, and I am so amazed at the resilience and stoicism of some who hold out the belief that our health care system is doing it's best. I want more. I want to survive, and if I must wait, I want resources (physiological certainly, but also psychological) to help me face this moment. Right now, those services are being deemed non-essential. In my opinion, this is unacceptable. 
For me, it looks as if they will attempt some chemotherapy to keep the beast at bay while we wait, but I encourage anyone to join in to demand that we not be ignored or sidelined at this difficult time.
Strength, healing, and much love to you all.
From outside Montreal on March 31.

Re: COVID-19

Posted by Brighty on Mar 31, 2020 2:36 pm

@ILianne_adminCCS‍ 
are you able to help ‍ Igasoi.   Thank you.   ​​​​I can't tag the user name.    It is unacceptable to me that cancer surgeries are being postponed.  I hear on the news it's happening in Ontario  too.    Elsie13‍  lives in Montreal. . Maybe she can advise you  what to do...how to speed up the process... she has been  treated in a montreal hospital.    



    
Help is out there. All you have to do is reach out.

Re: COVID-19

Posted by Lianne_Moderator on Mar 31, 2020 3:03 pm

lgasoi‍ 
Welcome to the site.
I completely understand your frustration with this situation.. It appears that these types of decisions are varying by province, hospital and patient by patient.
I do not have any magic bullet to change your situation I am afraid. It is helpful for anyone in this situation to have an understanding of the decisions being made and what one can expect moving forward, who to contact if their personal situation changes ( and what method of contact is best ) Communication is key.
I am glad to hear you will receive treatment in the meantime.
I wish you strength, healing and love as well.

Lianne
 

Re: COVID-19

Posted by lgasoi on Mar 31, 2020 4:01 pm

Thank you Lianne. Being a part of a community is always helpful. I don't expect anyone will have all the answers, for sure. Perhaps there are no answers to be had, but we must keep believing and we must keep advocating. 
Be well, everyone.

Re: COVID-19

Posted by Rayline on Mar 31, 2020 9:02 pm

lgasoi‍, I totally agree with you. I consider cancer surgery essential as our lives depend on receiving timely treatment. I am glad you are pushing to move forward. Decisions of this caliber are being made from people at the top and even if the surgeon would like to move ahead they are blocked. I heard a brief interview with a Doctor who was not in agreement with the situation. Keep pushing!!!

Re: COVID-19

Posted by lgasoi on Apr 1, 2020 10:13 am

Hey everyone,
Just wanted to offer up a quick update. Spoke to my surgeon this morning, and it looks as if she might have an alternative surgeon at another hospital who can do the procedure. She is certainly doing everything she can to get this going... kudos to doctors who care!
I also informed her that I had reached out to the health ministry, and she was very supportive of that move. She mentioned she was meeting with the ministry tomorrow, so who knows... Anyway, I'll keep y'all in the loop. Keep pushing and keep your spirits up. This situation is so fluid that things may change on a dime.
Be well,
L

Re: COVID-19

Posted by Elsie13 on Apr 1, 2020 11:23 am

Glad there is an alternative being considered, lgasoi‍ .  I had my surgery way back in 2016.  I can't imagine how scary things are these days. 

I was scheduled for a blood test and follow up at the cancer clinic, Cedars Cancer centre, Glen site, March 20, but they phoned and cancelled, saying they would phone me in a few months. But a few days later, I received a letter in the mail, giving me a September appointment.  So at least I have a date. 

Yes, please keep us updated. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: COVID-19

Posted by Mammabear on Apr 1, 2020 11:34 am

Don't panic... I work for Provincial Health Services Authority in BC which is BC Cancer. Cancer Care is considered essential services and continues even in a stage 4 pandemic where many programs would be paused. 
COVID-19 and Social Distancing thoughts....
I find it comforting to see how easily my family has adapted to social distancing. It is the same practice we have done through both my active chemo treatments when I had a compromised immune system. I was just getting back to work full time and going into the office when we were told to work from home which I had setup and was used to anyway. 
So think about a cancer patient....
Don't go out without a mask - might catch a bug
Use hand sanitizer as soon as you get back to the car - might have touched germs
Don't touch your face - might catch a bug
Don't hug or shake hands - they might have a germ
Don't have friends over - they might be caring germs
Wash your hands so often your skin cracks
See.... All of us have had loads of practice with this social distancing thing. It has saved us from infection and saved our lives for years already.
Great job TEAM!!!  You can continue to do this.

Re: COVID-19

Posted by Lianne_Moderator on Apr 1, 2020 1:46 pm

lgasoi‍ happy to hear that options are being worked out.. I am all about being a self advocate and a squeaky wheel where it is warranted.
As you say, things are changing by the minute.

Thanks for the update. Look forward to hearing that you are post surgery.

Lianne

Re: COVID-19

Posted by Lianne_Moderator on Apr 1, 2020 1:49 pm

Mammabear‍ 
I have been thinking about the similarities of being a cancer patient and the situation we find ourselves in now. When I was in treatment, I stayed away from people where I could, didn't let my sister visit when she was here from out of town for Christmas until she wasn't showing signs of a cold, constant hand washing and sanitizing etc.
Former and current cancer patients have been doing this out of necessity already. 

Lianne

Re: COVID-19

Posted by Rayline on Apr 1, 2020 10:44 pm

lgasoi‍ that sounds very positive! So glad that things are moving on, Take care.