Posted by CherylW on Mar 27, 2020 1:55 am
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
Posted by Lianne_Moderator on Mar 27, 2020 12:47 pm
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.
Posted by WestCoastSailor on Mar 27, 2020 3:27 pm
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.
Posted by Elsie13 on Mar 27, 2020 6:12 pm
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!
Posted by Iggy331 on Mar 28, 2020 9:37 am
stay safe all
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.”
Posted by rxyxr on Mar 28, 2020 1:52 pm
'I'm angry and I'm scared': Patient with cancer concerned over treatment delay during pandemic.
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!
Posted by Elsie13 on Mar 28, 2020 4:59 pm
Anyway, it sounds like the article is saying to expect an additional 4 weeks delay for surgery.
Posted by rxyxr on Mar 29, 2020 12:33 pm
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.
Posted by WestCoastSailor on Mar 29, 2020 2:22 pm
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.
Posted by Cynthia Mac on Mar 30, 2020 8:40 am
It’s certainly worth having the discussion.
Posted by lgasoi on Mar 31, 2020 1:34 pm
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.
Posted by Brighty on Mar 31, 2020 2:36 pm
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.
Posted by Lianne_Moderator on Mar 31, 2020 3:03 pm
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.
Posted by Rayline on Mar 31, 2020 9:02 pm
Posted by lgasoi on Apr 1, 2020 10:13 am
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.
Posted by Elsie13 on Apr 1, 2020 11:23 am
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.
Posted by Mammabear on Apr 1, 2020 11:34 am
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.
Posted by Lianne_Moderator on Apr 1, 2020 1:46 pm
As you say, things are changing by the minute.
Thanks for the update. Look forward to hearing that you are post surgery.
Posted by Lianne_Moderator on Apr 1, 2020 1:49 pm
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.
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