How is COVID 19 impacting you?

MarilynOCC

Well - schools, stores and businesses are shutting down.  Even border crossings are being reduced or stopped.  I’m now working from home, as are all staff at Ovarian Cancer Canada, and, I’m prepared to stay indoors (except for short walks outside) for the next while.  We are living in strange and difficult times. At least on OVdialogue we don’t have to worry about social distancing and it gives us the opportunity to still connect socially.

What are the repercussions of COVID 19 that you are facing and how are you coping? Do you have specific challenges?  How are you staying connected with others?

We can be here for each other as we all try to navigate what is happening in our world and it's impact on us.

How are you doing? 

Marilyn

Flowergirl

Thank you @Marilyn for starting this topic.
Yes, so grateful for this forum and the current technologies to keep us all linked together while physically apart.
I'm sure there are many adjustments needing to be made for all of us in order to cope.

Self- isolation program / coping is not new for many of us having dealt with a diagnosis / surgery/ treatment or a compromised immune system at some time. It is getting others to understand that can be a major issue.

For myself, at the start of all of this, my personal challenges were trying to get family and friends to comprehend the seriousness (that I wasn't making this up) and threats to my health. I believe many are now understanding since all of the public health announcements, closures, restrictions, job loses, society and life changes and the stats, etc. are in the news. Everyone must remember: No one is immune. 

I hope you are all managing as well as can be... do you have any coping techniques to share?

sdwway

Well, I just heard from my oncologist to expect chemo treatment to be halted after 3 of 6 cycles due to hospital staff shortages. In self-pitying moods I'm feeling expendable because of my poor long-term prognosis (stage 3C).

The argument was that the chemo is just an adjunct to surgery--which makes little sense. Should this decision be finalized I will start an appeal, but did not expect to be fighting the hospital as well as the cancer.

Flowergirl

I am sorry to hear that @sdwway.. I also find this hard to understand.
So, it is because of the COVID-19 hospital staff shortages, staff moving around to different assignments or just not enough in oncology? I am not certain your location city/province... is there an option to have treatment at another cancer location within your city?
Is this coming from just the oncologist, and/or the treatment centre or by the provincial medical direction? So frustrating.
You are right to appeal and get some answers.
How are you feeling otherwise? Please let us know your situation when you can.

sdwway

I'm in Windsor and am willing to travel to any part of Ontario, but any hospital not hit as hard by the virus is not likely to have much extra capacity to begin with.

This came from my Oncologist, who I believe is carrying out the directives of the The Ontario Health/Cancer Care Ontario Pandemic Planning Clinical Guideline for Patients with Cancer. It's a very vague document and based on behavior of H1N1, so one concern is that the "few weeks' delay" mentioned is unrealistic. Then hospitals have to tackle a waiting list of delayed cases in addition to the usual new cases, with no extra resources, so I don't know how that will happen. 

I feel physically fine, though, thanks! Sometimes I think I could beat the odds after all, but this planning document was gutting. 

Flowergirl

Hi again,
You are right - capacity will be impacted at some point.
Yes, seems like the directives may be ever changing and it is frustrating that they vary by province... 
I'm curious, wondering if they shared with you, the priority status (A, B or C)  and how that was determined 
(potential for better outcome adversely affected by delay in treatment, etc)

I'm glad you are feeling ok - hope that makes it a bit easier to get through your day.

Flowergirl

Are there any recent challenges you have been facing? 
How are you all managing with the virus issue so far?

jiselle16

What an unsettling time we are living in! I'm wondering if anyone has gone to the hospital for a checkup since the pandemic began? What should I expect? I have a 6 month check up scheduled in July, and I'm wondering if I should postpone it. I'm feeling fine, no concerns, and it's usually a pretty quick appointment that consists of a chat with my oncologist and pelvic exam (no blood work) - but I'm a bit anxious...

Fearless

Hi @jiselle16:  I expect your concerns are shared by many who have not had to attend any appointments since the start of the pandemic.  Likely you'll get different answers since hospital protocols can differ, even within the same province.  I live just west of Kingston, so Kingston General is my designated cancer center. 

KGH opted to limit face-to-face contact as much as possible. I am on a trial and so monthly check ups are required.  Blood work or scans when required are still done in person. However, unless I am having issues, my follow ups with my oncologist now take place over the telephone, since I have indicated a comfort with that process.  I'm always given the option to attend in person though.  Unfortunately for those who feel a need for emotional support, the ability to have a caregiver or friend join you is no longer an option.  That can be a bit daunting for those newly diagnosed or with issues to be assessed.  

Standard process at KGH upon arrival:  Sanitize your hands and wear your mask. If you don't have one they provide it to you. It must be worn at all times in the hospital.    You will first meet a greeter who will screen you (a series of questions) for Covid 19 and assuming your answers are satisfactory they will authorize you to proceed to registration as normal, and from there to the clinic to await your appointment.  Seating in the clinic is set up so as to ensure appropriate distancing.  Washrooms are open and available if needed and as always been the case, sanitizer stations are everywhere.  I must say that at my last in-person appointment, despite distancing and wearing a mask, I had a delightful chat with the woman waiting beside me.  Nothing like a bit of shared experience and a few giggles to break any tension!

Given your appointment has already been scheduled, if you haven't received a call closer to the date suggesting a telephone session, you might want to check in and suggest that option if that would be your preference.  

Good luck. Wonderful to hear you're feeling well and the six month is just a routine check!

kastoyles

My check up with my oncologist was done over the phone. I'm entering my fourth year after chemo and see the dr. every six months. My check up with my physician was done by email!  OMG!  I sent him my blood pressures, told him a few other little things and received his response and suggestions via email. I have to admit, it may be the way to do it in the future for many people and I can certainly see the merits. COVID-19 will change the world in ways we cannot even imagine yet.

Hope everyone is staying healthy, maintaining safe distances and doing something they enjoy to help pass the time.

maggiemae

I'm glad your check ups are continuing to go well for you kastoyles.  I never thought I'd see the day that oncology appointments were done by e-mail!  My last one was by phone and even that felt weird to me...I still prefer them in person, but we may all have to get used to big changes in the way medicine is practised the future, as you say!  

CountryLiving

My last check up was over the phone too... Whatever it takes as long as I can be in contact with my Dr.  Hopefully phone appointments allow my Dr more time to talk with more patients. 

sdwway

Cancer Clinics have been segregated from the main hospitals, where possible, and the No Visitor policy means there's plenty of space to distance. Everything seems to run more efficiently. Also, my clinic has started COVID testing its cancer patients, and the last count was 0 positives out of 640 tests! 

I was admitted to the main hospital through the ER a month ago, and again the no-visitor policy (since amended) meant the floor felt empty and I have never felt less likely to pick up a disease in a hospital.

Bluebird

@sway our hospitals and clinics have been taking the same precautions as yours.  I think its wonderful as they are taking the steps to protect those most vulnerable to this COVID thing.  It felt very isolating for me not to have my support person with me though..I think now they have just changed it where you can bring someone with you to the hospital.    

VSC

My husband and I don't know a lot of people in Vancouver, so we aren't missing any friends.

I bought a sewing machine in the 90's and never used it for more than a straight stitch on a sheet to make a curtain.

I have been teaching myself to sew by making masks.

maggiemae

Hi @VSC, How are you doing?  I had to smile when I read your post, because I also have a sewing machine from the 90's that I've not used in a long time, and I've also just broken it out again.  What a great way to pass some time and (for me) re-connect with a past-time I enjoyed in the past.  What do you do with the masks you are making?  I actually ordered some vacuum bags to make masks from because all the virus-blocking ones are sold out everywhere and I'd seen a physician's post that this material will also block viruses.  I hope you're keeping well, M

Fearless

Feeling major anxiety today with the outbreak in the Kingston Frontenac Lennox @ Addington sector.  A nail salon in Kingston appears to be the center of 8 of the 10 cases.  Hearing that there have been folks from my closest community, Bath, who have been to the salon recently makes me extra nervous to be out there.  Gosh we were doing so well too.  Unfortunately I live in the country and don't have the option of getting things like groceries delivered, so I'll have to venture out today...masked and with my sanitizer in hand....and hope for the best I guess.  

How is everyone else managing with so much having opened up now?  

kastoyles

We are coping as best we can. We live across the street from Fairview Mall in Kitchener. Walmart, Farm Boy and Shoppers Drug Mart are all within walking distance, so we combine our grocery shopping with our walks. Now that the weather is heating up, we'll have to adjust slightly. We have a few friends in town (we've only been here a year) and our oldest son and family live close by, as does my husband's family.

This past week has been focused around my husband's health. He had a weird eye thing happen on Monday and managed to get in to see a doctor on Wednesday. Yesterday we were off to Etobicoke General Hospital for his third basal cell carcinoma surgery (the second this year - first one happened a few days before lockdown). Life is settling back into a semi-normal pattern.

The mall is opening up but not all of the stores are open - and there is one new vacancy that wasn't there before lockdown. People (most of them) are wearing masks, you can't enter any of the stores without masks, sanitizing your hands and a few questions. There are 'sentries' on every door.

For those of you who frequent the store, apparently TanJay is going into receivership. Yikes!

Have a safe weekend! And early Happy Canada Day!

Bluebird

Hi @kastoyles and @fearless.  I understand your concerns with COVID.  I live in Alberta and many businesses remain vigilant about cleaning, hand sanitizing, masking to protect the employees and customers...but some I find it's like COVID doesnt exist..they have become quite lax with precautions an this is the time to stay vigilant.  So many people are out in the community now..its scary..some people either dont care or maybe think it's not a concern and dont follow the rules..that's the scary part...they need to understand it's just not about them..its about everyone.

walkabout

Hi @VSC - I wonder if you know about our Vancouver Ovarian Cancer support group - might make a difference for you since you mentioned you don't know many people in Vancouver - the group is virtual twice a month and I , as one of the facilitators would like to extend an invitation to join us - if you decide, contact Tracy Kolwich , Regional Manager for OCC and your name/email will be added to our distribution. 
Sounds great that you have dusted off your sewing machine and started sewing again - many folks are rediscovering creative skills that had been put aside - enjoy !! I have been making prayer shawls and will be looking sites to donate them when this is all behind us- take care

walkabout

Hi @Fearless - certainly brings everything home quickly when there is a local outbreak - can be unnerving for sure to be out and about- glad to hear you have your " shopping gear" with you when you are out and about- I see such a mix of masked and no mask when I am out and about here in Coquitlam. Have you thought of researching Amazon as a shopping assistant for " heavy/bulky " staples - I wonder if they offer rural delivery ?  Take care

VSC

@maggiemae

I was reading that blue shop towels are great for filtration as well and I remembered I kept a tarp of it from when we moved here. I have experimented with it as a layer and found that it, inside two fabric layers, is too much.

Most of my fabric stash - I have bought fabric over the years with intentions of making things and never did - are of a Halloween motif.

LOL, I sent my husband out in a mask from this fabric!

 

VSC

@walkabout

Thank you for the invite. Is it a chat room type set up?

The crazy thing about the sewing machine is that when I was diagnosed I dragged it out to make myself some type of head covering, and I was so paralyzed with fear it just sat on my dining table for a year. I finally put it back in the closet and sure enough, as soon as the dining room table was covered with painting supplies, the pandemic hit and I needed masks! So, I put away my paints and pulled all of my sewing junk back out of the closet. At least this time I used it.

I am trying to perfect a couple of different styles. I have a prominent nose and I am having to experiment with patterns.

walkabout

Hi @VSC- so glad to hear back from you - the support group is held the 2nd Tuesday and the 4th Saturday from 10am to 12 pm at the Peace Centre adjacent to the Canadian Memorial Church, Vancouver however due to Covid we are online using the Zoom platform - you receive the link via email and can join us by your preferred device- computer, iPad or phone  - have you accessed Zoom yet- very simple - so hopefully this may be a fit for you- the next support group is the 2nd Tuesday in July - the 7th - so you have time to think my invitation over and be in touch with Tracy Kolwich - our BC regional manager -Tel: 604-676-3428 Ext. 341

Funny how our emotions and our actions are so interconnected- glad the year is behind you and your sewing machine is gracing your table again- you sound very creative - can be a very soothing healing tool- I have a very good friend who has made many masks in the past few months and like you had to play around with the design - have you found fabric you like- I was thinking sunflowers certainly would be a great fit in our world -

As well have you checked out the Walk of Hope in September which has been physically located in Queen Elizabeth Park, Vancouver ? However due to these unusual times, the Walk this year will be virtual - its our major fundraiser and has been a great way to invite your family and friends to fundraise with you and enjoy the morning with others. Check out the link on OCC's home page

All the best as you find your way and have fun creating that special design for your personalized mask.

Flowergirl

We are now well into July and as you can see in your own city / province and on the news (yes, I really have limited my viewing of news so I don't get more anxiety) things are different throughout the country.

So, how are you managing (emotionlly) today regarding COVID-19?
What is your biggest challenge/consideration and how are you dealing with it?

Jackie

As I watch the pandemic unfold there are certainly days when I become apprehensive or feel a little depressed. I’ve discovered that it helps me to take a break from the television news and social media when this happens. The inundation of stories on the subject of COVID-19 can almost become overwhelming. Taking walks or writing entries in a journal that I keep are some of the things that help me relax. Fortunately, I’m in remission, so I’m not required to visit my cancer centre regularly anymore. However, I often worry about what will happen if I get a recurrence during the ongoing pandemic. Would there be a delay in my diagnosis or treatment due to the current circumstances? I also think about all of my teal sisters who are receiving active cancer treatment and what a difficult time this must be for them. 

kastoyles

@Jackie - yes, the media coverage on COVID is overwhelming at times. I walk away from the TV and spend time writing, doing some house cleaning or sitting out on the balcony. We can't avoid it, but we have the ability to step away from the 'madness' now and then, enjoy some quiet time and think of the better days ahead.

Fearless

@kastoyles @Flowergirl@jackie I have the fortune to have moved out to our farm just before I was diagnosed.  We're a km away from the nearest neighbor and an hour from the nearest urban centre so some level of isolation was already forced on me. Adjusting to the Covid protocols has been pretty easy at this end thankfully.  I am in treatment but haven't seen any delays in being seen or treated at my cancer centre so far.  In fact, the move to telephone followup where appropriate has been a bonus. I always hated driving in and waiting for the minor stuff only to hear "all good" and have to drive back home, the entire day shot.  But they've been great in always giving us the option for a face to face for those more comfortable with that approach. But there are two huge impacts to me. The first being the distance from my son who lives across the country.  Notwithstanding I don't want to risk his health with a plane trip home there is my own immune suppressed system to be careful of.  So our annual month long spring/summer visit is yet to be and I miss him terribly.  The second being the impact on my retirement plans.  Bad enough getting this disease but this is the time of my life I had planned for my husband and I to enjoy the fruits of many years of our careers...exploring the world was our number one goal and we have yet to set foot outside of our own province.  Ah well, lots to explore here for the time being. 

Bluebird

@Jackie @Fearless @kastoyles ..I agree with you...COVIDis overwhelming at times And very isolating especially going through treatment. To stay as healthy as you can but continue with those so important relationships..I do get the opportunity to go to work so I do get to go out but I have to wear a mask at work and its mandatory in the community now...so theres no escaping..@Fearless..it ain't over..your stars will align and you'll be able to start your travelling life with your husband..might need to start small like Canada 😁 but theres lots to see, its safer than most and cheaper travel insurance..

Flowergirl

Thank you all for sharing and I hope today finds you managing ok in this ever changing situation.
I am getting a bit better at handling the fearfulness of this stupid virus 
As our provincial health doctor is now saying "we have to learn to live with this virus" - gosh, easier said than done.
I agree @Jackie, helps to spend time away from the news and focus on those creative activities!
Stay safe and be well everyone!

Flowergirl

This is an excellent program if anyone is interested ... starts next week
https://cancerchat.desouzainstitute.com/users/register/122