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Let's discuss...cancer and COVID-19 part #2
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  Cancer is stressful. COVID-19 is stressful.
  • How are you coping and staying safe right now?

**For information about cancer and COVID-19 view our webinar series here**
 
41 Replies
Brighty
6446 Posts
Good question Lacey_Moderator‍ !! At work I wear my mask,sheild,gown and booties.  I wash my hands and sanitize  constantly  .   I try to keep my distance  as much  as possible  from the students but when I can't I'm protected.    I have only a few people  I see outside of work but I dont really havea'bubble' because  I'm  in contact  with everyone  at work so it's hard to keep a 'bubble'  .  I just try and hope for the best! 
 
moplanb
33 Posts
Lacey_Moderator‍ ,

I am self-isolating here at home. I only leave the house to go to the hospital for chemo and every Friday afternoon for my PICC line at an outside  "home care" nursing clinic. We have one couple with whom we "bubbled " last spring when this all started. She calls me every day to see how I am doing and stops by once a week to visit and chat. I find her company helps to keep me cheerful and optimistic.

Because of the situation with COVID-19, I don't feel as though I am "missing out" on anything. I am perfectly happy to stay at home and look after myself between cycles. I look forward to every milestone that I pass on this journey. My oncologist's office called yesterday and I have a CT booked and an MRI pending. I am excited to see what progress has been made through treatment. This is primarily for the oncology surgeon , who will determine if surgery is possible at this juncture.

I suppose my life is a little bit like "showbiz" right now...hurry up and wait!

mo
 
altachica
87 Posts
Good topic Lacey_Moderator‍ !  The biggest change for me with COVID is that my mother can no longer come with to the hospital.  Funny enough though I don't mind.  I enjoy the drive to the hospital and catching up with the nurses in the chemo clinic.  I had a CT Scan on Tuesday and saw some nurses I know there too.  I miss seeing my friends though.  My birthday is coming soon and I have decided to celebrate virtually on Zoom with loved ones.  I have asked a baker friend of mine to make a cake for me and I will order a nice meal from Joey's probably.  I will play merengue and bachata and dance and celebrate one more year of life.
Brighty‍ - Glad to hear you are staying safe at work :)

moplanb‍ - Glad to hear you are happy at home. That's a great point you don't feel like your missing out while having treatment. Great job looking at the bright side.

altachica‍ - Glad that you don't mind the change. Do you feel like you can talk more openly without your mother there? Sounds like a lovely birthday celebration you have planned!! Happy Birthday in advance 😊
Danae
57 Posts
Hello,
the timing for that question is perfect Lacey_Moderator‍. I think that the second wave is impacting people more than the first and the restrictions. Personally, it goes on my nerves, not only for me but for my kids as well and I feel it and makes me feel bad. We don't have a real bubble, just us, a three generation household. My husband is the only one that works, in a kitchen, the kids doing online school since the beginning of the school year, and I don't get clearance and part of it is covid. I don't go anywhere, grrrr, except medical appointments. I used to go for the "big" grocery list shopping once a week with my hubby and youngest one (her only outing outside the neighbourhood where she could change scenery ), with mask and avoid touching items, before the numbers in Kitchener start raising. We are not seeing other people outside our household. and it sucks. Don't get me wrong, I love my kids and my parents (three generation household) but I need some adult time outside. I believe that cancer is one thing that we have to deal with, and adding covid in the equation is a game changer. As my little one says, "when covid is gone" we can get a part of our lives back.
altachica
87 Posts
I do feel more comfortable speaking sometimes when I am alone Lacey_Moderator‍ .  I don't want to discount the help my mother has been to me though.  She is a retired nurse and it has been helpful to have her with me when I see my oncologist.
altachica‍ - I didn't feel like you were discounting her support. I think that makes a lot of sense :) How helpful to have her experience and knowledge.

Danae‍ - It does feel like a part of our lives is missing doesn't it. Our identity outside of the house and our social interactions. Wishing you well during this challenging time.
Tilly59
22 Posts
I don't feel that covid impacts me much at all, because I was not going out much before it started. The only inconvenience is wearing the mask.  For me, it is still the uncertainty of when the cancer will return.

Cynthia 
Whitelilies
917 Posts
Lacey_Moderator‍ Hello
I cope by being a Home-Body......go almost nowhere......do lots of daily walks......I insist to buy groceries for my aging parents...and I bring them to the door.....my mom opens the door....and I am already stepping back.
COVID: BE GONE!!

altachica‍ Hello.....what a lovely photo.......Happy (early) Birthday !  spoil yourself at Joey's.....and more.....and dance.....

Whitelilies

Lillian
Nicky01
178 Posts
Lacey_Moderator‍ My cancer is gone I am happy and grateful for that and I thought everything would go back to a somewhat normal daily living routine but that’s not happening. Just got my latest blood reports last week and my white count is still too low and they can not figure out why so I just came back from having more blood tests today, they are now looking to see if it could be lymphocytic leukemia or another kind of blood disease because of something they found within the bone marrow my doctor said that he is not sure until they do more tests, I figure he is just being thorough and he doesn’t want to miss anything!( At least I am hoping that’s what he is doing)

So to answer your question yes covid is still having a big impact on my life and my husband’s life as well. I was warned again today to avoid all contact with other people which I have been doing since March except for hospital appointments and nobody has come inside our house since March, most of my doctors appointments are done on the phone, right now I was suppose to see my doctor but It was canceled because he has contracted Covid-19 and he won’t return to work until after the holidays.....three days ago I found a lump in my left breast and I was told today that because of covid they are backed up and It looks like the request made for a mammogram won’t be done any time soon, I was suppose to have a follow up ultrasound for a lump found in my right breast in March which I had been told in august that it was nothing to worry about because it was a cyst but the doctor still wanted a three months follow up and that too won’t happen until next year because of covid. I have injured a knee because of too much walking and that’s one exercise  I had to stop for now. I need physiotherapy but it will have to wait until the blood tests results are back and one of those test will take three months before I get the results. So I know all that might sound kind of bad but I still think that I am one of the lucky ones because there are other people that are still so much worst than I am and this past year I have kind of had to learn to roll with the punches and......take it just one day at a time because for now that’s all I can do!! Have a great day!!
Nicky01‍ 

Good to hear from you. So much going on. Amazing how you are taking it one day at a time. You're an inspiration.

I always remember someone saying you are the most important member of your Healthcare Team. Please keep advocating for the testing and follow ups you need. Don't get lost in the shuffle. 

Wishing you well,
Lacey
robegree71
41 Posts
Hello Lacey,
I am retired in Mexico on the Mayan Riviera so my circumstances are a little different. I wear a mask anytime I am in a public place except when sitting in a restaurant. They are only allowing 60% capacity here so the tables are spread out. I don’t go out that often given my lobectomy was in April and only associate with friends who  have been here all along. There are many Americans and some Canadians starting to arrive for the winter. I wear a mask near them and no social contact like shaking hands or hugs. I spend a lot of time golfing and it is one person to a cart unless it is your spouse or partner. Masks are mandatory anytime inside the clubhouse. 
Shopping for food is allowed with a mask and temp. check at the door. Only one member per family allowed . 
The majority of people living here are good with it but young tourists are a problem in following protocols. It will be a long time before I stop wearing a mask.
Spend a lot if time out in the sun which is pretty much daily but  I am paranoid about Covid so very careful who and what I touch.
moplanb
33 Posts
Lacey_Moderator‍ 

An addition to my previous post :

I forgot to mention that one of the biggest stressors for me right now is the reintroduction of PSWs for my 90 yo father. I have been a full-time caregiver for him since 2014. Eventually, pre COVID-19, I starting receiving some assistance in the form of 3 PSW visits/week. Just before the first wave hit, in the interest of safety, I dismissed all home care assistance. 

Now that I am going through chemo and am not as strong as I was, I decided to reinstate PSW visits. I am *very* worried about the possibility of being exposed, for both my Dad and myself. I feel as though I am between a rock and a hard place with regard to this decision. 

I don't mind saying that this scares me...

mo
supersu
85 Posts
this sums it up for me in a nutshell!

cancer is stressful on its own, but add COVID to the party and in my personal opinion ---- STRESS!

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robegree71‍ - Glad to hear you are safe and doing well down south. 

moplanb‍ - That is a tough spot to be in. Are you able to talk with the Homecare provider to discuss what precautions they are taking and share your concerns?

supersu‍ - Great share!! Stress on top of stress. What helps you cope? Humour I see :)
moplanb
33 Posts
Lacey_Moderator‍ ,

Today we had an occupational therapist come in to reassess my Dad. Looks like we have already put all of the necessary equipment/aids in place. She will return next week for one follow up visit. PSW visits start next Monday, we will have the same PSW for each visit. The PSW's that are giving homecare are not working in any long-term care facilities and apparently are screened every day before work. I am still concerned about possible exposure. I know that we are taking all necessary precautions and have to hope that our PSW is doing the same.

This in itself is stressful enough, but add to that my chemo regimen...

On a positive note my MRI has been booked (in addition to my CT) and I am hoping to see some improvement. It would be a wonderful Christmas gift!

mo
moplanb‍ 

Good to hear you have some things sorted out for your dad going forward.

I will be sending positive vibes for your MRI and CT. to be a great Christmas gift!

Lianne
123Th
14 Posts
Hi to one and all,

Just like many of you have already mentioned I do not feel as though Covid has impacted my life in a huge way other than not being able to hug my precious grandchildren or for that matter any of my family and friends.

  Having said that I have been through surgery, chemo and am now in recovery and all of this pretty much started at the same time as Covid reared its ugly head. I am extremely thankful that my surgery was at a time when family could still be there and I have great compassion for those who have not had that gift.

I also had the blessing of having my husband with me for the first chemo treatment which was a bonus plus, but like others have mentioned we adjust and for me it was fine to go on my own.  It was always five hours or a bit more so in this way my husband didn't have to sit through that long period of time. 

Walking for me is my therapy and I am very happy and thankful that I can get out every day to enjoy the world around me.  The fresh air is rejuvenating and does my spirit good.  For the rest I don't go anywhere except for medical appointments and the once a month grocery shopping adventure.  I have a large family  and circle of friends so we visit by phone, by video, by text, by email and some even use the old fashioned method of sending a card.  Ha. ha. Its not the same as in person visiting obviously, but it is great and I am ever so grateful for technology.  Just seeing the bright faces of my grandkids and to see them bouncing all over their parents makes my day.  


I am happy and content and looking forward to the day when a vaccine is readily available for everyone, but for now each day is a gift and one I treasure. That is my encouragement for anyone and everyone no matter what stage you are in, whether you are recovering or just starting this cancer journey.  One day at a time.  I admire each and every one of you as it takes courage and determination  to travel this road.  All the very best. 
Littlebeth
36 Posts
Lacey_Moderator‍  My cancer story started at the onset of COVID. I had to wait almost 6 weeks for my biopsy as Ontario went into lockdown and the medical system was scrambling to adapt to distancing, telephone appointments, cancelled procedures and surgeries and how to keep everyone safe. Most of the support agencies had shut down. My husband and I had retired to the Niagara region to be closer to friends and family and enjoy the wineries and restaurants, and I was out doing something almost every day. When COVID and cancer arrived together I had to deal with the same fears and anxieties as everyone else without any of the usual avenues to relieve them. 

Once I got into the cancer system, I had to navigate it alone while my husband waited anxiously in a nearby parking lot. Sometimes the news was good but often it wasn’t and there were many times when I was in tears when he picked me up. It was always a tough ride home after that. All of the cancer sites talk about the importance of having someone with you at appointments - for support, for recording information and asking questions when your own brain shuts down from overload and emotion. Others talk about having family or friends with you during chemo. Because of COVID there was none of that. Once chemo started I was sad to have to give up grocery shopping since many people were not yet wearing masks and I had problems with my white blood counts.

You asked about how we cope...For me, time and familiarity has helped. I actually preferred to do my chemo alone and it became somewhat of a social outing for me - not quite a patio lunch but at least a chance to see different people. The kindness of nurses and technicians helped to offset some of the isolation of COVID and the hospitals have felt safe. Over time, many of the cancer support groups have moved their workshops online and now I take as many of those as I can find. While they lack the social interaction that you get from in-person sessions, they were able to provide needed information and distraction. I also talk monthly with a Cancer Centre psychologist.

On the home front, when I felt well enough we were able to walk and do distancing picnics in the park with friends and family and use Zoom. When my cancer was diagnosed we told everyone and my husband formed a large email group called “(My) Team” sending out regular updates, both good and bad. It is a great outlet for him as a caregiver to get support from so many people and it gives me a lot of strength. 

I have now been through 6 months of chemo, a bilateral mastectomy three weeks ago and am waiting for my radiation date and while many of the days have been long, the months seem to have flown by. I still find COVID very claustrophobic, particularly with winter setting in, but I also know that many of the things that COVID prevents me from doing are the same things that cancer treatment prevents me from doing. So now we just have to get past both of these.


Sent from my iPad
Maly
16 Posts
Great topic. Now that my treatments are done, I'm feeling a bit more comfortable going out, but still very cautious. I still don't go out much and when I do I always wear a mask and hand wash/sanitize all the time. I'm still cautious because I check in on my elderly mother, and I wouldn't want to pass anything on to her. I also think I'm extra cautious because I have had enough of ill health and really want to try to avoid it again if possible. 
Take care and stay safe everyone. 
Thanks for sharing 123ThLittlebethMaly‍ 

It's good to hear you are managing okay and what helps you cope. Wishing you all well
Cooker47
11 Posts
I have Stage 4 prostate cancer and bone cancer, diagnosed after a lower body CAT scan for a kidney problem. I was in hospital for flash pulmonary edema mid-May to mid-June. I acquired two stents in my kidneys, already having two in my heart since March 2015. I left hospital still peeing in a bag on the left side but that only lasted about a week. The Medical oncology people (who are looking after my cancers) told me in August that I "had been through a lot". I'm still wondering what they meant. I am fortunate to have no pain to speak of, although that could change. I have to go in to hospital every three months to have my uretic stents exchanged. I also have three-monthly hormone injections (Eligard) and I take Apalutamide. I just had a full bone scan and CT scan to "set a baseline". Baseline for what? Life has now settled down for a while. I asked about "outcomes" but they still didn't call me back after a month. All I know is my Life Expectancy with either cancer is about five years. I am seventy-three and a half now.

Peeing was a problem in the early days and I spent the first month persevering with burning pains. I mentioned this to the Medical oncology 2nd in command at our first and only meeting, but she dismissed this with "it's not supposed to hurt". I don't like to be a dick, but I should have persisted with her. When I mentioned it to my urologist he said my urethra had gotten rather beat up what with the catheters and all and he prescribed an antibiotic that cleared it up within a week. Nowadays I pee like a racehorse. I used to pee every half hour no more than 100 ml at a time. Now I can go up to 4 hours and I easily fill a cup with 250 ml. I may even have to get a bigger cup. All this peeing tends to make me stay in even more than I did already. I went through a period wearing diapers but I gave up because they are expensive and Shopper's Drug Mart never has the right ones (fit, size and volume). It is as embarrassing as you let it be when your diaper falls out of your pants. In the Summer I wear shorts so it's no problem just to reach down and pick it up. Now it's long trouser weather and I have progressed to carrying an old saucepan in the car to pee into. Usually I can pick my spot. Darkness is my friend.

Most days I get up about 10, take my 17 pills (five or six held over until later in the day), make two cups of coffee, drink a cup of water with Lax-O-Lay, check my email and the Internet news, then go back to sleep until twelve or one. Afterwards I will fiddle with my computers (I have seven but only the two newest ones are really active). At some time in the afternoon or evening I might go out for an hour or part thereof including a walk. I log walking minutes and I try to get in more than 150 each week. I can go above 200, occasionally above 300. It's weather dependent and I have to admit to being really lazy. After my walk I will shop for food, come back home, cook my supper, watch movies, read, and mess with my computers again until I sleep. This kind of schedule can be as demanding as I choose to make it. I live alone so I have nobody else to please. There are benefits to living on one's own.

The people in the building where I live have mostly given up on not wearing masks, but only after being told repeatedly that they must wear them by Manitoba government. Through the Summer the local number of COVID cases stayed very low in the province, but recently it shot up so much the hospitals were becoming overwhelmed. Even on buses and in large stores masks were only made mandatory within the two months. I used to eat out quite a lot, go to the bar, and so on. Now I always eat in because under the current rules there are no alternatives. I had a bit of a slump where I wasn't eating much but now I am eating better than ever. I grill a steak or chop or steam fish most days. I have rediscovered cheese. I also discovered I love beans with rice and a scallion shaved on top. I go for take out to the jerk place around the corner and I discovered the local sushi place is quite good after living here five years thinking that it wouldn't be. I try to eat as broadly as possible and I have started taking Calcium Carbonate tabs "from oyster shells" because drinking two glasses of milk a day was proving to be a chore. These are the limits of my social interactions: food stores, two computer stores for parts and repairs, take out restaurants. I think most people would find that unnerving. I talk to my neighbours when I see them but most days I don't. This sounds terrible, but I lived like this for six years since I moved here, and it suits me fine.

Getting enough exercise is my current problem. Even when the weather is good as it is the past few weeks I don't seem to be bothered to do much. These are my thoughts for now.
Boby1511
363 Posts
Cooker47‍ 
Love your post! You are so independent! It's great. I love the routine too. 
I wish you continued good health! Sounds great on the pee improvement!
pomlady
25 Posts
Thanks for posting and sharing what you are doing.  I like your routine too, do what you want, when you feel like it.
Crazy people aren't wearing masks!
Hopefully the vaccine works when we get it and that will be one less problem we all have to deal with!
Stay safe.
Thanks for sharing how you keep busy Cooker47‍ . It's nice to meet you 
TT53
187 Posts
Lacey_Moderator‍ thank you for this topic.
I am a home body, so I am not too bad with it.  I have lots of hobbies, so if I choose to, I can keep busy all the time.  My hubby has a big shop, so he is busy as well, so we are managing.
My biggest issue is that we cannot see our family.  Our son and daughter and our grandkids.  That is our biggest impact of this.  We miss them soooooo much.  We had spent a lot of time visiting them, and now it is just phone calls.  That is so sad.
My mom,  who is in a senior home and has dementia, that one is the hardest one.  I have not been able to see her for almost 10 months.  We try zoom, but half the time she does not know who I am or she sleeps thru the session.  The family connections are the most important to me, and that is the effect of covid19 on me.
I think that we just need to be patient and the end is coming to this nightmare.  Wear masks and stay safe.
Hugs,
M...
TT53‍ - Glad you and your hubby are managing okay with being home. I agree missing the family connections is so tough. It will be so nice to hug our loved ones again 😊. Hang in there!
Boby1511
363 Posts
Maybe we should start discussion on who will take that vaccine... I have decided no. My sister had the N1H1 vaccine and it gave her the virus which she passed onto others. It seems too early for that vaccine. Likely I’m going be on the first list but I’m declining.
Cynthia Mac
3074 Posts
Boby1511‍ , I would venture to predict that by the time the vaccine is available to the segment of society that includes people with compromised immune systems, there will be enough knowledge about the vaccine’s foibles that we’ll be able to make an informed decision. 

Every vaccine that has been developed over time - polio, measles, chicken pox, flu - has had its issues. However, each one has also had its successes, and I can’t help but wonder where we would be as a society if we didn’t have any of them, or worse, if we had them and no one took them.
Stuartm
20 Posts
I am having a hard time coping with both, especially at the same time.

I stay home whenever possible, sleep lots and take Zanax.

I don't know what I would do without the Zanax, it is as important (If not more important) than my pain meds.

Life with cancer, as you know, is not easy, the uncertainty is my biggest problem!

Just out of the blue my mind starts going around in circles with uncertainty and it is a very uncomfortable feeling, bordering on a panic attack. There is only so much that "distraction" can do.

I need to smarten up and realize that I am not alone. It blows me away that MANY MANY people have it far worse than I do!

Stuart
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