Posted by CentralAB on Mar 19, 2020 6:51 pm
Posted by Cynthia Mac on Mar 20, 2020 7:34 am
Yesterday was a rough day for me. It was the end of my two weeks of sequestering, and while things have changed rapidly, I felt bad about going out at all, let alone to some of the more frivolous stops I made soon after I got home. I avoided crowds, thankfully, but now wonder if I really needed to go to the fabric store to get zippers for a project. But as time has gone on, and the information has come in, I am doing better.
Then there’s the nervousness about being around my Dad. AM I safe now to be around him? Should I wait another week or two to be on the safe side? (Meanwhile, he’s hopping in the car and driving to town...)
Then, our neighbourhood was vandalized night before last by a 12 year old who went on a tire slashing spree - thankfully he left my car alone (I was in a row of about 8 houses that he skipped), but many of my neighbours had to be towed, because he took out more than one tire on their vehicles. He’s been caught, but he’s 12 years old. (And they’ve only been out of school a week!) The police said it was the worst case of vandalism he’d ever seen in the city.
With all that being said, today is another day. Last night I re-joined Audible and I downloaded some meditation books by Jon Kabat-Zinn and Dr. Wayne Dyer and this morning I did a 20 minute meditation with affirmations, so I’m feeling stronger.
I am keeping in touch with Dad via phone, and he sounds good, and I really appreciate my sister filling in while I’ve been out of the picture.
Thank you for having your “finger on the pulse” of what I needed today! You really ARE a nurse! 💛
Posted by Laika57 on Mar 20, 2020 8:59 am
he should be released today as they are turning it into a covid assessment center. They're planning on sneaking in the stent replacement before the official end to procedures is announced. Cross your fingers.
what gets to me is the paranoia. Eyeing everyone sideways, stepping as far away from people as you can. The gut jerk when someone down the street is coughing...
time for fresh air. Funnily enough, there are so many more people out walking now than there used to be. Springtime, or decompressing. Who knows.
Posted by Lianne_Moderator on Mar 20, 2020 12:17 pm
Thank you for starting this very important post. We know how challenging it can be to be a caregiver at the best of times..
Sending out a big virtual hug for our fabulous caregivers.
justDwilldo - such a difficult time but I am glad it is eased even a little bit with your appreciation of the facility. Keeping you both in my thoughts
Posted by CentralAB on Mar 21, 2020 5:22 pm
Posted by CentralAB on Mar 21, 2020 7:32 pm
We also had some trouble with my wife not being able to swallow pills, and for a week or so I was unable to give a few of them to her. She developed a symptom that was really hard on her and myself, but I didnt know what was causing it and I was scared to let anyone in the house to check it out a little. Luckily, my old "nursing brain" kicked in, and I just back-tracked things a bit, and asked myself: "OK. Whats different now, than from say a week ago, before those symptoms started?" So the thing that came up was the one medication apparently causes withdrawal symptoms, the very same as what my wife was starting to experience. Then I went to the pharmacy, kept the social distance, and asked the pharmacist if that medication could cause withdrawal symptoms, of the kind she was experiencing. She said yes, they could, so we figured out a way to get this med into her and all is well. But with everything else going on, the whole thing was quite amplified, to us. So caregivers, if your "patient" has new symptoms, just remember to think back and check the meds...maybe they are not always being swallowed, or some such thing. Usually they have it on the bottle if the med is not to be discontinued abruptly, and this one didn't have any warnings about that so Im guessing thats why it slipped past me for a while.
Had to have a conversation with the funeral home guy today; not really my idea of a Saturday afternoon conversation. But my wife has always said she doesnt want any last minute panic planning, and to make sure things are arranged, in advance. It does feel good to have that out of the way, and to know that now, I just need to make one phone call when the time comes.
Meanwhile, when the world decides to panic, I have a little survival tip that I use frequently. Just find one thing "normal" to do each day. Today, I bought her flowers. (or, did I buy those for me, lol). Just a small bunch of Tulips for $4.00 and even though she is now totally blind, I told her all about them, and they sit on the coffee table as a little monument to "life goes on," and there is no need to stop loving one another when the rest of the world wants to panic. Its one of the reasons I frequently say:
"there is always a little bit of light."
Posted by Vox on Mar 23, 2020 11:09 am
I sit often and eat meals by myself and think I can do this
Who am I kidding
I sit and watch tv, or listen to music by myself and think I can do this
Who am I kidding
Its quiet in my home and I say, I can do this
Who am I kidding
Another crisis, more medications, I can do this
Who am I kidding
He says, I’m ready, I can do this
Who am I kidding.
I have always felt safe in our home, knowing my husband is with me…….. today, I don’t feel so safe…even though he is still here
Posted by Dot75 on Mar 23, 2020 1:10 pm
yesterday I had a good cry while sitting by myself. I have hobbies but I am not interested in doing any of them, I wonder why? Today I thought it was my daughters birthday, I even posted birthday wishes....I quickly realized I was a week early!!! Wow WTH where is my brain going these days! COVID 19 is the added enemy right now. I don’t go out of the house for fear of bringing this enemy in to the house and affect my husband, not sure I could handle that! We have young people that live nearby and are friends with our children. Every time they go to the store they ask if there is anything we need. They drop it on the front porch and I wipe everything down before bringing it in the house. I then etransfer the money. Works out great. It has been two weeks since his last treatment and he is still spending most of his day in bed.
I miss family connections. I spend a lot of time online, maybe I should just stop that and limit my exposure but I like keeping in touch with everyone and I don’t want to miss their messages. Take good care all of you. As the saying goes “this too shall pass” just wish I knew when.
Posted by Brighty on Mar 23, 2020 6:18 pm
Posted by Dot75 on Mar 23, 2020 7:16 pm
my sister is in the same boat as,I am just 4 treatments behind us. He has stage four as well!! Some days I sit and look out at our fifth wheel trailer and feel like I am mourning the fact we may not be able to go again!! I have been looking at my garden as well and saying that maybe when the nicer weather comes I could go and play in my garden!! I took the garbage out to the curb last night and just stopped and took some deep breaths and enjoyed the smell of the cold crisp air, almost reminded me of autumn not spring.
maybe I will dig out some yarn and see what I can whip up!! Worth a try I think....it might get me out of the blues for sure!! I will check in again and let you know if I choose something that I like. Thanks again,
Posted by Brighty on Mar 23, 2020 7:41 pm
Posted by Cynthia Mac on Mar 24, 2020 11:19 am
And, I’ve been trying to help others who are struggling, through e-mail and socially-distant communication.
Dot75 , I’m glad to hear the change in your message in just six hours. I had an “attitude adjustment” myself on Sunday in the form of a good cry. Apparently I’d been bottling up emotions for a few days, and things changed substantially after I allowed some of them to flow.
I’m glad that your hubby’s team is on-side with deferring a treatment. Are you able to “bulk up” his food by adding whey powder to smoothies (or is he non dairy) or other high-fat options? (Maybe nuts, or cooked legumes...)
Posted by CaregiverCAL on Mar 24, 2020 11:48 am
However, a pain developed and it was thought to be gall bladder. A trip to Emerg found a collapsed lung. A fluid draw was taken for analysis and it got worse. An ambulance was called, hospital admittance, a chest tube for drainage and a very vicious infection bloomed. The chest tube drained and drained and drained. The chest fluid grew very thick and would not drain, the antibiotics had some impact but could not defeat the infection. A surgical chest wash was done removing a litre the infected sludge but could not get it all so an additional two week regime of IV antibiotics was completed.
Five weeks in hospital!
I suffered a lot through all this time. It seemed my calm and brave demeanour evaporated. I reached out to our family and friends - they came through in more ways than I could imagine. My sister-in-law came, my neighbour took our dogs into her own house, neighbours cooked, encouraging emails came daily. Our optimism returned.
we are now home and gaining our physical strength. It continues to be a long road as a blood clot formed in the lung so we are taking it very slow.
I write all this under this topic as it was the question posed made me realize the journey and the progress we have made to get to our normal. I have always appreciated the contributions of those in this group. Thank you one and all.
Posted by Brighty on Mar 24, 2020 12:00 pm
Posted by Bookie on Mar 25, 2020 7:25 am
I am looking for some ideas of what I should make for his lunch to take with him Thursday?
Posted by Brighty on Mar 25, 2020 8:43 am
Posted by Janesheis on Mar 25, 2020 11:35 am
Posted by MCoaster on Mar 25, 2020 12:16 pm
The virus situation changes from hour to hour and plans have to change with them. I am in BC and heard a doctor on CBC radio this morning say that sometimes it is possible to arrange a visit to someone who is very ill. I am sure that visitors would be checked for the virus. Is it possible to connect with him by phone or better still something like FaceTime?
It is always important to have support whether you are the caregiver or the person who is ill but more so at present. We as a community have knowledge and experiences of cancer and do “get it” and we care for and support each other so please keep in touch.
Posted by Lianne_Moderator on Mar 25, 2020 12:31 pm
Kudos for making your first post. I wanted to direct you to a couple of threads under Forums > Treatments and side effects about chemo that may be helpful to you.
Let's talk chemo - https://cancerconnection.ca/discussions/viewtopic/48/35831
2 chemo videos https://cancerconnection.ca/discussions/viewtopic/48/64870
My chemo days were about 3 hours every 3 weeks. I found it helpful to have a couple of little snacks with me like a protein bar or piece of fruit, some tunes in my ear, a book or crossword - things to pass the time. Often though I just closed my eyes or talked to my mom who took me to appointments, or others getting chemo. However, with things the way they are these days, it is possible he may not be able to have someone with him.
Generally an anti nausea drug is given before treatment. In my case I took it at home in the morning before I went. I never did throw up but sometimes felt like I could. My hair started to fall out about 2 weeks after my first treatment. My chemo was a breast cancer cocktail so it will be different and there may be variations on how this will happen. Some chemos don't make you lose your hair but I believe his will.
After shaving my head, it was very sensitive I found it helpful to have a soft bamboo like cotton, cap for sleep or a sating pillow case as it felt a little rough on cotton pillow case.
The links I shared have lots of great info in them. On your profile wall I mentioned that there is cancer specific threads as well depending if it is Non Hogkins or Hodgkins - there iare threads for both.
Wishing you both well for the first chemo
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