Posted by Lianne_adminCCS 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
Posted by Lianne_adminCCS on Mar 25, 2020 12:36 pm
My heart breaks for you for the position you and your family have found yourself in. Are you able to skype or facetime with him at all? That may ease the distance even a little bit to be able to see each other's face. I know the hospitals near me allow email to the hospital where they are then delivered to each bed/room like mail. We did that for my mom once when she was in hospital during a snow storm
Thinking of you
Posted by Janesheis on Mar 25, 2020 1:34 pm
Posted by LMcL on Mar 26, 2020 7:46 am
Posted by Cynthia Mac on Mar 26, 2020 9:11 am
When my mom passed away (almost 3 years ago), many people helped with things like survivor benefit applications and whatnot. In my province, funeral homes are designated essential services. Much of anything that needs to be done financially now can be done over the phone, and where signatures are required, by e-mail. If you have a financial advisor you can reach out to, perhaps they can help, too.
Again, I am so sorry that you have to go through this - especially now. We have a discussion for coping with grief, and I see in looking up the link that someone else has recently joined that group. I hope that Cancer Connection can indeed connect you with people who are also going through this so that you will know that you are not alone.
Posted by Lainie on Mar 26, 2020 2:10 pm
Posted by jorola on Mar 26, 2020 7:19 pm
Peace and comfort to you and your family,
Posted by WestCoastSailor on Mar 27, 2020 12:08 am
So sorry that you are struggling with legal aspects of a death in this time of isolation. I know a lot of social workers are doing virtual conferences to assist with things. Is this a possibility? There is something about seeing a face and not just a disembodied voice that makes it a little less lonely. I can only imagine how difficult it is to grieve by yourself.
When my wife died about eighteen months ago, one of the things I did was make a little photo album. A lot of our photos were digital so I just went through them, made prints at Costco and put them in a pocket album. When times came that felt especially lonely I just pulled it out and looked through it. It seemed to bring her closer to me. One of my fears in those early days was that memories would fade and that was the last thing I wanted. I tried a bunch of other things too but that was the one that worked best for me.
Thinking of you and hoping the clouds lift. Let us know if there are other things that you are struggling with. ONe of the things we do around here is listen.
Posted by Bird on Mar 27, 2020 2:40 am
my moms started her radiation and chemo treatments this week
not only did we find out that we would not be able to accompany her to her visits but now she just told us, my sister and I, that we will be able to see her for the next couple 3-4 mths while she undergoing treatments because she is to vulnerable and at risk sick
I’ve been crying non stop because at a time on her life that she would of needed us more then ever, we cannot be at her side
she is at home with my dad and he will be bringing her and helping with Everything.... I’m scared for both of them
Posted by Cynthia Mac on Mar 27, 2020 8:53 am
I’ve read of people getting creative with video calling, standing outside and chatting on the phone within safe viewing distance. Some people are even resorting to good old snail mail to write letters and send cards.
I understand “the guilts,” too. I’m my dad’s primary caregiver, and I haven’t seen him in over a month, because I went on a trip, and, even though it was booked 15 months ago, I felt bad that I went, and have felt the need to isolate from him on top of that. But, I have had to figure out how to channel that negative guilty energy into doing what I can from a distance. In the last week, I made a dessert for him and had a relative pick it up and take it to him, and I’ve set up on-line banking so that I can pay his bills and save him going out to the bank. I think it’s important to channel our negative energy into creative, proactive endeavours, especially now! Add to that, that I haven’t seen my BF for over a week - first I had the guilts for seeing him at all after my return home, and now I’m wary because he is still doing his volunteer work and — well, you know — immuno-suppressed dad!
Be kind to yourself, and try to look for creative ways to support your ex-boyfriend. Let us know what you come up with!
Posted by Cynthia Mac on Mar 27, 2020 9:00 am
Some other things you can do to support her would be to provide your Dad with good factual information about protecting themselves, cooking meals, and delivering them (or ordering dinner delivered to their home), having long video chats (or whatever length your mom is up for).
I know these things aren’t the same as being there to “plump up the pillows,” and I hope you can come up with some creative ideas, too.
Posted by MCoaster on Mar 27, 2020 12:52 pm
The idea of The Bunny Caper is beautiful. Is it going to be videod for later viewing? Keeping the mind from wandering too deep into the negatives is hard to do and is only really useful if it can be used to move forward to better and more constructive thoughts. I use mindfulness a lot as do others in this community. Have you and your family tried it? Basically it is using concentrating on your breathing to give your mind an opportunity to move on to other thoughts. Lots of videos on the web about it. Also I see lots of helpful suggestions from others in this special community who speak from personal experience.
If it is possible I would love to see a bunny photo.
You are in a worrying and sad place at the moment and please know that we are here for you and your family when you need us. You will be in my thoughts next week.
Posted by Bird on Mar 27, 2020 1:13 pm
i have not tried mindfulness
will definitely look it up and try
I will speak to my mom via FaceTime and we can call each other
I guess later on as the weeks go by maybe we will be better using email depending if her throat hurts
I’m hoping the weather will start to be nicer and we can go see her thru her window and maybe talk that way
she’s about an hour away
how can I help my dad ?
Posted by Lianne_adminCCS on Mar 27, 2020 1:35 pm
I can only imagine how difficult this is for all of you right now. My mom is only 10 mins away and is in pretty good health. I did a (long) walk to her place just to say hi from below her balcony. It was nice but also left us both in tears. I hope you get a chance to do something like that down the road. I love the bunny idea!
As to your dad, let him know ( privately ) that he can reach out to you if needs to have a place to share his concerns, questions, vents . Caregiving can be challenging and if he knows he has a soft place to land in you and your sister, that could be very helpful.
Sending good old fashioned snail mail with a nice letter, a drawing from your kids ( not knowing how old they are ). You could arrange a meal prep delivery or similar service - with current drop off protocol. Just some things to brighten their day and make it a little easier where possible.
Under this Forum , there are many other discussions about Caring for someone with Cancer. You may find other ideas that members have shared or you can pose a question there by starting your own topic.
I am glad you reached out.
Thinking of you
Posted by WestCoastSailor on Mar 28, 2020 10:41 am
I started a reply a day ago and then through my tears inadvertently hit the wrong key and lost the whole damm thing. I actually just said "Fuck this." (which as Lutheran lay minister is pretty strong language) and went for a walk. Still I can speak to this both as a caregiver and a patient. And I want to.
Supporting means different things for different people because we all are different. I have discovered a couple of basic principles. Be creative. Listen. And something around here we call "holding space." Let me start from the back. One of the things we wrestle with is difficult emotions. Anger, grief, resentment... you get the drift. Sometimes we need to allow ourselves and the patient to experience those emotions. We often don't even have the words for those emotions. Just making the space for those to happen is important. I cried this morning at a post of a NYC neurosurgeon telling his wife as he left for work that he didn't know if he would be back. He had left letters for her and each their children in a desk in case he didn't. He had things that he didn't know how to say face to face but he wanted them said. I think that is support. So "hold space" to allow the emotions.
Listening is so important. Just ask the question. "I don't know what to do to support you. Is there anything that I can do?" I have no idea what the answer might be. And the only way to get that answer is to listen. Sure there are things that people have done for me that I didn't even know I needed until they did it and I realized that it was exactly what I needed. An example. About a year ago I started listening to podcasts. I was describing to a friend some of my struggles with spirituality and all the people that wanted to tell "Everything happens for a reason." I knew that it didn't or at least if it did I didn't know what it was. Sshe laughed saying, "you might find Kate C Bowler's podcasts helpful. Called "Everything happens and other myths Christians tell." It was exactly what I needed. She lifted my spirits and let me know I wasn't the only one that struggled with that. But those are the exception to the listen. Often people know exactly what they want. A friend is dying and he wants to put his photos in order. His partner is scanning them and they are adding a narrative to them. Doesn't have to be done in person and will be a tremendous legacy for his children and grandchildren.
Finally "Be creative." This is a new time. We are all doing things we have never done before. Well some of us have and we are helping those who haven't. What I'm struggling to say is we don't have lists of what to do with covid and cancer. It has never happened before. The unprecedented lockdowns, physical distancing, and social isolation are all new. Online dance parites, virtual coffee breaks, are all new to many people. How can we combine what we know with what needs to be done? Maybe that needs to be a new thread here.
Know that we walk with you in this difficult time. Let us know if you come up with new ideas.
Posted by CentralAB on Mar 31, 2020 7:00 pm
Who am I kidding
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
Caregivers can get quite stressed over such things; but your poem reflects beyond that by acknowledging your perseverance and desire to do the best you know. Your husband is very fortunate to have such a caring wife to help him through this. I hope you are doing well, and finding ways to care for yourself too? I wish I could reply to all thats said in a more timely manner, but I do feel bogged down these days.
Today I saw this female Downy Woodpecker outside my window, and it looks like she was praying for the right "man" to come along and get with the program of starting a family. It reminded me of new life, new things, and possibilities beyond my own scope...as caregivers, we can always find ways to look beyond ourselves, and pull ourselves, or even someone else out of the doldrums...
Posted by MCoaster on Mar 31, 2020 9:22 pm
Thank you for all that you do for your loved ones. Thank you also for sharing your thoughts and experiences and allowing us accompany you in a small way on your journey.
You are very special!
Posted by CharlotteS on Apr 1, 2020 12:21 pm
Posted by Cynthia Mac on Apr 1, 2020 12:36 pm
Then I came home, wiped down all MY groceries, and Lysol-ed the interior of the car!
Dad’s energy was fairly low, and there’s been a wheeze in his breathing that I noticed the last time I saw him, but I was able to see him, and DO something for him.
Now that I’ve been showered down, I’m enjoying a fabulous lunch of tomato sandwiches - one with sliced turkey and one with cheddar!
Search all discussions