Posted by Kuching on Oct 9, 2019 8:48 pm
Posted by Rayline on Oct 9, 2019 11:36 pm
Posted by Cynthia Mac on Oct 10, 2019 9:28 am
You’ve really been hammered with this disease, and again, I’m sorry to hear that. The good news is that there have been lots of advances made with regard to treating both lung and pancreatic cancer. If your husband’s has been caught at an early stage he might have a good prognosis. One of my former school colleagues was treated for this cancer last year, and last I heard from him (we’re friends on FB), he is doing well after treatment.
I am going to tag in WestCoastSailor . This wonderful man has been through a lot, too. He is a breast cancer survivor who currently has Stage 4 lung cancer. His wife had pancreatic cancer (sadly, she passed away about a year ago), so he might be able to share some information to which you will relate.
My father has Stage 4 lung cancer, and I’m his caregiver. Like you, I’m concerned about what will happen when caring for Dad becomes too much for me (a healthy, early retiree) to handle. My best advice for how to deal with it is - one step at a time. When I try to think too far ahead, I just get mired in worry and sadness and sometimes even grief, none of which helps me deal with the things going on today. Dad is still healthy enough (and I hope you are too) to live independently, and there are days when the helplessness of seeing him go through his chemo side effects take me in another dark direction. I have no children, so that feeling of helplessness is pretty new to me. (And to reassure you, Dad is dealing very well with his chemo. His side effects are mostly a few “blah” days about 6-11 days after treatment, and soft tissue symptoms (runny eyes and nose, and sore mouth).)
To answer your question of “but then what?”, I suggest that you start a conversation with your and your husband’s doctors now. The better they understand your whole situation, the more they will be able to help you search out supports, such as home care visits. If they recommend something - I don’t know - oxygen, a hospital-style bed, or even 2 hours of home care a week, to give a few examples - accept whatever is offered. (You know - rather than say, “It’s ok, I think we can manage right now.”)
Some other supports you can use that people might not think of, are
- get someone in to do some of the heavier housework (vacuuming, floors) so you can save your energy or apply it to a different purpose, like
- library outreach programs, where volunteers bring you books that you can check-out on-line.
- grocery delivery and on-line grocery shopping
- all these meal delivery services that have popped up - they make it possible to have a nice “restaurant meal” at home
- Meals on wheels style service - my Dad gets meals from the hospital where he gets his treatments. You fill out a form, then we pick them up when we go in for his next treatment.
I’ve even bought a remote control system for table and floor lamps so that you can control the lighting in several rooms without having to walk into a darkened room, or fish around up under lampshades.
None of us can see around the next corner, as you well know. You turned a corner one morning, and there was Jean Luc Picard sitting on the bridge of the freaking Enterprise! But, you’ve found a ship full of people who are on the same journey. Many of them have information they’re willing to share. All you have to do is ask. Please let us know how you and your hubby are doing, when you get the chance.
Posted by Kuching on Oct 10, 2019 4:05 pm
My lung cancer was discovered too late for surgery, chemo or radiation, so I have just started taking an EGFR drug, Gefitinib. About 60-70% chance it will help, at least for a while. I’m mentally ok about my own life being shortened, but I’m really having a hard time dealing with my husband’s situation. Especially as he is in pain a lot of the time, and not eating enough to keep a sparrow alive. He goes for a biopsy next week, then we will know more.
Thanks to some truly amazing neighbours, we have a lot of home help in place already - Nurse, physiotherapist, social worker, and volunteer drivers. We also have a retired doctor neighbour who has been endlessly helpful, and also got us a lot more info from other doctors than we would normally get in such a short time. So no complaints, just needed some company!
many thanks again,
Posted by Lianne_adminCCS on Oct 10, 2019 4:56 pm
I am glad you reached out here. You definitely have some company here.
While I did not have a stage IV diagnosis, I did go through a cancer diagnosis and then my mom was diagnosed after me. I can't imagine juggling both at the same time. I do know how worrisome it is watch our loved ones go through something like this. For me mentally it was almost more difficult watching my mom go through it.
Being a caregiver is not easy. Many on this site will attest to that.
This is a safe place to seek information, rant, vent, ...whatever you need.
We have a discussion forum that may be of interest to you for caregivers that can be found here:https://cancerconnection.ca/discussions/viewcategory/35
In addition, for yourself we have a lung discussion forum and a Living with advanced cancer group .
I am happy to hear you are surrounded with some great support people. That is so important
Posted by Cynthia Mac on Oct 10, 2019 6:18 pm
For your husband, are you able to "bulk up" his food? Some suggestions I've read here on the site include adding peanut butter and/or protein powder to a milk shake or fruit smoothie, adding protein powder to soups and stews, putting cream on his cereal or oatmeal, adding extra butter to soups, stews, and even mac and cheese. Look at high calorie treats like Hagen Daas ice cream, or full-fat yogurt, and cheese.
Hope this helps.
Posted by WestCoastSailor on Oct 10, 2019 7:37 pm
This is the third one of these response posts I've had to write this week. The tears are rolling and I start to write my response. And I say the profile name out loud to try and spell it and I just started laughing... That sort of cheekiness will get you through this journey like nothing else. Say Hi to Jean-Luc Picard for me.
Add a year. Reverse the genders. And you are telling my story. I'm the one with lung cancer and funnily enough on Afatinib for about six months as well. (Have they offered you Tagrisso?) And my wife was the one diagnosed with pancreatic cancer on October 1st of last year. She died 6 weeks later.
It sounds like the diagnosis is pretty recent and that people have rallied around you. I had a similar experience. But nothing really in my life had prepared me for this. I was overwhelmed and trying to make sense of it all.
I was rereading the posts trying to get a sense of your husband's staging and realized that they aren't giving that yet because they don't have a biopsy. So there is a lot of hope there. Are the Dr's giving him anything for pain? We started with Oxycontin and quickly moved on to morphine. She took the medication as needed. We had a pain journal that we used for tracking the medication and the symptom relief. That was really useful for the medical staff trying to help us. Trying to manage the pain and stay alert was one of our goals and was well supported.
Eating is a challenge all right. I just kept a smorgasbord of snacks available. As much Ensure and Boost as I could convince her to drink. And we found some flavors to add to make it more interesting. Fresh fruit and vegetables, crackers and cheese, anything that seemed to be high energy. Her nickname growing up was Bandit so anything that was on my plate was fair game. I tried to make sure those things were high energy and easy to digest. We had access to a dietitian that gave us some suggestions. Out here in BC we have 811 (BC Nurseline) service that can give you phone consultation with a dietitian.
I have lots more to say but I suspect that you will hang around and we'll have more chances to exchange thoughts. Know that we are here and that some of us have walked in your shoes.
Posted by Kuching on Oct 11, 2019 8:35 am
i wish I could do what you suggest for my husband’s food, but he is barely eating anything by now. I give him a multi vitamin pill, and try to get him to drink Boost with extra calories and with protein, but he only drinks one a day at the most, compared to the 4-5 he really needs. He might eat half a banana, half a canned pear, 2 spoons of ice cream....and that’s on a good day. If he forces it down, it comes right back up. Even jelly beans don’t seem to tempt him any more!
Posted by Kuching on Oct 11, 2019 8:48 am
Many thanks for your kind words. And yes, we do seem to be on parallel tracks here. I will learn from you. Just call me grasshopper.
My husband is already on hydromorphone, slow release and breakthrough, and is still in pain. Yesterday our GP upped the dose, so here’s hoping...
i just read your post with the link to So long and thanks for all the dashboards. A Douglas Adams fan? Are all cancer victims closet sci-fi fanatics? Who knew...
As you can probably tell, I’m feeling a lot more cheerful today, maybe just knowing that all the people on this site are there, are going through the same pain and misery and worry, and UNDERSTAND. So many, many thanks to all of you.
And Angus, what kind of boat do you have? We lived on an old Columbia 29 for 14 years, in Florida and the Bahamas - more parallels.