Being stuck in the house.

My situation : my husband passed 9 weeks ago exactly 6 months after being diagnosed with stage IV colon cancer. I’ve met when I was 16, married on my 18th birthday. So had been together 46 years and married for over 44 wonderful years. He was always my best friend. We had lived on an acreage until last summer. We decided to sell and downsize as we had begun to go camping again. We bought an awesome travel trailer and loved it so much that we decided to sacrifice our beautiful acreage for a smaller home so that we could spend out retirement years travelling where and when we wanted. That’s kind of hard to do when you have an acreage to tend to. my husband was having some tummy troubles in May so self medicated with an over the counter antacid medication. I insisted he see our GP as it could be something more. He was always SO healthy. Worked as an engineer in the oil and gas industry until he was 71.
anyway the GP gave him a prescription for antacids. Then my husband got stomach aches & diarrhea. So thevGP ran blood & stool tests. Results: anemia and blood in stool. Our GP was able to arrange an urgent colonoscopy. We moved into our “new” home on July 15. His colonoscopy was July 16. They discovered a 2cm tumour. We got a surgeon appointment for July 23. At that time surgeon had already reserved surgery date for August 1. We felt very lucky to have such speedy access and treatment so we’re so very, very hopeful. 2 days before the surgery my husband was sent for a CT scan. On the eve of his surgery (July 31) we got a call to say the surgery was cancelled as they found more tumours in his liver, peritoneum, and spots on his lungs. We were devastated!! He had been so healthy with no indication of this disease. So he opted for chemotherapy. We saw an oncologist who was very optimistic so the journey began. It was rough and unsuccessful. No change in tumours after first round (4treatments) and my husband was losing weight drastically (cachexia - which the medical professionals seem to treat as a taboo subject). He totally lost his appetite. I tried EVERYTHING to get him to eat. But the pounds continued to drop off . The oncologists answer was to drink 3 bottles of Boost a day!
After 2 treatments of the second round my husband,in conjunction with home care nurse and Drs at hospital where he was receiving his chemo, decided to discontinue the chemo. His oncologist was not responsive to calls.....
All of this happened around the Christmas season and I think my husband began to fall between the cracks. Our GP was leaving the country and we were looking for a new Dr. My husband began to get terribly dehydrated so we were visiting hospitals and Urgent care centres to get him re-hydrated via IV fluids. He also suffered from chronic constipation.
from June to December he lost around 70lbs.
we finally got an appointment to see the oncologist on January 8 this year. He didn’t even examine my husband. Just told him that it was his own fault for not eating and drinking enough. Told him to drink 30 mls of water every 15 minutes for 10 hours a day. My husband was sleeping most of the day at this point. The oncologist also told him to eat lots of mashed potatoes with gravy. Also said my husband was too sick for him to treat! Wanted to see my husband in 2 weeks, expected him to have gained weight and not be in a wheelchair. My husband didn’t have the energy to walk more than a few steps at that point. The oncologist also said that his disease was nit worsening despite CT scans indicating differently from the local hospital. The oncologist called the results “bullshit!”
we were stunned to be treated this way by a specialist.
A week later January 15th my husband was lucky enough (?) to get a room at our local hospice. The staff were above and beyond amazing. I stayed in the room with him the whole time. It was obvious that he was deteriorating day by day. They were the longest days on my life. I felt like January had over 100 days. Each day I’d wake up knowing that it would be one day less..... we had wonderful friends visit frequently and supported me tremendously. Our three sons came too to be with their dad.
Sadly he passed at 8.20 pm on January 31, 2020. Only one of our sons was present so we both held a hand each as he took his last breaths.

Now I am completely devastated. Some days I don’t know how to carry on. My gym classes are cancelled, no more coffee or lunch with friends. Not even nice weather to go out for walks. Last Wednesday was my lowest point. I have suffered from depression in the past but this is incomparable. I reached the point were I wondered what was the point in continuing....by this point I figured that my sons, grandkids and pups would be able manage without me. I didn’t have a specific plan but the pain was so severe that I did not want to continue. I took an anti anxiety pill and was able to calm down. Next day I made a GP appointment. Thursday I cried so much that I went to bed exhausted at 7pm. I slept till midnight then took a sleeping pill and slept till 7am.
I still don’t know how I’m going to get through all of this. The social worker at the hospice recommended this site to me as I had reached out to her too. I really scared myself last week when I didn’t want to carry on. I’m usually a much more logical thinker and always put others first. But that night I didn’t care.....
So, if anyone has ANY tips on how to weather this storm I would be SO grateful. I miss my husband so, so much like many others on this site. I feel empty and bereft. I can’t fathom that he is gone. How do I get through this???.

 

I am so sorry for your loss. And all you went through with doctors etc. it seems to me you weren’t t treated right at all. This life we’re now living in, where we can’t visit friends or family is definitely making things worse. Your story made me cry, you and your husband were begging for help for treatment and we’re treated so poorly. Sleeping is definitely one of the hardest things for everyone. Either feeling depressed and sleep too much or can’t sleep at all. For me, I wasn’t getting sleep, still hard for me but I’m doing better. Ron and I were married 41 years together 44 years. He passed suddenly Nov 17,2018. We thought he was healthy, but he suffered a massive heart attack that started out like a stomach virus. Then chest pains, it all happened so fast. I called 911 and the ambulance arrived quickly. Gave him aspirin and got him out in the yard. While waiting to be rolled into the ambulance he yelled, I love you Robin, at least 5 times! I’m lucky I had that. There’s guilt too because I did t answer him. But I’m Lucky he did that. He went down hill fast. I saw him getting worse waiting to be pushed into the ambulance. To this day I feel they didn’t treat him right or quick enough. My neighbor witnessed it and agreed he wasnt treated right. They worked on him at the hospital, had every cardiologist there working on him. This started at 9:30 pm and I lost my soul mate at 11:34pm. Devastating. Went from having a beautiful day together to a nightmare.
I’m afraid there’s no magic to get through this and I’m still on that journey. What helped me was keeping busy but that’s hard right now with this virus. Sharing your story on here is very helpful. People on this site care and understand what you’re going through and that feels comforting knowing you’re not alone. Stay in touch with family and friends as best you can. Also reading other people’s stories seems to be helpful. I believe you came to the right place. You’ll get responses from people who care and you’ll get compassion. You’re not alone and everyone on here is here for the same thing. To share and talk and hopefully it helps.
Take care of you, continue to post on here and read.
Wishing you a better tomorrow.
Hugs, Robin.

 

It’s the worst possible time to be isolated. And yeah I can see all of the extra bullshit with the agencies. I can’t wait for this to be over and be so busy to get my mind off of everything. I was told by my aunt the other day that I need to get over it. It’s so weird. Sorry to hear about the weather there. It’s like getting hit in every direction.

 

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Thank you Robin for your reply, your caring and compassion. I feel so bad for you losing your husband that way. I get mad at myself for trusting the oncologist - I have lodged a complaint to our area health service. It’s not something I usually do, but I don’t want anyone else to be treated the same way. My husband was feeling so guilty for not doing enough to help himself but it was nothing he could control. How dare that oncologist make him feel that way! Unfortunately, we trust the specialists and believe them. I think we should have asked for a second opinion even if it didn’t make a difference in the outcome, my husband would not have felt so bad about himself.
Yes, I’m trying very hard to stay busy. Initially I think I was too busy as I was finding it hard to find the right balance. I was doing too much and getting over tired and weepy. Now is the complete opposite....not enough to stay busy. but I will continue on this site. People DO care and are all travelling a similar path. Another lady I know - who lost her husband just before me - said “ everyone else pretty much returns to their regular life. Meanwhile, we feel like we are in no mans land trying to figure out which way to go.”
I believe that the people travelling this path are more knowledgeable and understanding...... Julie

 

It’s amazing how people think you can “just get over it”. My brother told me that I need to stop crying!
I do feel like I’m being assaulted on all fronts! Grieving, virus/isolation, crappy weather, paperwork and financial issues. And YES! it would be great to be so busy again. I spent a few days unpacking some boxes from our move last summer. I thought it would keep me busy for a while. It did but my husbands writing was on the boxes. Everything I unpacked reminded me of him. Even found books from when our boys were little and then the tears flowed as I remembered him reading the stories to the boys. It seems to be never ending.
I wondered this morning if maybe I was going a little crazy. On our news they commented on a tiger at Detroit zoo (I think) testing positive for Covid 19. I didn’t know they were testing tigers!! Then driving to the bank our town had a sign up warning about Dutch Elm disease!!, Really? At the bank it was like trying to get into Fort Knox. My appointment was over 30 minutes late. Then they still couldn’t tell me how and when I can access my husbands retirement funds - even though I’m the beneficiary. So they tried calling someone else but everyone is too busy to answer the phone. So I am left hanging ....
I am just shaking my head and feeling like this is all a bad dream.

 

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I literally was just hoping I was in some kind of coma and this was all a bad dream. That she would be there when I work up and I’d tell her how I had this insane dream that she died and the world literally shut down a month and a half later. I couldn’t imagine the feeling of unpacking stuff. I’m trying to move soon. I need to get out of this house. She is everywhere. I hope you get access to his retirement account soon. What a shitty year. I long for the day I feel “normal” again. God only knows. Hoping for a peaceful time for both of us on the near future.

 

I don’t know if I’ll ever feel normal again. I was with my husband since I was 16. I’m 62 now. All I know mostly is life with him. We did everything together. I still haven’t changed his pillowcase yet as I can still smell him on it. I don’t know how long it is healthy to leave the pillowcase on but for now I can’t bring myself to change it. We had barely been in this house for 6 months when my husband passed away. I feel very safe here so don’t want to move. The memories are everywhere for me too. I can’t sit in “his” chair or even sit on the sofa where he spent so much time in his last few weeks.
I really don’t know what I’ll do with our travel trailer ...we had the best times there and our retirement plans were to travel and spend time together. The social worker at the hospice told me that we had all the plans in place except his body didn’t cooperate. It is so hard to accept as he was always so active and healthy.
I woke up a few days ago and for a split second thought he was in the bed with me. Someone was leaning against me and had the hiccups...it was one of my Yorkies but for that fraction of a second I thought he was there......
Yes, a peaceful time would be good. And getting over all the red tape and bureaucracy ....yes, a shitty year. And it’s only April....

 

I can’t imagine that type of pain you are in. I’m 39 and she was 32. By best friend. My person. We didn’t have a lifetime together. But damn did we have fun! And all those memories so I can’t imagine what that pain feels like. I can’t imagine a pain more than this but I know there is. I don’t want to experience anything like this again but I guess chances are I will. I’m so sorry for you. I was thinking something of that sort the other day. How some have worked and were together all those years and then their time was cut short like you and your husband. That amount of pain I wish there was something I could say to take the pain away even just a bit. And damn it’s only April and god only knows.

 

Julie and Skies24, I’m afraid that what the woman said about support and people moving on with their lives, that does tend to happen. Happens to us all, and people saying hurtful things, I’m so sorry you’ve each had people say such harsh things. I had a cousin ask how I was doing and I answered I’m living one day at a time her answer was, still? These things hurt more then people realize. I don’t think people want to hurt us, they just don’t understand because they haven’t felt such a loss. I try to understand they just don’t know how this feels, but sometimes I want to say, one day you’ll realize
I actually did exactly what you’re doing, I kept his pillow case on for a long time, it’s comforting. Julie you and I have quite a few things in common. I was also with Ron since I was 16. And I still haven’t sat in Ron’s chair, I just can’t. I have pillows sitting on it so no one sits there and our dog can’t jump up to sit their either. Ron and I were planning to retire this year and get a RV to travel and enjoy life and our time together. It’s surprising how many things we have so similar. I’m also 62.
Losing our spouse or loved one is hard enough, nothing feels right nothing is right. So sorry the bank is being difficult and this social distance we have to deal with, it all just feels like too much. How much can we endure. I feel so bad for you both that you’re stuck in the house and it’s so difficult to get support.
Certainly does feel like a bad dream.