I have no idea if this is ok for me to be writing this. I mean, its not me, its my husband who is facing this horrible disease. Its not me. I'm being completely selfish in trying to understand my own feelings so that I can try and help him as much as possible.
There are so many questions and neither of us know how to tap into the whirlwind that is constantly blowing in our minds to be able to vocalise and ask the questions that we need to.
Its been 40 days since my husband was told he had cancer. That in itself was shattering news. He had a phone call to tell him. You have cancer but its not skin cancer like we thought, so you're in the wrong place and we'll refer you.
Its been 20 days since we were told its bile duct cancer that's spread and we can't cure it. Lots more was said that day but I'm not sure that we heard most of what was said. That's when the nightmare really kicked in. So did the tears. Oh we cried with the original diagnosis but this was ....... well, this was more.
How can this be happening?
There must be a mistake?
He's not ill?
He's only 51!
He's relatively fit and healthy!
He has no symptoms other than a lump behind his belly button!
My husband wanted to be told everything. The oncologist was lovely, but didn't hold back. There was lots they didn't know but they did know that it was quite rare as it started in the bile duct and spread. There was lots of liver damage (so many questions there, as my husband rarely drinks, never done drugs etc.) Likely to be looking at 6-12 months although its not an exact science. If he has treatment, we might get two years.
Its hard in that moment to look beyond 6 months. 6 months. 6 MONTHS. That's all I could hear. 6 months with my soul mate. 6 months with the man that I've loved since I was 17. 6 months with the father of my two children.
And this is one of the things that I have a problem with although I have a problem with so many things at the moment . So many of the thoughts that are racing through my mind are so self centred. Most of them contain the words I, me and my. My tears are selfish, as they are for me. The thought of losing this wonderful, pain in the bum man that I am so lucky to have by my side is filling every waking moment.
How do I get passed this bit (there's that word again, I) so that I can stop being a hysterical mess and help my husband. Answers on a postcard would really be appreciated.
I need to do this. This is a time where its ok to say I need to do this, as I need to do it for him.
Hi, just wanted to send you all the best wishes possible. Found out my husband has stage 4 bowel cancer, such a shock to us as he's only 39, no drinking history or drugs, very active and into health and fitness. Like yourself I've been in tears everyday, so scared and worried for my best friend, my soul mate, I love him so much it hurts. We've cried together, and held on to each other, we made a pact to do normal things but also allow ourselves to cry together. We went for a walk today, it was lovely, it was a field where he ran everyday, he use to ask me to.join him and I always declined. Today I regretted the times I never joined him but im holding on to make more memories with him. I would never wish this disease on anyone, its so cruel
Hi DarkCherry. My husband is 51 and also has incurable bile duct cancer. He was diagnosed Nov 2019 had surgery & chemotherapy, but the cancer has come back quickly after all he has been through and its in his lymph nodes now, but spreading. I know exactly where you are coming from. We have had a year to get used to the diagnosis but found out 6 weeks ago it had come back after his last scan. It's totally devastating. I too have felt overwhelmed, tearful, guilty & selfish for thinking how is life going to be without him. I try to focus on him but it's incredibly difficult. It's like a grief for our lost future, our children will grow up without their dad around. It's so painful to think of life without him by my side. I don't really have any answers but have found that the small things help and that each day can be different. We try to go for a walk every day. We hug and kiss. We try to laugh at something even silly things. We read poetry and stories, and play music together. And when the tears come i have to let them fall, this is honesty and I try to share how i am feeling with him and encourage him to do the same. He feels angry and is trying to deal with the fact he will die. I am overwhelmingly sad. The pandemic is making the isolation worse and there is little escaping it or many distractions. But we are still here and still living. We really try to make the most of everyday but its really hard when you feel so awful to do that. Sometimes I feel i can accept it, other times not. Go easy on yourself.
Hi Dark cherry,
My husband received his incurable cancer diagnosis xmas Eve 2019. All the questions you list are the same ones we had. We could not take it in, it must be someone else. We went through a whole range of emotions. There is no right or wrong way to deal with it, all I can say is baby steps and try and concentrate on the treatment if that is an option.
We tried to cherish every moment that we could together, one good thing with lockdown is that I was able to work from home and be with him 24/7. We even managed to have a holiday together in between lockdowns.
Sadly my husband passed away a month ago. I had started grieving some time before he passed as I knew this time would come, but nothing ever prepares you for the moment you are alone. He was just 52 and the love of my life, my soul mate and best friend. x
I can relate so much to what you're saying. My husband was diagnosed with non operable pancreatic cancer at beginning of December. I too have been with him since I was 17 the waiting for tests and then results due to the Christmas bank holiday etc is torture. Our heads are spinning and all the while I am trying to hold it together when I'm falling apart inside. Nights are worse as very often you are unable to sleep due to your thoughts so the following day you feel washed out. Covid 19 has made everything much more difficult, my grown up kids are missing spending time with their dad. Chemo should have started last week but the biopsies were inconclusive so he had a repeat EUS and more biopsies on Friday, so hope these will give the info the oncologist needs to begin treatment
Sending you so many virtual hugs. Covid makes dealing with all of this so much more difficult as you can't be by their side for a lot of what they are facing. I'm trying my hardest to take comfort in the fact that while we may not grow old together as we had always planned that we've been together a long time and I cherish that we found each other. It doesn't always work but in the moments it does, I'm grateful. I hope you are able to, even for just a few minutes here and there.
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