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Reply by DJ 74

07 Jun 2016, 2:51 PM

Thanks Marymary.
The ex is still hounding my guy, and now he is taking her to court to access the child. She broke the interm order of every other weekend visit with child and refuses to grant access as per the interm order. She is saying the kid hates me and I'm a user and should be kicked out of the house and his life.
We went to cancer doctor yesterday and we found that he probably doesn't have that long to live. A similar cancer patient as my guy with the dr was put on a great drug but died 18months later, and this could very well happen here with my guy. He has cancer on the axle skeleton, the lung tissue, the lung lymph nodes and abdominal lymph nodes, the peritoneal cavity has cancer also. This does not sound good. He gets the pleural-X inserted tomorrow to drain the lung fluid by home care. This diagnosis doesn't sound good does it?
I am numb. I cried to my Dad yesterday saying I"m 42 and about to bury my guy. This is not supposed to happen. Today I am numb.

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Reply by KathCull_admin

12 Jun 2016, 4:04 AM

Hi DJ 74
Must be hard for you and your guy - I like how you say 'my guy' reminds me of the song about 'my guy' - but must be hard to be dealing with the news about diagnosis along with the legal issues. That can be so tiring.

I find that sometimes feeling numb is a protector. It blocks feeling so we have time to regroup and find our feet.

It's good you have someone to cry to DJ 74.
Katherine

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Reply by Marymary

13 Jun 2016, 7:47 PM

Hi DJ74 - sorry takes me awhile sometime to get bavk on here. I am so sorry to hear of diagnosis...it must be so difficult for both you but at the same time you can NOT compare your guy to that guy who passed on 18 mo. later, - who knows maybe he'll last longer than that.

I am glad he still is taking charge in regard to the kid(s), that is something he can deal with at this time when there is so much he may think he can't deal with - does that make sense?

It is always hard when one parent thinks one way & the other another way. The unfortunate part is the kid(s) are the ones who suffer, she is being selfish and not thinking the children who need their dad and vice versa - sad part is the kid(s)....I will say some prayers regarding this for sure.

The other thing I would like to mention DJ74 is not to worry or stress over things that have NOT happened yet., I know it's a tough one believe you me but my son's dad is still here with us and they did not think he was even going to make it through therapy last summer and he is here and much better than he was for sure....we deal with today and only today. When I say we it is our son and me I refer too. But yes after 3 years of his cancer's, this works for us, it is easier this way it...today what can we do or deal with....not tommorow or next week but today. This way we have found we can enjoy today much more than thinking about what is going to happen down the road. How long is that road, we do not know so why stress and strain if he will be here for the next thankgiving or xmas etc.

Just suggesting that is all - this is what works for us. Making the most of each day and that makes it so much more. We all know it will never go away but in the meantime what we do every day matters the most.

Good on him taking control of the situation in regards to his children - gives him a different focus than just on his own health (maybe?) and as I said I will send some prayers his way.

Take care of yourself & do not allow his ex to affect you so much ok (hard I know) but you know hte truth as does your guy, you are there present and accounted for and obviously how she feels about you is because it bothers her still after this length of time that he has moved on from her and has you now. THe kid(s) know this also.

Take time for you too ok. Sending you positive thoughts - hugs

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Reply by KathCull_admin

02 Jul 2016, 1:57 AM

Just checking in to say hello. Thinking of you all and hoping you have at least a few peaceful moments on this Canada Day.

Katherine

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Reply by DJ 74

04 Jul 2016, 1:41 PM

Thanks MaryMary. I am not getting the hang of living in the now yet. I worry about the future what it will look like, what will happen to me...to I get kicked aside when its all over, who do I have to hug me when its all over. Who hugs me? I well be alone!!
We found out that his primary cancer is bile duct cancer. Its called Cholangiocarcinoma that has spread thru his lymph system. Doesn't look good really. If the 3rd cycle of chemo does not work he will try a different route, maybe tyrosine kinase inhibitors in pill form. And then if nothing after that we decide to go off or stay on. His shortness of breath is worse he is now on morphine to relax the airways and it seems to help.
I bought the Gerson Diet book to see if we can try something like that, but you have to wait for the chemo to be over before trying anything like this apprently.
The ex is still a pain in everyones arse. My guy has not seen is child in a month now. She keeps sending emails to the whole of his family explaining this that and what ever other BS she can come up with to look good. Drives me mad....She took the day off today so she could come and see him and told the whole world about it. What a dumb person she is.

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Reply by Marymary

04 Jul 2016, 7:57 PM

Hi DJ 74:

Stay strong my sister. Just a friendly reminder what matters most is you are there to support your man and be there for him and sorry to be blunt but screw the rest of them. Others know who is there for him in reality and they know you love and care about him, she has to boast to make herself look good to others, you are just doing it period. They all know you love and care about him but like I say what matters most is you and him and he knows you love and care for him and you are there regardless. Deep down he knows this and appreciates it even though he may not say so all the time. His head space is so not good right now, he is battling for his own life so not everything may seem right to you but he is doing what he can do and maybe trying to make amends with others too part of the process for him. He loves and care for you and vice versa and that is what matters most - no one else but that.

It takes a real special person to be caregiver through all the trials and tribulations, you are that person in his life and he darn well knows that. So always know that in your heart, she is just
trying to make herself look good in others eyes. You don't have to boast for you are doing and everyone knows that. So take that to heart please.

Saying prayers you and him and sending positive energy your way. Hugs to you DJ

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Reply by DJ 74

04 Jul 2016, 8:07 PM

Yes caregiving is hard. I tend to drink beer to take the edge off and he doesn't mind but I feel so guilty that I do that in front of him. I feel guilt and shame for doing it. Is that normal? Am I a bad person for having beer?
I worked so hard on the house this weekend and all the other things that come with caregiving and he just sits there and builds lego. He says thank you, which is fine but I feel bad for him. Like what is he thinking? Is he thinking anything? Is he just being lazy and I'm being taken advantage of? I don't know if I'm over doing it with cleaning and hiding the beer I drink as who knows what people will think if there is a dust, a beer can on the counter. So much fear of being judge its driving me nuts.

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Reply by Marymary

04 Jul 2016, 11:06 PM

Hi DJ - you have to be more gentle with yourself. We humans are so critical of ourselves, especially women - we are natural nurturer's, we have the innate ability to put other people's feelings in front of our own. When You find yourself in this siutation that we are in - there is NO book or manual you go with it and have to deal with things most people do not have to deal with and find a way of coping through it all.

We automatically just do us women - we take over, we take care of and we deal with whatever comes our way. So you have a few beers big whoop - as long you are NOT drowning in it 24/7 or every single day to just to cope - so what. If you find yourself doing so everyday more often than not than you just need to have a good long talk with yourself.

When my son's dad was in ICU/HEU I would come home after being in hosptial for 6-8 hrs and open a can and drink it down just to relax a little bit lol. I would open a 2nd and I never got to drink that one cuz I would fall asleep, just was exhausted and tired but I never drank too much just in case an emergency came up or my son (16) had a situation to handle. When I took time to myself yes I did indulge alot but only when I knew all was being taken care of. Last time was May 21st, time before that Xmas then time before that was August. No didn't help but at that time it did for I was NOT thinking about anything - just having a time of it with NO cares or worries when I indulged but I also had someone else taking care of things so I could let losoe a little. I would advise who I was with I am goign to have a few and they are understanding and care taking of me if I inbibe with a few too many beers. I don't get falling down drunk or anything like that - god no. I just want to let loose beside doing the outdoors nature thing I just need to forget - NO i do not recommend it but to each his own you know.

So as long as you know what is too much that is what matters. You know better than anyone. I personally will have a beer or two with dinner but not more than that in case there happens to be an emergency - god I would never forgive myself ever if I couldn't handle or deal with a situation becasue I had too many beers. But that is me and my way of thinking of it.

You know already - sending you positive energy DJ74.

It sounds like you need to talk with him too, sound a touch bitter you are doing all and he is playing and not sharing with you. Don't be afraid to talk openly and share in a good kind and gently way. I think you are juding yourself not him judging you - like I say we are our own worst critics. Take a walk and clear your head and you'll know what it right for you .

Have a good dinner, good relaxing you and him time and have a chat. Take care

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Reply by Marymary

15 Aug 2016, 7:23 PM

Hi DJ - how are you holding up? Just thinking of you and haven't heard from you in a bit. I have been busy too, but know WE are all here for you - its the most hard/difficult thing you have ever dealt with in life for sure but that is what this forum is all about DJ.

Hope to hear from you and let us know ok. Hugs you

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Reply by DJ 74

15 Aug 2016, 7:42 PM

Hi Marymary. We had the results of the CT scan after 3 rounds of chemo today. They have decided its not bile duct cancer but stage 4 lung cancer. He has an unknown number of months to live. He had a blood transfusion last week as the chemo did the red cells in. We are scheduled for another 3 rounds of different chemo next week. He has to take B12 shots and folic acid so his kidneys don't shut down with the new chemo.
He lost 15lbs in 1.5 weeks. From 200lbs to 135lbs. He is a bag of bones.
He almost feel off the deck steps this morning on to the concrete but somehow the bbq caught his fall. I had a hard time holding my tears in but I did it.
I am on part time at work now so I'm home by lunch. He gets freaked out when I leave. He didn't eat for a week due to vomit, but his appetite is back up.
I am very numb. I just focus on being a caregiver and remember all the meds, appointments, and giving lots of few hugs and kisses. I love watching him and how methodical he has become with his illness and things he does. Its fascinating to watch an man deal with his own death.....I don't mean to be dark, as I mean it in the most lightness I can.
Thanks again for reaching out. How is your journey going?

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