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Reply by Marymary

15 Aug 2016, 8:23 PM

Hi DJ - sorry about this diagnosis, hard to take in I'm sure. Sounds like you are taking everything in stride now abit better than you were is what I meant.

It's hard to see someone go from that weight to down so low., my son's dad went from 209 to 136-139lbs and now he's back up to 166lbs but that is only because now he is having thyroid problems which goes from one extreme to another, have to keep a close eye on that and now we are awaiting a CT scan on Wed. to determine this HARD lump he has on right side of neck, they (dr's) think it is just calcified bones but have to wait for scan to determine., same side where his radiation was pin pointed. Seems strange to me not dr's but calcified bones in the jaw bones I'm assuming just weird crap coming up this year, which like I say I'm assuming normal for his type of cancer., he's had a few incidences where his food has landed in his sinus's (weird) but they say can happen., so we're just going with whatever they say. We freak out a little (both of us) with these incidences, they say his throat still looks like ground hamburger and it is inflamed still and it has been 1 yr and 1 months since his treament has been complete.
He overall goes with today and doesn't want to discuss or chat about his condition or wherever it is going to go. One day he's talking about 10-20 yrs from now & the next he's talking about any doctors visit can change what is going on with him., he's up and down just like his body, so it seems. He has been out socializing more than he ever has, which is weird too., but I encouraged that and well I might have created a monster there lol. Good for him to get out and he has just taken up biking 2-3 times a week which is good. He wants to go do stuff so it seems now which I find different, don't get me wrong I think it's great but at same time so different from who he really is but then again he is not the same person now - is he.

He has gone to dr's 3 times byself and has done some things differently since then I went ot the last one but the 3 before he went by himself and he's spending more money, imbibing, doing things he normally wouldn't before at the beginning it freaked me out but now I still question every now and again but more curious than anything else. He is doing ok mentally mind you which is a good thing but then again does not want to discuss his health period he does not care to go there, but at the same time will mention things when they come up like the lump on neck etc. when he is concerned. Which is good so just going with the flow now.

I'm trying to find work and getting beyond frustrated with it all., I have never had a hard time getting a job but now it is just not happening., part time 25-35 hrs per wk would be good but yes that is really bothering me but still trying to stay positive in light of it all.

I need income coming in for me and that is difficult for me. BUt one day at a time. I will get there - where I am meant to be.

Take care and let us know how you are dealing with it all ok. We are here for you ok. hugs

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Reply by KathCull_admin

17 Aug 2016, 4:26 PM

Good morning from sunny Manitoba.

A member Cherel33 started the thread Caregiver living with husband's denial . Could I ask you Marymary and DJ74 to consider responding to her posts?

Thanks for thinking about it.
Katherine

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Reply by KathCull_admin

18 Sep 2016, 4:08 PM

Hi DJ 74 and Marymary
Just wondering how both of you are today. It's kind of a gloomy day here but the lovely tree colours brighten up the street even when the sky is grey.

Mary have you been able to get more work? DJ 74 how have things been for you? As you said to Mary - how is the journey for you?

Take care
Katherine

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Reply by DJ 74

19 Sep 2016, 1:58 PM

Good day. I'm heart broken as Will past away on August 29th at 2:10 in the morning. He had lost 30lbs in 2 weeks, was vomiting every day all day. No food would stay down. No water would stay down. He went to the hospital in ambulance on the 28th and they admitted him. He was vomiting poop as his intestines were all blocked from the cancer on the intestinal wall within his abdomen. He was not even making sense most of the time. I left him with a list of stuf that he wanted at 11:30pm and got a call that he pasted away after vomiting 3 litres of poop vomit.
The day before the hospital we went on a drive, and did some errands and stuff, we even watched a movie. During the night he became very aggitated, and by the next morning he wanted to go to hospital. When I arrived at the hospital the Dr was asking if he wanted DNR, and he said yes. I was so shocked. I hate cancer. I don't think Tom Baker Cancer center did a good job. I feel lied to, I feel Will was a guinea pig for the Dr and his interns.

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Reply by KathCull_admin

13 Nov 2016, 12:42 AM

Dear DJ 74
When someone we love passes away it is very hard - even more so when we feel cheated or lied to. I know that nothing I say can take away how you feel, but I am sorry DJ 74 - sorry that this was Will's experience and that this is what you will remember.

This is not the time, but perhaps down the road you might be able to speak to someone at the cancer centre about how you feel. It won't change what has happened but maybe it will be of some help to you.

I wanted to introduce you to some other members in the community who have experienced grief and loss as well. Kirstie started Feel like I am losing my mind

Thinking of you this evening DJ 74.

Katherine

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Reply by Marymary

08 Dec 2016, 6:08 PM

Hi DJ 74 - just wondering how you are? I have NOT been on here much and just saw the posting and I am so sorry for your loss - I sincerely hope you are dealing with things alright. I know words do not do anything when you are grieving but just want to let you know we are thinking of you.

Hope you send a quick message and let us know you are ok. Hugs mary

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Reply by DJ 74

08 Dec 2016, 6:26 PM

Thanks fo asking Marymary. I'm well. I think my griefing process mostly happened when he was dying. I was mad at the Tom Baker Cancer Center, and his Dr as they really didn't let us know what was going on, and the little time we had together. I'm also mad at him for not really letting me know what he was feeling. I'm still mad at him....my guy. He is in a better place. He was not him when he was around. Cancer really sucks, I would not wish it on any one.
How are you doing?

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Reply by Marymary

28 Dec 2016, 8:42 PM

Hi - thanks for asking. I hope your ok, Xmas must have been a real difficult time for you, I'm sure you found some way to endure though. Hope it wasnt too bad for you.

then again to each his own a friend of mine lost her hubby in sept to cancer an its weird but she said she has felt nothing but relief, no stress no tension, no hospitals, no dr's, no more worrying and being so overly concerned and she is ok with it which is good. Like she said she was grieving mourning while he was sicjkfor 1.5 yrs so she figures she dealt with a lot during those times. With her it is the relaxation part which she is so enjoying, she didnt reallize how much tension, stress she had until after his burial/service, then it hit her. So yes to each their own.

As for us we are ok, looking forward to the NY with hopes it brings in some really good new energy to us. Some new perspective, maybe. Not sure how that come to be but need it for some reason. It was a great relaxing enjoyable xmas though.

Weird new way of looking at things I think is what I mean, we all know it will not change his diagnosis it will never get better period, for it is inoperable Stage 4B throat cancer. He's coughing a lot more since beginning of Dec only when he eats, our son first noticed @ breakfast & we talked to him about it an then he got all cranky an told us we are imagining it, its the same.

Anytime we try to talk to him about how he's feeling, he says fine or alright, that is it. He only tells us something when it gets real bad an he cant take it anymore. so frustrating for all concerned.

I'm not allowed to go to dr's with him anymore, his choice, its been since last spring I was at one. Our son came too, so he could see what & how his dad is at dr's office. Not saying anything period is what he does. He'll tell me nite before or when he walking out the door. He doesnt like that I tell the dr's the real truth of what we see an know, he denies right in front of us. The dr's look at him an basically talk without saying nothing so we feel he told them something like not to share info unless he says its ok, quite obvious to us anyway.

So why bother, our son states it makes no difference mom it is what it is., we know an he's not helping himself by not telling dr's things so why should we bother. We both have gotten to that point, I just keep a journal. His life, his free will. It is not that we dont love or care but after 1 yr of it why should we get all stressed an worried when he does not want the dr's to know whats really goiing on. We've had enough of it that's all.

I'll write out questions every now & again an tell him he better come home with the answers an he does.

I dont even ask him anymore how he is feeling - fine is not an answer. He now is going for kidney specialist had a scan & has to go see specialist in Jan. No reason why all of sudden his kidney is so prominent problem - its just says routine to see how its going he says - ya right. Whatever? See what I mean - frustrating. So, but our stress is more important so my son an me will deal with what we can an leave the rest, for our own health incl mental health we have to.

Take care an leave message on how your doing ok? sending you positive energy

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Reply by DJ 74

28 Dec 2016, 8:51 PM

Hello again. Xmas was okay. I suffer from anxiety so just keep giving me wine and I'll smile all you want family! I don't like xmas very much, drains the hell out of me. But I like wine ;)
Yes as i read your post here, i start to see that my guy too was similar to yours, he just wouldnt say how he was really, wouldn't communicate with the Drs I did it all at all the appointments. And i can understand how frustrated you are, on top of that you can't go to his appointments. Your son is right, there aint a lot you can do about it. Just go along with it, and hope he appreciates you and what you are going thru.
Your friend too I can understand, as it is for a relief now and has been for a while. Its just me, my life now and I don't have to freak out about appointments. Sounds mean to the outside world but until you have ever been a care giver to a dying person, I aint gonna listen to their oppinoins.
Anyway. Happy New Year to you and I hope it comes with some fun times...

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Reply by Wingman

31 Dec 2016, 2:45 AM

Good Evening.

I read your posts, and while different, it is similar.

It is difficult to be angry or frustrated at those we have lost. I lost my best friend in August. If I'm being honest......4 months later there is a distinct part of me that doesn't believe it actually happened. It was a solid battle after a 2 year terminal dx.......but it was....indeed that. Her denial left conversations unsaid....left peace denied...and is for me, haunting and regrettful in some ways. I hope that in time I wil be able to recognize that it was her way, and that I stood strong in my role to be supportive, and understanding, and unselfish.

but that time has not come yet.

A strange holiday season indeed. She was my friend....simply that. My best friend.

She had no family, so the decisions and the procedures and the end of life care was mine to give. I did so...it helped me in my process......i think.

my heart aches for those who are left out of the procedure and process of understanding...and being knowledgable and being involved. I guess it is both a blessing and a curse...depending on your perspective.

Me, I have tried to keep busy through the holiday season, although the role of not being needed does weight heavily.

It is a difficult cross to bear. I wish for you strenght....I wish for you clarity......I wish for you peace.

Thoughts to those in difficult times.

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