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hockeyma

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Posts posted by hockeyma


  1. Hi

    I just wanted to let you know that Gerald made his trip to his sugar shack the other day. A group of friends put him in his rocking chair and put that in a toboggan and pulled him up there - where he had a beer and a cigerette. After that we took him to the hospital for what we thought was his last journey. Well he is home now - and he is still with us. He is dropping more weight (probably 90 lbs now) and is confused a lot of the time. His ct scan came back and his brain met is 2x2.5 cm with a substantial amount of edema. He is having a hard time getting up the mucous and he is very very weak. I regret to say that it is - as our family doctor said - time for him to go home. His family is here from Newfoundland. Ger keeps hanging in there though. He is still eating a bit of pureed food and his heart is steady. I really thought that we could get out of this mess but the cancer was too much. I have hope - but I think the hope is now for him to go as pain free and quickly as possible. How long does this last. It feels like forever. Thanks for the support over the last few monthes. Heather


  2. It is too weird but then again it isn't. So many others have had the same stories. Gerald has deteriorated hugely in the last few days and definitely more so today and I hope that the remainder for his sake and ours are few. He is delusional 80 percent of his waking hours and we are using all time now to invite friends over to "converse" while he still can carry some sort of conversation. Today I went to the funeral home and did some pre-arrangements as when his family start to come from out east and west we will have a full house and it will be busy. Gerald's sister and I are going to keep him at home until he no longer realizes where he is. At that point we will probably no longer be able to manage and for the kids sake (and mine selfishly) it is easier for him to be at the hospital. Tomorrow his buddies are going to bundle him up and take him out to the back of our property by snow machine to his "sugar shack" that he and they boil maple syrup in and party in every year. You cannot value the importance of friends and family more at this point in time. This means so much right now I just pray he makes it to tomorrow - and how much he acknowledges or not, that it happens for him. I guess you really don't know how much you mean to people til something like this happens. Take care and I will let you know how it goes....Heather


  3. Just keep letting him have that dream and you never know what could happen. Sorry you are having such a rough time. I am glad he is taking pain meds now and the radiation will help with pain too. It helped Gerald alot. My husband is struggling right now and his sister is here from out East to help and spend time with him. It takes more than one person when things get rough so hopefully you have someone there who can help you. All the best. Heather


  4. Hello everyone. I guess Gerald and I are starting our real roller coaster journey now. After 1 week of breathing difficulty and nosebleeds and weakness...to the last couple of days - off balance -and yesterday and this morning very delusional and hallucinating - to now - quite alright. His chest xray showed progression and that was quite depressing for me (he knows nothing) Last night the nurse that comes daily figured that he should probably be admitted by Monday for good and that to keep an eye out for heart failure as he had many symptoms and does not look well at all. Rather sleepless night for me and for him a really great morning - "had a beer - smoked some cigerettes....tried to go in the garage for some butts that he left there and had breakfast downstairs in our "restaurant" with the guys from the job site"...yesterday he also met his two guardians - two indians with bandana's.....(I believe this as a true sign). Anyways to make a story short and not to ramble. I kind of believe it has gone to his brain again and/or that he is not going to be with us much longer. Maybe this is just my thinking but it is too wild. He isn't in much pain at all. And I keep giving him the tarceva on schedule cause you never know. I don't want him hospitalized while his sister and I can look after him here til closer to the time. So last night I was convinced this was it and now tonight I am thinking the opposite....that is the roller coaster we are on right now - anyone had similar experiences?

    Heather


  5. How much worse does it get or does it ever get any better? I know we are supposed to be positive and hope but.....I don't even know what to expect now. My husband is on tarceva 150mg - has been for 20 days. He has had a chest infection / shortness of breath/ extreme fatigue, weak, off balance, more weight loss and disoriented - and still no rash. Blood work is ok so it is not low red counts. Chest xray was not good. showing progression in left lung and more pleural fluid in the right. He is on dexamethesone now for inflamation. I know it has only been 20 days but I really think that this is not working. So this is a two folded question....if it isn't working and disease is progressing - how much pain (time) does he have to go through. Second question - anyone had any real turn around good stories with Tarceva - harsh side effects that turn around for the best. His sisters want to come up from out east and I think it is time too. Anyone have any suggestions I would appreciate. thanks for all being so understanding. I hate this disease. Heather


  6. Welcome ....we are from Canada too.

    My husband was told from our local oncologist that he would not qualify to do any radiation because it would be too dangerous....too much cancer. After bugging I got referral to Sunnybrook in Toronto. He had an appointment there and they said they could radiate but as chemo seemed to be working to his benefit to wait. Unfortunately the chemo stopped working and although stable my husband ran into complications and was hospitalized. We went back to Sunnybrook and he did get radiation - but it was termed as palliative. But it was radiation. It helped with his pain control and for awhile shortness of breath - but his eating has not been good as it has done some damage to his esophogus. So if you are in a smaller community push to see someone in a major center. Please private message me if you want and let me know where you are located and if there is any other support that I can help you with. In the mean time - all the best of luck with the chemo. Heather


  7. Danielle,

    I know how you feel. Today more than ever I feel very ripped off. I am home for the rest of the month and I see what a sad and cruel disease this is and wonder why him, why me, why the kids. So today is not a good day for me either. Today he got dizzy and fell and it scared me and dug another knife of realization into my skull. It is very hard to be optimistic when you feel like your world is falling out from under you. Then again - this is a roller coaster - today could be sooooo much better. I am going to try to take the good with the bad and pray and hope for the best. Heather


  8. Has anyone had this problem. Chewing food so much that when they go to swallow it - it won't go down and you gag...that is what my husband is experiencing right now. Sounds a bit like a mental block to me - but I not being the one - don't get it and it frustrates me. If he doesn't start to gain weight he will have to get a feeding tube they say.

    Ger had 5 days of radiation at the beginning of February. He had a hard time swallowing - then as that was starting to clear up and he was starting to eat solid foods again, he started tarceva (no rash yet - wish there was I guess) he got at the end of march a chest infection and shortness of breath and is on oxygen (normally) and nebulizer treatments. So now he is coughing up lots of mucous. I don't know if the mucous build up is causing this chew/gag problem or if it is the radiation still - or if it is a mental block. Anyone out there had problems with that. I was trying to get him on some better solid foods but he has no urge to eat - and we have been giving him boost drinks and boost juice and boost puddings plus soups and puree'd meals. I am really trying not to give up hope and be positive but it seems every time things start to turn around it all goes down hill again and it is very frustrating for me and for him. Thanks for listening, Heather


  9. Ditto, I am another groupie....I usually check min 3 times per day. The site is great and the people are great. I think we don't get the same sense of understanding from the people we physically interact with every day. Being able to communicate on this site allows me to feel like I am not alone. Heather


  10. We are going through this again right now. He could have a chest infection as well. My family doctor says the tumours in my husbands lungs are positioned to cause the breathing problem and as to why Gerald is short of breath and on oxygen...however - he has had to take antibiotics a few times now to get rid of that. Other possibility could be whatever type of chemo he is on could affect his breathing.

    Not alot of help but a suggestion to get checked for infection. Heather


  11. Well, turns out my husbands shortness of breath is mostly associated with a chest infection. So got a nebulizer for the home and the antibiotics and waiting the course of the weekend to see if that clears alot of it up. Oncologists advised that if the breathing does not get any better by Monday that he may be having some reaction to Tarceva and may need to stop for a few days. The biggest concern was perhaps of pulminary embolism as he had a huge nose bleed....yet no other signs other than the shortness of breath to go with it. Cancer is one h of a confusing disease sometimes. Just when you think things are getting a bit better something else wrong happens. Heather

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