jennifers
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I’ve been wondering about you as well Rick – haven’t seen your name pop up in a while. Sorry to hear your symptoms haven’t subsided at all – I hope you are able to find some relief soon!
Jen
Hi Janet! Were you as surprised to look out your window this morning as I was? Getting downtown was a nightmare this morning! People seem to forget how to drive the second it snows!
I’m glad your Mom isn’t experiencing much change right now, that is really wonderful! I hope the MRI goes well and doesn’t show change either! It’s good that she has energy – the more she’s up and moving around the better she will continue to feel,and the more energy she will continue to have.
As much as I’d love for Dad to try accupuncture or something similar, I would have to drag him by his feet to get him there – ha ha. Not something he’d be willing to try, I’m afraid. His pain meds are seeming to keep everything pretty level… he will take something if he has breakthrough pain, which is working for him. As far as his diet goes, we honestly give him whatever he is craving. He eats so little now that if he wants a burger from somewhere then that is what he gets. He has been craving caesar salad lately which is funny, since salad isn’t something he’s EVER craved in his life! Not the healthiest choice, but at this point, having him eat a lot of calories and extra fat isn’t just allowed, it’s encouraged!
I hope you and your family are doing well. Are you finding that you are getting a bit more support now that your Mom has an oncologist? Dad has Dr. Lupichuk and she’s wonderful with him… a really really great doctor.
Talk to you soon (better get back to work)!
Jen
Andrea – I think it’s so wrong for doctors to give a time frame… how are they to know how long someone will fight? I would have to say that his bile is draining, at least to some extent. I hope, along with everyone else, that he has much MUCH longer then he was given! He sounds like he is doing really great! So glad to hear he is not in pain, and still able to eat small amounts. Dad drinks a boost (with extra calories) every day to help him get a bit of extra nutrients, and try to help keep his weight steady.
I’m also loving (and giggling at) the one child policy conversation! My daughter (who was actually Dad’s first grandchild) was a dream as well. She has also helped us all through the last 9 months, so I know what you mean Kate! She’s 14 months, and we want a second eventually too… I don’t know if I could handle one that didn’t sleep after having Katelyn, who was sleeping through the night almost immediately! My sister (due in January) is having a boy – my Dad’s first Grandson. He WILL be there to hold him – I’ve decided I can’t continue sit and wonder IF it will happen, I am just going to believe that it will. He won’t give in before then, and hopefully not anytime soon AFTER he’s born either!
Jen
Thanks Lainy – we have a few shots of the bench from the contractor, but I’ll figure out a way to post some once we go out with Dad and get a few pictures of our own. Just waiting for the plaque to arrive! I hope you have a wonderful Thanksgiving – the menu sounds wonderful, and you’ll be surrounded by loved ones, so I don’t know how it could be anything BUT wonderful!
Andrea – I think of you and your Dad often too… we are definitely in the same place right now, I think. Christmas will be tough, but we both have to work hard to make it a good one with only positive memories for ourselves and our kids… there will be non-stop picture taking in our household, that’s for sure!
I would love to add you to facebook, just need a last name or e-mail address to search you out – or you can find me… Jennifer Sadler, dymond_jennifer@hotmail.com.
I’m looking forward to seeing those recipes! Canadian Thanksgiving was last month, but I could already go for another feast… looks like I’ll have to wait until Christmas though!
Lainy, so glad Teddy is enjoying the bed, and that his pain is so well controlled.
Thinking of you both often…
Jen
I’m sorry to hear of your Dad’s passing Pam, but so thankful for you that it was peaceful. He was lucky to have you by his side.
Thoughts and prayers and with you and your family.
Jen
Hi David – just wanted to let you know that Dad got a bit (and sometimes more then a bit) cranky when he first started chemo as well. I think the biggest part of it was that it was a bit scary to see such a different attitude in someone usually so positive. All it took was for someone to tell him to make him realize it and it hasn’t happened as much since (although we really do try to understand when it DOES happen). You have a lot on your plate, and have just as much a right to have your “moments” as the rest of us do!!
I hope the chemo helps and you are able to beat this monster a second time. Thoughts and prayers going out to you and your family!
Jen
Hi Janet,
We had Dr. Sutherland, but boy our stories are sure similar. We definitely saw the residents more once they decided surgery was not an option (they didn’t even open Dad up… I’ve always wondered why that was, but no point trying to find the answer now). I still think they should have forwarded your Mom’s file to get her set up with an oncologist right away, but like you said, it’s in the past.
Hope you are doing okay.
Jen
Janet – out of curiousity, who was the surgeon? Mom just reminded me that the exact same thing happened to Dad — I forgot all about it, but the surgeon wasn’t going to bother referring Dad to the Tom Baker after diagnosis and when they decided he was stage 4…. wondering if it’s the same guy. Definitely not my favourite person.
Hope you and your Mom are doing okay.
Jen
I have nothing to add but to let you know that my prayers and warmest thoughts are going to you and Teddy right now. I hope and pray his pain can be kept under control…
Jen
Janet,
They did tell Dad that the chemo was palliative, and that it helps for some and not so much for others. He was willing to give it a try if it meant even that chance that it would give him a few extra months. He tolerated it fairly well for the most part (a few bad days right after, but not enough for him to stop). They did another scan after the chemo was done and there had been growth and it has also spread to the lungs, but I don’t think he regrets doing it. He has another scan in a few weeks so we’ll see if the chemo was actually helping to slow it down or not. He isn’t doing as well now… he’s lost a lot of weight, and although I think the pain is controlled, he is on both oxycontin and oxycodone, so I imagine if he wasn’t on both of them it could be a lot worse. He doesn’t eat much… a few bites at a time is all he can handle, but does have boost (the one with extra calories) once or twice a day to try to get some nutrition.
I am so sorry that she is weak from fasting… because they did the EXACT same thing to Dad I know how you are feeling about it – it made me so angry, and remember venting on this site every day about what was going on.
Dad will eventually allow the nurses to come – right now he’s still able to get up and do everything on his own, and I think for the time being he prefers that, which is fine. I know it’s a hard thing, but Dad has already made plans for the end… he’s planned and paid for the funeral, and finished things around the house the he doesn’t want Mom to have to deal with afterwords. He is really focusing on making sure she is going to be okay afterwords – I think it helps him, even though it is emotional for us all. Right now our big goal for him is to make it until January to meet my sisters baby… it seemed so far away, and now it’s only a few months so we are hopeful for another Christmas and the chance for him to meet and make some memories with his new Grandbaby.
Feel free to contact me anytime – you can e-mail me or find me on here (I am on the site daily). It’s nice to have people who understand exactly what you are going through. I’m here if you need to talk.Jen
Janet – I’m in Calgary too!! I don’t understand at all how she wasn’t set up with someone immediately following the surgery, it makes no sense to me. I really hope your appointment goes well today and that you get some comfort finally having an oncologist to call when you are concerned – it has made a big difference for Dad. Our parents are about the same age as well — Dad will be 60 in February.
Dad was diagnosed in late January, and I’m sure by February he had his first appointment with his oncologist. He is also Stage 4, and surgery was not an option for him either. He started palliative chemo soon afterwords, and although we thought we only had a few months with him, he’s still here with us, and we are hopeful for another Christmas and the chance for him to meet his first Grandson when he is due in January.
We have had some issues with the system as well. A few months back Dad was in the hospital without a room for days, and they kept telling him he was going to be having procedures and couldn’t eat… then it wouldn’t be done. He had lost so much weight already that we were furious they were making him fast for a full day just to have nothing done. It’s a hard thing to deal with, and I understand your frustration. Does your Mom have a nurse that comes to the house to check on her? If she has not been set up with that yet, ask the oncologist about it. The nurse can help keep the drain clean, etc. which can be a big help. Dad refuses to use the service, but he knows it’s there when the time comes and he finds he needs them.
I’m sorry for what you are going through – it’s stressful, and exhausting, but I’ve learned that the only way to get through it (from some incredible, kind and understanding people on this site), is to be thankful for every second that you have with your Mom. Make all the memories you can, and try to be glad for the extra time you’ve been given. It’s hard, but eventually it does help a little bit.
Thinking of you and hoping the appointment goes well today. The oncologist will hopefully ensure the drains get addressed. Dad has had external bags since diagnosis… he actually prefers them – I think there is something comforting to him when he actually sees the bile draining. He knows something is going on when it starts to get clogged.
Let us know how the appointment goes.
Jen
I am at a loss of words right now Kris, but know that I am thinking and praying for you and your family every day, hoping that you find something that works, and peace in the decisions you make. You deserved to have a little cry, and I’m glad your sister was there for you.
Thinking of you always.
Jen
Katelyn is a lot younger – almost 14 months, and she’s not at the point where she needs him to get down and play with her (as long as SOMEONE will)! Because Dad lays down for most of the time we are there now (in his spot on the couch), this is how she is used to seeing him. It’s really sweet, because she will often quietly walk over and stand next to him when he’s sleeping and just stare at him. I should really take a picture of it, actually. He will have her sitting up on the couch with him and play peek-a-boo and stuff, but she’s too young to understand that it’s not normal.
We also use pictures a lot. Katelyn has her own little photo album that she carries around with her, and she’ll bring it to us so we can look through it.
I’m sorry for what you are going through – it’s such a tough thing and I think it would be a lot harder for me if Katelyn was old enough to understand being sick… I don’t know how I would tell her that Papa isn’t well.
Andie – I think Dad had also had sad moments when he realizes what he’ll miss out on, and I honestly think that is the thing that I have the hardest time dealing with…. it’s so hard.Sending warm thoughts and love to you both.
Jen
