recently diagnosed mother
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Janet – My husband is 58 years old and when he was diagnosed, they told us he was stage 4, too advanced for anything but palliative care. He underwent 3 rounds of chemo (6 treatments). They told him in August that he had about 90 days. We are at the 90 day point as of today and he is hanging in there. He is quite weak, sleeps a lot, is in bed most of the time, but on good days he can go out of the house for awhile. He eats although not so well at times. Today, for the first time, he fell twice just getting to the restroom and back. He says he is just weak. He has a pain patch but still gets some pain or even tenderness in his abdomen. Keep being an advocate for your mom and know that we are with you. Blessings, Susan
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
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
Jennifer, can’t believe i actually found someone from Calgary that’s cool! The appointment didn’t go as well as we thought. They can’t do much for her because she is too weak for chemo right now. The reason she is so weak though is because she has been in hospital fasting for the last 3 days. I explained this too him and he is going to see her again in 2 weeks too see if she is stronger. He stated that the chemo would only buy a few months for her though if she chose that route. I am wondering did they say that to you guys as well? Maybe that is just something they have to say to everyone in order to re-inforce reality which I can appreciate. If you’re dad was instructed the same and decided to try it regardless that sheds some light that it could help us more then we expect. I know everyone is different though. I’m glad to hear it is going so well with you and you’re dad. My mom does have the nursing assistance and homecare. She really likes it. If you’re dad becomes a little more open minded you’ll find it helpful for everyone. Especially the palliative nurses they have been so great.
If you have time keep me posted nice to chat with you
Take care
Jessica,
I am so sorry this disease took your husband from you, it is hard to hear of another person lost at such a young age.
We are a small bunch of people but I hope together we can make some progress against this disease and we will need everyone to do it so thanks for posting and visit often. The grief section is very helpful, we are one for all and all for one here.
Patty
Dear Jessica, welcome to our wonderful family and we are so very sorry about your husband, Michael. It is truly upsetting that we are getting so many young people with this disease and it breaks our hearts so, that something needs to be done!
I pray for you that all your wonderful memories of Michael will soon out weigh the memory of this disease. You sound like a wonderful wife and I am sure he is smiling down on you now and is very proud that you came aboard our site.
We are sending you many Prayers and thoughts and please feel free to come on when ever you want, you are now part of our family.I wanted to introduce myself to everyone going through this horrible disease. My name is Jessica and I lost my husband on October 16th 2010. My husband did not get sick until this past June and was officially diagnosed with cancer on August 20th which was his 36th birthday. After extensive doctors visits it was determined he had a Biliary cancer which was figured to be cholingiocarcinoma. My husband diseased was very progressed when they found it and he had no real fighting chance. Lucky for us his suffering was very short but long enough to realize how horrible this cancer is. I hope that doctors will someday find a way to stop this before it starts in order to save others like my husband. I wanted to share my experience with you in honor of my beloved husband Michael Scott Jenkins.
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
Hello everyone thanks for all your support youre so great! I don’t even know where to start to explain all that we have been through. First of all i’m from Canada, Calgary Alberta. The best cancer centre we have in the province is in my city it’s “Tom Baker Cancer Centre”. It is in high demand and due to the large population that must be why we had to wait. I’m thinking a lot of the reason for the delay might have been becaue she needed to be followed from the surgeon for a bit first because she was fresh post surgery and he probably didn’t want to send the referral until she was partially recovered from that. I just don’t understand why they didn’t send it right away as the waiting process is so long he could have kept following her in the meantime anyway. We had asked this and didn’t get much response on that. Also I asked the surgical team about speaking with the cancer centre about moving her up and they said it probably wouldn’t happen as there were some people ahead of her needing chemo before they’re surgeries which took priority. Her oncology visit is finally happening today but now she is so weak because she has been in hospital fasting for the past few days while waiting for procedures to try and adjust her tubes/drain bags which they have been messing around with for the past month!! I may have to go see her oncologist on my own
She currently has 2 metal stents and 2 drain bags. They have kept the bags in place because she has control to open and close the drains on these and once they take them away that control will be gone. It seems her body is not tolerating the clamping. She always gets symptoms as soon as they clamp her off. Until her body can tolerate that they don’t want to take the bags away. It is very obvious that aren’t sure what to do themselves they have been poking and prodding on her for quite some time now with no real plan of attack to tell us. Her surgeon seems to have vanished and never returns her calls. Now we only deal with residents on his team who take forever to get back to us. One of her drain tubes had a leak for the last little while and now it has fallen right out. She is sitting in hospital once again waiting to get that addressed, fasting and getting weaker and weaker every day. Once again a situation that could have been avoided if the surgeon would have returned the call and written up the order for the procedure ahead of time. To be quite frank her care has been totally unacceptable!! There is really no where else to go though and we don’t have much choice but to just try and get through it. The health care system here needs some serious addressing right now. Her illness came at a bad time. Things were much better a few years back with the system.
She is starting to get very emotional now and things are terrible, but i’m trying to tell myself that sometimes you have to hit rock bottom before things get better…….right??
thanks for everyones kind words
JanetHi Janet,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. My dads CC was also classed as inoperable when he was diagnosed back in 2008. I am glad that you have joined us all as you will get a load of support and help from us all, and please feel free to ask a load of questions and we will help if we can.
Is your mum taking anything for her vomitting? As Lainy has said to you there are a variey of meds that can be given to try and help with this and this is something that my dad suffered from a lot. He took a variety of and combinations of in order to try and get some help with this and some worked better than others.
I am also wondering why it has taken nearly 2 months you say for your mum to be seen by an onc. Can you not try and speed this up? And I am sure that members here would be able to give you a recommendation for one based on your location. Patty mentions PDT and that is something that my dad had, he never had surgery, radiation or chemo, just PDT. Here is a post I did about my dads experiences with it –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940
I know what you mean when you say that this situation doesn’t really seem real, I think that we all sort of felt like that at first. Having to deal with all of this and so much information in one go is tough to deal with, but you have done the right thing in coming here looking for help and support and that is what you will find here. Please keep coming back and let us know how your mum gets on.
My best wishes to you and your mum,
Gavin
Hi Janet,
Her symptoms are very similar to my soulmate who I unfortunately lost last Dec.
He did get chemo.
Hopefully your Mom will get chemo & respond well.
We will pray for her.
Wish her all the best.Take care
nkHello Janet,
Welcome, you have come to the right place for information and some really amazing people.
How long was your mother ill before she was diagnosed? Did they perform liver function tests? I would ask for copies of all the tests that were done. I find it sad that she had to ask for an ultrasound.
Where is your mother being treated? What is the reason for the long wait for an oncology appointment? If they are too busy and cannot see her in a reasonable amount of time then I think you need to look elsewhere and start getting more opinions.
If they say she is too weak for chemo, I would ask about PDT (photodynamic therapy). If you use the search function you will find some posts on this board about this treatment.
Patty
Hello Jaynus – we are all glad you joined us, you will find a lot of support here at this website. I agree with Lainy – if you could provide us your location maybe someone can recommend someplace to get a second opinion (at least for moving things along a bit quicker).
I’m still fairly new on this site as my partner was just diagnosed on August 30th. However, it’s been 2 months since his diagnosis – and he just started chemo…there are no guarantees if it helps or not since this cancer varies so much, but the protocal he is on has provided the most advancement based on recent studies.
I am curious as to why some people get external bile bags vs. a stent in the liver? I guess in your mother’s case since they thought they might do surgery they didn’t want to put in a stent. In Ben’s case – instead of opening him up for surgery, the did a less invasive laproscopy and discovered it was stage 4. Knowing that, they put in a metal stent in his liver (exactly two months ago – Aug. 30th) and it immediately helped drain the bile….he went from a bilirubin of 21 before surgery to his present state of .7 – and he feels great.
Anyway, I don’t know if the bile bag vs. a stent makes a difference, my guess is it’s also due to the placement of the tumor – but all of the above reinforces the idea that a second opinion at a good cancer center is essential. Write for questions if you need any help!
tom
Dear Jaynus, Welcome to our wonderful family, and yes unfortunately we have thousands of stories to tell. The first thing that jumps out at me is where is Mom being treated and have you had a second opinion? I would also call the doctor about the vomiting as there are meds she can take to control that. If we knew where you lived we ciuld give some suggestion on where else you may take her.
This is a very tough time but hang in and be strong and learn as much as you can about CC. Please keep us posted.Hi Janet,
My Mother was also past surgical intervention one year ago when they said she only had months, she is still with us. OK she is not too good right now but she is also 88 so percentage of symptems may be due to that fact. But don’t loose hope she may be with you for a long time yet. Thinking of you
Warm regards Frances
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