andie
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Dear DD,
I’m so sorry to hear the news about your mom. If they have offered radiation theraphy they must think there is a chance of keeping the brain mets under control.
How is your Mom in herself? Is she in pain, jaundiced, confused etc?
As for pallative care, that is what my Dad recieves, at the moment this just involves the DN coming to the house on a Monday to check his BP, temp and external drain. When and if the time comes they will sort out pain relief etc.
I understand this must be a very hard time for you, as the unknown is often worse than the diagnosis. This CC journey is certainly a rollercoaster ride.
I would write your questions down and make an appointment with your Moms doctor/specialist, so you have a clearer picture on what is happening and why they plan to treat with radiation etc.
Keep strong.
Hugs
Andrea
Hi and welcome to our cc family.
I’m so glad your Dad is feeling well, that is always a good sign.
Your Dads attitude sounds great, and I believe a positive attitude really helps. My Dad was diagnosed in April after 2 months of painless jaundice, unfortunately it is inoperable and chemo is not an option due to high bilirubin levels. Despite this Dad is determined to put up a good fight.
I will keep everything crossed for a good scan result in December. My Dad adores my son and when he was born 9 years ago my Dad was recovering from colon cancer, I really believe my sons birth made my Dad fight extra hard, and i’m sure your Dad will too.
Best wishes
Andrea
My Dad was also diagnosed in April initially via results of the CT scan. His only symptom was painless jaundice. He then had a biopsy in May which confirmed it was CC. He was asked to go in especially for his biopsy which was a day case, can’t remember what the actual procedure was called but it was similar to the ERCP procedure, ie it was done by going down the throat.
Reading my Dads note now, they also at one point thought it could be a secondary from bowel cancer (he had bowel cancer 9 years ago). It wasn’t but I think they wanted to make sure as to know what chemo regime to start.
Hi Daddylove,
Welcome to our cc family. My Dad was diagnosed with inoperable CC in April 2010. Despite 3 stents and an external drain Dad hasn’t had any chemo as his bilirubin is too high. September we were told there was nothing else they could do and Dad has 3-4 months.
Guilt is with me everyday. We are looking at second opinions, one including Cyberknife. I wonder if I had pushed the cyberknife or second opinion option more then we might not be at this terminal stage. At the time Dad thought he’d get Chemo so was happy with the treatment he was getting and I had to accept that decision, if we’d have known at the beginning chemo wouldn’t have been an option then we would have acted faster on the second opinions. It is all if’s and buts.
I think Tom puts it into words perfectly, it is an emotional rollercoaster and there is no perfect answer.
Like your Dad, mine is doing really well considering, and we are grateful everyday for that. He still cares for himself, eats, though smaller portions and little and oftern, and luckily is in no pain. He has also suffered from a “full” feeling but with trial and error through food we seem to be getting it under control. it is definatley due to digestion. Perhaps your Dads doctor could prescribe something for it like lactalose, or if he wants to keep to natural remedies, pear juice has been mentioned.
Please keep coming back to us, from experience the people on this site have kept me sane the last 7 months, and we really can understand what you are going through.
Take care, and best wishes to you, your Dad and family.
Andrea
Hi Lynn,
First welcome to our cc family. My Dad was diagnosed April 2010, with inoperable CC. Chemo was planned but never given due to high bilirubin levels, despite 3 stents and an external drain fitted.
My Dad now has to be careful about what medication, if needed, he takes, due to the liver being unable to break it down. I think that this is a good chance what is causing your Dads dizziness.
I’m so pleased to MRI scan was clear. Positive thinking is the way to go, my Dad has remained positive, and even now with his terminal diagnosis that was given in September, he is refusing to give up. He really does amaze me.
Please let us know how your Dad gets on.
Sending best wishes your way
Andrea
Hi Stacey,
My Dad also 62, was diagnosed April 2010, unfortunatley chemo was never given due to Dads bilirubin being too high, despite 3 stents and now an external drain. I know it’s not the same as your Dad but my Dad is now on pallative care as there is nothing else they can do for him.
He has a District Nurse come once a week to check his BP, temp and also dress and change his external drain. My Dad is still able to care for himself, still eats, though smaller meals, and is luckily in no pain. Dad therefore doesn’t need hospice care or feels like he needs hospice at home just yet. The time will eventually come but we take one day at a time.
Does anyone come to see your Dad at home? If not perhaps this is what they are going to arrange. Hopefully your Dad will recover from all his set backs to enable chemo to take place.
Best wishes to you and your Dad, and I hope he is out of hospital soon.
Andrea
Just noticed marion as posted a link about pallative care in the “supportive, pallative and hospice” section of the forum.
marions wrote:Jemima….I am confused also. Primary on pancreas is “pancreatic cancer” at least that is how I understand it. So where is the Klatskin fitting in? Or, does he mean that CC has metastasized to the pancreas?Did your Mom have a biopsy? I may be wrong but if the pancreas was the primary cancer wouldn’t the biopsy show this. My friends mom had ovarian cancer that was first found in the bowel, when they took a biopsy that is when they realised it was a secondary in the bowel and the primary was in fact ovarian.
Hi Jemima,
I can understand your frustration. Simple questions that should be so easy to answer, aren’t being.
Surely they should compare how much the tumor has shrunk, even if it was for pallative reasons it would still be nice to know if there had been any change. BUT like you have said surgery could perhaps be an option if it has.
As for them thinking the primary is in the pancreas, well thinking is not good enough, they really should know. I’m sorry I can’t help with this, hopefully someone else can. Perhaps you could write all your questions down and arrange an appointment with your Moms consultant. From past experience Oncologists just seem to be in their own ‘treatment’ bubble and I think they would admit for more in depth answers the consultant would probably be better to talk to. That is just talking from experience with Dads oncologist though, he didn’t even know the name of Dads tumor position!
The good news is that the chemo is continuing so they must think it’s working, we were told they wouldn’t continue if they didn’t think it was working. Unfortunatley we never got to find out this.
I hope you get your answers soon, and I hope your Mom continues to cope well with the chemo.
Hugs
Andrea
Jemima wrote:As for the babies…well I have four girls. The first was good as gold so we thought baby number 2 would be terrible, and then number 3, and then number 4……but they all slept well, fed well, and played well. However, the teenage years I am SO not looking forward to. The eldest is 8 and we can see small glimpses already of what we have in store !best wishes
Jemima
How lovely four girls. You will always have a shopping partner. My son will only come with me now if the promise of a cookie break is an option! My son is 9 and I can already see small glimpses of the teenage years too. Looking back he has been an angel really, it’s just now his halo seems to be slightly falling lol
Best wishes to you all
Thanks all.
We were told Dads bilirubin level was rising on average 5 per day. Which is how I have worked out that it may be in the 400s.
He is very day glow yellow but has no itching or other symptoms, apart from eating less.
Dad has now ordered Ensure drinks to help give him extra nutrients, he only likes the juice flavour. Hopefully these will help him.
Kate, I will ask about creon, thanks.
Jen, our Dads are fighters and positive thinking is the way to go. I’m hoping Dad is still around in June after our florida trip, as he so wanted to hear all about it, and if it’s up to my Dad then I know he will fight tooth and nail to still be here.
Now onto the one child policy. I had a terrible pregnancy, 9 months of sickness and hospital admissions, which put me off having anymore. Mainly due to how would I cope looking after my son if I had the same sort of pregnancy. Luckily our son slept well once he hit 3 months of age, apart from the teething stage, but my those 12 weeks were tough lol. We just seemed to settle into our own little bubble and we decided we would stick with one. This allowed me to work part time, working hours that still lets me take and fetch him from school and attend class assemblies etc. He has lots of friends but I do often wonder if we should have had another, perhaps then he would argue with them instead of me! My cousin had my goddaughter the same time I had my son, and I must admit she was an angel from day one, but her little sister is the total opposite. My cousin said if she’s had her first there wouldn’t be a second lol!
Hi Marion,
That’s what I thought. Some bile must be flowing which is good to hear.
I think you have got me mixed up with Jen and her sister though, (our stories are very similar) as far as I know I’m not expecting another child, the one I’ve got is more than enough lol!
Thanks again for your reply,
Best wishes
Andrea
Dear Varun
I’m so sorry to hear that your Mom has passed on. My thoughts are with you and your family at this difficult time.
Andrea
Hi Jen,
I have sent a friend request, I hope it was to the right Jennifer!
Christmas is getting closer, and yes while it will be tough we are determined to make it a special one with lots of laughter. Dad seems to be doing well the last few days, I just hope he will be well enough for Christmas day. We have always gone to my nans but i’m not sure what will happen this year. Hopefully Dad will be well enough for us to drive him there, even if it’s just to have dinner with us, then we can go back to mom and dads for a few hours instead of them coming back to ours. No photos in our house though, Dad is consious of his appearence, he is really yellow now and won’t want his photo taken. This will be hard but I will respect his wishes. I’ve got lots of photos before he started to be ill and I think that’s how he wants us to remember him.
Take care, Love to you and your family
slittle1127 wrote:Yes, Lainy is all that has been shared (in my experience). I have appreciated you so much and all your encouragement and open sharing. You have been a great example to me and I appreciate you so much. Thanks to this board I feel I have another family there to support me and get me through. Thanks to Lainy, Marion, Gavin, and so many others. Blessings, SusanYou have taken the words right out of my mouth Susan, that is exactly how I feel x
