My mums journey
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Hi Jan,
Apologies for the delay in getting back to you on this. Was really busy yesterday during the day and could not really write too much.
Yes you are right that this is a nightmare rollercoaster and to be honest I would say there is no right way to handle everything. What works for one person may not for the other etc. I guess that for my dad we were told straight from the off that his CC was inoperable and that treatments offered would only be palliative no matter what he decided to go for. He had to think about what he wanted with the time he had left and he chose the PDT as he felt it would give him a better chance of quality of life for that remaining time so maybe that helped him a lot with his thoughts and actions following diagnosis.
My mum had a pretty serious health condition as well, COPD and still does and perhaps that helped her deal with the news of my dad having a terminal illness. I would say that my mum accepted the news quite quickly that there was no cure for my dads CC and I did as well. Again, I would say that it comes down to each individual person and how they go about dealing with this sort of stuff but I so know that it is not easy to do no matter what way anyone handles it. No one is right or wrong in this but that doesn’t make it easier for you to deal with I know.
When my dad was diagnosed I needed to elarn everything that I could about CC and that is what led me here pretty quickly but again, I know that not everyone is like me in that aspect. My mum is certainly not like me and she didn’t want to know too much details or anything about all of this but she knew and never hid away from the fact that my dads CC was inoperable from diagnosis.
Perhaps your mums doctors at the hospice could take your dad aside sometime soon and have a heart to heart with him about everything and what is happening with your mum? Also, here on the site we have Dr Giles who maybe would be of help to you in the best way for you to handle this with your dad? If so he can be reached through this link –
http://cholangiocarcinoma.org/for-patients/ask-dr-giles/
I know he has helped many of the members here with dealing with a lot of the emotional side of things. I know that this is so hard for you Jan but trust me when I say this as I have been there that you are doing a great job in dealing with all of this so please do now knock yourself down with anything. You know we are all here for you as well. I hope some of that is helpful to you. And please do not feel guilty about anything Jan, you have nothing to feel guilty about at all.
Hugs,
Gavin
Hi Jan,
Gotta rush right now, but will answer your question in more detail either tonight or over the weekend. Hope that’s okay with you.
Hugs,
Gavin
Thank you Lainy and Marion.
I was reading Gavin’s story and again it emphasizes how we all have to face similar experiences.
I was wondering how Gavin addressed the facts of his dad’s illness with his Mum? My Dad will not hear anything relating to incurable, inoperable and hates the fact that mum is in the hospice but is pretending that they are offering a different type of care to palliative.
On the up side Mum had two stents placed in the duodenum and doctors seem happy. They have halved the meds in the syringe driver for anti nausea and have halved the steroids. Now we wait to see how Mum goes over next few days. At this stage all looking good and maybe home next week.
My Mum wants me to prepare my Dad , he does not want to hear it and to be honest nor do I. I believe my mum still has time and quality time but she sees each downturn as the end and we struggle to get her to realize she is well enough again to come home and she no longer needs a bed pan but could try the commode or better yet the toilet! I feel guilty pushing her when I know it is hard for her as she is no quitter and my heart breaks for my dad who will not understand my mums attitude as he wants to believe this will all go away.
So thanks be to God we have the above going on again and we will get Mum home.
I have to return to Australia in two weeks and I am terrified each time I leave but then I feel guilty for expecting the worst. What a nightmare roller coaster this is.
More next week once we know Mum is still responding well.Jan……you deserve a break and you received it. Hang in there, we are behind you all the way.
Hugs,
MarionDear Jan, sometimes a good cry really helps. I hate to say this but welcome to what we call our CC roller coaster ride. We are so sorry you had to get a ride on this coaster as it hardly compares to an amusement park! Sending good vibes across the water that Mum keeps on improving!
Hello
Mum had her procedure and two stents now in place. Not really got any info yet as she only came back from hospital this evening.
I did realize how alone we have felt on this journey and how we have fought every step of the way because when the hospice said a nurse would accompany Mum and stay with her all day and accompany her home…. I simply cried. For the first time on this journey someone else is in mums corner .
I did ask about the passing out and doctor says that is their next big issue, believes it may be blood pressure related and perhaps some of the other medications are causing the problem due to the prolonged inactivity. I think Mum has beta blockers for the afribrillation. Flecconide ?
Looks like so far Mum feeling much better and her sense of humor returning.
Thank you for thinking of us today, I was so scared.Jan……any explanation regarding her passing out? Hoping and wishing for everything to take an upswing following tomorrow’s procedure.
Hugs
MarionLainy and Marion thank you so much for replies.
Mum goes to hospital tomorrow to have stent in duodenum so I have high hopes. The feeling of constipation is related to inflammation in peritoneum so no actual constipation which Mum is happy about, no more movicol!
Mum has had one major vomiting bout since the anti nausea driver and hopefully stent will mean driver can go too.
Outside of the obvious , really worried that mum has become very immobile and bed ridden as she keeps passing out when she tries to move. How do we get Mum marginally active again? We are waiting till stent is done so the discomfort may be gone but mum now scared to sit up or get out of bed in case she passes out.
Mum was cheeky and joking with nursing staff today and doling out our instructions for the day and we were thrilled!
A lot of hope pinned on tomorrow.
JanThank you so much for the support, we have gone from a lonely place with no support to amazing support at the hospice. Still hope that Mum will come home.
They say no actual blockage or constipation but a lot of pressure due to tumor. Next week they will put a stent in the duodenum and believe it will give Mum relief from the continual constipated feeling and hopefully stop the awful vomiting. Like Daisy I feel there are some things I will not ask in front of my mum, I want her to feel positivity . Perhaps I am in denial but mum does well when she has action ahead . Will let you know how and when stent goes. Today was a good day for Mum.Jan, I am so very sorry to read about your loving Mum. I would think the most important thing now is to try and get her to a good comfort level. Wish I could give you an answer to where you are in this but I do have a list of 10 Signs the journey is near an end. If you would like it please send me an email through this site and I will send it to you. There are no words that can help when we watch a loved one suffer like this. Be very strong and I agree that there could be a change for the better once they put the stents in. We try to stay realistically optimistic. Please do keep us informed of Mum’s condition as we truly care.
Jan…..I don’t think it’s good to look back without knowing for sure what else could have been done and whether anything would have changed the course of this disease. The good in all is that your Mum is tended to by a fantastic team of caring people.
Most likely the scan will reveal a blockage in her intestinal track, which in turn causes consistent vomiting. You mentioned an appointment for next week’s stent procedure. Is it possible to move this up to an earlier date? Is she able to hold down liquids? If not so, what are the odds of having her admitted to the hospital NOW?Hugs,
MarionHello All.
I did write a novel but lucky for all of us I have not yet worked out how to post.
My 77 year old Mum, most wonderful woman, was diagnosed with CC in October 2015 after hospitalization with jaundice in Kent England.
Stent inserted in bile duct, stent collapsed and caused ulcer, steel stent inserted.
During this hospitalization Mum was offered surgery, then told nothing could be done go home…. No reason no nothing.
Once we recovered from the shock I got on the phone and got appointment for re assessment.
In December we finally saw an oncologist and mum scheduled for Gemcitabine. Family sigh of relief … We are doing something.
January Mum starts chemo once a week via picc line. Mum does very well on chemo but does spend three days a week in hospital with temperatures…. Will not discuss the rigmarole of spending four hours a time in waiting room at A and E.
After 8 weeks Mum has review with oncologist and is told chemo not working, tumor has spread and markers are up. Mum quite weak so we told come back for re eval in a month .
Oedema of legs very bad.
March 2016…. Mum has two bouts of sepsis
April 2016 …. Oncologist declares he can do no more bye bye. Literally.
April 2016 …. Mum has scan as she feels continually constipated and some discomfort. Phone GP two weeks later, no results come in two more weeks………. Are you kidding my mum has cancer we cannot stuff around like this?
May 2016….. Results of scan were inconclusive because cannot use contrast due to mums kidney function. Mum still very uncomfortable so given movicol
June 2016…. Mum now very uncomfortable still feels constipated and now vomiting too. Mum refuses to allow us to call hospital, will just see district nurse.
July 2016……. Vomiting is daily, horrible dark brown and copious, no bowel movements. Hospice becomes involved and suddenly someone is helping us. Mum is given anti nausea driver , steroids and booked for new scan.
Scan results already back…. Tumor has spread to peritoneum, stomach and maybe liver….. Hard to have these brutal discussions in front of Mum and dad . Mum now booked to have stent in stomach next week. She also has fluid retention in stomach.
Today was bad for Mum as despite the driver she was vomiting again every time she moved to use the commode. She is on cyclizine as it makes her less spaced out.
I read of other journeys and you all seem so in control and part of a team . We seem to be shuttling around the NHS and handed off to the next phase.
Now that we are with hospice , although we do not want to be there , we do feel the love as they say, and this team is moving mountains to help my mum..
Where are we on this journey? I feel we should have been able to do more but you trust the experts.
Thank you all for sharing,.
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