My Mom
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Hello Sharon!! I’d like to welcome you, too – although I’m chipping in rather late. You all seem to be coping very well indeed with this rollercoaster you’ve been catapulted onto. I’m sending lots of good wishes for your mum & for the rest of Team-Marian.
All the very best
JuliaSorry. I am a little late in welcoming you to the site. Sorry you had to find us, but if you are dealing with cc, there is no better place to be.
We are very supportive of each other so if you have specific questions, please ask. And, our collective shoulders are big enough for you to share all your problems, worries, or venting.
Kris
Thank you all for your warm welcome. The last 3 months have been somewhat surreal.
I am amazed at how fast this has all happened. While it felt like this disease came out of nowhere, looking back we (my sibs and I) notice many clues but they were so vague. Everyone – including my mom’s family physician – attributed her symptons to something else: pain to her shoulder surgery, general malaise and feeling “off” to dealing with chronic pain and just getting older. Even when she began to get itchy, both she and her doctor felt it was an allergic reaction to advil which she had been taking regularly on the advice of her orthopedic surgeon (she had 6 of the 7 listed side effects). It wasn’t until she had jaundice that she went for her first ultrasound. Then everything happened with great speed. Ultrasound on Monday, ERCP on Tuesday followed by acute pancreatitis, CT scan on Wednesday, bypass stent insertion on Thursday.
When she had the CT scan, they noticed a larger tumor in her lower abdomen. Her specialist at the time said that is “not uncommon” with CC to see what he described as a satellite tumor. Apparently they occur in about 25% of cases and are generally benign and he suggested to leave it alone (I did read a few articles which seem to back this up). This is when it was also felt that it would be reasonable for mom to see a surgeon although her doctor was fairly certian she was nonresectable. Her second return to hospital and subsequent bypass and ERCP moved her to palliative status due to the spread of the disease. My mom was also clear that she did not feel she could live through a major surgery and wanted to really focus on quality of life for how ever long she has.
When I spoke to her doctor in August about her prognosis, he was hesitant to answer. When pushed, he felt that if she tolerates her stent well she could have a good year or so. However, he added that she could get an infection and that could be it.
Thanks again for your welcome. This site, particularly the discussion board, has provided us with more information than we can find anywhere else. We know each patient and their experience is unique, but it helps to understand what others have gone through, are going through, and to have a place to ask questions and have community of understanding of what we are going through.
Sharon…I would like to follow katie and Lainy in welcoming you to our site. It always is thrilling to see when “Lurkers” turn in to “Members” sharing with us their stories. The many decisions made in last few months seem to have turned out to be the best for all involved especially, your Mom. This must be assuring to all.
Sharon, I am wondering about the “benign mass” discovered and how it is to be part of of CC. Have you been given an explanation for this?
I am wishing for good things to come your way.
MarionHello, Sharon and welcome to the best little club in the world that no one wishes to have to join. So sorry about your mom’s journey and it sure brought back many memories. My husband, Teddy is a 4 year survivor of a Whipple Surgery. He is now going to be 77 this month. In the beginning when he had his ERCP the dye leaked on the Pancreas and literally destroyed it. He spent a week in the hospital (recouping from an aborted Whipple)and 2 more at home as the doctor had to cut the head of the pancreas and could not do that until it had healed. I know so well what you have been through. The doctors told him, after his successful Whipple that with the type he has they could not do chemo and that radiation probably would not help. The CC returned last year and was zapped with cyber knife. Now it has returned again and we see the Radiologist next Friday. I feel your mom seems to really know how she wants to proceed and sounds like a very strong lady. I am sure she is very proud and grateful to have you all as her children. Please keep us posted on her progress.
Sharon,
Welcome to the board. Glad you have felt able to post, and what a detailed first post. I have had tears in my eyes reading yours and your Mum’s story.
How blessed for her to have such a wonderful, supportive family like yours. What a strong, determined lady your Mum is.
Make all the memories you can and savour this precious time.
We only had 7 short weeks with my Dad from his diagnosis to his untimely death at the end of June. We didn’t get the chance to say our good byes and I struggle with that.
Wishing you peace and strength as you face the future together.
Katie
My mom was diagnosed with CC in July. She had become jaundice. An ultrasound showed a blockage in her bile duct. The ERCP was unsuccessful and caused acute pancreatitis. While we all struggled with a cancer diagnosis, she fought to recover from her life-threatening bout of pancreatitis. They inserted a stent that drained externally to relieve the jaundice. As we waited for her to be strong enough to have another diagnostic ERCP, the stent came loose, actually dislodged itself and she caught an infection.
Back to emerge where we waited for 36 hours for them to find her a bed. They replaced the stent and were able to do a full bypass which (knock on wood) has worked very well for her since then. The second ERCP was also unsuccessful in diagnosing mom’s cancer but the both procedures clearly showed a 6cm+ tumor in the main bile duct, located in the liver. There was also clear evidence that the cancer was spread throughout the capilliaries in the liver and a CT scan showed a larger benign mass in her lower abdomen – appartently this a common occurence with CC. Bloodwork also led toward the diagnosis. She was in hospital for a total of 7 out of 10 weeks. During this time we (my 5 brothers and sisters and me) went into full force care routine (and I do thank God for having such a big family!). Her infection cleared up and she was slowly weaned off of all medications.
While in hospital we worried about her coming home at all. She voiced the same concern as she was incredibly weak and her short-term memory virtually disappeared overnight. As she grew stronger, we talked about her moving north of Toronto to Barrie where three of my sisters and my grown niece live. We found a beautiful retirement home where she has her own apartment. The building has 24/7 care available for those who need it. She will be able to stay here, living independently while she can and being cared for when she needs it. She will be allowed to stay here through the end. Her primary doctor – a new one for my mom – is called a “hospitalist”. I had to look it up because I had never heard of it before. Turns out her role is to coordinate all of my mom’s care. She has an office in the retirement home, will come to my mom’s apartment when mom isn’t feeling well enough to go downstairs to her office, and is on staff at the hospital. She will ensure that tests are not duplicated by different specialists and that medications aren’t given that contradict each other. She also made it clear at our first visit that she will be with us on this journey through the end.
My mom’s transition through the move was dark. I am sure she was depressed given everything that has happened and her life literally turning upside down overnight. I am glad to say though that after a couple of weeks, her sunny and sweet disposition returned – along with her sense of fun and mischief.
My mom is 79 years old. Given what we know and after extensive talks with her specialists, she has opted not to undergo additional treatment. So – no chemo, no radiation. She is not on any medication at the moment either. She has some pain but feels it is bearable and would rather not take pain medication unless she has to (She takes pride in being “pill free”). She blames her pain in her upper right quadrant on having a shoulder replacement a few years ago. We suspect it might acutally be the cancer but it seems to help her think it’s her shoulder.
Her focus is on quality of life for whatever time she has. She also has made it clear she does not want to hear her prognosis as she is worried she will focus on “time” and live “in between” instead of in the moment.
My mom is and always has been an incredibly independent and strong woman. It has been difficult watching her go from living on her own, driving, participating in many of her social activities from her seniors “heart walkers” to her bridge club to being dependent on others for day to day care.
However we are getting to spend lots of time with her are getting a chance to enjoy “good days” at the moment. I’m storing them up for when things get ugly.
I’ve been lurking on this board for about 6 weeks and have read some very grim and wonderfully inspirational messages which have helped me cope – so thanks!
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