duchess
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Grief is such a personal thing. In this inpersonal world we live in, many people are embarrassed by any show of emotion & don’t know how to act to it or know what to say. We don’t seem to teach our young about death & grief in any significant way. It is as if many people would prefer never to mention the dead again. I think speaking about the dead is a way of honouring them & keeping their memory alive. But many think that this is morbid in some way. Keep your “wayne” alive in the memory of your children , grandchildren & other family members with casual remarks such as: “Wayne would have laughed to see you doing that”; ” Wayne always loved watching the football” or similar things that relate to the world you & your family are still living in.Try to keep him alive in everyone’s mind without sounding sad or morbid. Unfortunately, no-one can tell us when our deepest feelings of grief will pass & often they come back at the least expected times. Try to remember the good times you shared. I am thankful for the time I have spent with my loved one & trying not to dwell on how hard it will be without him. My thoughts & oprayersare with you.
Regards
RoslynHi,
Just wanted to share some promising news with you. My husband, Bill, had his exploratory procedure yesterday & based on the areas that the dye reached when inserted into the Hepatic Artery, the doctors will be inserting radioactive spheres in early April. This will make him really sick &, unfortunately, the radioactive spheres do not discriminate- they damage all the bad & good cells they touch. Hopefully, they will touch the tumour cells mostly. Anyway, good liver cells can regrow. Hopefully the damned cancer cells wont. Wish him luck. I’m taking Bill on a holiday to New Zealand in two weeks time -he needs a break from medication, work & the normal routine. But I will be sure to let you know how the next stage of his treatment goes.
Best wishes to everyone out there who uses this site.
Regards
RoslynHi everyone,
I have continued my search for info on Cholangiolocarcinoma (CLC).
It seems that CLC has the clinical features resembling HCC but the morphologic features resembling CCC. It is suggested that CLC cells might be derived from Hering’s canal or stem cells which have the intermediate features between heptocytes & bile duct epithelium. Bill’s CLC’s are whitish in colour & solid, not encapsulated & resemble CCC.
Hope this info helps some one else too.
I will continue to look for info on this strange disease & share my findings with anyone who cares to read my blogs. Knowledge is strength.
bill goes into the Wesley Hospital, in Brisbane, for his exploratory procedure. If successful, he will later have radioactive spheres injected into the Hepatic artery. Hope you are travelling well.
regards
RoslynHi Guys,
Thanks for trying to help with info. Bill’s onc says to get info from National Cancer Institute(USA) under liver cancer. There is some info about other cases there-very difficult for non-medical people to understand.Bill has next to meet with a radiologist whowill give him a trial by inserting dye into the hepatic artery (going in through the groin & up- similiar to inserting a stent in the heart). If the dye goes to the tumours, he will on another day insert radioactive spheres into the Hepatic artery, using the same method.This should make Bill feel very unwell. Oncologist is hopeful that this may shrink the tumours but, of course, no certainty. If no help then the onc will try something else. One step at a time.
It helps to come onto rthis site & share with others whose experiences are similar. So Thanks everyone. Hope your journeys are proceeding postively.
Regards
RoslynThe Oncologist spells this disease- CholangioLOcarcinoma. like CC but with a added “LO”.
regards
RoslynHans,
I’m so sorry that Kris has finally lost her battle. I can’t imagine how you must be feeling. My thoughts & prayers are with you. I pray that God will give you & all her family the strength & peace to carry on. Remember,Love never dies. Remember the good times & when your beloved Kris was a health person, as much as you can . She will live on in your heart.
Regards
RoslynHi Loving sister,
your brother has been blessed to have such a great sister,as you ,& to have known true love in his life. It sounds as if he is in a supportive, loving environment . One day at a time, seems to be how it goes with CC, doesn’t it? My husband has CC also & has been offered only oral chemo & pain killers . He is inopperable, we are told. Each day has special meaning to us now, as it undoubtedly does for your brother & his family. I have decided to enjoy him whilst he is here & mourn only after he is gone. It is important to enjoy each day that God gives us together. CC patients don’t have an expiry date stamped on the soul of their feet, so who knows how long each will live. Who knows how long we, without cc, will live, though? Enjoy the time that God gives you & try to stay positive. Life is a gift, enjoy it as much as you can.
My thoughts & prayers are with you & you precious brother, as they are for all CC sufferers & their families.
Regards
RoslynThanks, Janet. We are unable to get away from work untill about May, as we run a 3 man business & we are 2 of them. But I will suggest to Bill that we get a second opinion through Randwick. For the time being we will stay with Bill’s oncologist who is just 20 minutes away from our work. For convenience sake, we will stay with him until we get that second opinion.
Hope you are feeling better yourself. Thank you for the advice.
regards
RoslynHi Janet,
Bill’s doctor has not mentioned a stent. I will look this up for more info.Perhaps he doesn’t need one yet. His cc was found before he had symptoms although he already had 12 tumours spread throughout the liver-some as large as 7.5cm. The doctor says he has a primary form of liver cancer, called cholangiocarcinoma.It is good to know that other Australian oncologists are more familiar with this disease. We live in Brisbane & are going through a large private hospital that has a good reputation. We have family in Sydney so may try a hospital there. My grandniece has been treated through Randwick Hospital for Leukemia for the last 5 months, since she was 9months old. We have visited the hospital with her & may see if there is an adult version for my husband.We are very pleased with the treatments she has been receiving & the support of the staff.
Thank you for caring & sharing, Janet. It really does help to interact with others who know what you are going through.
Regards
RoslynHi Marion,
Thank you for your warm welcome & all the helpful advice.
Just visiting this site makes me feel less alone.
regards
Roslyn ( Duchess)Hi Kim,
Thank you for responding to my post. It is reassuring to know that there are oncologists in Australia who have treated CC before. My husband’s oncologist, although a warm & caring physician, has never treated CC before & that makes us a little aprehensive. If we ask if a symptom is “normal” his response is usually” I don’t know what Nornal for cc is as it is so rare in Australia.” We will consider getting a second opinion from the Cancer institute in Melbourne now. Bill has already lost 12 kg. He seems to tolerate Nexavar, a chemo drug, quite well but has to take pain killers(Oxycontin) & anti-nausea drugs that seem to do little. Lately he has been experiencing pain in his joints also. We next see his oncologist on 24th February, so I will let you know how he is going after that and more blood tests & scans.
I do hope your dad is coping Ok & not suffering. He is blessed to have a daughter like you who cares so much. Please keep us updated on his progress.
Regards
RoslynThanks for all the support, guys. Bill & I live in Queensland, Australia. That’s right ,the state that has been hard hit by floods & cyclones in the past few weeks.We have not been affected though.
I am so glad to hear that your Dad is still going strong one year after diagnosis. He will acts as an inspiration to my husband who was recently diagnosed. Your father has been Blessed many times over- to have extra time with his family & to have such a loving, supportive family. He must be really special to have raised such a wonderful young woman as yourself. it sounds that, like our family, you have decided to enjoy every day you have with him & to take time to mourn only after he is gone. God bless you, your Dad & all your family.
