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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 12
Gavin and friends...
With broken heart, I tell all of you of my Bobs passing on 22/6/10...
Finger wagging in my face.. he told me how I should go on. Jesus what a task, if only he knew! My beautiful, strong, handsome Serbian husband expected more than 49 years and had a complete set of plans in place.. but not to be. A love of life, second to none, he planned and planned and planned. I believe this will be my last posting on this wonderful website but if anyone out there needs any of the facts of this unforgiving disease , please do not hesitate to contact me on rosemccusker@yahoo,com . My prayers are with all who read this
Hi guys, still awaiting visas from]Irish Consulate in Serbia, much of the delay being down to Bobs brother not having his passport in order (lazy little git!)
Hopefully all will be sorted early next week.
On the subject of syringe drivers.. all is now working well after a very shaky start and a bit of tweeking on the meds. Bob had a visit today from his Serbian colleages and managed to keep the chat going for over two hours. (and they say women can talk!) He was alert and well and is resting peacefully since early evening. Hand cramps were giving him grief but Quinnine Sulpher 300mg did the trick and he has had no problems since.
This is a great place to ramble on and on and on.......
Love to all who reads this
Thank you Lainy, Jen, Janet, Gavin and Marion, for all your good wishes and helpful suggestions. Gavin, I read your posts on your dads last few weeks and found them very reassuring that, so far hopefully, I'm doing the best for Bob.
Bobs father and brother are travelling from Serbia in the next week or so depending on the Visas so keep your fingers X'd that all goes well there. His mother has deep vein thrombosis and isn't allowed to fly.
Bob had a good day today, pain free, nausea pretty well under control, very alert and giving orders as usual! He had been out of bed for approx two hours today which is better than in recent times.
Gavin, I understand you are from Scotland.. we live in Rep of Ireland about 40km north of Dublin... so, I consider us neighbours!
I will keep you all posted and thanks again for your support.
Today my husband bob had a syringe driver inserted for his morphine and anti sickness drugs. Palliative care team are visiting now every day. Bob had a drain inserted 6 weeks ago to drain ascites, approx 6 litres every seven days. His weight loss is astonishing, his energy very low, a very distinct weakness in his voice. Still eating a little bit. A lot of tears and depression and dissappointment.. and this coming from a man who was so strong and positive just a short while ago. Can anyone out there tell me what to expect next? I'm so frightened.
kay, I am so sorry that you lost your dad after his very brave battle. My father died 2 weeks ago and my loss is very new and hard to come to terms with. However, because you will keep him safely tucked away in your heart, he will never be further from you than a heartbeat.
Our sincere sympathy to you.
Rose (carer)& Bob (cc patient)
Thanks to all of you for replying to our message. We really just want to share our sense of hope and belief that we can get over this and if that should not be the case.. then we gave it our best shot! My father passed away 2 weeks ago suddenly. In the blinking of an eye, he was gone from us..(heart attack) and we are still reeling from the shock. His motto was to always live life to the full, take the good with the bad, expect to live a long and fruitful life and when your time to depart comes, go confidently in the knowledge that you were always true to yourself and those you loved. Our love and best wishes to all who read this.
Rose & Bob
Hi Kathy, My name is Rose. Please take courage from our story. My partner Bob was diagnoised with cc unrectable in Nov 2008. Prognosis was 3 - 6 months. He commenced 5fu on 7th Jan 09, went to Serbia to celebrate his sons wedding on 28th May 09, commenced gemzar in june 09, MARRIED ME! on the 5th Aug 09, celebrated his grandsons birth on the 7th Aug 09, built our decking in September 09! Believe me while everyone around us is talking about sombre things...... we are busy living! He has had NO hospitalisations, NO surgical intevention, plenty of medication and an abundance of love and support. Bob is now 49yrs old and the 'key word' is LIVING!
My very best wishes to you as you continue to live your life... just as you should.
Rose & Bob Sevdelinovic, Ireland.
Hi jim, I have just logged on after a number of weeks. I have just said a prayer for you. My partner (and husband to be!) is visiting in Serbia for the past 10 days. He was diagnosed last Nov 08 and although he had a rough time with chemo from Jan to March, he is doing fine right now. Welcome to this unfortunate club... but you will find many friends and much support here.
Good luck and keep positive
A big hello to 'Gail's Only One'. Your sorrow is almost tangible. Your gratitude is very real. I have no doubt that Gail still guides you as she always did. You have been priveleged and blessed by such a special mother and you will continue to receive all that is good, from her. May she enjoy eternal rest. God bless and take care. RoseX
Thank you guys for all your messages and support. Now I know that I'm not alone with this. I have big family support here in Ireland and that is good for me. However, Bob has a small family in Serbis and the language barrier for me is a complete nightmare! I don't think they really know how sick he is and his positive and strong attitude belies the horrible truth of this. Right now he's doing ok. He had a full body scan this week and will have a review meeting with the oncologist specialist on April 1st. He has decided that no matter what we're told at this review he will overcome this. He is fighting for his life Lisa, so a special thanks to you for your words of encouragement.
Please explain how this treatment works? God bless Cindy and the miricle that surrounds her
hi everyone. I am Rose. My Serbian partner, the man I adore , was diagnosed with CCA last Nov 2008. No resection... no Chemo offered. He is 48 yrs old. He has plans for us. THIS IS NOT ONE OF THEM. 3 - 6 months prognosis. Started 5 FU treatment in January 09 and having a really tough time with it. However..... he is very very positive and has already decided that he can win. I love him that much that I am willing to believe him despite the odds. My problem is , that I see him growing weaker physically every day. Can anyone out there tell me what to expect and how best to give him the care that he truely deserves. My heart is broken...
Posts found: 12
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