Hello from England
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You have done everything right. Dr. Valle will be in the US for ASCO, beginning Friday, and it should give much hope to you that he will see Mary upon his return to the UK. Stay strong and hopeful, dear Judith. Mary does not have an expiration stamp on her feet.
Hugs,
MarionI’ve not posted for a while as been so wrapped up in events. Mary had 6 weeks in Christie’s and then came home on 9th May. She got NHS continuing healthcare. I am doing my utmost to care for her with the help of district nurses who come daily to administer a fragmin injection. Whilst she was in Christie’s they messed about with reducing steroids and as they came down, so did Mary. She ended up with odema (not sure how that is spelt) she had fluid from her toes to her chest that added 4 stone to her weight. She also got 2 different infections whilst there. Finally she got home, after I had had a stair lift installed and bought various other aids. The aids the hospital sent through Rosscare were so horrible they were only fit for the tip, so I sent them away.
Yesterday Mary was admitted to the Royal Manchester infirmary with signs of jaundice. They have done chest X ray which is clear and heart is strong. Blood tests of course. This afternoon she is having an ultrasound to see if there is a blockage. If so stent will be done today. She has been told that if there isn’t a blockage, nothing more can be done for her and she will be sent home (I assume this means sent home to die)
I’ve been looking at the U S research on the Cholangio Foundation website and I copied and pasted ti to Professor Valle’s secretary. Last Saturday I got an e-mail directly from Professor Valle. He can see her next week as he is on leave this week. I fear he will say that Mary cannot benefit from the American research. What else can I do??????? Obviously we both want desperately to prolong Mary’s life. Her 3rd great grandchild, a boy, was born on the same day as the new Royal baby. She says she wants to see him grow up and I know she won’t be around. I love Mary with all my heart and soul. I just want to go with her when we get torn apart.Dear Judith,
I just wanted to extend my welcome to you, and I am so sorry to hear of Mary’s diagnosis. I do hope that you were able to get some clear answers from Prof Valle. Please share with us what you were able to find out. We are all here to support you and help in any way we can! Please take care of yourself as you need to stay strong and healthy as well. Please know we are thinking of Mary and I will add her to my prayers!
MelindaHi Judith,
Sorry to hear about this and I know how much your are struggling right now with all of this. Let me just say that that stuff about them allowing Mary home is nonsense, complete nonsense! They can advise that Mary stay in hospital, they can strongly advise the same etc or they can advise about this that and the nest thing, but they can not tell you or Mary that she must do something.
The part about getting social services into your home to check things out to see if Mary would be able to cope with living at home is one thing and that is common, but they will not be able to say she CANNOT come home because of the living arrangements. If adaptions to a home are needed such as railings put in, new beds etc then that will be done if needed, that is commonplace and my mum has had that done to her flat as well.
Did you speak with Prof Valle today about everything and if so what did he say?
A MacMillan nurse will be invaluable to you both and I strongly recommend that you get their services now. Prof Valle or the GP will be able to make that referal for Mary if it has not been done so already.
Please do not think that you are not doing your utmost for Mary already, you most certainly are. Keep coming back and now that we are here for you.
Hugs,
Gavin
Judith,
I agree with the others. This can not and will not happen! I’m hoping it is some sort of grave misunderstanding that will be sorted out shortly. You two want, need & deserve to be together right now. Hoping to hear from you soon that your wishes have been met.
Please let us know how things are going and know that we are all here to help and support you in any way that we can.
Hugs,
DarlaWHAT! Judith, I have NEVER heard of separating a family. This makes me angry and I don’t usually get angry. I cannot believe this. Why would your own home not be suitable and you can call in the Mcmillan Nurse which is our counterpart to Hospice. Who is telling you this. Why would anyone keep apart loved ones at this point. Please talk to Dr. Valle about this. Most patients want to go home for the journey. And they do! I hope to read that this is all straightened out as you have to deal with without being told your family will be separated!!!
Judith,
I live in the US, so I am not familiar with UK systems. I’m sure some of our European members can advise on medical systems and patient/caregiver rights in the UK though. I “hear” the desperation in your words and would like to offer a bit of general advice. First, please know that no matter what, you will not be alone. This discussion board is full of compassionate and knowledgeable people, and we will be there for you and Mary as long as you need/want support. I found it extremely helpful to correspond with others that have walked in my shoes (and my husband’s). This disease often hits so fast and hard that it can be completely overwhelming. My best advice right now is to try to stay calm and focus on needs that are immediately in front of you. Perhaps most important is to understand exactly what Mary’s diagnosis is and what treatment options are appropriate currently. Also, best provider for them. Dr. Valle should be able to explain this to both of you. If you don’t understand something, ask the doctor to clarify. You are entitled to this information. Once you know the complete medical situation and treatment options, then the two of you (you and Mary) can discuss how she wants to proceed, Same with social worker. I suggest you ask for specific concerns they have about Mary returning home and then perhaps you can take steps to overcome those concerns (for example, if she is too weak to manage stairs and the home has many steps, maybe she could occupy an area on the first floor.) Whatever they say, I would try to really understand the issue and work with them to find the best solution for Mary. I hope I don’t sound too “preachy”. I just wanted to share what worked for me – addressing the most pressing issue each day and trying not to think beyond the next day or so. I hope that you and Mary get the information and support you need and deserve. Debbie
Mary is still an in patient at The Christie. She has been there for over 2 weeks now. She drove to the hospital and walked in for a CT scan full of hope. They kept her in and 2 days later she was bedridden. The car is still in Christie’s car park. I have managed to get an appointment for both of us with Professor Valle tomorrow at 2-30pm. I assume he is coming to her bedside. I have so many questions in my head for him re ongoing treatment. I refuse to stand by and let my Mary deteriorate without doing my utmost to find treatment for her, no matter where in the world that treatment happens to be. Mary is my whole world, we love the bones of each other, and we’ve been through so much together over 40 years. It can’t end like this–I can’t bear to be left alone in the world without her.
Even when/if she gets well enough to come home, our home is going to be invaded. They’ve done a referral to social services today for someone to come and inspect our home to see if they will ALLOW her to come home. I’ve been told quite bluntly that THEY decide and if they don’t agree then they will not allow us to be together. Mary does not want to go into a home or a hospice and neither do I. Can they really force us to be apart in what could be the final months of her life. I feel that one by one decisions are being taken away from us when all we want is to be together in our own home for as long as possible.
Thanks for that Judith. Hope that Mary gets home real soon and please keep us updated on how things go with everything.
My best wishes to you both,
Gavin
Yes Juan Valle is Mary’s oncologist. We’ve only seen him once before the chemo started. I’ve e-mailed his secretary about a referral to MD Anderson and for a request to see him personally. I have received an acknowledgement. My understanding is that Mary will be seen in clinic when she has been at home for around 2 weeks.
I’ll have a look at those links you sent. Thank youHi Judith,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what Mary is going through right now. But I am glad that you have joined us all here as you are so in the best place for support and help and you will get loads of that from all of us here. If we can help in any way we will, just ask and we will do what we can.
As Lainy says, I too am from the UK, Dundee up here in Scotland and we have many members here on the site who are from the UK. My dad was diagnosed back in 2008 here in Dundee and was also treated here as well with PDT.
You are so right what you say about the Christie in Manchester. It is well known throughout the UK, Europe and the USA as well. Can I ask who Mary’s oncologist is at the Christie, Is it Prof Juan Valle? If so I would say that Mary is in very good hands indeed with prof Valle. Prof Valle is the Vice Chair of the Medical Board for the Cholangiocarcinoma Foundation and has much experience in dealing with patients with CC.
http://cholangiocarcinoma.org/juan-valle/
I do have a few UK specific links that will be of interest to you and Mary. Have you heard of AMMF in the UK? It is the UK’s only specific webiste and charity for CC and it can be found here –
You will find a lot of UK specific info there regarding other major treatment centers and treatment options.
http://www.ammf.org.uk/cholangiocarcinoma/treatment-options-2/
http://www.ammf.org.uk/cholangiocarcinoma/guidelines-for-diagnosis-and-treatment-uk/
http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/
Helen who runs AMMF is a gem and I am in touch with her frequently about lots of things CC related. Should you wish me to contact her on your behalf about any other facilites or options in the UK then I would be happy to do so for you.
I hear what you say about treatment under the NHS and all that but there is quite a lot being done now for CC in the UK. I assume that surgery was ruled out seeing as Mary was only offered chemo, did Mary seek a second opinion on surgery if that was the case?
Should Mary want to seek further options in the USA then I will leave that to some of the USA members to discuss with you as they know far more than me about things on the other side of the pond.
I do hope that you keep coming back here Judith, you are not alone in this now. We are here for you and we care.
My best wishes to you and Mary,
Gavin
Dear Judith, welcome to the best place to be for CC support and welcome to our family. I am so sorry to read about your wife, Mary and yes I have heard of Christie. I am going to refer you to Gavin who is in Dundee as he know much more about the UK than I do. We are big believers in 2nd and 3rd opinions. Yes, try to get some reading in as knowledge is our best tool for fighting CC. Another important factor is attitude, it is the only big factor as this journey requires strength and great attitudes. At the top of our page is a Search engine. Just enter a word and many posts will appear on that subject. I am also sending some sites you may find helpful. BRAVO on your marriage! Please keep us updated on Mary’s progress, you are not alone as we really do care.
Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/Hi, I am Judith from Manchester in England. My wife Mary (yes we have a legal same sex UK marriage) was diagnosed with intrahepatic cholangiocarcinoma in November 2014. All she was offered was palliative care and chemotherapy.
After 3 months and 8 chemo sessions of Cisplatin and Gencitabin she was told it had made no difference and in fact the tumour has actually grown. It’s also spread into the adrenal gland.
Mary is currently an in patient at The Christie Hospital in Manchester England. This is well known in Europe but I do not know whether it is known within the U S.
She has all the side effects of the chemo though, low blood platelets, blood clot on lung, anaemia and a chest infection. When she is fit enough to come home we will then get an appointment with the oncologist. I am looking into whether MD Anderson in Houston can offer any better treatment than is available here in the UK. The NHS (National Health Service) frequently refuses drugs people need to stay alive, due to the cost. I am prepared to sell our home and everything we own if MD Anderson can offer a chance for my Mary to stay alive.
In the meantime I’m going to read some of these posts to get an idea of how treatment varies in the US from what is available here in the UK
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