Please……i need your thoughts.
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thanks so much Gavin. Your help and information is invaluable.
As to chemo i didnt realise that having jaundice prevented chemo, this is maybe the reason for not being sure on committing themselves to a straight answer. My mum would only do chemo if there was some real chance of lenghty survival. If it was the case that it would give her only a few weeks extra then she would not consider it.
I will check for posts on the whipple surgery, thanks a million,
Chelle xxxxxxxxxxxxxx
Hi Chelle,
Thats great to hear that your mum was able to get out of the hospital for the weekend and that you were all able to spend some time together. I hope that you all had a good time and I’m sure your mum will have enjoyed her time away from the hospital.
As to the whipple procedure, if you use the search funtion here you will find a lot of posts on that surgery and many of our members or their loved ones have had it. As to whether everyone can get it I would say no they can’t and indeed my dads CC was diagnosed as inoperable so he was not a candidate for that or any type of surgery.
Have you spken with your mum about chemo and how does she feel about that if they were to offer it? Like Andie’s dad, my dad could not get chemo either due to his jaundice coming back and his bilirubin levels were too high. What my dads oncologist told us was that my dads body would not be able to flush out the toxins in the chemo once they went into his body if he did chemo. Does your mum have any other health issues as this could also affect whether a person can get chemo or not. One guy at my dads day care centre had heart issues as well as cancer and he couldn’t get chemo either as his heart would not be up to the stress that the chemo would put on it.
You will find out more information on what can be done for your mum later in the week once your mums team has met, and I would suggest to you that you make a list of questions ready to ask them. Write these questions down and have them att the ready as I know from experience that it is easy to forget what questions to ask when you are meeting with specialists etc.
And I know that the waiting around for news is hard to do, we have all been through that and it can seem like it is taking ages! But you are doing the right thing for your mum in staying strong and seeking out information. The more informed you are the better.
My best wishes to you and your mum,
Gavin
Hi Chelle,
So glad your Mom was able to have a weekend pass, that must have been lovely for you all. I know from experience how tiring and depressing long hospital stays can be.
I’m not sure about the whipple surgery, but I’m sure someone else will be along to advise.
Chemo may only be an option if the biirubin level is down low enough. This is what stopped my Dad having chemo, his bilirubin never stabalised enough. Our oncologist would only give it if the bilirubin was 50 as it can do more harm than good as the liver can’t cope with the toxins.
I feel that I have to keep strong for my parents, luckily my husband is wondeful and he has to deal with the brunt of my emotions.
Hoping that you have some more answers soon.
Best wishes to you and your family
Andrea
thanks so much for all your kind words. I feel i am keeping it all in to be strong. My dad and brother and so upset, and i feel i am trying to be strong for everyone, especially my mum who has been so strong indeed. Its amazing how she is holding it together.
We had had the most wonderful weekend together. The doctors decided to give my mum a weekend pass, so we all went up to my parents house to spend ‘time’ together. The specialists are having a meeeting on thu, or fri to discuss the approach they will take.
I have heard alot on here about something called whipple? Is this something everyone at some stage can get? Or has it got to be done at a certain stage?
Also, chemo has only been mentioned as a possibility, should they not be giving this regardless to try and give mum every possible chance she has!!!!
My mum is otherwise very fit and healthy, although only 6st13oz.
any insight really appreciated. Hope everyone is ok, you are an amazing bunch!!!
Thanks again
Chelle
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Dear Chelle,
You will experience emotions you never knew you had. For me I can only explain it as a roolercoaster ride, ups and downs. Hopefully you will have more ups.
Looking back over the past months since Dad started having symptoms in February I really don’t know how I’ve coped but I have. I have learnt with the help of family, friends and the wonderful people on here that it is out of my control and to take things day by day. Yes some mornings i don’t want to get out of bed, scared what the day is going to bring, but I have a 9 year old who needs me, a family that need me, and whatever I’m going through Dad is going through much worse and he is still getting up on a morning.
Children handle it much better than adults. My Dad has been yellow now since February and the hospital visits have taken up most of our year but to my son this is now normal. When the time comes when Dad is in his final days then we will deal with telling our son but for the time being we feel he doesn’t need to know but that is our decision. He knows Grandad has a problem with his liver and that is making him yellow, he knows he won’t be having his special medicine (chemo) now because the doctors have said it won’t work but he also knows he’s still Grandad, still needs our love and still can play cards and make lego!
Sending you much love
Keep strong
Andrea
Dear Chelle – Sometimes the only thing you can do is get the anger, anxiety, pain, out of your body and into the air. You need that release so it doesn’t crush you. We really understand that feeling and the helplessness of not having enough answers or understanding why it had to happen. Han in there with us and we will listen and care about you and your family. Blessings, Susan
Hi Chelle,
You keep coming back here and if you want to have a good old vent, then good, you go for it! It is good for us all to get stuff out of our systems, to have a good blast and to let others know how we are feeling. As I said to you before, we are all here for you, we know how you are feeling right now and we know what you are going through right now. So keep coming back, and if you need to get more stuff out, then let rip to us all!
Trust me, once your mum has a treatmenmt plan in place then that maze will not seem as duanting as it does right now, you willl have that map and you will have direction. I can’t promise that you will have get all the answers, but you will be fighting back and that will make you feel better.
You ask how I coped with this, and to be honest, I guess that I was just there for my parents. My mum has copd and I was her carer before my dad got sick. Then he got his CC diagnosis. And I knew that I had to stay strong for them both, to be there for my dad when he needed me, and also to be there to help my mum, not just with her illness, but also to be there to support her through everything with dad. I don;t have kids, so I can’t offer any advice to you with that, but I know that others will have something to offer here. But I know that you will find strength here, strength that you never thought that you had and you will be there for both your mum and your kids.
Keep coming here, shout, scream, lash out and let it rip if you want to. We know and we understand.
Gavin
thanks gavin, all what you said really makes sense. Especially the part on treatment plan. Think it will be easier when we have a map on how to get through the maze. One door seems to shut then the next one slams in your face. Cant imagine how my mum must feel when i feel like this. I am not the one facing it myself. How do you cope?
Where am i going to find the strength to get my kids through it when i cant get myself to take it in. Not needing an answer on these questions, but need to get it out my own head thats all. Today i woke up with that gnawing in m stomach, and for a split second i didnt know why, then it came crashing into my brain like a sledge hammer.
Kids are asking when gran will be home. Is she better yet, have the doctors fixed her yellow skin. I cant even answer, i dont know how to say no, but i cant say yes. I cant admire everyone here enough for support they give to others.
As i said i dont really need a reply, just needed to get it out.
xx
Hi Chelle,
From your last post I see that your mum is in the Royal still and not the Beatson. Everything that you have said in your last post is just natural and so many of us have gone through that. You say why, I asked that as well and there is no answer to that. Numb, angry, sick, scared and shocked, I felt that way too when I got the news about my dad, and we have all felt these emotions.
I can’t tell you exactly why the surgeons can’t operate on your mum. But in my dads case, his tumour was too close to his portal artery and if they tried to remove it through surgery then he wouldn’t have survived the operation. No one here will be able to say to you that chemo or radiation will completely remove your mums tumour, I wish we could say that that would be the case, but we can’t. What I would say to you is to not give up. We have many members here that have/are undergoing these treatments so please do not give up the fight. I know that right now you are in a daze with having to deal with all of this, but once a treatment plan is in place for your mum you will feel better, and then the fight back can begin.
Thinking of you and your mum,
Gavin
Well apparently the surgeons at thr royal are the best ones around. So hopefully we will not need to look further than them, its all i am clinging onto at the moment. I think i will be nedding every opinion i can, i just dont believe it is happening.
Reading all thes posts here sounded foreign a couple of weeks ago. Never heard of bile duct, stent, etc then it seems that its a language you have spoken forever. It sounded unreal some of the things i have read here, now i am saying that they are happening to my mum.
WHY WHY WHY
Seems to be my favourite thought. I feel numb, sick, angry, scared, shocked. Every emotion has hit me from nowhere when i least expect it. I cant even bring a tear to my eye as i wont be able to stop then if i start.
Why cant they operate? thought you didn’t need pancreas or gallbladder.
Can they not give her insulin if they remove pancreas.
Chemo and radio been mentioned, would this or could this get rid of tumor completely without surgery? can it cure it i mean? Has anyone had an inoperable tumor that has survived, or at least surviving
Thanks for all your thoughts, i am thinking and wishing for you all too
Chelle
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Hi Chelle,
So sorry the news wasn’t what we wanted to hear BUT you are in the best place for advice.
Your Mom will start to feel much better now the bile is draining, it’s a good sign that the stools are darker. The itching should stop too, as for the yellow in the skin and eyes, this can take weeks so don’t be alarmed when it doesn’t go over night.
The doctors should be taking blood and checking bilirubin levels everyday to check the stent is working. Once they are happy it is your Mom will be let home.
If your Mom is willing to I would contact another hospital more experienced with CC as they may be willing to operate. We tried Professor Lodge in Leeds and he was lovely and has an aggressive approach to CC, for us it was too late but it may be an option for your Mom.
For chemo to start your Moms bilirubin will need to be 50. You could ask if there are also any clinical trials your Mom could go on, again if your Mom is willing to. I know there was the ABC03 trial that should be starting the end of this year. Also radiation may be an option to.
Like Gavin said, we are here for you and whatever questions you have, ask away, we are here to help you.
Keep strong
Andrea
Hi Chelle,
I am sorry to hear this news, but please do not give up hope Chelle. Your mum needs you right now and you will need to be strong for her. I so know how you are feeling at this moment, I felt the same when my dad’s CC was diagnosed and we were told that it was inoperable.
I hope that your mums stent starts to do it’s job soon and that the bile starts flowing again. And your mum will feel better once this happens. It might not happen overnight as they can take a bit of time to work. My dad had a metal stent inserted and he felt a lot better once that started working. What did your mums docs say about treatment for her? Did they say anything about radiation and what did they say about chemo? Your mum always has the option of getting a second opinion should she wish to seek one. How do you think she would feel about that?
We are all here for you Chelle.
My best wishes to you and your mum,
Gavin
Hi all.
Unfortunately i shouldnt have worried about being in the wrong place here. Mum got scan results on wednesday. There is a tumor between pancreas and gallbladder in the duct.
We now have to wait for a week until the consultant talks to specialist about what to do.
Been told it is inoperable due to position and that it has wrapped round bile duct. They have put stent it to drain off bile. that was yesterday, and today stools are darker and urine lighter, but no improvement on skin/eyes yet.
We have no idea what stage we are at, if we have any chance with chemo or not. My mum will only do chemo if there is good chance, any thought wat stage we are at with your experiences with this horrid disease.
My heart truly goes out to each and every one of you.
Chelle xxxxxxxxxxxxxxx
Hi Chelle,
Glad to hear that your mum has finally been able to get her CT scan and I hope that you get the results back as soon as possible. Have you been told when you will get the results back? Your poor mum indeed, and sitting around waiting for scans, news, results is tough, the waiting game is indeed something that we have all gone through, but that doesn’t make it any easier! And to be told that this is delayed due to the snow and people falling is not right at all.
The itching that your mum is going through right now is indeed very common, my dad had it and many here have went through it as well. If the bile flow is obstructed, then the billirubin will flow elseweher through the blood causing the itching, and this also gives to the showing of jaundice, yellowing of the skin and eyes etc.
Hoping that your mum gets the news of her CT scan tomorrow.
Best wishes to you and your mum,
Gavin
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