Hello I’m new
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Hi Lesley,
How this works is very simple, you post anything at all that you want and you post it anywhere that you want. you can keep posting here on this thread, you can post on another thread, or you can post on any other thread at all. There are no rules and any and all posts that you make will be appreciated by us all. And if you want to start another discussion or ask any questions at all on any other parts of the site, then go for it! All posts are most welcome.
Yes you are right, support groups are fantastic. So ask and post away!!!!
Best wishes,
Gavin
How does this work, am I supposed to move on to another page now that I have introduced myself, or do I keep waffling on this one?
I’ve never been a part of any sort of forum, so don’t know how they work. It’s a great idea though, support groups are fantastic.
LesleyHi Lesley,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us. And I am sorry to hear about your dad. I came here back in 2008 when my dad was diagnosed with inoperable CC and everyone was a great source of support and information, and I know that we will all support you through this and we know what you are going through. As I said, we know what you are going through so please keep coming back and we will be here for you.
Like your dad, my dad didn’t smoke, didn’t drink alcohol that much and was pretty healthy and didn’t have any other medical conditions. When we were told the news of his diagnosis, it came out of the blue and I still remember what it felt like. It sort of felt like getting hit in the gut with a bat. I know that this is so hard to deal with, but please do not give up hope.
From what you have told us, you do have a lot to deal with right now, an awful lot. But I know that you will find the way for you to do what you need to do. I was my dads carer when he was diagnosed, and I was and still am my mums carer, she has COPD. And like you, I am the strong one in the family. You will find that strength that you need to be there for your dad and I know how much that will mean to him. Please know that we are all here for you and can relate to what you are going through.
My best wishes to you and your dad,
Gavin
Lesley….a warm welcome to you from me also. I wanted to mention that we have a some members from Australia on our site. Hopefully they will be able to greet you also.
Best wishes,
MarionThank you to everyone who has replied to my post. You are a great source of inspiration and support, and I shall be sure to visit often.
Hugs to all
Lesley xDear Ironbark, WELCOME to our wonderful Family. We are so very sorry to hear about your Dad and the good news is that as soon as the Doctors start on their game plan you WILL feel better. You have already been through so much in your life and have weathered it, this too will make you stronger yet.
My husband had a bad infection before surgery and a week later they did go through with the surgery. He also had a PICC line and they are great for getting the Meds in and for drawing blood. Take some deep breathes, you are not alone now, and please keep us posted, we care.Hi Ironbark!
Welcome to the site….I’m sad you had to find us but very glad you did.
There are several of us here that are in the medical field. I’m a Cytologist and was the one that diagnosed my Mom at the age of 77. She was still working full time by choice and the finding of CC was an incidental finding when she had a bout of pleurisy. Her doctor had sent her to have a CT to r/o a blood clot and that’s where they saw the lung mets.
At diagnosis, she was Stage IV with mets to the lungs. All with NO indications that anything was wrong.
You can use the search function at the top of the page and you can read my story by searching for my name….. Cherbourg.
I know how hard this time is for you and it’s worse because you are in the medical field and know far more than you need to know!
You can also read and submit questions to Dr. Giles (Also at the top of the page).
You are in the beginning of the “anticipatory grief” phase of this monster. I will tell you that knowledge is power and caregiving is hard but oh so worthwhile. I would counsel you to stay as rested as possible and let things that aren’t necessary just not get done. You have so many things on your shoulders right now but I promise you will find a deep strength inside yourself that you didn’t know existed.
Your sons will be a source of great strength and help to you. My children were amazing. I was fortunate to have great support from my husband and friends and family as well.
This is the time to implement the 5 minute rule…..do five minutes… then tackle the next 5 minutes.
Please come here often for questions or just to vent. We have very broad shoulders and we are always here for you!
I’m sending lots of love, hugs and prayers your way!
Hugs!
PamDear Ironbark,
I’m sorry to hear about your dad and all that you’re trying to handle. I was diagnosed in April 2010 with CC and it definitely is a rollercoaster of emotions. Its hard to see someone you love perfectly fit and then get very sick so quickly — unfortunately this disease does that.
I go through moments of being very positive and enjoying every moment I have with my family to periods of crying because this seems so surreal at times.
You are not alone and I gain much support from reading other’s posts on this website so I hope you find the strength and support here too.
As Tom noted above, “taking it one day at a time” — that’s all we know is the present and I’ve been trying to make the most of it with my family.
Jane
Welcome to the club nobody wants to join Ironbark! I’ve been a member about six weeks – my partner was diagnosed with intrahapetic CC on August 30th. It’s definitely been a rollercoaster ride since then and I think I have experienced all of the emotions you described above. It is amazing how the “spontaneous crying” comes about…you might be thinking of one thing, then – wham it hits you.
I have found that this board is a great outlet and so many people are willing to provide so much incredible support. Sometimes I just come on here to vent my frustrations of the day – which helps just to write it down – and ultimately you get wishes and support from everyone.
In viewing a post the other day I read a quote that went something like this: “we just take care of the five minutes ahead of us, then we take the next”. Similar to my “living one day at a time” motto….unfortunately it seems that’s all we can do. I think sometimes it’s okay to just feel bad- for a little while…but then you have to pick yourself up – and just think about the next few minutes…because there will be plenty of good memories ahead and thinking about the things you can’t control doesn’t do any good.
Be sure to ask anything out here – because there are a lot of people with great advice.
tom
Hi everyone,
My father was diagnosed with cholangiocarcinoma of the biliary tree in late August, so we are just entering the cancer journey.
Dad was a fit 74yo man prior to this diagnosis, he wasn’t overweight, doesn’t smoke or drink alcohol. He doesn’t have any other medical conditions, and prior to this wasn’t taking any medication at all. He has never had liver flukes, or been exposed to any vinylchlorides – really, he doesn’t fit any of the criteria for contracting this disease except being over 65…..
I don’t have a mother as she left when I was six years old, and my brother has schitzophrenia so is unable to be very supportive. This is devestating for me as Dad represents my whole family. He is trying to be brave and cracks lots of jokes, but I know him well enough to see that he is scared – who wouldn’t be?
Dad hasn’t had any symptoms at all, even jaundice, and his cancer was diagnosed after some routine blood tests showed abnormal liver enzymes that required further investigation.
Dad has had an embolisation of his portal vein about four weeks ago, and is now awaiting a right hepatectomy, which is booked for next Wednesday.
Dad kept saying he felt like a fraud, because apart from being tired he didn’t feel sick. Apart from losing weight – which we’d put down to him feeding his lunch to a possum after walking 1.5km to make woodwork in his shed, he didn’t look any different either.
Last weekend though he turned bright yellow and spiked a temperature. We took him to the emergency room and he was admitted to hospital. He has had a biliary drain inserted – which has drained about a litre and a half of bile in two days, and is having a PICC line inserted today as the antibiotics are not touching the infection and the PICC will allow more aggressive therapy. So far his surgery hasn’t been cancelled or postponed, but that is on the cards if the infection doesn’t go away. This could mean that any chance of a cure is lost …
I am normally a very strong person, but this whole thing has floored me. I broke down at work yesterday and was sent home after being given three weeks leave – I’m grateful for the leave as I’ll be able to see Dad for longer every day. My workmates were fantastic, and very supportive. My husband tries his best, but with an anxiety and depressive disorder himself, he is struggling with his own demons – last week he had a meltdown and was talking suicide – we’ve worked through that and he’s better now (this is an ongoing chronic state).
I have three adult sons who are marvelous, but they are also coping with this and I feel that as their mother I should be there for them too. As I said, I’m usually the strong one in the family – it doesn’t help me very much that I’m also a Registered Nurse, so am the liaison between the family and the medical teams.
I just find myself crying spontaniously, without warning. It’s awful, I’m sure I’m just grieving, but I’ve never experienced that before.
I’m trying to stay positive for my Dad, and my family, but this is such a roller coaster. How do other people cope?
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