andie
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Hi Jen,
I have been thinking of you and your Dad often, as I think we are both going through the same emotions at the moment.
Have you been in touch with anyone about your Dads weight gain? I know the District Nurses come to my Dad every Monday to check his external drain, do BP, temp etc. Perhaps you could ask them if your Dad has them, or perhaps a quick call to the doctor to put your mind at rest.
Christmas is going to be hard this year and like you the pity party is getting harder to get over and I think alot of this is down to the time of year. I seem to be counting the days down for the wrong reason BUT our Dads are fighters and every day your Dad is nearer to seeing his Grandson.
The Bench and location sound lovely, please see if you can add photos. I am on face book if you want to add me.
Like Lainy says. stay strong. You are doing your Dad proud.
Sending love, hugs and prayers your way
Andrea
Hi Kris,
I’m so happy you are home. What wonderful news.
I’m so glad that they have finally sorted out help and support for you which allows you to be at home. I’m sure you will soon build your muscle tone back up with the help of the pool visits. My Dad lost all his after his first stay in hospital.
A cake is a lovely way to say thank you, we all love a nice piece of cake. What sort do you have in mind? My favourite is lemon drizzle but my son loves chocolate mmm mmm.
Enjoy being back on your couch, with Hans and your cats. I bet your cats have missed you.
Sending much love and best wishes
Andrea
Dear Milky,
I can understand the catch 22 situation but if you limit fluid intake it may make it harder for your dad to pass his stools, adding to the constipation. Prune juice is also good or even prunes.
Hope you get this sorted soon
Take care
Milky,
First I’d like to welcome you to our cc family. My Dad was diagnosed with inoperable cc in April after having jaundice for 2 months. This site has helped keep me sane and I don’t know what I would have done without the people on here.
My Dad had a stent fitted to control his jaundice and was told he could have chemo, he never got round to having any chemo because his bile level has never come down to a safe level, despite 3 stents and an external drain. We have now accepted Dad was never meant to have chemo.
He was told without chemo he would have 2-3 months, this was originally told to us in April, we were again told this in September. Dad is now very jaundiced and has less appetite BUT he is still pain free, still eating little and often, and still able to take care of himself, he doesn’t have any itching and his stools are normal colour. This is not what the doctors expected, so never give up hope.
I hope you get your Dads constipation sorted, if he won’t take any medication for it perhaps you could try amore natural remedy like fruit juice. My Dad had severe constipation after a course of Iv antibiotics and the movicol they prescribed made it worse for some reason. When we gave him orange juice and also peppermint water that helped. Someone on here also mentioned pear juice for constipation and peaches.
Sending best wishes your way.
Andrea
My Dad had stents fitted due to jaundice. The tumour was in this bile duct and was blocking the flow of the bile, hence dad becoming yellow. If the bile is flowing there would be no need for a stent, I suppose it’s due to tumor location.
Glad the new pain meds are working, heres to more fun days!
Best wishes
Andrea
Jenny,
My Dad has this feeling too, and without constipation. He is eating little and often. Sometimes though he wakes up with the full feeling, other times it comes on late afternoon and yesterday he didn’t have it at all. The DN said it may be due to his stomach shrinking as his appetite and food intake is getting less. She has recommended Ensure drinks.
I will be interested to what they say to you at the Liver Clinic, Monday. Please let us know.
My Dad is not on any pain medication at the moment as he is not in any pain.
I hope you get this sorted as my Dad said it is an ‘annoying’ feeling that really gets him down.
Best wishes
Andrea
Hi Lainy,
So pleased Teddy is doing well, I think of you both often.
Your Thanksgiving menu has certainly made my mouth water this morning, like Gavin said I can almost smell the aromas too.
So glad you have found a second dish that Teddy enjoyed too. You will have to post all your recipes on here as they all sound so yummy. Perhaps you can start a section in the Members Cafe.
Enjoy your Thanksgiving.
Much love to you, Teddy and your family
Andrea
Hi Jemima,
It’s lovely to hear from you and ever better that it’s a wonderful update! I have been thinking of you both often and I’m so happy your Mom has handled the chemo so well.
Have you got an appointment to see the Oncologist before your Moms 5th cycle? When we were discussing Dads chemo, we were told he’d have 3 cycles, then a scan which would be looked at by the oncologist to see if the chemo had worked before a 4th cycle continued. Saying that all hospitals seem to handle things differently. I’m sure you would have heard if the chemo wasn’t going to continue by now if your Mom is due her next round thursday, even with our NHS!.
My Dads got a metal stent but we did discuss at one point putting a plastic one inside. Our Doctor told us they usually need replacing every few months but only if they start showing signs of blockage or infection. Seeing as your Mom has had none of this then I wouldn’t worry about it unless it happens. It seems like everything is flowing like it should be which I’d take as a very good sign.
Has for coping, you will, when and if the time comes. I’d never thought I’d be able to cope but I do, some days I don’t want to get out of bed and I’m so scared. My Dad wouldn’t want me to feel like this so for his sake I carry on. One of my best friends lost her Dad to cancer last week and she was saying how looking back she doesn’t know how she coped, but she did and she’s coping ok now too. You would be suprised where you get the strength from.
Sending lots of love and good luck wishes
Andrea
Hello Lainy,
I hope Teddy is still comfortable in his new bed and the pain relief is working. I also hope you are taking time for yourself too.
You always know the right words to say. I think you are right, Dad needs to still feel in control and do things on his terms, and I think it is a man thing.
Dads tumor was under the 7cm, it was 2cm in August. The problem may be the location due to arteries/veins. It’s extrahepatic, and also one of his stents has kinked also restricting bile flow. Dad has said if they can’t promise the bile would flow even if the tumor shrunk he doesn’t think he will have it as if we have to go private it will be
Hi Katja,
You are 100% right about the NHS, they have been hopeless in regards to sending scans. Hopefully it will be third time lucky. My Mom is handling it better than I thought she would, she has her bad days but picks herself up and gets going again. She pops out for an hour a day, either to the shops or to my Nans, just to take a breather. On my days off we go shopping. She is talking about it more now and has said she has accepted that he’s not going to win the battle this time. She is grateful for each day we have got though and I’m proud of them both. We did let Dad sweep up and this weekend he is in charge of cutting the plastic sheeting as last week all the garden work was heavy lifting. Hopefully he won’t feel so left out this time. I’ve told him the car is always there any time i’m not at work to take him wherever he wants to go. Unfortunately the weather is not on our side at the moment, in the summer we could have popped to garden centres or local parks for a afternoon tea but it has gone so cold now. But I think another trip to B&Q will be on the cards soon as he still has other jobs planned for the house.
I hope you, your Dad and family are all ok.
Take care
Andrea
Thanks Marion,
I think the main problem with Dad is that he changes what he wants daily so Mom never knows what to give him from day to day, and he’s also a fussy eater at times!
He also has an illestomy as he had part of his bowel removed nearly 10 years ago when he had bowel cancer. I’m not sure if this effects his digestion too. I know certain foods don’t suit him anymore and can cause gas and bloating.
I have told Dad to note what he has eaten before the full feeling as perhaps like you say certain foods aren’t helping with his digestion.
I will have a word with Mom and perhaps between us we can work out food that would be easier for him, that he will still eat. If he could eat cream cakes and trifle all day I’m sure he would, he’s also very slim so any pound of weight loss makes a big difference to his apperance.
Best wishes
AndreaThanks both,
What causes the full feeling? and I wonder why it comes and goes. I was worried incase he had ascites but he has told me his stomach isn’t swollen and his trousers fit the same. We were told that it would be the effect of the bile building up on his liver that would cause more damage than the cc, so perhaps this has something to do with it. I just don’t want him to try and be superman and ignore pain relief if and when it’s needed.
Gavin, I think Dad was having a bad weekend and hopefully will allow his friends to visit as I think it would do him good. He did venture out to B&Q, which he wasn’t going to on the morning. He played darts and pool in a team many years ago and they are a mixture of team mates and old school friends. They haven’t been in touch for years but news spreads and understandably they want to see an old friend.
Dad is putting the naps down to boredom, I think his way of dealing with cc is denial at times. He just wants to carry on as normal as possible, which though hard we are doing the best we can to be ‘normal’.
How frustrating for you. Sending you lots of positive vibes for the Germany referral, having an oncologist on your side is half the battle.
Keep postive and never give up hope, you are a fighter and I hope you find many open windows and doors.
Much love
Andrea
Thanks Gavin,
What a day. The QE Hospital where Dad was treated said I needed to contact the local hospital where Dad had his latest CT scan. This was done for his baseline chemo scan in August. I contacted the oncologist who had requested the scan, who told me that the QE had referred Dad so they needed to request them via his secretary!. To help speed up things I thought I would phone the oncologists secretary myself to get all her details. When I spoke to her and explained that I needed Dads CT scan as the QE Hospital only had his cholangiograms she said she would contact the XRay department and get them to burn a copy on CD and send to the London Oncology Centre asap!
I don’t think she should have done this without a request from the QE Hospital but I wasn’t going to question this, my main priority is getting the scans to London. I just hope she doesn’t realise this before they have been sent.
It has been very cold in the Midlands today too, winter is definatley on it’s way.
Take care
Andrea
Hi Gavin,
Even though the Cyberknife is in an NHS hospital you still have to either go private or be referred and hope your local PCT fund it, which at the moment is very unlikely to be funded for CC. Somebody purchased the machine for them as a gift.
Hopefully though the one at the Royal Marsden will be for NHS patients at no charge.
We are going throughthe process of Cyberknife for Dad and it’s been a complete nightmare so far. First scans were broken and second scans have been lost in transit. Dad has missed 2 MDT meetings and it looks like he’s going to miss another. I feel like I’m hitting my head against a brick wall.
Back on phone today chasing more scans to be resent.
Hope you and your family are all ok.
Best wishes
Andrea
