Update on my Dad
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Hi Andie, My husband has been getting the full feeling just lately too. Have your doctors given your Dad any suggestions on what causes this or what can be done to be more comfortable? He is not eating very much either. He’s actually lost a quite a bit of weight, but has to be on a low fat diet too. So hard to figure out what to do for him. Hang in there! Jenny
Hi Andie
I am sorry to hear that you all had a difficult weekend. Is there anything the doctors can give your Dad for the full feeling ? As for friends visiting, that must be such a tough one. I don’t know if it’s a difference between men and women but my Mum seems to have visitors all the time, and she does like it as they help take her mind off things. Of course the first time she sees them it’s hard but then they start reminiscing and thinking about good times, which gives her positive vibes even if it’s only for a few hours.
I am annoyed for you about the scan issue. I know that when I was trying to get second opinions etc for Mum earlier in the year it was very difficult getting scans on disk to send elsewhere, in time for MDT meetings. It seemed like there was no hurry to them. At least it sounds like the scans will be sent quickly this time….even if it is due to a misunderstanding. I really hope that they get to CK in time for this week.
My mum is napping more and seems to accept it, but she is keeping busy at home and in the garden as much as she can. I think at this stage there is nothing worse than giving up totally. Even small achievements can make a difference emotionally.
I hope that you are looking after yourself as well.
best wishes
JemimaHello 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
Hi Andie. Sorry to hear about the weekend but I feel as you progress dad will allow visitors. I don’t see it all as denial, I see it as giving himself permission to do things. EX: Teddy never wanted to stay in bed all day and all of a sudden one day he announced he was going to try something new. He was going to stay in bed for the morning. I saw that as he, giving himself the right to do it. Can’t explain it, perhaps its a man thing. The full thing goes with the territory. I have asked T to describe the feeling and he really can’t, just says he feels full and he has nothing swollen either. On the C.K. you know we are strong fans of it but there are limitations to when they will do it. If you have not googled C.K. do so as it explains a lot. Extremely interesting as well. Stay strong and you will see dad come around.
See this is one of the ridiculous things about the nhs-the right arm doesn’t know or care what the left arm’s doing. It makes me mad when this whole process could be made easier for your dad. You’re really pulling together and I bet your dad is so proud of you all. Is your mum handling things any better?
Since your dad can’t do the physical stuff any more is there something he could do to stop him feeling useless? I always struggle to stop my dad from doing heavy lifting even when he’d just had surgery, but I learnt to ask him to help in a different way, reading to my baby, taking photos, doing things online. Gavin’s dad had his horse riding, perhaps your dad will have to visit b and q once a week?
Thinking of you all and hoping you can make some happy memories during this sad time xThanks 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’.
Hi Andrea,
An emotional weekend indeed. I can understand why your dad didn’t want to see his friends but I do hope that he will see them at sometime. My dad’s friends that he had going back to the 60’s came to visit my dad quite a lot and this did a lot for my dads mood. Sure there were some tough visits, especially when they came to visit my dad in the hospice but my dad always felt better after he had seen them. The 3 of them were in a band here in the 60’s, so they had a lot to talk about and the stories used to flow!
As Kris says, that full feeling in the stomach is quite common and my dad had that also, along with his continual napping during the day. It used to annoy him as well taking all of these naps, but I always thought that if he was that tired then he should sleep and he was not one for ever taking naps before his CC was diagnosed.
My best to you and your dad,
Gavin
Andrea,
That full feeling is very common with cc. So are the naps. I indulge in naps regularly. It upsets me but I need them so what can you do.I am glad you are looking into cyberknife. Let us know how it goes.
Hang in there.
KrisDad is still putting up a fight.
His bilirubin must now be at least 400 (40) or higher. He is taking a nap in the afternoon for about an hour and sometimes he is breathless. My husband took him to the local B&Q the weekend and said he wasn’t breathless once whilst walking round there. My Dad loves B&Q and could spend hours there!
It was emotional weekend though. My husband and son made a start on making Dads garden less high maintenance for my Mom. Dad has always loved his garden and has always been our helper, so having to sit back and watch upset him. Then one of his friends phoned as all his old friends had heard what was happening and wanted to let him know they were thinking of him and wanted to visit. Dad said no to the visit as he doesn’t want to see anyone apart from family and close friends. Mom said Dad had a good cry and said he doesn’t want to leave us and doesn’t want people to remember him like this.
He is starting to have a full feeling in his stomach but he said it comes and goes. Has anyone else any experience of this? He is still eating well, though little and often but when this full feeling comes on he doesn’t want to eat. He said it’s not painful, just annoying.
Professor Lodge has said he can’t do anything for Dad. Our other second opinion for Cyberknife is proving troublesome due to CT scans being damaged and lost in transit. I have requested them to be resent myself from a different department, to my suprise the secretary agreed to send them asap without asking for a referral letter etc, think it was a mistake on the secretarys part as I was only phoning to get her details so the QE hospital could contact her, but as long as they are sent I’m not bothered.
Fingers crossed they send them and they get there in time for the MDT next week, if not it’s another 2 week wait.
Best wishes to all
Andrea
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