So frustrated – need to vent!!
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Thank you all,
I do feel better after my vent, things just got to me yesterday.
Deep down I know that nothing else can be done and we are going to lose Dad within the next few months. I still hope and pray I am wrong. He has been amazing through all of this but you do hang on to the only thing you’ve got, hope.
Gavin, Thank you for your kind words. I think it will be hard for my Dad just to supervise! I think we are going to have to be strict with him. He is not up to digging gardens and I don’t want him to do too much. In his mind he still thinks he’s up to it but his body tells a different story. He is still eating little and often but the meals are becoming smaller as he says he feels full most of the time. The soup is now eaten with no bread and he is no longer having fruit and ice cream after his meals. But at least for the moment he is still eating, and he is drinking at least 3 litres a day.
Lainy, I will be keeping out the way whilst they are doing the garden. My Dad, my husband and son, all together, well it would be fun to watch. I will probably take Mom out and then do my mountain of ironing, not so fun.
I hope Teddy is still loving his new bed and his pain is under control. I think of you both often.Patty, thank you for your comment, I totally agree.
Best wishes to all.
Andie,
Coordinating medical care and communicating with health care providers can be a full-time job and is very overwhelming and frustrating. It does seem like often the system is not very efficient, I mean, I accept that advances in medicine take time and research but it seems like the organization of care could really be better and would lessen the stress on the patient and caregivers.
Patty
Hi Andrea,
Vent away, that is what we are all here for! And having a good vent helps make you feel better after all! But I do have to say that I so agree with your dad and your husband in that you are doing everything possible to help your dad here, and I do mean that you are doing everything possible! So please stop beating yourself up over this. I know how frustrated you must be about all of the troubles with your dads scans, but again I agree with what your husband says in that you were not to know that this would happen.m I am sorry to hear that you are having yet more problems with the scans and I so hope that this problem can be resolved very very soon!
Hopefully next week this issue will be resolved by Prof Lodge and that he can do something for your dad. I’m very glad to hear that your dad is getting around the house and stuff, and that he is eating. Small meals more often was also what my dads specialist told him to do, that and also eating foods that were more easily digested like soups and mince etc.
Hmm, dads giving orders? Sounds very familiar to me!!! I am sure that your husband will do an excellent job with the gardening and also that your dad will approve of the work done. After all as you say, he will be supervising it all!
If you need to vent again then we are always here for you.
My best to you and your dad,
Gavin
Hi Andie, feel better? Vent all you want. Sometimes we feel isn’t it enough to have this CC then to have road blocks thrown up all over the place adds to the frustration, so we really understand. I think I told you Teddy had Cyber Knife and I don’t think they will do C.K. unless they are absolutely positive it will help.
Good luck on everything and try to take a breather over the weekend. Sounds like your husband and dad will be busy. The Boss and the Bossee!Hi all,
It has been nearly a month since we have sent our referrals for Dad and everything that has gone wrong has.
Professor Lodge from Leeds has been great. The scans have been sent to him but they are having difficulty opening all of them. They have been sent 2 sets and they are still trying to open them all. I’d have thought NHS to NHS would be easy were scans are concerned but apparently not all systems are the same and they have to be encrypted. From the cholangiogram that he has managed to open he has said things aren’t looking good but he will finalise this when he looks at the other scans, hopefully next week.
The Cyberknife centre have recieved their first set of scans broken. They claim not to have recieved a second copy even though the QE have sent them. We are now hoping Dr Gaya can look at Dads scans via PACS at Guys Hospital where he also works. If not I have a week to contact the Hospital where Dad has his CT scans and see if they can re send a copy on time for the MDT meeting which is in 2 weeks.
Dad has told me not to worry he knows I am doing my best, but I feel I am not doing enough. He has also said if they can’t guarantee the bile will flow after the cyberknife than he doesn’t want it as
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