Update on my Dad
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Gavin……The good days at the center are so very important for your Dad. I am glad that he enjoys it so much. I have a few questions: Did the GP suggest a diuretic for the fluid retention? Also, elevating your Dad
Hi all,
Spoke with the GP at day care today and turns out that dad was wrong about the meeting this week. It was actually a meeting with the medical team at the day centre and not the team at the hospital. He got confused over what meeting it actually was so I’m going to phone his specialist on Monday to see whats going on. Would have done it today but dad was at day care all day and he needs to make the call so that I can speak to them on his behalf.
We did speak with dads GP at day care and had quite a long meeting with her though which was good. Dads blood test results from earlier this week came back and the results are not too good. His billirubin levels are up again since the last test and tonight I noticed that his arms are getting darker. He also has a rash today or what dad thought was a rash on his calf which is swollen. The GP took a look at it and thought that it looked like he had been scratching there so it seems like the itching may be coming back. His albumin levels are low which seems to be causing his lower legs to swell and his white blood cells are also low. He was also prescribed new tablets to help with the vomitting.
So, not the meeting we were expecting today. Dad was full of apologies but it’s not his fault as he still gets a bit confused but i need to chase things up on Monday. So more of the waiting game again over the weekend! At least he had a good day at day care so when I picked him up he was in a good mood.
Julia,
That is great to hear that your sister is so full of energy! From being so tired to being hyperactive all in a few days! I’m guessing that she likes being hyper more than she does being tired!
Lainy,
Yep it was seriously cold here this morning, just above freezing. Waaay to cold for my liking, especially first thing in the morning and it is very cold again tonight. I guess winter is finally here for us now and it wouldn’t suprise me if I have to start scraping the car window first thing in the mornings now! Hope you and Teddys 2 for 1 meeting went well today.
Best wishes all.
Gavin
Oh, thanks, Janet!! They do give her something for the 3 days post-chemo. I’ll have a look & see what it is.
I hope you’re okay. Jx
Could that be from dexamethasone?They often give it for a few days after chemo and it gives the energy but can cause sleep problems too Janet
That’s fantastic – thanks very much for the info & the offer!! We’ve discovered a new side-effect after this week’s chemo … HYPERACTIVITY!!! No doubt the “wall” will come up & hit her over the head sometime but it’s great to see her so full of energy.
How’s your dad today??
Jx
Hi Julia,
Glad to hear that your sister is coping well with the chemo just now, long may that last! That is indeed great to hear that she is optimistic about it all and it sounds like she is really up for the fight here. No doubt you are also doing a great job in being there for her along the way.
When dads nurse talked to us about day care she did say that it’s not for everyone. What we did was go up for a visit for a short while just so dad could see what it was like. Nothing ventured nothing gained and all that, and we got to speak with some of the staff etc and see how friendly everyone was and what they did there all day. I know what you mean about getting freaked out at the thought of it, dad felt a bit that way also but it really has worked out so well for him.
Obviously I can only relate to dads centre, but the people there are really friendly, warm and there is a great atmosphere, lots of laughing and joking. I don’t know if it would be the same in London, but up here there are volunteers that will pick patients up from home and take them home again each day if they can’t make it there on their own. I drive dad there myself as it saves the volunteers having to pick dad up, and it means that if I go then I can speak to the staff about anything. It really is a very informal setting and I think it’s great to have such close contact with the medical staff.
If there’s anything specific that your sister wants to know about dads place then feel free to ask and if I can help I will.
Best wishes
Gavin
Thanks, Gavin. She had her second chemo today, which finishes her 1st full cycle. She seems to be coping well with it, so far – just very, very, very tired. She’s really optimistic about it, which is wonderful.
Her Mac nurse talked about a local day centre on her first visit, which freaked my sis out & really depressed her for a few days (because it brought home to her the seriousness of what she’s got), but recently she’s been talking about getting more information on it as she’s heard how good the centres are. I’ll tell her about your dad’s experiences at his centre. That’ll give her a boost.
Hi Lainy,
Well you can have all of our recent rain if you like! We have had localised flooding here over the weekend, I don’t think we have ever had 2 months without any rain ever!
Yes it’s the Kodak procedure they were talking of doing. I will have to tell my dad that you call it that! Sounds like Teddy is making some good plans for Xmas with his village and what a great idea to build it in front of a mirror so it doubles in size! Very smart indeed. I’m sure it looks great. Yes the waiting and not knowing is a pain and always plays on the mind as you will know. And you are right in that once we have more info we will hopefully all feel a little better.
Hi Julia,
Yep the day care centre is great and the patients all seem to love it. There was a newcomer there last week and he was telling dad that he couldn’t believe about the food and the choices of food there. Said he felt really spoiled by everyone as all the staff and volunteers make a great fuss of all the patients. During the summer they grew their own strawberries and they went down a treat! Can’t praise Macmillan enough for what they provide.
Hows your sister doing just now?
Best wishes to you both.
Gavin
Wow, Gavin – your dad’s day-care centre sounds great!!!
Very best of luck with today’s meeting & Friday’s results. I’ll be thinking of you.
Jxx
I apologize. I thought you meant surgery to go inside. Now I understand, it’s the Kodak!
That Day Care sounds just great. No, its not raining here. I think it’s been about 2 months and we really need it.
Teddy just built his little Xmas Village. He likes to get a head start. He has downsized as his other village was 8′ by 4′ and was on a table just a little smaller than a Ping Pong table. . Too much for him now. So we went small and in layers. He does it in front of a mirror so it looks bigger. These Sicilians are so innovative. Let us know what the doctors decide to do. I think once they come up with a plan you will all feel a little better no matter what they decide. The now knowing is just awful. Stay in touch.Good morning Lainy, it is the early afternoon here just now, and it has finally stopped raining after about a week of continuous rain! I’m guessing that it’s not raining in Phoenix! The SEE food diet does seem to be a bit popular doesn’t it! Glad to hear that Teddy is eating though, and hopefully enjoying his food!
The problem at day care is that there is a volunteer cook who comes in on Tuesdays and Fridays and she is an excellent cook and her work is in great demand by all the patients! Day patients have the choice of food that is provided by the hospital if they want, or they can have food that the volunteer cook makes. As you can imagine, it is an easy decision for the patients to make! She also takes requests each week for the upcoming weeks menus so patients can ask for anything they want within reason and she will do her best to cook for them. Also, they do a lot of baking in the centre with the patients so not only is the smell so enticing, but there are always plenty of delicious treats for all! One week she even made cullen skink soup, a Scottish fish soup and that went down a treat. Yesterday dad came home with pancakes he had made and last week they were making carrot cake.
Last week the Onc said to us that he wanted to see what was going on inside to at least see if chemo may be an option if they can get the jaundice sorted, but the decision to do so or not is down to dads specialist I think. The last CT scan dad had was Sept 29th so was before the jaundice came back so Im guessing thats why he wants to see if they can go in with the camera again.
Best wishes to you and Teddy
Gavin
Good Morning Gavin, or in your case good evening. When will these guys realize they just can’t eat like they did? Teddy is on the C Food Diet. He SEE’s food and eats it! Sounds to me like dad is pretty much holding his own. Why would they have to go in surgically again? Can they not tell from a CT Scan or PET Scan? Hoping for good news for all of you.
Hi all,
Just a quick update on dad. His onc and specialist are having a meeting today to see what the next step will be in his treatment, so we will find out Friday at the latest what the outcome of this is. Hopefully they will be able to go back inside and take a look to see what is actually going on and then take it from there. He got more blood taken yesterday at day care so we are also waiting to see what that reveals.
His jaundice is still there, but not in the eyes, or at least that I can see. His urine is still dark though but no itching. He has been sick twice, but each time he was bringing up food and not bile and it was after he came home from day care so I suspect that he has eaten too much there and his stomach is not used to that much food now. His lower legs have started to swell up a bit and his GP at day care knows about this and wants to monitor it just now before starting any tablets for it. Dads Macmillan nurse also came to see him at home on Monday and wants to come every 3 weeks from now on to monitor things. She asked dad if he wanted her to do this and he does.
Thats about it just now, just a case of waiting to see what todays meeting throws up.
Best wishes all
Gavin
Good morning to you too Lainy.
And a very happy birthyday to Teddy!! Please do pass on my best birthday wishes to him from me. 77 years young and he can still annoy you! I do hope that the 2 of you will have a great day and do something very nice. I’m sure that he loved your letter even more than a card and even if you had included his annoying points I’m sure he would have still loved it!
That sounds so rational that when Teddy developed his itch you would assume that he had indeed developed an allergy as you say. Who’d have thought it would be the start of all of this! My dad was the other way round, first the yellowness in the eyes and the skin, then the itching, lots and lots of itching! That wait between getting the news about the billirubin and getting home must have been a nightmare. Thanks for the heads up re Darma, I will keep that filed away in case the dreaded itching starts again.
Yes dad was good this morning, seemed chatty and not too downbeat and mum said he was okay last night. Thought he might get a bit upset when we were talking to one of the nurses at day care today about what happened yesterday, but he was okay when I left him. Just as I was leaving, one of the volunteers walked past with a big plate of toast for the patients and dad homed in on that, so he was happy!
I hope you and Teddy have a great day and my very best wishes to you both.
Gavin
Good morning Gavin. You are so right about not seeing the Jaundice as we are too close to the situation. Teddy was itching for 2 weeks and we were thinking he developed an allergy but nothing was helping. We were going to visit our kids in Milwaukee and I told him he should probably get a blood test and that was on a Wed. we left that Friday. That night his doctor called us at my son’s house and said his billi rubin was elevated and to come see her when we got home (2 weeks later) The very next day he bloomed totally yellow. So, here we are 4 years and 3 months later and today is his 77th Birthday. I felt bad as I cannot drive yet so couldn’t get a card or anything. So, I wrote him a letter about his being the love of my life and what a good man he is. Oops I forgot to write how annoying he can be some times also!!!
Sounds like dad is doing ok and if the itching starts again we found that ice bags helps. We also found a cream called Darma, over the counter at most pharmacies. You should not take it for more than 2 weeks as it’s very strong.
Hope dad keeps up the good days.
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