October 11, 2009 at 2:46 pm #31759lainyParticipant
Hi Gavin and thanks for the update. Certainly good to hear dad is feeling a tad better. His day care group sounds wonderful and as long as he keeps up with that it is a good sign. You are such a wonderful compassionate son, a good person. Millionaire shortbread sound mighty tasty. I have gone with my gut feelings for over 4 years now with Teddy and so far they have not failed me. Guess I have the GUT Medical degree! Love your updates.October 11, 2009 at 1:47 pm #31758
Many thanks once again for your wishes, support and kind words. My dads been in a bit better mood the last few days, even managed to stay out of his bed yesterday afternoon! Went back in the evening after his tea but thats better than all day! He had a good day on Friday at day care, had some laughs and they all did some baking so he came home with some cakes, millionaire shortbread, tasty!
I spoke with one of the gp’s about everything and they are waiting for the blood test results and will look at the calcium, pottasium and ammonia levels. Pain meds have been upped from 6 solpadols 3 times a day to 8 tablets 4 times a day every day. They want to monitor how he does with this for a bit and may then look to change the meds to something else if need be. Just a case of waiting for the onc’s app, so more of the waiting game.
Glad to hear that you’re feeling up to and writing again and I hope that your blogging is doing you some good. How’s your sister doing just now?
Thanks for sharing your experiences of helping your dad make decisions, that cant have been easy to do for him. My dads not the greatest of talkers so it sometimes takes a bit of digging to see what he’s feeling and thinking. I like what you say about just going with your gut instincts in all of this. I guess thats what I’ll try and do, that and getting him to open up a bit more.
Thanks for lighting a candle for us all.
I’m sorry to hear about your dads dementia and diabetes, that cant be easy to deal with. I worry about dad spending so much time in his bed and how that can affect him physically, I wouldn’t have thought that spending that much time lying down can be good for the body. I guess that a chest infection needs to be added to the list if things to look out for.
Thanks for the advice on the protein shake. That is definitely something for me to look into as his specialist suggested soups as they are easy to digest. I like to make soup and dad loves soup, especially in this weather so pea and ham soup sounds good! I’ve never made smoothies either so that is also something to consider. Many thanks.
My thanks once again for all your support and my very best wishes to you all.
GavinOctober 9, 2009 at 9:18 pm #31757valjeeMember
I am sorry to hear about your dad. Hopefully when you’rve seen the onc & have more info he will be able to get his head round the options. It’s good that he’s continuing with day care.
His confusion must be a worry – my father has vascular dementia (in addition to insulin controlled type 2 diabetes) and although is not always confused per se, it can be a real challenge to tell when it’s the dementia or if he’s having a hypo. He also sleeps for up to 20 hours a day.
Bazel is right to watch for UTIs & likewise chest infections which are also notorious for confusional states. It has been known for dad to have a chest infection when he hasn’t been coughing – strange but true! The hydration advice is very sound.
On his need to increase protein intake, a suggestion, I use a pea protein powder from a company called Nature’s Best in Tunbridge Wells. They have a very efficient mail order service & online ordering. Their advisor service is excellent, they don’t try to recommend anything you don’t need – remarkable in a retail company!
I use the powder in smoothies, both fruit (where it can affect the tase a little) & veg juices – I liquidise various juices with an avocado & the powder. It’s a very easy product to digest & can be put into allsorts of soups & other liquids though I’ve not used it like that yet. It’s not cheap, aboutOctober 9, 2009 at 4:38 am #31756daddysgirl-2Member
Gavin, just wanted to send best wishes and good thoughts for you and your parents. I remember that it wasn’t easy to hear that chemo won’t get rid of the beast, just slow it down…but my dad was all for it, and tolerated it pretty well. He always thought…just maybe—! Like your dad is looking to you, my dad also asked me to make some of the decisions, I just went with my instincts as to the changes he experienced…and encouraged him to share feelings, desires, etc with me. It created an amazing amount of personal conflict…not only because it could be life altering…but, because it would affect my wonderful dad.
You have it inside of you to do what you must do. Your parents must be extremely proud to have raised such a loving, compassionate man. You honor them.
My very best to your parents; they will be in my prayers. I will light a special candle at mass tomorrow for your strength.
Peace be with you and your family,
JoleneOctober 7, 2009 at 10:37 pm #31755lalupesParticipant
I’m so sorry your dad’s having such a bad time, Gavin. It must be very hard for you all to have had such unwelcome news. You’ve been very much in my thoughts recently, although I’ve been finding it hard to write very much lately. I’m sending loads of good wishes your way for you & your whole family.
Julia xxOctober 7, 2009 at 9:36 pm #31754
Hi Bazel, Marion & Kris,
Many thanks for your kind words and support, it means a lot to me. My dad was a bit more upbeat tonight which was good to see, big improvement from earlier on today. Pity his last horse riding lesson was last week as that would have helped take his mind off things for a while. I think whats maybe best just now is to wait and see what the onc says then take things from there. So I guess it’s more of the waiting game untill then!
Thanks for your advice. I will speak to dad in the morning about UTI and tell him to keep a close eye on things and let me know immediately of anything at all that may need further checking. As to his potassium levels, I will try and see his GP on Friday at day care and mention that to see if we can get that looked at and will also try and get him to drink more. Instead of asking if he wants a drink, I’ll just give him one! I’ll stress to him the importance of keeping hydrated so that should do the trick.
Thanks for that. I will look into the results of the study. I remember you posting links regarding it on the chemo board earlier this year. You are right in that we will get more info once we have seen the onc, and I would like to do some more reading before we meet so I can have any questions ready. My dad is sort of looking to me just now for advice on what to do here, but I think it best to see what the onc says before making any decisions. Although, if he was able to start chemo then stop if it got too much then that might sway his decision to try it. And yes he most definitely will have my support in what ever decision he makes regarding this.
Thanks, positive thoughts are also coming your way. I hope you are feeling a bit better today and are ready to get back on with the Swedish lessons!
Many thanks to you all once again and my best wishes to you also.
GavinOctober 7, 2009 at 8:11 pm #31753devoncatParticipant
Sending warm hugs and positive thoughts to you and your dad.
KrisOctober 7, 2009 at 5:38 pm #31752marionsModerator
Gavin….yes, this is the latest study. Dr. Valle (U.K.) was the lead investigator. Of course, chemotherapy treatments can be stopped at any time. But, much more information will be revealed at the upcoming visit with the oncologist. Gavin, you are a wonderful son to your parents. The decision of further treatment vs. palliative care is a tough one to make for your Dad. But, he knows that you will support him whichever way he chooses to move forward. You have my highest admiration.
Bazel also brought up an important point that being to increase the fluid intake. I forgot to mention this.
All my best wishes coming your way,
MarionOctober 7, 2009 at 3:23 pm #31751BazelParticipant
Sorry to hear that your dad’s appointment was not as positive as we all hope for. Your love for your dad and mom is quite clear in your words and actions.
I am a little behind in chiming in on your original thread, but I wanted to add a few more thoughts your concerns about dad’s confusion. Along with calcium and amonia – dad’s potassium levels should be checked as well. Also, even a hint of a UTI can bring on confusion so be alert to that as well. Lastly, staying well hydrated is important too. I know its quite that daily battle sometimes to get enough fluids on board – especially if there is any fluid retention happening, but do try.
BzOctober 7, 2009 at 1:08 pm #31750
Many thanks for your post and the information in it. The chemo suggested was definitely Gem and Cisplatin also I think but I’m not sure, we will find out more when we meet with the oncologist, hopefully very soon. The study you mention, was that the one that came out earlier this year? As to the issue of extending live versus quality of life, I think this is something that we will have to discuss very carefully and weigh up the options once we have more information. I realise that each person can react differently to chemo and it’s effects and it’s not something we will know how dad reacts to the drugs until he starts. If someone was to start the treatment, would it be possible to stop during the course of the effects were too severe?
Thanks for the tips on enzymes, proteins and digestive issues and I will look to increase the amount of protein that he eats. Lately, dad has been going to bed after his meals so I will suggest to him that he tries to move around for about 30 minutes as you say or go for a short walk or something. Then if he’s still tired he can go to bed then.
The solpadols seem to be doing their job right now, he takes 2 in the morning, afternoon and then before bed. However, I may see if these can be changed or increased in strength if the pain gets any worse.
I was speaking to dad this morning about yesterday and as soon as I started talking he started getting upset, so I’m not sure if we should discuss options more before seeing the onc or wait until we see what his options actually are. He goes back to day care on Friday, so I think that it might be a good idea for him to speak to the GP there. As ever with all of this, there seems to be no easy answers.
Many many thanks.
GavinOctober 7, 2009 at 6:10 am #31749marionsModerator
GavinOctober 6, 2009 at 4:45 pm #31748
Just back from the hospital, not the news we were wanting to hear. The cancer has grown since the last CT scan in April. The specialist is arranging an app with the oncologist, hopefully for next week to discuss chemo and to assess dad to see if he is even fit enough to handle chemo. Mentioned gemcitabine I think and another drug but I forgot which one. Asked dad how he felt about chemo and dad said he would try it if it would get rid of the cancer, but was told that at best it may slow it’s progression down. I think dad was thinking that chemo would stop it in it’s tracks, but that does not seem to be the case. As you could imagine, he was pretty gutted so I was trying to make sure he was okay and talk with the doc at the same time.
Checked dad for jaundice and saw no signs of it at all and said that if we were going to even try chemo then now would be the time to do so as if the jaundice comes back then we wouldnt be able to even try the chemo. Took more blood for tests to look at calcium and ammonia levels so waiting on results for that. Doc says that the pain dad is getting is most likely related to the spreading of the cancer and asked if the current painkillers, Solpadol worked with the pain which they do so these are not getting changed just now.
Has a bit of bloating around the stomach area which I think is down to the cancer growing around a tube leading off the stomach I think. Says that fluid is getting down the tube okay but food not so well so advised a change of diet a bit and to eat less but more frequently.
Asked about what comes next treatment wise if we don’t do chemo or if we do and that doesnt work, but there is no other treatments to try. He wants dad to keep up with going to his day care twice a week just now as the GP’s up there will be monitoring him closely. Also wants us to get in touch immediately if any signs of jaundice or fever etc.
Talked about the tiredness and quality of life and wants dad to think about whether he wants to try chemo etc before the meeting with the oncologist. I always thought that dad would try it if offered, but not so sure anymore. Coming home in the car dad didnt say anything really as was too upset. Right now he is spending all this time in bed as it is, so I guess that the side effects of chemo will only make time just now even worse for him physically. i think he’s thinking is it worth going through all of that for something that might only slow it down a bit. Anyway, will just have to wait and see what the oncologist says first.
Thats pretty much how the app went, might have missed some stuff out as trying to make sure dad was ok and talking with the doc at the same time and remembering everything that was said was not too easy to do. He went straight to his bed when he came home so i will see how he’s feeling later when he gets up.
GavinOctober 6, 2009 at 1:13 am #31747ashleyParticipant
I hope your dad has good news tomorrow. My thoughts are with your family.
AshleyOctober 5, 2009 at 8:59 pm #31746
Thanks all for your posts. Today wasn’t really a good day, dad was getting all teary eyed at the thought of tomorrow. He tries to put on a brave face but I could see how upset he was getting. Last week he was keen to have this app and find out what is going on, but today he doesn’t seem so keen. It was just going to be the 2 of us going, but I think he wants mum to come also. She doesn’t really want to come as she feels it is too much trouble for me to have to wheel them into the hospital one at a time, as it is quite a walk for them both. As tom is Tuesday, dad is going to day care until his app so hopefully getting out of the house will help take his mind off things, for a few hours anyway.
Thanks for the info on calcium levels, thats something that I will ask about tomorrow. Dad has been getting regular blood tests at day care and they have not mentioned any problems with the results so far. I know if it helps with the fatigue and confusion then I’m sure dad wouldn’t mind a short stay in the hospital as this is really getting to him. However I can fully understand why your mum has had enough of hospitals!
It’s their wedding anniversary next week so I will try and encourage them to get out for a meal or something for that. It’s also my birthday on Saturday so I will speak to them about going out to celebrate them both at the same time maybe. Glad to hear that your mum is feeling a bit better just now and I hope she managed to enjoy going out for a drive and a coffee with her friend. How did she get on with her mistletoe treatment?
I was thinking of Jeff yesterday when I was watching the Patriots game on tv last night as I know he was a fan. If he believed in keeping the bowels clean then that is good enough for me! Yes my dad does have regular bowel movements. He takes Lactulose first thing in the morning and last thing at night. He spoke to his GP about this as he was getting a bit fed up with having to go to the toilet too much, so he was told that he could cut back to half a dose in the morning and the same again at night and that seems to be ok for him. Yes he’s eating a lot less these days, but he still enjoys his food, so I’m happy about that.
Many thanks for mentioning ammonia levels. I remember you talking about them before to someone else and I spoke with day care about them to my dad some time ago. They checked them at the time and they were okay, but it is something I will mention tomorrow again at the hospital and see what the doc says.
Many thanks to you all for your best wishes and support.
GavinOctober 5, 2009 at 6:59 pm #31745devoncatParticipant
I am sorry your dad is having energy and confusion problems. You might want to ask the doctor to check your dad’s ammonia levels as some people on the board have experienced confusion when it was not correct.
Best of luck.
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