December 2, 2009 at 11:13 am #31879magicParticipant
You are such a good ,caring lad Gavin love from JanetDecember 2, 2009 at 9:11 am #31878
Thank you for keeping us in your thoughts and for your best wishes. I am glad that the site and all of us have been of help to you and your family. I know that this was also of great help to me and mine. I’m sorry to hear that your mum is having a tough time right now and I know that it isn’t easy. But you are doing a great job in helping your mum and being there for her and your family through all of this. I am keeping you and your mum in my thoughts and I wish the very best for you all.
Thank you also for keeping my dad in your thoughts and for your good wishes. Yes this is indeed a wretched disease and is very harsh. My dad is doing his best in fighting it and I know that your mum is doing the same. I hope your mums doctors can get the stent issue sorted for her so that she can get a bit of relief with that. And I know that you will be strong for her and will be beside her through all of this.
I will see how dad is later on today, visiting does not start until 2.00pm and I hope he managed to get some sleep and keep some food down. I tried Bazel’s deep breathing technique last night. Don’t know if I was doing it right or not, but it seemed to help as I got a pretty decent 4 hours sleep before I woke up. Usually I get a bit less than that and wake up and get some more broken sleep after that, but last night was much better so I will be trying it again tonight. I hope it worked for you also Sharon and my thanks to you Bazel for telling us about this!
And yes I think I am going out for a curry tonight if I can and I know my dad will tell me to go. I think a Tandoori mixed grill sounds good to me!
My best wishes to you all.
GavinDecember 2, 2009 at 4:00 am #31877sharon_teammarianMember
I am thinking of you and your dad. This disease is so harsh. My mom had her stent replaced last week and I feel like we’re right back to the first 7 weeks she spent in the hospital after she was diagnosed. I’m really trying to be strong for her when she can’t be but it really is such a wretched disease.
I hope your dad’s vomiting gets under control soon – he must be so exhausted. I hope you managed to get out for curry (yum) and that Bazel’s deep breathing works (I plan to try it myself tonight).
Take good care.
SharonDecember 1, 2009 at 11:15 pm #31876lovemymomadParticipant
I feel like I know a lot of you because I read your posts often. I have asked several questions and shared my concerns about my mother under the general discussion area, which has been such a help and source of information. My mom is currently in hospice and my family and I are really having a tough time right now. Lately, I have not been able to spend as much time here. I just wanted you to know that you and your father are in my prayers and I hope everything goes well for you all.
LoveMyMomDecember 1, 2009 at 8:30 pm #31875
Thanks for that. I’ve never tried deep breathing for relaxation so I might give it a try, especially if it helps in getting a better sleep which I could do with really. Don’t you just wish that you could switch the mind off at night for bedtime! I spoke to mum earlier and she says I should go out with my mate for a while and it would only be for a couple of hours, so I’m gonna try and sort that for tomorrow or Thursday. I’ll have my mobile with me if she needs my quickly. She had a nose bleed earlier which she gets when she gets stressed now, which she used to get a lot when she was on Warferin.
I spoke with dads doctors at the hospice today and they are getting him started on a syringe driver for his sickness today. They are starting him on a low dose first of all and cutting back on most of his tablets for a few days. They want to give his stomach a break and think that he has not been getting much benefit from the tablets due to the vomiting anyway. It turns out that dad was sick 3 times as soon as he got to day care. But he still managed to eat some dinner later which he kept down. He also had a session of Reike so maybe that is the miracle cure for sickness!
The hospice docs are not going to do anything right now with regard to his fluid build up, they want to get the vomiting sorted first. And even if they do sort that, they are unsure if they will do anything about the fluid. I guess we will just have to wait and see. Dad seemed to be in a bit better mood when I left him. We had a long talk with the hospice doc, she was really nice and it helped to put dads mind at rest a bit. She also examined him and took blood so we will see if that throws anything up. I think dad realises that maybe it is best for him right now to be there so that they can try and sort the vomiting and monitor him for a while.
So the fight goes on and I am thinking as postively about all of this as I can.
Many thanks and my best wishes to everyone.
GavinDecember 1, 2009 at 4:32 pm #31874BazelParticipant
You have a lot on your plate right now .. but you need to be sure you are also taking care of yourself. I understand wanting to look after mum yet at the same time I feel strongly that some time with your mate will give you a few moments regroup and dare I say relax just a bit? How far away is the Curry House? Is there a neighbor you could ask to come and check in with mum while you are out? Would you consider hiring someone to come in to be with mum while you go out? At a minimum you could leave the phone number to the Curry House as well I am guessing you have a cell phone too?
Please do try to take care of yourself along this journey. I know I was (and am) too wound up to even think about something like meditation but I have found that 10 minutes of deep breathing can do wonders. I regularly practice my deep breathing when I first get into bed for the nightDecember 1, 2009 at 1:42 pm #31873
Thanks all for your posts. Dad’s sickness is not getting any better and I would say it is getting slightly worse if anything. A few times now he has not made it to the bathroom in time, which he gets really embarrased about, even though I tell him not to. Took him to day care this morning and we got a phone call from them telling us he has been admitted to Roxburgh House this afternoon. They said it is to try and get the sickness under control and monitor him for a while and he was a bit upset about that. But to be honest, it doesn’t surprise me that they have taken him in. Hopefully they will be able to do something about that and then we can get him home again as soon as we can.
I’m just away up to see him soon and take up some stuff and will go into day care before that to see the day care staff and se what they are saying. Hopefully they will also be able to do something about the fluid build up also whilst he is in there. On a better note, his 2 mates came to see him at home yesterday and he enjoyed that.
Hi Patty, thanks for telling me about what happened with your mum, much appreciated. I should find out some more today about dad when I speak with his docs.
Hi Marion, I had a look for posts on paracentisis and will go through them again in a bit more detail later. I never knew the right word for it so thanks for that. I will let you know what dads docs tell me and what they plan to do about it. I guess that you are right in that draining, along with everything else to do with CC varies between each person.
Hi Julia, I hope your blood pressue is okay just now! Never got a monitor myself, but think if I did I would be checking it all the time. Due to see the nurse again next week but can’t imagine it has come down any just now. Also got the builders in at mine just now for the bathroom, but it’s going okay and I just leave them to get on with it. Hopefully they will be finished by Thursday or Friday
I dont think we have the swine flu jabs available right now for all, although my wee cousin got hers a few weeks ago as she works in a care home. She also said her arm was really sore for a while after it and she is used to needles and stuff. I hope yours is a bit better today!
Hi Lainy, sorry to hear that Teddy is not so good right now and that he spent the weekend in bed. Is he feeling any better just now, and how are you doing? I’m sure that everyone will understand that you don’t want people staying over any more, but I hope you will still be seeing everyone, as I;m sure that it does you both good catching up with friends and family. Good luck with getting things organised with the Radman and Teddy’s pet scan. As always, I am keeping my fingers crossed for you both.
I had planned to catch up my mate this weekend, not for a burger but for another Indian curry as we have buy one get one free vouchers for the curry house, and the plan was to also go for a burger next week. But I will have to see what happens with dad right now. Mum says I should go but I dont like leaving her for too long on her own, especially in this cold weather as she is finding it harder to breathe right now. And the temp took a bit of a dive overnight here, need to de-ice the car now in the mornings!
Many thanks as always everyone and my best to you all.
GavinDecember 1, 2009 at 1:18 am #31872lainyParticipant
Hi Gavin, sorry dad is not feeling much better. I know that for him NOT to eat at Day Care is like the world to stop spinning. We had a nice Thanksgiving, although Teddy spent the weekend in bed a lot (and we had 3 guests staying here) with some temperatures on and off. Fortunately the guests did all the decorating for Christmas so that is done. For me? I have realized I cannot have people overnight anymore and just picking my brain for a way to tell them that the Inn is closed from now on. Its just not like us to have people stay in hotels.
Tomorrow I have to get on the Radman as nothing has been set up yet for December and T needs his PET Scan. I think rather quickly.
Hope your dad gets the drain done as I am sure he will feel so much better then. Stay strong, give yourself a little entertainment like a good burger!November 30, 2009 at 9:53 pm #31871lalupesParticipant
How is your dad today, Gavin? And – equally importantly – how are you!!? I’m sorry to hear of his sickness & fluid build up. I hope they’re getting this sorted & that he feels much better very soon.
I hope your blood pressure’s doing well. Mine has always see-sawed dramatically so I was advised to buy a home monitor & it seems to be much more stable when I take it myself.
I had my swine flu jab today, as my sister’s carer, & I forgot to tell them I’m left-handed so they could jab me in my non-dominant arm. Hopefully, my arm won’t feel so heavy & sore tomorrow. (I can’t believe I’m wingeing about a sore arm on a website full of such heroic people )
Julia xNovember 30, 2009 at 3:11 am #31870marionsModerator
Gavin….I recall reading some postings in where patients have been drained numerous times. In fact, by entering the word Paracentesis in the search function you can read up on the postings from others pertaining to this procedure. Not everyone though, speaks of multitiple drainings. Like everything else it seems to be vary from person to person. I am interested to see what your Dad’s physician will recommend.
My best wishes are coming your way,
MarionNovember 30, 2009 at 2:22 am #31869tiapattyMember
Thanks for your Thanksgiving holiday wishes and for the update on your Dad. My mom did not get drained because she really didn’t have that much fluid buildup, I think because she had 3 drains or maybe this is just something that is worse in some patients than in others.
PattyNovember 28, 2009 at 10:02 am #31868
I hope everyone enjoyed their Thanksgiving day celebrations, and ate a lot or turkey!
Dad had his scan yesterday afternoon. It seems that a lot of the fluid on his abdomen is building up on the right hand side and is pushing onto his stomach. The doc who did the scan thought that that could be one of the reasons why he is being so sick. The depth to the fluid is 2.0cm and the depth to the pool is 4.1cm. Not really sure what all that means, as I wasn’t there to ask the doc as he got the scan when he was at day care and dads memory is pretty bad, and he is not the type to ask a load of questions. But a report will be sent to the day care team and I think it is up to them whether or not they can do any draining. So we will have to speak with them Tuesday to see what they think. I spoke with dad about draining and he wants it done if it will help him feel a bit better. I understand it that if you start this type of procedure that the fluid will come back and further draining will be required. Is this correct? I said to dad that I thought this was the case and he still wants to do it, even if it means more draining to come.
Also, for his sickness, he was given yet another tablet, Haloperidol once a day, so his Metoclopramide drops back to 3 a day, with Buccastem still if needed. Yesterday he was sick at night as soon as he tried to eat some tea. He didn’t have any dinner at day care as he had the scan in the afternoon, so all he had to eat yesterday was some muesli in the morning which was more milk than cereal. Most days he eats slightly more than that, but not much and I’m worried that that little food can’t really be enough to get by on. His day care team know what his sickness is like so I guess we are really in their hands.
I hope everyone has a great weekend and my best to you all.
GavinNovember 26, 2009 at 10:24 pm #31867
Thanks for that. I’ve no idea if dads chemist delivers to care homes and does the big ring binder you mention, but I will look into it as that might help him. Many thanks for letting me know about it. It was Boots that took over the pharmacy I use a while back and they have mum and dads prescriptions ready for me just to pick up.
I know what you mean about having your own dispensary at home. One of their recent prescriptions consisted of about 7 different items for dad, a months supply of each and 7 weeks worth of Skandishake for mum! Thankfully I was parked just outside the chemist! I’m glad to hear that your mum is on the case and keeping your dad in line! On my dads last lot of Fluoxetine, that packaging had changed a lot and he got a bit confused as to that one.
We had a meeting with the Macmillan nurse today and she has ordered dad a bed prop thing to help elevate him a bit in bed. He has developed a bit of a cough now and she thinks it will help him a bit. She also thinks that his sickness could be related to the build up of fluid in his abdomen if it is pressing on to his stomach. Hopefully the ultrasound will shed some more light on that issue. I will have to keep a close eye on this cough as I’m guessing that one cause of it could be the fluid, perhaps going to the lungs. She is coming to see us again in 2 weeks time. Dad wanted 3 weeks between visits but I think she is looking to get 2 visits in before Christmas.
I am going to take some time for myself. I went into town this morning to get a winter coat but didn’t see anything good. But it wasn’t a wasted visit as they had the continental farmers market there for a week so I bought some food, then into Markies for some other delights! I’ve never watched Gavin & Stacey, may give it a try. Diversion therapy with food and humour sounds good to me!
You take care also and my best wishes to you.
GavinNovember 26, 2009 at 9:25 pm #31866valjeeMember
I’m really sorry to see all the new developments with your dad. At least he still feels able to take his daily walk to the paper shop, which as you say is some exercise for him.
Just a thought on the medication situation – do you know if your pharmacy supplies to nursing homes etc?
Once upon a time when I was still dispensing, Boots did a pre-pack system for homes (I thnk it was extended to individual patients after I’d left) which is like your folder system but bigger, so all medication for the morning would be in one blister, everything for lunchtime in another etc etc.
It comes on a ring binder type arrangement. It may be worth checking as this could be a help & should be large enough to accomodate most of the items. (except Solpadol – HUGE!)
I’m fairly sure some other pharmacies were taking on this kind of packaging but as they’re all busy taking over each other I wouldn’t like to say who does what these days! Your Macmillan nurse may well know if the service might be available for you.
My folks are on so much between them the kitchen cupboard is like our very own dispensary! If my mum wasn’t on the case with theirs I would try to get the blister packs cos even I would struggle with the regime. and my dad unfortunatley has no idea any more – he likes to drop his tablets in his cup of tea on a bad day…..or hide them under a scrap of bread – it’s a wonder his blood glucose levels stay so good!
On your blood pressure, do take some time for yourself – all of this can be an absolute nightmare & even when you think you’re chilled it’s all going on in your head. Diversion therapy is always good. Curries are particularly good!
I’m currently watching Gavin & Stacey – that’s very good diversion therapy… so funny!
You take care, keep your wooly hat on against the cold, best wishes, ValNovember 26, 2009 at 12:01 pm #31865
Dad this morning is in a good mood, got some sleep and has been sick a little bit, but not as much as last night. As usual, he persists in going out to the shop first thing to get the paper, even when it is as cold as this! I guess is he wants to do this it’s okay as it gets him out for some fresh air and a bit of a walk.
Hi Lainy. Yes we all never hoped to have to become this knowledgeable about CC, but as you have said before, it is better to know more, and I agree! I hope your srtess test on your heart was okay. I know I need to take some time for myself, and I did manage some last night. I met up with a friend for a couple of hours and we went for an Indian curry, was most tasty indeed.
I;m sure your Turkey will be delicious, and receiving one with the fixins by Fed Ex would be lovely. I hope you will enjoy yours today! I assume that fixins is all the food that goes with the turkey, and here we would say the turkey and all the trimmings! As always, I am thinking of you and Teddy.
Hi Marion. We are trying to make others foods for dad to eat, softer things that are easier to digest, such as omlettes. I know that dads tumour once it was spreading was growing around a tube from the stomach and is causing some blockage there, the specialist told us that a while ago from his last CT scan. It is strange, as sometimes he is not vomiting so I would assume that sometimes he is able to digest his food, but other times he can not. Thank you for the information on nerve endings and motility, I think I will need to speak withs docs about this when I can. His specialist also suggested eating smaller meals, but eating more often as this may help his digestion. But the trouble with this for dad is that he spends so much time in his bed that sometimes he misses meals then eats when he gets up, then back to bed.
I know I have talked about Macmillan nurses before here and I do know how fortunate we are to have the services of them. I would say to anyone suffering from any type of cancer to take their help if offered to themselves and the family. I know that once cancer is diagnosed, you have to be referred to them through the hospital or your GP. In my dads case, they came to see him on the ward to get the procedure started and even filled out forms for him so that he could put in his claim for his disability benefit. What I think is also important in what they do, is that they can liase between patient and all their medical team, various docs etc. And I know from speaking with dads docs that they all listen to what the Macmillan nurse tells them regarding everything to do with the patient. Plus the phone help line is also very good where you can speak directly to a nurse at most hours of the day, which I have used 3 times.
I will take some time each day for myself, and coming here each day is of great help to me as well.
Hi Darla. Thank you and I am trying to keep on top of things and I will take some time for myself. I am going out again next week with my friend for something to eat if I can make it. He knows whats going on with me so if I couldn’t make it then he will understand. But it is good to get away for a bit and catch up and talk about other things with him. Plus it is good to get out for a bite to eat and is a break from the norm!
Many thanks to you all. I hope you have a great day, eat lots of turkey and the fixins and enjoy yourselves.
My best wishes to you all.
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