Update on my Dad
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Gavin,
You seem to be doing a good job and with all the good advice from Marion, I am sure you will keep on top of things. As for you, I have to agree, you need to take time for you and take care of yourself too.
Love & Hugs,
DarlaGavin….these gastro. cancers have a tendency to inhibit digestion. It had been suggested that affected nerve endings can cause motility of the stomach. But, there may be other reasons as well. Your Dad’s vomiting may be caused by inefficient stomach contractions and therefore, he might not be able to digest the morning and noon meals. I don’t know whether this changes anything but, you may try different foods or increase enzymes or, both. Thank you for the list of medication. You are so very right in that someone may benefit from your posting.
I had my very first meeting with a Macmillan nurse when attending the European Gastro. Conference with Pauline and I was highly impressed with what they do and how well they perform their duties. Indeed, you are fortunate to have this kind of support.
Take a few minutes a day just for you, Gavin.
Hugs
MarionHi Gavin. Don’t you just feel you have become a specialist in CC? Just what we never hoped for. Marion is right about the stress factor as last year my GP had me go for a Nuclear Stress test to make sure the heart was ok. As your dad’s needs increase you really do not think about yourself and you need to. Tomorrow as we all sit around our table celebrating Thanksgiving, I will give thanks to the many wonderful people I have “met” through our CC web site and am so proud to call them family. Wish I could Fed Ex a box to you with turkey and all the fixins. Always thinking about you.
Hi Marion,
Many thanks for sharing your thoughts and for your suggestions, they are most welcome as always. I did think that dads vomiting may indeed be expelling some of his meds, and it may have done so sometimes. His vomiting seems to be more in the late afternoons and evenings for some reason, perhaps food related and he takes the majority his tablets in the morning. I will mention this to his GP’s though to see what they say and I will also ask them about his overall meds and does he still need them all.
I also made a list for myself and mum to keep for his meds so that we are all singing from the same sheet as it were. I will list them here as it may help others. We got him one of those folder type compartment things with each day listed on the segment, but not all of his meds would fit in it now. I thought that a list for mum would be helpful for her as to now, she just left dad to take his meds as he was doing okay with it, but not so much now. Its also handy to have a list so that when the GP or anyone else asks what he is taking I can just pull out my copy.
Fluoxetine – 1 a day – Prozac
Propranolol – 3 a day – blood pressure
Metoclopramide – 4 a day, anti sickness
Furosemide – 1 a day – diuretic
Norfloxacin – 2 a day on an empty stomach
Solpadols – 8 a day – codeine
Ursodeoxycholic Acid – 3 a day, takes as he had PDT
Lansoprazole – 1 a day
Lactulose – morning and night
Buccastem – 2 a day max if required, anti sickness and disolve under the lip.
And he has cream for his rash where he had his itching on his calves, I forget the name of it.Quite a list and some have to be taken before food and some with food and some on an empty stomach, so it’s no woder he was getting a bit confused.
We have not talked with his GP as to the caring situation, but he is going to talk this week with dads Macmillan nurse who he sees every week. His Macmillan nurse is also due to visit tomorrow so we will no doubt be discussing care requirements and options. She is really good and will be coming to see him a lot more from now on if he stays at home. She will also be the person who sorts out and co-ordinates a lot of the services that dad will no doubt need. I know I’ve said it before, but I can’t praise highly enough the work that the Macmillan nurses and the organisation do!
My thanks as always Marion, best wishes to you.
Gavin
Gavin……..Another good decision: organizing the medication for your Dad. I don’t recall everything your Dad is taken but, it might be something you would want to discuss with the physician as to why all needs to be continued at the current level. When vomiting your Dad may very well be expelling the medication and possibly, it could be irritating his stomach. Just a thought Your Dad
Hi everyone,
Thanks Darla, we are also hoping for more good days. Today was not so good with more vomiting and dad getting confused with his tablets. So I made out a new list for him with what to take and what time to do so, hopefully it will make it easier for him as it was stressing him out quite a bit.
And today we heard that he is getting his ultrasound on Friday at the day care centre. I’m glad that it will be done there as he is there on Friday anyway and it means that we dont have to make another trip to the hospital. I said previously that I thought it was his stomach that was looking to be drained, but I think it was wrong and it is his abdomen they were talking about. So my apologies for that.
On a personal note, I had an app today with my hyper-tension nurse for a blood pressure check, it was 140/99 so I have to go back in 2 weeks to have it checked again. My urine test was good and I got a blood test taken. She couldn’t hit the vein in my left arm so had to use the right one and says I have wobbly veins!
My best wishes to you all.
Gavin
Thanks Wendy. Dad is a bit more chipper today and got some sleep last night and has not been sick today. He is at day care so hopefully he will have a good day there.
Sorry to hear that your mum is not too good just now. Hopefully she will bounce back a bit and getting the pain meds sorted will hopefully bring some relief there. I know before when my dads pain was on the rise that they would look at changing them to something stronger is the increase in codeine did not work. My dad had a real bad bout in April/May when the jaundice came back etc, and I dont think his docs thought he would bounce back from there to now. But he did come back and I hope the same for your mum. I will keep my fingers crossed for you all.
Thanks Kris. You are right about hitting the point where making things easier is needed and I will be doing my utmost to help dad with that. Yes hospice is scary and all that, but I know that some from his day care group have been in there for procedures then came home again so I think that makes dad feel a bit better about going in if he has to for getting his stomach drained or something else.
And yes you are right that none of us know what is around the corner and I am hoping that he will bounce a bit from here like he did earlier this year. His mood is a bit better today and we had a chat in the car going to day care about some stuff. I’m staying as positive as I can and coming here is, as always, a great source of support and friendship.
For that, I thank you all so very much.
Best wishes to all
Gavin
Gavin,
As the one with cc in my family, I can only imagine what must be going through your dads mind when hospice is mentioned. It must be so scary and final sounding. Although you are doing an AMAZING job, there is a point when you cant make things better, just easier. We never know what is around the corner. Who knows…your dad might rally and the pills might work. We have all seen both the expected and unexpected on this board. I guess I am trying to say, you are doing great and are a wonderful son. This is hard work for everyone. You are doing your best and we all hope we have someone in our lives like you when things go bad. Yet, I want to remind you that YOU are important too and you need to make sure you are getting the emotional support you need. You are burning the candle at both ends.Take care my friend
KrisDear Gavin, we are so very sorry to hear your dad has reached this point. Unfortunately it sounds like you are the decision maker. Honestly, I don’t think at that point I could handle Teddy at home and don’t think your mum is up to it either. I think, if you could see her taking care of dad, then ok, if not then it could be way too much for her to take any part in it. By the same token I would not opt to stay home as well if it was me. I just would not put that on someone else. But that is me. I will tell you like I tell my kids…make a list of pros and cons and you will get help your decision. I do know that you are the most wonderful son in the world!
Hi Gavin,
it’s sad to hear about your dad and I hope he can get comfortable enough to have a good night’s sleep, and the furosemide works and can help him reduce some of the fluid retention. You must all feel a bit overwhelmed by this and I’m sorry about that too. I really hope that the GP can make your dad feel a bit brighter and better, it’s good that your dad respects his judgement. I’ll keep everything crossed for you Gavin, and I’m so sorry you are on this horrible journey. My mum isn’t too good either right now, but we live in hope that she will plateau again after this recent dip. She’s having a real problem with severe severe pain that she can’t seem to control with the codeine, so today she called the GP and started on a stronger morphine, much against her will, mainly because she’s scared of becoming addicted! (My mum is the kind who would rather suffer a headache than take paracetomol, so you can imagine this has been one of the biggest hurdles for us to help her overcome…) She too has some fluid retention, but they haven’t suggested anything, so I will ask about the furosemide.
Julia – I’m so sorry too that your sister has had a rough week, and hope that she rallies and improves over the next few days… and reaps the rewards of her chemo…. again, everything crossed it works so well for her.
Take care, you are both very much in my thoughts right now. Wendy
Thank you Darla. You are so right about how this disease is hard for all of us affected by it. I will definitley keep posting my updates here, I really don’t know what I would have done had I not found this place.
Thanks Julia. Yes it is hard but we will keep fighting as long as we can.
Best wishes to you both
Gavin
I’m so, so sorry, Gavin. It must be so hard on you all. I’m thinking of you & send all my very best wishes.
Gavin,
I have been following your posts and am so sorry things are not going well for your Dad and just wanted to let you know I am thinking of him. This disease is so hard on everyone that is forced to face it, patients, family & caregivers alike. Take care & keep posting your updates.
Darla
Today has not been a good day. Saw the GP this morning and the swelling in dads legs is now at the top of his thighs and his stomach seems more swollen. Doc wasn’t keen on diuretics but feels we have to try something so given Furosmide, a small dose to start off with. So now that combined with his other meds means we also now have to watch out for his blood pressure dropping. Also talked about the possibility of draining the fluid from his stomach if need be if the swelling doesn’t go down, but he also wasn’t very keen on that either.
He also brought up the subject of dads future care and hospice and thinks that we need to discuss that soon. Dads Macmillan nurse is coming to visit onThursday so I know that subject will be on the agenda. Dad has had enough and is really down right now. Every visit to doctors of any kind just seems to bring him bad news now and more tablets to take. As soon as we got home he went pretty much straight to bed, and tonight he has been sick a lot. Not a good day at all.
Gavin
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