Day by Day
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Thanks all,
Your comments mean so much. At home I have to be strong not only for my parents but my young son. It’s good to come on here and share my worries and fears with people who really do understand what I’m going through.
Gavin, like your Dad mine is very stubborn. They sound so alike, right down to the morning walks to get the papers. We came back from shopping and he’s already painted the ceiling and given the walls one coat. He certainly enjoyed his cream cake! I’m not one for cream cakes myself so I had a cadburys caramel choc bar instead.
The Macmillan Nurse who dealt with my Dad at the QE hospital has taken care of getting Dads referrals sent off. I’m hoping we hear something within the next week or two. I really don’t think anything else can be done so if it can it will be a big bonus. Suppose it’s better not to get our hopes up in the situation we are in.
Michelle, Thank you, I really don’t know what I would have done the past few months without this site, Even though I don’t know you all in person, I feel like you are all here for me and I’ve gained a new ‘family’.
Lainy, Dad is not on any pain RX, he is not in any pain at the moment. I think both Teddy and my Dad are going to carry on being our miracle men.
Ashlyn, Thank you for your prayers.
Andie, we were told June 16th there was no more the Doctors could do, then Hospice said about the first week in October Teddy would be gone. Here he is at October 13th. Your dad and Teddy are not ready yet and that’s OK with us! Is your dad on any pain RX? Teddy can’t do anything anymore except walk from the chair to the bedroom. Its like a vicious circle as I think he would be better without the Morphine but then what to do for the pain? I hope for your dad and for T that they just go to sleep one day and that would be my wish. Quiet, peaceful and with dignity. Hang in, andie.
Hi Andie
Take it day by day….and when the time comes, then we deal with it together, i also stressed about how the end would be, Dad did go quietly in his sleep, he was at home to the end, in his own bed ….i know how you feel, stay strong, we are here for you. You are doing all that you can, this knowledge will sustain you…..
lots of love
Michelle
Hi Andie,
Thank you so much for letting us know how your dad is doing. And from what you say about your dad, he sounds about as stubborn as my dad was! I hope him painting the bathroom ceiling doesn’t tire him out too much, and I am certain that he will enjoy his cream cake for his tea break! Funnily enough, my dad was a bit partial to the odd cream cake as well!!
My dad also had the care of the district and community nurses when he came home from the hospital in 2008 and they took great care of him when he needed them. My dad was also offered the services of a Mac nurse in 2008 when he was diagnosed and I would say that in my opinion, there is no right time to take up their services as they can do so much for patients. My dad had one right from diagnosis through to the end, but i can understand your dad not wanting one right now and I guess that is up to each individual patient.
Have you been given any indication how long it might take for an app with Prof Lodge and the Cyberknife centre? As this is something that I think a Mac nurse may be able to help get sorted out quicker. My dads nurse was a great help in pushing for Ct scans to be brought forward and also for getting apps with his specialist also brought forward when needed.
I hope that throughout all of this that you are managing to take even just a little bit of time for yourself. I know how tiring this is and even getting a few minutes for myself helped me when I was looking after my dad. You’re doing an amazing job here looking after your dad, I know how hard this is to do and I know how much your dad will appreciate everything that you are doing for him and your mum.
Remember Andie that we are always all here for you and know how you are feeling. And while you are getting a cream cake for your dad, get one for yourself as well!
My best wishes to you, your mum and your dad,
Gavin
It’s been 2 weeks since we were told there was nothing else they can do for my Dad. The past two weeks seem to have been the longest weeks of my life.
Dad is still doing really well. He is more jaundiced but has no itching and still has a good appetite. He is painting the Bathroom ceiling today, something me and Mom wasn’t to keen on him doing as he only had his external drain fitted just over 2 weeks, but he wants to, so what Dad wants Dad gets!
He is napping in the day but that is something he has always done when recovering from a PTC procedure, so at the moment I’m not too worried. His weight has remained the same, none put on but none lost. He’s still only getting 200ml from his drain per day, so not enough to make a big difference to the bile that is backing up in his Liver. He is coping with the drain really well, he wears it attached to his leg with straps and the DN come every Monday to check it. Luckily I work in the same building as the DNs so if I need them they are literally right on the door step. I work with the Community Nurses and they have informed the District Nurses who my Dad is. They offered a Macmillan Nurse but Dad still doesn’t feel the time is right so we are leaving that for now.
We are awaiting a second opinion from Professor Lodge and also Cyberknife.
Some days I am literally having to drag myself out of bed, I’m so tired. My Mom worries me as she is finding it very hard, she has never been one to cope with ‘illness’ and I have always taken and gone to Dad for his results and appointments. I am doing all I can to help them both but it tears me apart that it isn’t enough. Dad told Mom he would go into an hospice when the time comes but Mom said ‘nothing will ever be to much trouble and as long as you want to stay at home you will’. I hope he can stay at home until the end, I hope he goes peacefully in his sleep. We have been told that this is what will happen, I pray that when the time comes it will happen like this. After all the years he’s suffered with Cancer, he has not once moaned, he has handled everything with such dignity and grace, never felt self pity so surely God should let him go in peace.
Well better go and pick Mom up to take her shopping, and fetch Dad his cream cake for his tea break during his decorating! Like I said what Dad wants Dad gets, the healthy eating is being realxed a bit now!
Best wishes to everyone
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