January 2012
Hi Sunshine006au,
You are doing everything that you can for your dad, if the community nurses think that he is high maintenance, then it may be the best for him, you and the family if he goes into care, he will have everything that he needs and will be constantly looked after by professionals, who will attend to his medications, feeding and well being, all the things that you have been doing.
Up to this stage there is nobody that could have done more for your dad than you,but it seems that he needs a different level of care now, and you could probably do with some respite.
Think of it as just sharing the load of everything up till now you have been doing.
Wait until Wednesday to see what the options are, then you can do what is best for your dad. Be strong
wombat4
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January 2012
It is very difficult for you at the moment Sunshine. Your dad is going through a lot with his illness and must feel exhausted, and you as well being his main carer. Take each day at a time.
The micro sleeps are something else as well, they can be problematic if he has one and has a fall, you do not need that on top of everything else, and you would not want him just in bed all the time.
Has he got a walking frame with a seat in it, so that you can take him for a short walk and if he gets tired or it looks as if he is going to have a micro sleep, he can rest for a while in the seat.
Take care in this difficult time
wombat4
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January 2012
It is difficult to have to wait, going back to work may take your mind of things for a while.
I assume the board is the team that are looking after you, and after looking at all the issues in your case will offer you the best pathway to take.
Keep strong
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January 2012
Hi Jsbach,
Good luck with the new regime. By now you would have been given the handouts on possible side effects, its worth remembering not everybody gets them. One of the things to watch out for with the oxaliplatin is the neuropathy, which is the tingling in hands and possibly feet, your oncologist would ask you about this every time you visit. The tingling can also be brought on by changes in temperature, so be mindfull of air cons in cars and shops, keep your hands out of the freezer, and if you can out of the fridge as well. Cold drinks with ice are a no no. Keep a pair of gloves with you in case you have to handle something cold.If you keep these sorts of things in mind you may lessen the potential side effects.
The first night of the cycle it was difficult for my wife to sleep because of the uppers ( anti nausea medication ) but on the 2nd night she slept fine.
With the 5FU, on occasions her face would colour up, and feel hot, but this was only temporary and only last a few hours.
Hope all goes well for you
wombat4
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January 2012
Hi jsbach,
Although I have no exp with Folfirinox, my wife was on Folfox with the iv port for the 2 days, every 2 weeks, 48 cycles in all, and she never had any probs with sleeping through that time while the iv was connected, It was put in her right side and she slept on her left side.
Good luck
wombat4
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January 2012
Hi jsbach,
Although I have no exp with Folfirinox, my wife was on Folfox with the iv port for the 2 days, every 2 weeks, 48 cycles in all, and she never had any probs with sleeping through that time while the iv was connected, It was put in her right side and she slept on her left side.
Good luck
wombat4
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January 2012
Hi BobH,
Its good that things are moving quickly for you, its better than waiting for weeks before you know anything.
I have been to the place you are in now, it is a place we have never dreamed existed our worst nightmare, but we are there.
I sincerely hope it is good news for you both. If it is not as good as you wished for, take it, do your very best and work with it.
Dont forget the note book and pen, get the specialists business card as well, it usually has an a/h No and their mobile No, and email. If you have questions you forgot to ask, you can always email
It is difficult if you need to contact them and all you have is the office No.
The numbness you are feeling is normal, Those touched by this have all been there, and many like myself are still there. Stay as a major part of the team that will take on the treatment of your wife. You will be with her for more time more than the rest of the team. Your wife needs to be able to depend on you. It is difficult, but be strong.
wombat4
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January 2012
Hi AJ,
What you and your husband are going through is indeed an overpowering experience.
I cannot help you with your questions but my heart goes out to you.
Stay strong both of you.
wombat4
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January 2012
Hi Andrea,
Good to here you have had the tumour removed.
3 weeks is a long time to wait for the info, but you hang in there, and stay positive
wombat4
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