Wow!, what a difference a week makes. Had two sofa days last Monday/Tuesday, but bloods held up & after moving dates for the bank holiday I started cycle 2 yesterday. The combination of chemo drugs Gemcitabinee & Cisplatin are attacking the joints on my right side. Shoulder, elbow, hip & knee which has me shuffling around & needing help to stand. Real fatigue hit me for the first time after yesterday's treatment - I had nothing left in the tank & had to give in & let everyone else do stuff. My skin is now dry & scaley, my hair is falling out and appears to be finding it's way into every area of the house , even if I haven't been there! I still managed to cause a little mayhem in the unit, sat next to a retired London cabbie. We were told off for laughing to loudly!!! With me back on the steroids during chemo cycle & his natural chatty nature we had a lot to talk about, & my 7.5hours in the chair went very quickly. Woke this morning, sore & achey but able to move.
I hope you are all as well as you can be. Take care of you & yours.
X Cibble
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Cibble
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I do hope that you are trying to rest and taking it easy? You do go 60mph! You are very disciplined hun, so know that you will try and keep to your routine...
I do hope your treatment works well for you and am praying that you recover soon...
Thank you Pear, it was an eye opener to learn that I had restrictions! But the enforced rest has had its benefits. I had cycle 2b yesterday & have coped much better a I was prepared.
Hope all is settling down your end. I saw your post after hubby came home. NG feeds can be hard to get used to & I have had patients who have removed or dislodged their tubes by accident several times. It can add to the frustrations but is not uncommon, although time consuming if you have to go to A&E. The community NG team should be able to resite the tube & aspirate to confirm in place, if no aspirate then xray confirmation is needed, do you have a local community hospital nearer than the general one. May help to reduce your visits to A&E? Can hubby still take oral fluids if necessary?
I seem to be asking a lot of questions, sorry. Just trying to offer some support in difficult times.
Don't be sorry... I rely on you all to keep me on top of me and mine...
The NG system is overlooked by a private company - they do not do replacement of tube or anything like that. They can only come out during office hours - only to do dressing etc. The local A & E refused to do anything and said I needed to take him to our main hospital.
The tube is behaving now - although the pump is as touchy as ever - so needs resetting ever so often...
I hope so much that you keep your energy - mind and body - up as much as possible...
Dear Pear, I am holding up so far. Thank you for your concern.
Can the District/community nursing team manage the NG in your home?
We have a different system in our area. It's hard to know what is available across different NHS Trusts. Check with your GP also as some hospice & outreach services offer device management and feeding support.
I am glad things are settling at this time.
But remember, never feel like you cannot ask for more help & there are no silly questions.
Hello hun, the whole process is soooo silly - community/District nurses cannot touch any of the equipment as it all belongs to this company. I have checked with the GP as well - again they cannot intervene...
We have clinic today - so I am going in armed with lots of questions/queries...
Good to hear your holding up - this is half the battle...
Fingers crossed for good clinic today. Sometimes the limitations are frustrating to us as health professionals too, as they are set up with all good intentions to help streamline care but in some instances can act as obstacles. Be happy with the answers to your questions, I have always preferred it when a patient or family member asks more than those who comply and do not voice their concerns. I worry about those family's!
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Apologies for absence xx
my husband as liver failer and is being put on list gor a new liver today, he also as hepititus c the worst it can get,
My Journey With Fatty Liver and Type 2 Diabetes
Waiting to be waiting...
