I can't even begin to imagine how much you are struggling, this must be getting you down so much, and I can understand how emotional draining this must be.
Coping with a child with CF alone can be a huge struggle and time consuming. Too add everything else in, I can't even imagine to be honest.
Pretty soon, in a year or so, Kyle will be able to do his own physio treatments. It does depend on how quickly he grasps them though. I think it's about
5 now, when they start teaching children to take there own medications. The people have told you it won't be for much longer are right, as Kyle starts to learn to take control of his own care, kids are fast learners, and soon everything will seem like second nature for him.
The good news is, is that you do have a CF team, and put your faith in them, and they will do there best to guide you forward in the best ways too cope. Lean on them lots, as they will completely understand your worries and concerns.
In all honesty, I don't know that much about
cancer. If it was me, I'd be freaking out and running circles round the place screaming, as I would have no idea at all how to deal with it. You're doing well in how you are holding things together. I'm certainly proud of you, as it sounds like you have a load to deal with.
Try and fit in an hour of free time to yourself. Sit your hubby down in front of the TV, sit the kids on the floor with a few toys. Have a really hot bath, and give yourself time just to collect your thoughts, and relax. Maybe put on some calming music, or the radio.
Or have the bath, while they have naptime.
If you sleep, your not going to be relaxed, your still going to be worrying about
things. But in a bath you have the scent of the bubble bath, and the heat from the steam, and you can think about
things in a relaxed atmosphere.
I know you may have other things that need doing. But, if you don't take a little bit of time to look after yourself (even 20 minutes) then everythings going to seem like one big cycle of being busy and in a rush.
I can't imagine not having the NHS, as they just pay for absolutely verything, no matter what medical treatment you need. I know for a single lung transplant in the US is about
$20,000 (this info is from a friend in the states who was trying to raise funds.) I couldn't imagine having to pay for things like IV treatment, as it's just something we get. I've been told that a week of IV's can cost around £2,000 over here. I couldn't even imagine having to have those funds, and not having the benefit systems we have over here. I know you can have insurance policies and things, but i have no clue how much they cost, or even to what extent they cover.
I hope some of this is of help. And no worries about
posting on here huni, post all you need to you, we'll be here to support you whenever you need it.
If you just want a general chat sometimes, my email should be visable under my name I think.
Co-moderator in the: Cystic Fibrosis Forums
Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05