And how amazing you are Christine giving support to others even though you have been through so much yourself x I'm hoping you can all meet my dad on here very soon I'm going to put it on his iPad and see if he joins ha I think it will help him a lot thankyou ladies xx

The signature looks great, Delly! Thank you

Using other things besides the recommended formulas can clog the tube or cause it to wear out quickly, plus its very difficult to monitor a balanced diet and calories. If your father is losing weight when taking in 2400 calories, than means he isnt getting enough. In my opinion I would try to get him to take in at least 3000 calories daily to see if that will stop the weight loss. Everyone is slightly different and will respond to everything in their own way. The high protein whey powder isnt for calories, its for the extra protein to help with healing. It can be found in any pharmacy or most grocery stores, even Walmart has it, usually its near the ensure or vitamins. I would suggest talking everything I mentioned over with a nutritionist and/or his doc.

Also ask the doctor if a visiting nurse would be something the hospital offers. This would be a huge help! I had one for several weeks and they were a lifesaver to me. When he comes home you will find that there so an enormous amount of work that goes into his care. Just daily living items can quickly wear a patient out when they have had a major surgery.

Good luck with everything!


PS... You're welcome! Im always here to help

Hi all dad home hooray :))) x just one question tonight they have sent him with no sterile water and said used boiled water this is proving to be a pain in the bum x what should we store it in and is it ok to use bottled water ? It's to flush his tube and obviously for fluids xx

Is this for his PEG tube? We just use ordinary tap water. You don't drink sterile water, so tap water is fine.
Happy to hear he is home.
Tammy

He's using tap water now boiling it all is impossible as he uses lots x he's all swollen today again and very tired don't no if he done to much think the swelling due to being lay down most if the day where as in hospital he sat in a chair so the fluid drains out more x feel very helpless left him to have a sleep now :(( xx

We used spring water that we got from the supermarket just because John's resistance was low and would have got sick if something's in the tap water. If tap water is fine in your area, it would probably be fine.

Try to have him sleep propped up on at least 2 pillows. This is very important if doing feedings by using the pump. By laying down flat he could aspirate which can lead to serious problems. I used to raise the head of my bed about 6" plus sleep on 4 pillows to avoid laying flat. This will also be a big help with the drainage.

I used bottled water. Any grocery store will sell the purified water which is fine to use and so much easier than boiling water all the time.

Was a visiting nurse something that was available?

Yeah tap water is fine to drink here I in england Manchester xx dad not good today so tired 😔 xxx

Hi Delly
So sorry to hear about your dad ...... I live not to far away from Manchester . I had tonsil cancer so not the same but if I can offer any help , support just let me know.
Was your dad treated at The Christie with surgery at Wythenshaw ? I had my op at Stepping Hill then chemo and radiotherapy at The Christie under the care of Dr Sykes . Been going to a head and neck support group at Maccelsfied hospital think it's every 6 weeks , it's for carers too . Some people have been through the same procedure as your dad.
I finished treatment December 2013 and I'm doing good most of the time . Got a little worry at the moment but having it removed and a biopsy on Monday at wythenshaw under Mister Iqbar team ..... Nobody appears to freaked out apart from me , but as the mantra says on here " it's not cancer until the biopsy says it is" so that's what I'm saying to myself!
You are doing a great job looking after your dad , my partner did the same for me and still does he's very protective keeps me grounded . It's vital when facing this horrible unfair disease .
Stay strong thinking of you , don't be alone, ask questions , and remember I'm not to far from you. I haven't the knowledge that other people on here have unfortunately but can offer my support and a hug ! Xxx😄😄

Hi hun so sorry for what you've been through life can be so creul I'm glad you've got a supportive partner I wish my dad had someone living with him for the times you get scared xx yeah dad going there Tuesday should start radiation in 4 week he's had radiation on that area before so going to have to try find his notes from 28 years ago to see exactly where he had it xx are you able to eat or are you peg fed x dad is very down at the moment he feels very tired but I think that's because he more relaxed at home x I would love to go a support group and meet people and see how every body copes with things because I find it hard and if my dads having a bad day I am to xx I hope your results are good think you've been through enough now ! Xx