Rig help

Hi dpanky. I feel for you! I reched a lot and had thick horrible mucus. My team prescribed carbocistine when I was in hospital. It comes in liquid form and it definitely helped over time. Maybe speak to your oncologist or GP and see what they advise?

I am just over 4 months post treatment (not 5 as I previously thought! Brain fog) once the radiotherapy is complete there will be about 10 days after where it is still working so you may not feel your best. Persevere though because where I am now is greatly improved from then. I still have a way to go but I promise you WILL start to feel better. Be kind to yourself and listen to your body don't run before you can walk like I did. I heeded to advice given by the wonderful people on here knowing what I was feeling and going through is perfectly normal. As one wise person on here said it's a sprint not a race.

Sending you good luck for the rest of the treatment. Ringing the bell is drawing closer for you. Take care. Always here xxx Jackie xx

the nurses do the balloon and clean it once a week i really cant touch it they also put a padded dressing on so the disc is on top of that as my stomach is forevwe bloating out n going down again and the 1st time they done it while i was in hospital the disc had embedded in me so they keep a padded dressing under the  disc its got a split in the dressing so it slide and sits under the disc my nurse only came out to my home the once to train me but my nurses do the balloon every monday and clean it  and pir new dressing on n when the nurse came out to train me she said unless there is a problem the ph does not need doing ans d yes once a week i have blood test done ready to see oncologist each week so see the whole team once a week with weight and blood tests done day b4 i see them all then a frisay i see nurses again to discuss side affects i must admit my whole team been great and really on the ball x

hi debbie yes you are right the slow release pump is a life saver been out of hospital since friday and managing the pump at home iam not doing 10 hours through the night as i have to put a 2nd bottle up so iam doing 1 in the morning am on it now then 2nd 1 in evening before i go to sleep so no disturbed sleep my dietition said it was ok to do in 2 halves and iam now getting the nutrients i need and feel so much better for it, iam not opening my bowels though since friday iam taking all the meds i was sent home with is the normal when on pump feed to not go regularly thinking as its liquid will i go as usual every day?  i will send my daughter to tesco for a few tins of prunes as couple of mouthfuls of the juice works everytime for me hate prunes and the juice but when i have to i will lol hope you are doing ok xx

donna xx 

ahh thank you jackie xx  so are you eating and drinking ok now since treatment? and yes my team and the lovely people on here have all said when treatment ends it will take a while b4 side effects stop and b4 we start to feel better and how are you feeling now you are 4 months post treatment and are you all clear now? 

donna xxx

Good to hear that the nurses are doing the balloon water change as I could do that myself either. Also once it’s covered up it must make it easier for you to feed yourself through it. I’m so pleased that I’m able to put the 20 ml of ibuprofen through it as taking it orally the pain went through the roof. I feel very light headed a lot of the time and can’t answer simple questions which is so annoying. I usually walk quite a bit but these 5 weeks are an effort to get out of a chair and I feel (and look) 10 years older. 
I hope this weeks flies and the next 2 weeks are copeable. Good luck Sue xx 

my team said there is nothing they can do when  i asked them all they done was nebulise me and told me to buy a nebuliser for home which i have done it does help me bring it up  but if theres anything more to help it more would be great i will ask my team tomoz about what you been prescribed thank u xx

iam the same sue i love to walk each day i walk for a charity called calm i dont raise a lot but i enjoy doing it and suicide charity is close to my heart ive signed up for a small 60 mile walk in o but not sure i will be well enough iam just trying to be hopefull i cant even walk the dog at the moment iam like u have trouble getting off sofa n walking to the loo my son is walking the dog eachay bless him i also look 10 yrs older r t making my neck wrinkled plus the weight loss ive non stop lost weight each week at the start of all this i needed to loose a bit but now its to much i was 7g now iam 59.1 kg even when i was eating i was still loosing weight but enough is enough now as i look awful now x so this is your final week i bet you cant wait and my final countdown 10 to go well after . tomoz 9 hopefully it wont be to much longer and u can enjoy that glass of wine and bag of crisp  xxx

i was 72kg that was not 7  x

Hi Donna,

So glad the pump is working for you .I couldnt do overnight either( but really helps others).

When your feeding becomes more stable you can increase it slowly .I did it gradually then eventually went back to bolus feeding (much quicker but stomach has to be able to cope).

Ive has every bowel issue going bad cramps sever diahorea and horrific constipation.Our poor bodies don’t know what to do … meds and feed can cause both .If the prune juice doesn’t work phone CSN or member of your team.

You can private message me anytime x

Debbie 

Hi Donna its great to hear from you!  Thank you for asking! I am eating some things. Bread and biscuits etc are a no no as I don't have much saliva ( Some of the lovely people on here have suggested things to try which I am looking into) 

I am gradually getting my strength back and have even return to work on a phased basis which has done a lot for me mentally. There are still a few niggles like croaky throat and eating is slightly uncomfortable. But nothing to what it was. I was extremely fortunate to get the " it's gone" diagnosis which I am still trying to get my head around. Which is a strange reaction I know. Maybe call it shock???? I don't know?  

Back to you! You will get through this. It will be hard some days but it will happen. Keep strong  just think by Christmas you may be feeling a little bit more like yourself! Sending hugs and hoping with all my heart that you get the " it's gone" diagnosis! I am keeping my fingers and toes crossed for you xxx Jackie xx