[alanjamesbyrneParticipant]

Thank you ladies you were both very helpfull ,I will wait until next week when I return to hospital ,a week tomorrow ,and if they don’t come and see me ,I shall complain ,just feel that I’m on my own a bit with it all ,went to mcmillian about a year ago ,when first diagnosed ,the lady said your going on a journey ,talking about dieing,I stood up and walked out ,I thought I am nowhere near ready to talking about that ,so it’s put me off ,any thank you once again for your  input ,Mavis and Denise ,as I always say onwards and upwards

[alanjamesbyrneParticipant]

Hi all I’m on week 3 of chemo and on the same chemo tablets ,I to have sore ribs ,if I cough or sneeze it feels like my chest is going to explode and it’s really painful ,I’ve had to stop chemo and steroids now as I have a chest infection so now on antibiotics ,but chest still hurts it even gives me a sore neck and I struggle to turn my head ,I am on clinical. Drug trials ,and in 3 weeks have seen no one from that department ,I find that bad to say the least no support all ,trying to find things I can drink .as taste buds are shot ,orange and lemon barley water is good but I don’t like the reduced sugar one it leaves a nasty taste ,food tastes crap ,still as I say onwards and upwards ,no pain no gain

[alanjamesbyrneParticipant]

One week today ,I’ve not been to bad bad on the my first week of chemo,,apart from back,neck ,chest ,and shoulders ache,had my worse night so far on day 6 ,couldn’t get out of bed,but the wife massaged me last night,and slept a straight 6 hrs so that was good,I also took a tramadol tablet but something helped ,I’ve been getting very tired,and lose concentration ,maybe it’s lack of sleep,my son brought me a bed grab rail, which has helped a lot ,and I know it sounds disgusting ,a urinal for at night ,I really was struggling to get out of bed ,hate it ,but it makes life easier  ,I’ve also noticed I am a bit quick tempered,but put that down to the steroids,mind you patience has never been my strong point,

 

[alanjamesbyrneParticipant]

Hi botope ,I struggled last night ,now the steroids have stopped until 12 th neck ,back,chest ,shoulders very stiff ,had a job to get out of bed ,but I suppose you have to adjust yourself  as you go ,it was never going to be easy ,I’m sorry that your struggling ,I can’t say that I’m impressed with the support you receive from hospital it seems there isn’t any ,and it’s an awful lot to take in ,they just give you the drugs and let you get on with it ,I do know that I am going to fight this with evrey thing I’ve got ,but feel more support would help ,the family and friends have helped ,any way you keep plugging away like I will ,and I wish you the best of luck ,take care

[alanjamesbyrneParticipant]

Hi Martin how long ago were you diagnosed mine was two years ago nov next ,started with a funny shoulder ,then one day I was lifting a ladder on my crv and something went in my shoulder turns out the collar bone snapped a bit pain full, then after scans x Rays biopsies ,you name it they came up with this ,I’ve had to stop working which is the hardest part  drives me mad ,they say at present there’s no cure but they can hold it off for quite a while ,all we can do is live in hope mate that’s why I am doing the clinical trials maybe I can help somebody else even if if doesn’t help me ,but hoping it will mind ,not impressed with the support that they are giving me at the moment lots of silly things ,like they give me syringes ,and no instruction and no sharps box ,to name a few should be a check sheet that they go through with you ,silly but bloody easy   To easy ,the other silly one I’m supposed to monitor temp and ring up if it goes to 38 c but they don’t give you one how the hell can I monitor it I’ve ordered one now ,just hope temp does not come up until it arrives,any way enough from me for now ,take it easy and good luck,alan

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