chipies blog

delicate skin

2010-03-22T10:30:38Z

hello everyone and thank you for your help and love on my last blog .Well here goes , the latest thing that has happened is phil has developed a new area on his leg that is leaking fluid due to his having fluid retention in his legs and his skin is so delicate that I have to be really careful when i touch him to change his dressings . I am getting so scared to move him as he cant move himself that I might damage him .I put his t.shirt on yesterday and touched his arm ( which is also full of fluid) and the skin broke and fliud just started pouring out had to grab a drainage bag that we use for his other wounds and put that on . Poor phil now has 5 bags on his body .I dont know how he keeps going but he does . I havnt been sleeping to good because Im so worried about him and whats going to happen next ! I m sure its only our 6 grandchildren that keep him going (and me) the eldest one askes when can he go and help her ride a bike like he did her dad , that breaks my heart but he just laughs and says AS SOON AS I GET NEW LEGS , IN THE MEANTIME YOU PRACTICE . she always smiles and says ok . Take care whoevere reads this and hopefully keep smiling x x x x

what next!!!

2010-03-18T11:22:50Z

I feel like screaming ! phil has had another area burst on his side that now brings the total up to four now on him dont know what we are going to do now , its really getting him down . Being as his cancer comes under the very rare catogory they say that they dont know what to do so just watch and see . Personly I would like to have more info on what the blooming hell is happening to him ! Our docter came yesterday and said this was going to happen as she could see the swelling, she is the only medical person we have conntact with as phil been discharged from hospital ( thats not what i call it i say left to fend for yourself) cant get the right drainage bags as you have to order them in made to measure and then dont know if any good . What a way to start the day on top of all that had blooming asthma attack . sorry about moaning so much but got to let of steam xx

chipies new blog

2010-03-16T08:28:00Z

my name is chipie and im a full time carer to my husband . He has advanced cancer and is under our G.P only we have no contact with the hospital at all as they say there is nothing more they can do for him . his cancer is very rare its called pseudomyxoma peritoni and they cannot operate on him as it was found to late . we have been to basingstoke where they done a c.t scan and found out that it was much further along than they was lead to belive by our local hospital they operated on him and thats when they found out how bad he was . the care that he recieved in there was superb and we was very sorry that phil would not recieve this much care when he got home .

I look after phil on my own and it is extemly tiring I have had marie curie nurses in but phil didnt like having differant people in all the time (hes a very private person) and couldnt handle having differant nurses coming in we have one disrict nurse who comes in to change phils dressings as we have known her since the begining . they sent various other nurses in but phil always sent them away and said its ok and i would change his dressings for him this is quite hard work as it normally takes two of us to move him .

I have read lots of post on the site and see that theres a lot of people like me out there . I get very tired and frustrated and very often think why is this happening to us we are only in our 50s and it just seems so wrong .