Went into Christie's as an emergency a week last Monday -things moved fast that day, ascites drainage and onto Ward 14 later that day. Was supposed to have a clinic appointment following day but told that someone would come and see me. Hubby went along at 5 to find all shut down and gone home. At that point I got very upset as I needed to ask questions and sign consent forms for new treatment of cisplatin and gemcitabine at 8.30 appt next day. Registrar and Ward doc came then and next day two from team came and got paperwork done.
Fortunately chemo bed was still available so got treatment ( and divine foot massage) . Back on ward and good night despite the 8 mg steroids. Next day (Thursday) good apart from one random bile sickness and persuaded Ward doc I could go home, all fine....
hmm... through the night 3 bad bouts of bile sickness. Not eaten for several days . Friday stayed in bed.. sickness every few hours and through night. Weak as a baby and had to call ambulance to go into A and E to another local hospital as no beds or admittance to C!s over weekend.
Now Tuesday and Step by step the doctors have got to grips with all my various symptoms and problems. Can't fault anything and feel I want to stay here.
Basically I am beginning to understand I can't take any more chemo ( especially this one..). Have major bowel blockage, disease now pinching in many areas of the small bowel, so inoperable. I have nasal drip to drain off the constant bile secretions, but at least it stops me being sick. Down this tube they were able to send a liquid to help me poop but wind only so far. They were also able to give me the iodine liquid to get a good image on a ct scan but shows severe impact and other liquid still trying to work its way through... like the sluggish River Nile!
On rehydration only no creamy food sludge like kryssy as would stress bowel too much. Set up with syringe driver for pain meds and 8 mg steroids daily
Going to the loo is a major expedition now....but at least I am on an soft air bed rolling me around on gentle waves..
sorry another long post, but helps to write it down as it easy to lose the plot
Love and hugs...janet 💓
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Janet235
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It sounds as if the bowel problems are being brought under control. Will you have to stay on a special diet do you know or is it only until the blockage is cleared? Did the cis / gem cause the sickness or was it the blockage? Hope a new plan is put in place for you soon. I know exactly what you mean about writing it down, it helps fix it in your mind, or it does at my age.
What I would give for a poop! Honestly the things we wish for these days... no idea re special diet yet, think I've forgotten how to eat, but couple mouthfuls of ice cream earlier was refreshing...
I think the gem was major Culprit but also knew I was not in a strong place to start..had to give it a go though as disease spreading fast and abdomen swelling. had one ascites drainage already. Need another soon as feel on a vice again. Lung full of fluid also...
Oh Janet. So sorry to read this. Know exactly how you feel. My smelly fish liquid and lemon sauce kept me going although it freaked me out a bit at first seeing it going into my veins. I thought my blood would change colour. Half a glass of water a day for 10 days was the worst though. Still had to be done. Are they giving you laxatives? They gave me six sachets a day and it still took 10 days for Rocky to travel the bowel. Hang on in there sister and be good. Wishing you the best crapola ever as soon as poss. Xxxxxx
In the vein? I have nasal drip tube so thought they might send something nutritious down there, but doc said it would stress bowel too much at mo BUT the special liquid sent that route finallly resulted in minor loco- motion action this morning so they put the banners out and thankful soft and sensible ( I was dreading Rocky) and again just now... now can sip fortsip and maybe a warm tea soon... mighty phew. Xx
Hooray for your movement. Did you have to have it inspected as I did? As if I'd lie about having a poop. They were looking for quantity not quality. Yuk. Yes, fed through my port. Spooky. xxxx
Phew, glad it moved, Janet. Bowels getting stuck is the pits. Nothing else matters at that point. Hopefully the sickness will subside soon as well. Do you know what your options are, aside from cis/gem chemo? Hugs. Maus
Wishing you well - I have a stoma so don't have any useful advice. I did have one of those airbeds last time I was in hospital- not because I needed one - I was just lucky- very swishy. Hope they can make you feel better. I remember my first thumbful of icecream after my op when I hadn't eaten for weeks.
I wanted just vanilla but it was chocolate vanilla swirl. Normally I love chocolate but I've got so particular and fussy, the smell of the dinner trolley coming round is really off putting.. maybe a bit of jelly later...x
Hi Jenet , I'm sorry to read you are having such a hard time ,constipation can be such a problem I had one bowel blockage and ended up in hospital, now I take laxatives, prune juice, Movical my palliative nurse told me to take pear juice I have not tried it yet, what ever it take to go.
I hope your team can fix the problem and have you home soon and keep writing it does help to correspond with ladies who understand and we do...Take care Lorraine xx
Sounds like you are having a really hard time but are where you are getting attended to. Hope you begin to have bowel movements as it is so difficult to deal with multiple issues at the same time. Maybe a dose reduction on the chemo? Sounds like you are still platinum sensitive so that is good.
No beds at Christie's over weekend so now in Wythenshawe hospital, being well cared for...feel they are dealing well with all my symptoms... can't see me back on chemo any time soon, not until I am a lot stronger x
I am also currently in The Christie has an inpatient. I cam in a couple of weeks ago for prechemo checks but got admitted as wasn’t very well bp low, SATs low and heart rate high. I also had a slight temp. My legs are really swollen and I have another Chyle leak in my tummy but they can’t work out what is causing the leak.
They have kept me in to give me my first chemo but it was a bit touch and go whether they were going to let me have it. Now the plan is to get me home as soon as they can sort out a bit of support as I live on my own and I can’t stay with anyone as there is no room.
What Ward are you on? I was on 14 from a week last Monday to Thursday but admitted to Wythenshawe on Saturday, still here. Sounds like you also in multiple symptom issues, so hope You get solved and sorted soon....x
When I had my surgery I had the usual lack of movement which continued for 3 weeks and I had the vomiting associated with it, they said that producing wind was a good sign that the bowel was beginning to function again, I really had lots of wind (still do if the truth is told 😬) so hopefully your wind is a good sign and things will start to move for you soon. Could this be Rock ll? Get well soon lovely, love and hugs ❤️Xx Jane
I guess that if things are moving along nicely then the lack of f#rts can only be a good thing, what with us being ladies and all that 😊, sometimes though.......I can let the side down a little 😬 😂❤️Xx Jane
See above replies.. poop moving at last and 'sensibly' 🤣
I know I shouldn't but this post has made me smile, I have awfull constipation too and a lot of wind its rotton and so uncomfortable, I've used movocol In past but have found prunes,prune juice and lots of water are just as good for me.
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