hi julie here, in reply to your question Karen about how much bowel did i have removed, they removed all my small bowel and part of my large bowel, because the illeum is the part that takes all the moisture out , that is partly why its diarrohea or lose when you go to the toilet. I have been tested for B12 but my tests come back ok and i also have to be tested for Thyroid because i now have an under active Thyriod. I take 75mgs of Levothroxine tablets every day, i think thats why i have put weight on. I have tried Evening Primrose but then was told it can cause diarrohea in some people so i stoped it. My daughter has said i should try some supplements, i think i will give it a try thank you carmel.



julie

hi everyone, should be going for my third injection today, but the hospital rang at 4pm last night to say the pharmacy had not ordered my sando in, so now i have got to go on thursday instead. My sister had taken the day off work to take me and it was to late to change it, feel abit bad about it, hospitals dont think about people taking you there, had my moan for the day feel better now, hope everybody is ok, just wondered if anyone else has had this problem.


julie

poor you.... it is'nt good enough really for a major hospital like the city to be so slack. and sometimes if you complain you can just get over stressed which makes it all seem worse... vicious circle....
my funny memory of the city hospital (dudley road in those days)
my dad was in there and in the bed opposite was an ancient fella with no meat on his bones and of no threat to anybody... however he was handcuffed to a guard for 24 hours a day! he was a prisoner from winson green, they did'nt have a hospital wing of course. 3 different guards would take a shift at a time and when they visited the loo they put the cuffs on the bedstead!
no trouble at my local hospital with drug orders even though the sando is supplied by a pharmacist in lismore which is a few hours south. twice i have been to england and needed an injection to take with me... this also has been no drama. my oncologist writes a letter to whom it may concern, we wrap the box up in bubble wrap and keep it refrigerated on the plane with instructions on how to give it. i went to my old doctor in handsworth wood and once i'd got past the receptionist who told me it was impossible, would cost me up to 100 pounds, blah blah. anyway, i went for an appointment, a very nice doctor who i slightly remembered did the injection, told me as it could be life threatening if i did'nt get it, there would be no charge... so, i feel happy about that and he did it for me again last year.
sorry if i'm rambling, hope your change of day does'nt upset things too much.
karen

hi karen , i dont have the injection done at the city hospital i only go there for my Octreotide scan, i have all my other scans and tests and also my injection done at New Cross hospital Wolverhampton, also its where my consultant is. I dont know if you have heard of it, its also a very big hospital. Its good that you can bring your injection with you when you visit and i'm glad they did it for you, for nothing in the end, its only right!. I hope you are well, my consultant has given me some MOVICOL sachets for the constipation, you dissolve it in water and drink seens to be doing the trick ,we will see.Thought i would mention it as i read above you were having problems.


yours julie

I have my three weekly injection done at my doctors. I give my chemist the dates that they should order my sando, then I book to have the nurse give me my injection one week later, works like a dream and all the nurses now know how to give it.

sally

hi everyone, julie here,had my third injection last thursday after all; been away for the easter weekend in Torquay Devon, weather cold but it was a lovely break away from the same four walls. Going for a Heart ultra sound scan tomorrow, been getting some funny feelings in my chest, so my consultant wants it checking out ,also having a 24 hour tape recorder fitted which will monitor my heart beat for 24 hours and i will go back the next day to have it taken off. What ever next?. Hope everyone is well and had a nice Easter.


yours julie

hello julie, i was wondering how you were going, thought it was last thursday though. i'm interested in your heart checks as i have been not exactly breathless but can notice when i breathe in i can't sort of go all the way and feel fluttery and thumpy. i get heartbeat noise in my ears alot too. good luck with that and let us know what they say...
i love torquay - that whole area really, its always warmer than birmingham!
i'll make you jealous now - we were up at a luxury resort over easter, the hyatt regency at sanctuary cove, gold coast - my brother was up from sydney with his family. we are just the poor relations day visiting though! had two days at a beautiful manmade lagoon, temp around 28 degrees! not bad considering its supposed to be nearly winter!
karen

hi Karen , i am jealous, 28 degrees, we had snow showers, it all sounds beautiful, i'm glad you had a good time.Had my Heart scan its quick and painless, i think everything is ok, but they dont tell you much , they will send report to consultant. have worn a 24 hour tape, just taken it back to the hospital , its the waiting game again.I also get heartbeat noise in my ears too, my daughter said she does to and its alright, shes a midwife so she knows a bit, i drive her mad with all my questions, i think its a good job she took all her medical books with her when she lefted home, not that there is much about this type of cancer in any book. Hope your keeping well.


julie

yes i feel so much better, too - since visiting my old doctor. he referred me for heaps of blood tests and the favourite 5h1aa to see how things are going and if we can stop this rapid weight loss. over here we have so many clinics, including skin cancer clinics - wherever there are shops.... there is a high elderly population where i live, its very easy. get the referral, go to the clinic, no appointment necessary, blood collected at all times of the day and taken to hospital path lab and results available quickly usually direct to your doctor. had a bone density test too, my last one was two years ago and i am showing 10% degeneration since then so i think i will need more calcium at least. still in the "normal" section - that scan i fetched the very next day.
glad that the heartbeat noise is'nt anything to worry about. good luck with your results, keep us up to date.
karen

Hi
I live in Oxfordshire and have been treated at the John Radcliffe group of hospitals.
Lyn

hello lyn, welcome to the site, let us know if theres anything we may help you with.
karen

Hello everyone,

I am Anna from Belfast, Northern Ireland.

Diagnosed 7 years ago, I have been on Somatuline Autogel 1 x 28
for 6 years. My centre for treatment and care is the
Royal Victoria Hospital in Belfast and I have my injection at my
GP'S surgery.

Anna

good to hear from you, anna.
this site seems very quiet at the moment guys.... evreyone ok?
i've been for many tests to see if theres a reason for my recent rapid weight loss. as you know i've returned to my old doctor and feel very glad i did! results have ruled out crohns and celiac and my current levels of iron, blood pressure etc all good. he has prescribed b12 injections to start next weds - monthly at first.
it appears my carcinoid syndrome has been very active as levels from 5h1aa showed 812 and platelet serotonin was 16400. doctor compared to all my previous and these were through the roof so he was waiting to speak with prof abdi - my onco before doing anything else. i said i know they can escalate sometimes, i followed the restrictive diet carefully for the 5h1aa so don't think i mucked up.
now, i keep reading about carcinoid crisis and have got myself a bit upset, though i am usually very calm and i know things can go up and down...
anyone give me similar stories?
kar

Sorry we have frightened you talking about Carcinoid crisis, not everyone has a crisis, so don't wait for it to happen. My 5hiAA have also shown very high before so again try not to get too wound up about it, let the docs do the worrying. What I have found definately does help with carcinoid and possible crisis is relaxation and learning relaxation techniques, they definately work for me.

Sally

thanks sally, when i think rationally i know i can't really do any more than chill out.. and i do! pleople are amazed how calm i am - usually!
i say "lifes too short to get upset" then think of the irony!
whatever... none of us knows the future.. thats why i'm planning a trip to england in july to spend time with my sister.
kar