Hi Kate,
my apologies for mentioning an elemental diet as I didn’t know you are already on one. I did have some creamed potatoes, a poached egg and 2 slices of corned beef for my only meal yesterday - trying to keep to a low residue diet as gastro advised, but the nausea is a big problem, I just don’t want to eat! Picking up some steroids this morning, budesonide, so perhaps this will give me an appetite and help heal the ulcers and abscesses in my small intestine then I can have surgery on the strictures. Gosh, this ill health stuff never ends does it? Sometimes I don’t know where we get the mental strength from to carry on - but we are women, and we do,because we have to.
Do hope you get some definitive answers today about the stent - we’re all sending you positive vibes and cyber hugs.
Love
Liz.
Kate I always follow your posts and think of you often. Let’s hope they get their act together today! Wishing you lots of strength to get through this.
Just wanted to let u know that i am thinking about you (as I always am), I hope u get some answers today with regard to your treatment and the stent. Cant really imagine the anguish you are going through right now, and the unsettling events u seem to face on a constant basis. I really hope this gets sorted and you get some “down time” from all the ups and downs you have had so far this year.
Let us know how you are doing today, and remember to let others run around after you and not the other way around. Easier said than done I know with kids etc, but you must put yourself first.
Hi Kate,
Just to say I’m thinking of you and hope they get this sorted out pdq so you can enjoy the summer hols with your kids.
It would be really nice if you could be comfortable enough to actually enjoy your food too.
It’s not good enough that they haven’t got you sorted out yet - go and kick that ass!
lots of love Jacquie
Have been following you posts and wanted you to know that I am thinking of you and hope that the hospital get their act together soon and put in the stent. Experience has taught me that hospital clocks work differently to those in the outside world and 24 hours to us equates to one for them. I was down for an emergency op in April for an obstruction to the bowels,and 72 hours later was still waiting. During that time the bowels started to work again by themselves so the op was not needed.( fortunately I mentioned this to the surgeon just as I was about to have the anaesthetic. Honestly you couldn’t make it up! )
Take care and keep us up to date with what’s happening
Really hope that you have got some answers today - and answers that will help take away some of the worry. Don’t think “they” can understand at all how these sort of delays and the not knowing what is going on, affects us.
All I learnt today was the distinct feeling that the liver team and oncology don’t get on!!! Feel I will die before they act.
I managed with the help of the co-ordinating sister in chemo helpline for her to speak to my onc who told her that the liver team had discussed me yesterday and were prepared to do an ercp and stent rather than a permanent bag so that is good. Just hope my oesophagus is wide enough to get tube down. They are supposed to be writing to me!!! What does that mean? Can’t they phone and tell me when to go in? Aren’t I that urgent? The GP surgery also phoned for me and found that the onc secretary is fed up with the non-communication from the liver team and suggested I present myself at casualty.
The second line in my hickman also wouldn’t work today when the district nurse tried to do the weekly flush so going to clinic first thing friday to get the experts to try to get the hickman working and do bilirubin and LFTs again.
Feel sure it has trebled since wednesday judging by the colour I am and my wee is darker and poo distinctly lighter. Not itching so feel that is why they don’t consider me so urgent as really symptomless apart from the colour thing. No pain or tummy swelling but I suppose 30mg MST will hide the pain and the dex helps with everything so still hungry.
Not sure what will happen tomorrow - my plan was to come home and wait for blood result and see what happens and then hassle the team but the other part of me feels I should go in being prepared to stay in.
I know this is getting all my priorities wrong but my family are down saturday for family photos and really want to go as don’t know what is going to happen in the futureand want these photos done. They’re going to have to be in black and white - even photoshop won’t help as they have no idea what colour I really am!!!
Can’t see they will operate on friday afternoon or saturday but maybe they will. The onc said on tuesday this week that it would probably be next week - are there really that many of us needing ercps?
Will let you know what happens tomorrow but won’t let tomorrow pass without a firm date for op.
Thanks for your support but really scared may die now and not finished things I want to do. It was always my fear it would spread like this to my liver so scared more than I have ever been. It just doesn’t help knowing the people I did that died very quickly once they developed jaundice and there was this kind of delay.
Off to bed now. Let you know tomorrow
Katex
Why oh why can’t the medics get themselves sorted out. So sorry you are being so badly treated and made to wait so long…makes me very angry. As always thinking of you and really really hope they get you sorted out soon.
Take care (and give em hell if need be!)
Love Roberta
xx
Hi Kate - Another day, when you are reading this, and I do hope that you manage to get the date for your op sorted out, and can then enjoy the weekend (and photo session) as much as possible. It is just too bad that having coped with all the various stages of your illness, having planned and organised and generally been a trouper, you should now be up against a problem between two medical teams. It’s just not fair that you should be left feeling scared at this time, and I do hope so much that by the end of the day you will be feeling more confident about what the plan is. We are all thinking of you, and hoping so much that you get over this latest hurdle as soon as possible. Love Sarah xx
Hi Kate, I just wanted to add my best wishes and hopes for you. I rather like black and white photos, more romantic I think. Hope you get sorted and have a peaceful weekend, love Jilly
I can’t understand why they don’t act sooner. It is not just about getting the process done but about your QOL. Who wants to spend this much time worrying? It is not good for anyones health. At least if you have to go in this morning you will be able to make a fuss. Don’t let up Kate.
I know the NHS are stretched and trying to do the best they can but it really angers me to read that people are left in this position, they don’t seem to give a s**t for the anxiety and strett that it causes - all things that none of us need in the horrible position we find ourselves. I have had good care over all form the NHS but have had my moments (mainly at the bigger hospital in Edinburgh) when it took them 9 days to even tell a study nurse what the date of my ct scan would be. How can things take that long surely you look up the appointments and then reply it should almost happen in one telephone conversation.
Anyway I’m glad they have got to the bottom of your yellowness (don’t think that’s a word lol) and hopefully you will get through this episode and feel better.
Kate, I will be thinking of you today and so hope that you get the answers that you want. It is dreadful that you are having to go through all this turmoil that is leaving you so frightened.
Strength for today.
Margaret
Oh Kate, I keep coming on here to see that they have sorted this for you its really terrible…maybe you should present yourself at casualty, whatever you decide I wisj you the best.
Cathy
OH MY Kate!! I have been reading your story and this is crazy. I can’t believe how they are treating you. You STOMP your feet hard and refuse to leave until you have answers!!! Funnyface