After a long day at the hospital, firstly to see the Gut Nurse about son at 930am, I had my CT scan done at noon and then it was a long wait to get the result.
As usual, nothing to plan and my body being awkward!!! No consultant radiologist available so my consultant had to find the liver one who was also away so he had to see the registrar. Upshot is that they can see enlarged lymph nodes blocking my bile duct but it is a long way up into my liver making putting in a stent more difficult. The stent is a plastic tube they will put into the blockage so that the bile can flow and I can digest food again and my skin won’t be yellow. If they can’t do the stent via an endoscopy then they will have to do a cut and put a bag outside and then review and try again.
They are having an urgent meeting tomorrow so should hear tomorrow at some point when can go in. It might not be this week even if it is urgent so bit concerned at delay.
My blirubin has gone fro 70 to 200 from wed to tuesday - not itchy and hope it stays that way but then of course it looks as if I’m coping when I’m not. I feel ill when I eat and get all hot and sweaty but so hungry so have to eat frequently and small amounts and still pureed foods
Let you know more when I do
.
Kate
I’m sorry to hear about this and also the delays - it’s so unfair and you’ve been through so much. When you are in the situation you are in, they should do something about it straightaway and make things more comfortable for you. It makes me so annoyed to hear about this and how unwell it makes you feel.
Sending you lots of hugs
Ruby xxx
Kate thank goodness they have found what is causing this. It’s just a shame that they had to go round the houses to get there!
I know how ill this can make you feel but once it is clear you should begin to feel a lot better. I will never forget the shock I had at seeing yellow eyes, white poo and brown wee…
I wish you well
Margaret
Hi Kate
Hope they can do the stent thing ASAP. As ever…thinking of you.
Jane x
Hi Kate
I’ve been folllowing your posts and just writing to say glad that you’ve had the scan and now hoping that they can move to sort things out for you. There’s a lot of people willing you on !
With very best wishes Kathryn
Hello Kate
I just wanted to say that I hope that they can get you sorted out a.s.a.p
Caroline
Hi Kate,
Really glad that they have found the cause of the jaundice and hope you get the stent as soon as possible.
Best wishes,
Nicky
HI Kate sending you all my best wishes and hope you get sorted soon
xxJools
Hi Kate, i hope you don’t mind jumping in on your post and i’m sorry that you’re not feeling well but my sister is going through something similar to you. It is so wrong that there doesn’t seem any emergency to sort things out and no-one is available when you need them. I find this very distressing, god only knows how my sister and yourself must feel.
My sister is in hospital at the mo with ascites and up to yet they have drained 4 litres of fluid from around her abdomen.I’m sure that this is a different drain to the stent Kate. She is unable to have her chemo as her biliruben levels were 44 last week on wed and retaining fluid also in her feet and legs. They didn’t admit her until monday so over the wknd she has been in so much discomfort. It’s so annoying that they have left her so long. They haven’t said anything about her bile duct being blocked but i have been to see her today and she is turning quite yellow now. Upon doing some research i was under the impression like yourself that it’s the blocked bile duct that causes the jaundice. Perhaps they might be able to see more with an ultra sound scan now that they have drained off the fluid.
Are you unable to carry on with your chemo kate at the moment. This also causes my sister distress as she feels that her C is not being worked on.
Lets hope you both start to feel a little better soon kate.
Take care and best wishes Julie x
Kate – the lack of resources is so frustrating; now that the reason for your jaundice is clear, I hope the docs get themselves together to sort that stent for you ASAP.
Marilyn x
Hope the stent goes in with no problems - and sooner rather than later. Wish you and your liver soon mended. We don’t like yellow - nasty colour.
Take care Kate,
Jenny
x
kate- I hope you are getting phone call today and the stent is going in,take care,
Cathy
Hi Kate,
i have been following your posts and at least you know whats causing it. i’m thinking of you and hope you get it sorted.
hugs
sukes
Really angry - despite onc telling me the liver team would discuss me and let me know what the plan is, I’ve had no call. So after lunch, I’ve phoned the onc’s secretary, registrar and chemo helpline. No-one knows which liver team I’ve been referred to but my onc has been trying all day to get an answer and had no joy. Would have been nice if he had told me that he had been trying though so tomorrow am going up to the bc chemo clinic and kick a***
I look more yellow and wee is darker so know i’m worse but not going to casualty as have felt worse and it’s only a few hours till morning to see someone.
Thanks for your support.
Kate
Kate I am sorry this has happened, what on earth is wrong with these ‘professionals’. I hope that you get the plan tomorrow without causing yourself too much distress. Margaret
Kate this is shocking it really is the last thing you need - is someone going with you tomorrow for moral support? Don’t leave without the plan you need - as you say kick ar*e if you have too.
Geraldine
Hi Kate,
so very sorry to hear your latest news. Until they get the stent sorted, have you thought about elemental nutrition? You can get it from your GP urgently, as I did on Friday night. I opted for Fortijuice rather than Ensure as I don’t like milky drinks. 84 were delivered by the local pharmacist Monday morning! I am taking 3 cartons a day, 300 cals each to try and put some weight on as I need surgery for two strictures in my small intestine. It comes in various flavours and I got blackcurrant, which even my husband said tastes nice. I lost my sense of taste and smell after a fall 2 yrs ago, so I could be drinking anything. I also got domperidone for the nausea (which I had when on fec chemo. At least with these nutritional drinks, you will get some nourishment, without having gastric pain.
Take care and I will be praying you get some urgent attention tomorrow.
Liz.
hi kate
i hope your feeling ok this morning despite everything your going through. thinking of you
bbbb
Liz - thanks about the info re drinks. The onc had told me to do this as should be having a high protein and low fat diet. Damn - I love the fatty naughty foods such as cheesecake and milk puddings.
Funnily enough, the blackcurrent fortijuice but like the strawberry ones and like the milkshake type which is still appraently OK for me to have. So hungry through steroids that even fortisips/juices will do. Have a huge supply at home so will make my way through them.
Mentally, I need to know what is happening about my stent and when cos I’m scared.
Distracting myself with thought that someone is decorating my ceiling on monday so need to pack up clutter in bedroom. Should be able to get some help as me and mum can’t do it.
To you all - thanks so much for your help and support. It spurs me on to push for my treatment plan pdq.
Hope to let you know later plan but there again I said that yesterday!!!
Love Kate
HI Kate
No wonder you are scared - this is just rotten for you, and I do hope that perhaps later today you will have more of an idea about the treatment plan.
Glad to read that you are getting some decorating done to your bedroom - having read that this was something you really wanted. Don’t get too tired clearing it up though. Like everyone else, I’m thinking of you and will continue to read all your posts and hope that you get the very, very best treatment from the most competent, caring doctors. You, of all people, deserve it. Big (gentle) hug.
Love Sarah