Another new member of the club no one wants to join
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Thank you!! Yes, I’m definitely on tenterhooks at the moment. I got a call from her at 8.30 saying “They’re coming for me in half an hour”. Mum & I both wanted to be at the hospital today but they’ve all STRONGLY dissuaded us – so I’m going round to mum’s & we’ll alternate our calls to the Specialist Nurse.
They’ve told us 8 hours & then ITU so at least we’ve been warned.
Jx
Thanks Louise, I’ll be giving the cookies a go very soon. Also with a bit less sugar, though they sound great – I’ll be passing the recipe on to another friend who needs help in the constipation department!
I live in Cornwall, UK, about 15 miles from Plymouth, Devon (the original one). Just a few thousand miles or so away from you in Indiana! Isn’t the internet a wonderful thing? x
I see that my sign on doesn’t have any info with it yet – I’ll have a teccy moment soon & try to work that out. Or is it something simple & I just haven’t pressed the right button yet?
Hey Kris, glad you enjoyed being reminded of ‘manky’. That was the ‘technical term’ used by a radiologist!
I would put the trouble remembering down to the drugs/anaesthetics etc. that’s my excuse anyway. I found the drain very uncomfortable full stop, always best when they’re out & gone.
I’m glad to hear you’re over the drain now – keep on keeping on!Hi Julia,
Best of luck for tomorrow, T-1 & counting…. I luckily escaped the liver resection so am guessing Sue may be in ITU rather than High Dependency Unit so she may also escape the moving about for a couple more days. I was in theatre for nearly 8 hours – my family were really worried as they were expecting somewhere between 4-7hours. Expect you’re all feeling very nervous/worried right now, think calm thoughts, stay positive & get to that good place in your mind – easier said than done but we’re all out here rooting for Sue too, fingers/toes/etc all crossed, take care xNight all x
Hi Val,
A belated welcome to the site from me, I’m also in the UK, Dundee. What a great word manky is, not heard that in years! And especially not with regard to the gall bladder!
My dad was diagnosed with CC last year and had the drain through the ribs and jauindice. He had a stent put in at the same time which helped relieve the jaundice and the itching from the jaundice! Big relief that was for him!
Just wanted to welcome you to the site. As Kris points out, this is a great group here and I hope you will get a lot out of coming here. You have a great sense of humour and I know that humour is definitely something that helped my dad a lot during the last 12 months.
All the best.
Gavin
I’d like to thank you for the recipe, too, Louise. My sister alternates between constipation & the other (which I have NEVER been able to spell!!) & I’d like to make some for her, too. She doesn’t have much of a sweet tooth, but cocoa & peanut butter shouldn’t be too sweet, if I cut back on the sugar.
Thanks, Julia
Val,
Where are you from and what Plymouth are you talking about? I live in Northern Indiana, and there is a town called Plymouth less than an hour away, but we’re probably nowhere close to you in miles. This site helps me believe that “it’s a small world after all.”Here is the recipe I mentioned:
Chocolate No-Bake Cookies
4 Tablespoons Cocoa
2 cups sugar
1 stick (1/4 pound) butter or margarine
1/2 cup milk
Mix and boil one minute.
Stir in:
1/2 cup peanut butter (creamy or chunky)
3 cups oatmeal
1 teaspoon vanilla.
Mix well. Drop on wax paper or on cookie sheet and chill.I usually use the microwave, but the container needs to be big so that the liquids do not boil over. I add the peanut butter before the minute of boiling is over, so it is less likely to boil over and the peanut butter gets softer and easier to mix through.
Sometimes, I use brown sugar instead of white and leave out the cocoa to give a different flavor, closer to butterscotch or maple. Might need a little more cooking time so that it is not too sticky.
Probably not a good plan if sugar is a problem, or if the butter/peanut butter is too hard on the body. But it is a treat when available. I’ve even been known to make a batch and freeze them so that they last me longer (with 6 kids, a batch in the kitchen doesn’t usually last very long).
I do enjoy your style of writing!Louise
I understand your allergy problem. My nurse said that I was the only person she had met that was allergic to medical grade plastic. The drain caused so much pain when I moved and the tube touched my skin that I basically laid still in bed for 3 weeks. But it really put things into perspective and now that I am drain free, I look back at that time and its pain and really appreciate that it is gone and how wonderful I feel now.
Psyllium seed husks seems to keep me “regular”, no constipation or the other…when I remember to take it. Why is it so hard to remember to do something I know helps me feel better? I think I need my mom here to keep track and give me my medicines.
I am glad you found us and yep, we are a fantastic group of people (if I do say so myself
) I lived in Britain for around 8 years total (1 in Canterbury and 7 in Glasgow), and I havent heard the word “manky” since I left. I dont know why, but hearing that word made me smile…and I can just imagine what a manky gall bladder would look like.Hope you recover soon.
Kris
You are brilliant!! I love your style & your sense of humour. I don’t think anyone’s told her anything yet but I’m going in to see her tomorrow & I’ll sit there until I get someone to give me the info we all need. I had a knee replacement last year (far too young – we obviously deteriorate early in our family
) & they got me out of bed & walking within 24 hours, so it doesn’t surprise me that they don’t take having 70% of your liver removed as an excuse for a lazy lie in!!Goodnight, all & I hope we all have sweet dreams.
Jx
Oh, the probiotics – already on some super-duper all singing all dancing ones thanks very much to you, Louise & LuLuu!
I’ve had previous problems with candida so knew I needed heavy duty ones! My tum is settling, though i tend to ‘urgency’ rather than constipation though that does happen if I let up on the fibre intake – I find beetroot highly effective for constipation!
Louise,
I would love the recipe for your cookies – what better way to fight such problems than chocolate? They can be a special treat as due to fighting the candida I’m on a (almost – there has to be SOME foodie treats) no added sugar, absolutely no yeast, nothing processed diet.
I know exactly what you mean about calling the doctor – I’ve had all kinds of muscle pain under the forming scar as the wound has been healing – usually because I’d done too much moving around (filling the bird feeders, getting in & out of passenger side of various cars etc etc). Fortunately I had daily visits from the district nurses to dress the wound so they were usually able to stop me getting into any panic mode. I’m a great believer in ‘leave it alone & see how it is in 24 hours’. Very difficult though.Julia,
I thought my drain ‘wire’ looked just like my ipod charger! Two at once? ARGHhHhhhhHH.. My surgeon wanted me to have two at the beginning but the radiologist put him & me very firmly right on that one. Apparently my bile ducts are not particularly large & weren’t as distended as they really needed to be & told me that I ‘would not cope with the pain of two being inserted at once & really didn’t want to go there’. He was a really cheerful chappie……! Excellent at getting the drains in though, which is the main thing. And he was the only one to categorically say he though I had cc. Fortunately my bilirubin levels came down quickly with just one so i was spared having two together. Ouch! Not too tight a hug for Sue then!
Have the nurses given Sue info on post-op stuff? Drains/central lines/catheter/cough pillows etc?
In Plymouth it’s very much ‘just because you’ve had half your guts ripped out we are still going to make you get out of bed & move around – and cough! A lot!’ They were very good at providing the cough pillows though – essential. I found that the ‘press the button every 5 mins’ pain relief (I wasn’t suitable for an epidural) made me hallucinate, though not in a serious way, more like the shakey camera work beloved of crime dramas! Very strange though. And I heard things too.Thank you all again, very best wishes for the strength we all need!
Val x
Oh Val, thank you so much for all the information you’ve given us. I recognised so much of what you described as being what Sue’s experiencing. She’s had a drain from one side & now has a drain from the other. They went in from the front for the 1st one (it certainly looks like it’s between the ribs) & the 2nd one went in from the side. She said there was a wiggly-wire-thingy which goes here, there, round the houses, through the liver & into the bit which needs draining. She looks much less yellow now.
I laughed when you mentioned the Tsunami effect on the family – that’s how mum described it, too. Please don’t hold back on the colourful language – it’s EXACTLY what I need!!
Thank you for the warning about the likely time-lag between op & final diagnosis; I would certainly have gone mad with frustration if I hadn’t been pre-warned.
I second LuLu’s on Probiotics. Sue was prescribed those in St. Thomas’ & now she gets family & friends to bring in the probiotic yoghurt drinks every day or so. She said she really can feel the difference.
I send all my very best wishes for your continued progress.
Julia x
PROBIOTICS!!!!!!!!!
The antibiotics kill all the good bacteria also which is not good for the immune system.
You have to replace the good bacteria!!!!!!http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=RW-1056
This is a good brand, start them soon and I know you’ll see a difference.
Lulu
Val, You didn’t say, but often, the antibiotics kill off good bacteria in the digestive system along with (hopefully) the bad, so if you have experienced constipation as a result of all those antibiotics, you might want to check out a health food store for multidophilus or a similar means of reintroducing good microorganisms in your body. My fun but sure cure for constipation is the no-bake chocolate, oatmeal, peanut butter cookies. They work fairly quickly, but the effect is not long-lasting, so my son will make up a big batch for me, which we nibble on for a week or more as needed. If you want the recipe, let me know.
One of my frustrations has been which doctor to call when something comes up. Is it related to the cancer or the treatment? How would I know? And of course, sometimes, we are dealing with finding a cure for the previous “cure.”
Your ramblings are like a breath of fresh air, light and breezy. Keep them coming!
LouiseHi all – again!
Thanks so much for your replies – I’ve been doing some reading of posts & feel like I’ve ‘come home’. Everyone understands! Marvellous! It may take me some time to read everything I need to though.
Marion, thanks, the wound infection was/is staph aureus but not MRSA, I’ve been tested for that ad-nauseum too.
Yes, I also have major problems with allergies to dressings. I’ve known for many years that this is a problem for me, I think we’ve pretty well exhausted all dressings known to man or woman in the UK currently, but I’m surviving with Mepore Ultra with lavish applications of Cavilon barrier spray on first. And Betnovate (steroid cream) when I get a ‘breakthrough’ skin breakdown. I will check out any other postings on this subject – thanks again.
Julia, a big hug to your sis (& you of course!). I had a 5 month wait before my surgery so I know how the waiting goes. Long story short, I had ‘gallstones’, one of which had ‘obviously lodged in my bile duct’ causing jaundice, last December. Er, no, no stones. A ‘manky’ gall bladder but no obvious stones. To be fair, my hepatologist (trained at Kings, which I understand is THE place to be) did suspect CC at that point but said the ‘blockage’ was so small they just didn’t know what it was.
I had a drain inserted (sorry, the scrambled brain just looses stuff in the filing system since the anaesthetic!) a trans something… between the ribs, through the liver, into the bile duct bypassing the blockage – vicious nasty procedure, but effective, bye bye Marge Simpson fairly quickly after that! The ‘is it’? ‘isn’t it?’ carried on for another two drain changes/cholangiograms and finally surgery was scheduled for May with the docs still not entirely sure what ‘it’ was.
I think it’s somehow easier to cope when you’re the patient as it’s the relatives/friends the the ripples spread through when the stone is dropped in the pond.
Did I say ripples? More like a bloody tsunami! Apologies, I’ll desist with the ‘colourful’ language.I consoled myself (some would call it denial) that there was no point worrying myself to death until I knew whether it was cancer & that I would deal with that when the time came. And by the time I knew it was, it was gone (Please, PLEASE it really has gone!), so then there’s no point worrying yourself to death until as & when.
I’m so pleased your sis had some time out of hospital with you & ‘normality’ for 24 hours.
The histology on my tumour wasn’t back for at least three weeks after the operation (the frozen section done during the op was inconclusive) so don’t be surprised if the docs aren’t able to tell you for sure what it is. They really may not be stalling for time!
There, I’ve rambled on, enough already, very best wishes for Tuesday, I’ll have everything crossed for you all. Any other info I can help with please please just ask & I’ll try my best to help.
Night all, Val x
Welcome, Val!! I’m in London, where my big sis is in hospital with CC. She’s awaiting the big op on Tuesday. I’m pretty sure that’s a bile-duct resection, too. I am so grateful to you for posting about your experience, although I’m truly sorry you’re having trouble with the wound. Just to read your words; “my surgeon says the operation was a success & hopes it’s a cure” was balm to my battered & bruised psyche. I so very much hope I’ll be able to say that after Sue’s op next week.
I spoke to her today & read her extracts from your posting & she asked me to tell you how good it made her feel, too. Like you, she won’t be biopsied until after the op. We’re all very scared but really positive at the same time.
I really hope you get some help with your recurrent infection & that someone on this wonderful site will be able to help you.
Good luck with your recovery & keep well.
Julia x
Ya got me Val, on the best little club and welcome to our family of caring and loving survivors. Sounds like it is just going to take time. The body knows what an ordeal it has been through and patience plus a fabulous attitude like yours will prevail. Just not fair is it to go through all that then hit the dam in the river.
But you have had good news and that is the most important thing. I am sure you will hear from more on this site that may have some good suggestions for you. Please keep us updated on how you are winning the war!!
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