A shout out to all.: Just to say,to... - British Liver Trust

British Liver Trust

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A shout out to all.

cityman62 profile image
30 Replies

Just to say,to Kimberly keep doing what your doing-its a windy old road,you WILL get there!To Tat-better now/worse or the same?get back to me,to all who have thought-and groaned-'Oh God,its that tit from Wales again,keep going,keep trying and carry on plodding up that next hill,just in case the view makes it all worth it....:)))))

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cityman62 profile image
cityman62
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30 Replies

Oh my 😂😂😂 it's that tit from Wales again ❤️❤️❤️❤️❤️❤️

How you doing Cityman ???

Bloody freezing down here in Sunny Bournemouth ❄️❄️❄️❄️ - I hope you are keeping as well as can be 😘😘😘😘😘 Rob picked up his 'treatment' yesterday 😧😩😂😢😋😆😭 mixed emotions from me but hey ho - what have we got to lose 😂😂😂😂 hugs ❤️❤️❤️

cityman62 profile image
cityman62 in reply to

In the glorious republic of Wales,the Welsh assembly decreed,some time ago now,that the law demands unstinting, endless sunny days,particularly in the slightly mad West part of the Country,where we have washed up Whales,seals,and occasional mackerel sightings, and after many tedious days poring over historical documents at the national library of Wales-some of them dating back to mediaeval times,I've unearthed a little known bye law that confirms should it rain in Ceredigion on any given day,residents/inmates have the immutable right to burn a passing English person to facilitate keeping warm.Choose your next holiday destination carefully.....Best to yuze and husband Andy xxxx.

cityman62 profile image
cityman62 in reply to

Without wishing to pry,is this the harvoni/riba regime?

in reply to cityman62

Your not prying 😘 it's RIBA/daclatsvir/sofosbivir ??? Is that it x

cityman62 profile image
cityman62 in reply to

Right, its slightly different to my regime,but the same-I guess?Has this been rolled out fully to all in England who need it?I gather the health boards have slightly dragged their heels on this-which irks me-a lot.xx

in reply to cityman62

No - they will only treat in our hospital if fibroscan is above 12 ?? - apparently they have to have a confirmed diagnosis of 'cirrhosis' in order to get the funding for the treatment 😡😡😡 which is absolutely ridiculous especially for post-transplant patients !!!!! What's the point of giving them a new liver (like Rob) when they let the virus that killed his liver attack his new liver ???? Also his 'new' liver is 66 and Robs 49 !!! It is also fatty !! Probably because Rob was 20 stone at transplant and had to have a liver from same body size (at 20st most people would have some degree of fatty liver) plus he is insulin dependent diabetic (suddenly from nowhere half way through Interferon/RIBA treatment) so that will cause him to have a fatty liver also 😁😁😁 they have no idea !!!! They will save money by treating the hep c before it goes to transplant - waiting for a diagnosis of cirrhosis is wasting time and money !!!! Because that person will need to be followed up forever ??? Wasting valuable time and taking doctors away from treating people - it makes me mad 😩😩😩😩😩 anyway get to bed 😂😂😂😂❤️

cityman62 profile image
cityman62 in reply to

Madness/short sighted and outright bloody stupid.I wish you both the best it can be.Sleep?ahh,yes,I remember that (vaguely),this is the fun side of harvoni/riba-sleep isn't an option.Still,one more week,and hopefully I'll be normal again LOL.Cysgu iawn.x

Tatjana profile image
Tatjana in reply to cityman62

Only one more week, I counted each day to 5th January lol! I think I won't foget that date! XX

cityman62 profile image
cityman62 in reply to Tatjana

Brilliant Tat,I've got 4 little peachy pills left and more riba than I want to count!Then go and see my nurse next week for bloods and see what the score on the door is-gulp!Congratulations to you,I'm ready to finish now-it got harder on this last month.Andy xx.

Tatjana profile image
Tatjana in reply to cityman62

Andy, have you been a good boy? If so, why have you got - 4 Harvoni and 'more RIBA than you want to count? You should by my counting have no more than 24 Riba. I was given the exact amount to the last date - 5th January!

Yes, the last month really did get harder but we are survivors are we not?

Andy, the score on the door finishes for me on 6th April 2016. As I said before, I had to go for two blood tests in the first month. My lovely nurse always phoned me with results.

After 2nd month, I had to go for blood tests (once a month) got phoned with results.

The third month I went for blood tests and again I got phoned with results.

BUT I do not get to know until 5th April if I got rid of the b-s-a-d for ever. I have been given blood forms and have to go for blood tests 10 days before 6th April,

You have not done any poetry lately. I did write a poem on here near the end of my treatment but after about an hour wiped it. You do know what I mean lol.

Sheila xx

cityman62 profile image
cityman62 in reply to Tatjana

Good girl,and yes,me too!LOL,I've taken all my meds like the good little boy that I am ;).worked it out-84,000 milgrms of riba-with a half-life of??????,+harvoni-a combi drug+diclofenac daily for 3 months,no wonder I've been observed by the neighbours painted blue,naked, dancing wildly at 3.am in the moonlight.:-)),best to you Andy XXX

cityman62 profile image
cityman62 in reply to Tatjana

I do know what you mean!I write like an incontent idiot, but I keep most to myself,cue gasps of relief.;-)).

Tatjana profile image
Tatjana in reply to

Yes it is bloody freezing in Bournemouth. Remember what I wrote to Art about buying a tablet container from Boots for £5.99. It has all the days of the week am and pm and it clicks open. Believe me, I could not have managed without it. XX

Cityman, I just love your posts, I can't always say that I understand them but they really cheer me up. 👍

cityman62 profile image
cityman62 in reply to

You're very kind-but don't encourage me,there's a worrying number of white-coated personnel ring fencing my property-even as I type.

😂😂😂😂😂😂 would never ever go to Wales again so you can't add me to the fire 😆😆😆😆 that made me laugh xxxxxxx Robs family live in South Wales - Tredegar and we used to visit and every single time we crossed the bridge it rained 😫😫😫 never again 😂😘😘😘 hope your doing ok cityman 😘😘❤️ your posts bring much happiness in this miserable old world ❤️❤️❤️ xxxx

cityman62 profile image
cityman62 in reply to

No my love,sounds like you had a poundland sat-nav and actually went East..... ;)

Jahida profile image
Jahida

I'm welsh too. I'm a cardiffian.

Kimberley hope you are OK!

in reply to Jahida

Did you speak to someone ??? Or am I getting posts mixed up again ??? Xxxxx

Jahida profile image
Jahida in reply to

I have posted in the thread I created robswife :)

Thank you for your sweet concern x

Tatjana profile image
Tatjana

Cityman, you wrote that in the early hours of Friday morning. I replied then but lost it before pressing 'submit reply' because I was so tired lol! I change from day to day, slept last night. I still have the shakes but cannot understand what brings them on - it could be losing energy without realising it. I will wait and see if it gets better, thanks for asking.

Here is a question for everyone - For year I have not eaten much and since the treatment I eat even less. I eat only a little and only what my body tells me to eat. If I eat a little more (I either stop eating when I feel I have eaten enough or definitely when I feel I have to). After about half an hour I feel ill and this happens every mealtime. Then it slowly passes, strange. I am thinking that it takes a long time for any of my food to digest. Am I talking rubbish?

Yes, Kimberley you are doing right, keep on!

XX

Tatjana profile image
Tatjana

Andy, have you finished, I have lost count of days. lol! I love the way you write and describe you, your life. Thanks a lot. XX

cityman62 profile image
cityman62 in reply to Tatjana

Cheers Tat,just one more day now,it'l be weird not fretting about dosages-and remembering!84 days x 1000mg of riba-thats a lot of yucky poos drugs to swallow ;-),I believe it has a long half-life too,so no doubt it lingers long in you.Well done to you +all,has it been fun?Not hugely.Would I do it again?-deffo.Only an idiot would turn down the chance to 'start again' in my humble opinion.God willing one day,hep c will be an historical curiosity to future generations. You take care,best,Andy xx

Tatjana profile image
Tatjana

Wonderful news Andy! I am still left with some side effects but my nurse sent letter on Consultant paper to my GP. If you remember the GP saw me and I took a hand written letter and a GP diagnosed me but now the typed letter was received asking for urgent referral and my GP phoned me and told me about it.

But I have serious worries at moment, hubby having operation on Wednesday, He was given wrong diagnosis (not the prostate C) but he is in agony with his back and another consultant missed the cyst causing it so operation Wednesday.

All the best to you. When do you get bloods checked - Monday?

Sheila xx

PS. We dunnit!

Bolly profile image
Bolly in reply to Tatjana

Just popping in to say hope hubby's op goes ok. From what you say mean he doesn't have prostate cancer as originally diagnosed? Good news I presume. Also hope as the drugs leave your system you slowly start to feel better. Jan and Feb are horrid months to recover in, let's hope once Spring arrives everything will be more cheerful.

Tatjana profile image
Tatjana in reply to Bolly

Thanks for popping in Bolly. I think I am in such a state lol! No, hubby has prostate cancer but he had bone scan and it is confirmed it has not gone into back - 3 and 4. About 5 months ago his back started hurting. He had injection in spine done on NHS. No good. Went private because he could not get early appointment and saw specialist who said he knew what was wrong and said he had to have a special guided by camera injection into his spine at a cost of £2,000. Long story but I managed to get cancellation on NHS. No good.

Last Friday because my husband is in agony we went to see a different specialist at the same private hospital who, when he looked at the MRI said he could see exactly what the problem was but he needed an "Xray" standing up - £100 and, of course we had it done. That consultant pointed out the cyst. We could actually see it. He said that he was furious that the other consultant could not diagnose the problem - a cyst on a vertebrae and told us he had warned the other consultant that he missed it on others before. He said that my hubby had the worst pain imaginable because it was pressing on nerves) and no pain killer could work.

He is having operation - this Wednesday 28th, yes, we have no choice!

Bolly, what do you think about that? We can hardly afford it. If it had been diagnosed months ago, he could have had it done on NHS but he needs radio therapy in March, having just finished course of hormone tablets and had an injection. To make matters worse today Saturday he has received oncology appointment letter to come in for CT scan two days after release from three day stay in hospital. Will phone Monday to try and change dates of CT scan. The letter says he has to drink 2 litres of fluid a day for 5 days which conflicts with operation.

Bolly, besides your comments, what is your advice about wrong diagnosis and having to pay private PLEASE. I am so stressed. xx

Bolly profile image
Bolly in reply to Tatjana

Oh my goodness no wonder you are stressed. Generally when people have problems with doctors or hospitals getting things wrong the advice is to speak to PALS at the relevant hospital.

nhs.uk/chq/pages/1082.aspx?...

I'm not sure they can do anything about money spent privately, it's more they offer advice on how to complain and get apologies or get help with sorting out NHS problems.

Hope you find a sympathetic ear at the end of the phone to change his scan date. We have to become our own experts and medical secretaries don't we! When I was treated at 4 different hospitals I had to keep everything in a big file and carry it round with me. It's easier now all my care is at one.

cityman62 profile image
cityman62 in reply to Tatjana

Alive+kicking-so far,we are.So sorry about 'him indoors',it must be hard-really hard.We rely on each other for support,when your both poorly,its (at least) double trouble.Bloods on feb1st,we shall see what we shall see.No worries,if its good-its good,if not nothing ventured,nothing gained.Sheila!!With such an exotic user-name!P.s.My real name is actually Rumpelstiltskin, (keep it quiet).And before you ask,no,the spinning straw into gold game is not going too well at the mo....Best,to you and the family.xx

Tatjana profile image
Tatjana

Cityman, funny you should say your real name is Rumpelstiltskin. My real name is Lisa so we have a lot in common being in a fairy tale together. So your spinning straw into gold is not going too good. Are you saying that to make me feel better, or are you trying to say you know I am hopeless when it comes to spinning straw into gold?

There is one thing that the treatment has not taken away from us and that is our sense of humour! XX

cityman62 profile image
cityman62

Wow!Tat/Sheila/Lisa,I just can't keep up!Straw I have-to bed down my chickens,the gold-I keep looking,best Nigel :-))))

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