British Liver Trust
14,098 members6,963 posts

Not a happy new year

Not the start we wanted to 2018,on tues which was my 1 year anniversary on transplant list I had my 3 monthly MRI scan and clinic appt ,I mentioned that for past 4 days I was having quite bad bowel movements (running to toilet)so they asked for sample so when I got home I again went and was shocked to see toilet full of blood I contacted hospital and went back through A&E after investigating I had a polyp removed from colon so looks like it was unrelated to my liver was relieved I must say, then Friday get call to say MRI had shown 2 of my tumours had grown and they want to do my 4th embolisation .

We are staying positive despite being fed up as they are only doing what is best for me and we will always be super grateful but sometimes you do want to scream. There are lots of others on here who have more serious and painful symptoms than myself and my heart goes out to you

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Hi

You have had a really bad start to 2018, let's hope it can only get better. Please take care. Lots of love Lynne xxxx

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Sorry to hear this. Stay positive.. wishing you the very best..take care ..xx

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I know it is so frustrating trying to be happy and not feeling anxious, depressed. Nothing ever seems tangible- take care xxx

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The not knowing the worry waiting on tests results it's hell I do hope that sort u out soon as .thinking of you and all on here.

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So sorry to hear this, but as you say, they are trying to do their best for you. It is soo frustrating when the body just does not co-operate, especially if you are like me and tell it what to do!! Perhaps going outside and having a good scream would really help! I always found screaming on the rides that I found scary made them so much more bearable.

All the very best and I hope things work out well for you :)

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Embolisations are a godsend. I have now had 9. The positives to take from this procedure is your overall health must be reasonable. You will get your transplant, but being patient is always easier said than done. I know I was that soldier, after 18 months on the list got my call only to have a major haemorrhage in the middle of the procedure, nett result no transplant, taken off the list, just grateful to be alive. Keep positive.

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Sorry to hear that what a bombshell,will you be able to get re assessed at all?

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No that’s my lot unfortunately, I still see the professor who carried out the aborted procedure every 6/8 weeks, and he just shakes his head, smiles and says what do we know. I had 4 embolisations last year which if you take things literally means my cancer is not progressing fast and I am well enough to undergo the procedure. This is all despite my hepatologist pre transplant telling me when I had come out of the coma, that I had a very short time left and embolisation was not going to be available. The only caveat I would throw in is maybe under the NHS I would be denied embolisation, as all the way through the transplant I had to be treated through the NHS, post transplant everything is being done privately. Dear old BUPA will clap and pay bonuses to their staff when I eventually leave for good. The NHS were brilliant in everything they did, but being insured for over 40 years anything I can do to relieve the burden I will do. Stay strong and your username intrigues me 1football, which team, may I ask. Lifetime Spurs fan here, old enough to be around when we last won the league, but alas too young to remember.

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Mixed emotions here, am so sorry to hear that a transplant is not an option for you it must be so hard to take in especially making it to and into theatre I really can’t imagine and then to hear how strong you sound am not sure I could be like you your obviously such a fighter and positive person.if BUPA can do embolisation why can’t NHS?

Now to really stir things up am an avid ARSENAL fan lol I go as often as I can but not been for 2 months.am 53 and can’t remember your lot winning anything haha

Take care

Huw

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As far as winning my things you ain’t wrong. Got lots of gooner mates and of course no amount of banter has passed since yesterday. As to your BUPA V NHS question I really haven’t got a clue, but being stuck on a bed where they never expected me to make never mind leave, to be told that (I read between the lines here) that’s your lot mate we don’t have unlimited resources and you ain’t going to live too long anyway so just get on with it. Now here was the underestimation they can make with someone’s character. I was told at school I would never amount to much, but I am an obstinate a****ole.

I’ve started countless businesses, employed hundreds and hundreds of people. Always search for the good in people and will never be frightened of authority. In fact pre transplant I had a stand up row with a professor at the Royal Free and was very quick to remind him that “respect is something earned, not taught”. Needless to say next time I saw him he was much more polite. But that’s the way I am. Only a lifetime of supporting Spurs can you instil that sort of never say never attitude. I have had posh seats at the Lane but steadfastly refused to make the journey and aggro that Wembley brings. Despite everyone telling me that I would never get a seat in the new stadium, wrong again and I am allowed to renew it on an annual basis due to the uncertainty around my health.

Stay strong keep in touch

Ray

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Unlike yourself am not very good with words so I tend not to say to much to those more intellectual than me so to hear of someone who gives as good as he gets is great for me but what god didn’t put in my brain he put in my hands so anything regards building or DIY am like a pig in s... lol.and to be honest if I don’t understand totally what’s been said then I simply as one of my nurses who really are fab,

Wembley is a pain to get to always has been and I do begrudge the amount of money it costs me to go and watch arsenal bring back the good old days when you could jump on a train queue and pay at the turnstiles used to love standing on the terraces when the banter from young and old made the day even more special.

Huw

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Hi

Now, I'm going back to 1990, league Cup, Oldham 3 Arsenal 0!!, Got to remember things like that, being an Oldham fan. We don't have much to cheer about!!

I've been thinking of you all. Please take care

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Ahh Oldham, rivaling the south pole for the title of coldest place on the planet!

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Yes!! I've station zebra is the nic name given to us in better times!

I just wish I felt well enough to go xxxx

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Sorry ice into I've!!

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