New(ish) Tumours

Been to see co-ordinators at the Royal Free. Have got one quite persistent tumour that has burst back into life now measuring 2.5cm, along with another couple of smaller friends who have recently appeared on the scene now both measuring 1.3cm. Have to go in and have a 3rd Hepatic Embolisation in just under 2 weeks time. Have now been informed that I am at the top of their list and as soon as a suitable organ (large type 'O') becomes available, I will be called in.

The reality is that I have had an easy time of it really, only having become tired in the last 4 weeks. The waiting (10 months) has been mentally challenging, but have an incredible support network of family and friends that if I roll out "the pitty potty", someone quickly kicks my arse and shakes me out of it. I have had 8 people go through the matching process to become a live donor for me, which is incredibly humbling. All had blood matches, but were dismissed without any other tests because they were too small. On further investigation you are unable to decide with any degree of certainty without at least a scan. Not one of these candidates were scanned and appeared to be dismissed "out of hand". That has been my biggest frustration, I was a very large man 24st +. Now weigh in at 16st + and feel that because of previous morbid (what a word) obesity, live donation was never a consideration. I suppose it I'll matter for nothing if everything works out well, but in the uncertain world of transplantation there are no guarantees, and I can't shake off the thought that not everything was done as it should be.

Anyway moan over, here is where I am. Embolisation booked, hopefully will get the call before that and despite the trepidation about the long road to recovery. I want to start now as I have so many things to do, and I can't wait.


7 Replies

  • Good luck Ray .

  • Good luck and hope they can keep the tumours under control until transplant. As an HCC survivor its scary to hear that you have such a long wait for TP even with tumours in situ that grow and multiply.

  • The very best of luck Ray, hope you get the call very very soon. Stay strong

  • Best of luck Ray, time is of the essence now I guess but top of the O list hopefully your call will come soon. If you are a larger person then you would probably always have required a whole liver so it seems a shame they even tested for live donors. My hubby is only 5ft 5 and was only 8 1/2 stone at assessment and he was told he could have a split or live due to his small size but we have 'met' others on here who could only have a whole, large liver.

    Best wishes to you.

    Katie x

  • Very Best Wishes to you and thank you for sharing your story. Top of the list you must be over the moon! In the meantime all the best for the embolization! never the less lets hope it soon finds it's way into that bucket ready and waiting for it!

  • Good luck Ray and stay positive..hope your call comes soon Xx

  • Dear Ray,

    I do hope that the embolisation goes well and that your call comes soon...

    Sending you lots of positivity,


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