A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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PCUK Nurse Jeni
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Joined: Mon Jun 14, 2010 1:30 pm

Re: Carls story

Postby PCUK Nurse Jeni » Thu Feb 27, 2014 12:49 pm

Hi Rob,

Great news that it all went well. Hard for you there on your own waiting, and so touching that you shed a tear when you got the news. I bet it was a relief all right (though not a betting person, lol!) Yes, lets hope Carl is OK when he gets back. Give him all our warmest wishes.

Carole - Carl had Radio-frequncy ablation after all, and not nanoknife. Similar but different!

Kind regards to everyone,


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Re: Carls story

Postby nikkis » Thu Feb 27, 2014 2:35 pm

H Rob,
So glad to hear your waiting is over and all has gone well. Paul has been in the London clinic, I bet as a pair of foodies you are not overly impressed by their offerings, but still beats NHS cook chill!

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Re: Carls story

Postby sandraW » Thu Feb 27, 2014 3:02 pm

Hi Rob.
Really glad all went well, love and best wishes to you both

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Re: Carls story

Postby RLF » Thu Feb 27, 2014 5:01 pm

Hi Carole, as Jeni said we are in the London clinic because AXA wont pay for nanoknife so we had to have RF ablation. We were told that it would be painful because the tumour was close to the surface of the liver, and the heat it generates would burn the liver capsule which does contain nerves. He complains to me about his pain, then as the nurse or Dr comes in he says he isn't that bad! Typical lol.

We actually think the food is ok Nikki, he had the chicken curry for lunch which was really really good. He's having duck stir fry for dinner too! I've let him off his vegetarian diet while here lol But saying that he's had pretty good food in Leeds too, we've been very lucky.

Thanks Sandra, Proff just came in for his discharge. Told us it went "perfectly", also said he didnt need to come down for a check up, just have a CT scan locally and send it down to be checked. If anyone is reading this and wondering if they should use him then I would recommend him 100%, I would have recommended him even if it didn't work as he seems very concerned about his patient and has no problems with you contacting him about things. If you need him to not mention nanoknife...well just remind him constantly I guess lol.

Carl has a paranoid attack of fear thinking that they must have seen another tumour while doing the procedure...no reason to it other than these kind of things happening all the time to him, so I asked that specifically and he said no he didn't see anything else and in fact the tumour had shrunk a bit from last time, so it seems the chemo is working even though he is finding it so tough. Bit of good news all round and we our counting our blessings at this moment in time.



Re: Carls story

Postby Fifi » Thu Feb 27, 2014 5:53 pm

Just wanted to say that I think it's amazing how positive you are both being. I've been reading your posts, and you never seem let anything get you down.

I really believe that this helps so much, and goes a long way in the fight.

Leila x

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Re: Carls story

Postby J_T » Thu Feb 27, 2014 7:26 pm

Great news Rob!

Keep on keeping on and give Carl our best wishes.

Julia x

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Joined: Mon Feb 17, 2014 2:30 pm

Re: Carls story

Postby jay » Thu Feb 27, 2014 8:33 pm

Hi Rob and Carl
Glad everything has gone well today. Couldn't stop thinking about the two of you today.
Love Jayne

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Joined: Sat Dec 08, 2012 8:48 pm

Re: Carls story

Postby Slewis7313 » Thu Feb 27, 2014 8:52 pm

Really pleased it has all gone so well Rob. Also good to hear that you are concurring with other's opinions of the Prof.

Take care both


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Joined: Fri Mar 15, 2013 5:43 pm

Re: Carls story

Postby Cathy » Thu Feb 27, 2014 10:40 pm

Hi Rob and Carl

Everything crossed for you going forwards.

Carole - pheasant??



PCUK Nurse Jeni
Posts: 1107
Joined: Mon Jun 14, 2010 1:30 pm

Re: Carls story

Postby PCUK Nurse Jeni » Fri Feb 28, 2014 11:50 am

Hurray Rob and Carl!

Brilliant news that the chemo is working after so few cycles as well! wow! Maybe worth the sick bowl carrying after all?

Such good news for you both - and about time too!

Have a good journey home, and hope Carl braves it!

All the best,


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Re: Carls story

Postby mogs » Fri Feb 28, 2014 2:40 pm

Just wanted to say hello and send my love and best wishes to you both. Carl's blog was the first thing I read on this site and he made me want to read more. Thanks to him I had the courage to post on here a few days ago. You both have a fantastic outlook to this dreadful disease and some of your posts have made me laugh out loud (something i havent done much of this past week).So glad to read that everything went well.
Cara x

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Re: Carls story

Postby Janiebobs » Fri Feb 28, 2014 8:06 pm

Rob and Carl,
I am so pleased Carl's procedure went well yesterday.
It is so good to hear some positive news
Best wishes

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Joined: Mon Aug 19, 2013 12:01 pm

Re: Carls story

Postby InfoForMum » Fri Feb 28, 2014 11:39 pm

Ditto for Carole's words. You saw my posts, so wont go on. Thinking of you and fingers crossed his recovery is bearable. One thing is to never refuse pain relief when in pain and take stuff prophylactically in the first few days. Teaching you to suck eggs here I know, but if he's anything like my Mum, popping pills for "no reason" is an anathema.



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Re: Carls story

Postby RLF » Tue Mar 04, 2014 12:16 am

Been holding off updating again, I find it hard sometimes reading the thread updates on here and even harder to feel the desire to post something if it's positive when I see what everyone is currently going though. The news about David has hit me hard and even though I never posted on that thread (I was a lurker in those days) I always likened his situation to ours and today I have been in a mess reading that he passed away in January. I can't stop worrying about what the future holds for Carl now though every part of me knows it isn't helping, I just can't stop. I am a little concerned about him though, his bowel movements have gone very loose and white again, which happened when he was first diagnosed. His urine isn't dark like last time and he doesn't appear to be jaundiced, so I'm guessing it might be a Creon issue or maybe a side effect of the chemo. It's been like it for a week or so now, he says its a bit better than it was but I'm having to take his word for that obviously. Anybody had an issue like that? He has been very lucky with not needing much Creon previously and so he's upped his dosage to see if it helps.

To round off the ablation trip:
We left London on Friday at about 10am, Carl made a remarkable recovery from the RF ablation and by early Thursday evening his pain was minimal, so much so that we sneaked out the hospital and walked to the Waitrose down the road to buy some goodies to celebrate, we skipped the wine aisle even though he seemed to be gravitationally pulled towards it, I could hear his liver saying "no! please! nothing else to deal with today!".

Here's a pic!


On returning to the hospital we were greeted by the security guard who looked us both up and down and said "are you visiting?" Now Carl was still in his blue hospital dressing gown at this point and yes he is from Leeds but stereotypes aside he doesn't tend to pop out to the shops in a dressing gown! We looked at each other and laughed and explained he was a patient there. When we made it back to the room Carl was feeling a little sore again but after climbing back into bed he soon felt fine.

That night I slept next to Carl on a bed made out of chairs (that's something I've got very good at making) with the permission of the nurses/Doctors, but at 5.30am a nurse came in saw me there and shouted "You shouldn't be in here!" I bolted upright in shock, half asleep, suddenly feeling very guilty but not knowing why and blurting out "I've nowhere else to go!" She tutted and left the room, leaving me unable to go back to sleep due to my ability to feel overly guilty over stupid things. The next morning our nurse from the day before came in and I told her what happened and she said that the over night nurse had commented on me being there and she told her I had permission and that it was allowed on the ward, apparently the overnight nurse didn't normally work on that ward so wasn't used to seeing visitors but at 5.30am it's a bit late to decide to kick me out anyway!

Carl woke up feeling fine Friday morning, no pain at all and so we left at about 11am and walked the 20mins to the car park we used without any problems. 4hours of driving later we were back in Leeds and he was already nagging me about going out and doing something. Proff Leen text me Friday morning to see how Carl was which I really thought was nice, and he signed it Ed which made me confused at first as to who it was from. He said we didn't need to come down in 2 weeks for a scan as previously planned and to just get a CT scan done in Leeds instead and he'll look at that one instead. I hadn't asked previously (scared of the answer I guess) so I took the opportunity to ask him how confident he was that he had been successful in ablating the tumour and his reply was "very confident". That's all I can really ask for at this moment in time.

We worked on our weekend business Sunday, selling street food on Briggate in Leeds and even though the sky was grey, the city centre was dead and we didn't really make any money, the smile on Carl's face from doing something he loves again made it worthwhile, especially as I don't know when the chemo schedule will allow him to do it again.

I'm sending out as much positive energy as I can muster for everyone,
Last edited by RLF on Tue Mar 04, 2014 12:25 am, edited 1 time in total.

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Re: Carls story

Postby RLF » Tue Mar 04, 2014 12:21 am

Oh and a big thanks for all your well wishes, we really appreciate them and send them back ten fold.

Mogs, if you can make it through the minefield of typos and incorrect usage of words (Carl-isms I call them) that is Carl's blog then congratulations! lol He's got a great sense of humour and I'm pleased it comes across so well on his blog, especially when this isn't really a laughing matter.