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

Moderator: volmod

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Re: Carls story

Postby jay » Wed Jun 24, 2015 1:52 pm

Fantastic news, hugs to you both,
love Jayne

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Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Thu Jun 25, 2015 1:21 pm

Thanks everyone, Carl's working hard at his catering business at the moment and has booked in 101 events/festivals over the next couple of months. A week today we are catering a party for SKY in the center of Leeds for 400 people, we've never done that many before so I might have a nervous break down then. I'm happy he has something he loves doing to focus his energy into, but sadly I get dragged into it too lol.

I think we are doing something for PCUK at some point as a fundraiser too, but when we can fit that in I don't know!

You're all still very much in my thoughts and I still read all your news, even if im quiet im still here!


PCUK Nurse Jeni
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Re: Carls story

Postby PCUK Nurse Jeni » Thu Jun 25, 2015 1:39 pm

Carl and Rob,

Fab news!

Well done Carl - amazing fighter!

I remember speaking to you on the phone and we talked about getting those boxing gloves out again, and getting back in the ring! Guess What?

Carl- TKO!!!

Amazing - have a great event and don't have a breakdown Rob!


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Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Tue Aug 04, 2015 12:30 pm

Hi everyone,
Once again I feel im writing an update when people are having a very tough time of it. Carl is still feeling good, no pain at the moment and is able to do pretty much what he wants to, though his memory is terrible! This is down to his chemo brain as its referred to and its the only thing that hasn't improved since the chemo stopped in April. He's had 3 Ca19's done since then too with the values being 11, 11, and then from last week I found out today it's 18. Obviously we are concerned about the result today being slightly higher but we are happy its sill low and in normal. That's all I can really hope for!

Treatment wise he isn't having anything from the hospital and hasn't since the chemo ended. I started him on some "phoenix tears" a couple weeks ago in the hope that will stop any further recurrences. But otherwise we aren't doing much more, as he won't stick to anything I try to get him to do lol.

It was our 2 year civil partnership anniversary last week and my 34th birthday tomorrow so we can enjoy that now knowing his ca19 is ok. We go to Devon with friends and family in 2 weeks for 5 days and I can't wait. It's his birthday in December and my hopes is he is still well so we can do something really special for that.

Thanks for reading and I keep dropping by and hopefully giving some useful advice/tips or at least words of supports to you all

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Re: Carls story

Postby MSH » Tue Aug 04, 2015 1:13 pm

Good to hear that Carl is so good and the Ca19 is so low, long may it continue.

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Re: Carls story

Postby WilliamS » Tue Aug 04, 2015 4:19 pm

It's good to read positive news and long may it continue! Best wishes.

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Joined: Sun Dec 29, 2013 10:35 am

Re: Carls story

Postby Didge » Tue Aug 04, 2015 4:29 pm

Wonderful news and the Ca-19 is well within normal limits. Keep flying the flag for all us casualties! And good luck with the 'tears'. Never could get Rob to take it with any regularity but was marvellous for pain. Keep us updated x

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Re: Carls story

Postby sandraW » Tue Aug 04, 2015 7:22 pm

Hi Rob,
I am so pleased Carl is doing so well, and you must not worry about posting "good news" it's what we all want and need to hear. We would be very shallow if we could not rejoice in your good news even though we have lost our loved ones.
I hope you have an amazing break in Devon and that the weather stays kind to you. Congratulations on your 2 year Wedding Anniversary and "Happy Birthday" for tomorrow, love to you both sandrax xx

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Re: Carls story

Postby Sones » Tue Aug 04, 2015 9:01 pm

Dear Rob I've been thinking about you both all day and so pleased to read about Carls latest results. Happy birthday for tomorrow. Love to you both. Sue.xxx

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Joined: Thu May 22, 2014 8:22 pm

Re: Carls story

Postby Sueoliver » Tue Aug 04, 2015 9:37 pm

Dear Rob,
Good news is fantastic and I am so happy for you both. Happy Birthday for tomorrow have a great day. Happy Anniversary as well.
Love to you both.
Sue x

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Joined: Mon Jul 08, 2013 8:29 am

Re: Carls story

Postby nikkis » Tue Aug 04, 2015 10:05 pm

Happy birthday Rob, and lots of love to you and Carl. So glad to hear everything is going so well.

Not sure about chemo brain. I put all my paper for shredding in the post box at work yesterday, and my post in the shredder, and can barely remember anything, but perhaps just being in close contact with all those chemicals knocked my brain cells off!


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Joined: Sun Mar 24, 2013 8:15 am

Re: Carls story

Postby J_T » Wed Aug 05, 2015 9:06 am

Hi Rob, great news for you both, I hope it continues for a very long time. Enjoy the break and have a great birthday, also happy anniversary. Keep on keeping on Carl!

Julia x

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Re: Carls story

Postby kittycat » Wed Aug 05, 2015 5:05 pm

It's lovely to hear such good news, long may it continue.


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Re: Carls story

Postby RLF » Thu Aug 06, 2015 9:07 am

Thanks everyone, I had a lovely birthday yesterday and really do appreciate all the support you guys continuously give.

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Joined: Sun Dec 01, 2013 8:43 pm

Re: Carls story

Postby Ant11 » Thu Aug 06, 2015 10:14 am

Rob, the same goes to you too. The support you give to all of us too is in my eyes "prioeless". We all have wobbles at times and this is why the "forum family" is so good. xx