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Carls story


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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!


Rob

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PCUK Nurse Jeni

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!


Jeni.

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  • 1 month later...

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

Rob

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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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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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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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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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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!


Nikki

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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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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

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On a side note, Carl (and I) won an award for our street food business from Theo Paphitis (ex Dragons Den Dragon) last month. We were both thrilled and since then Carl has used this to push the business forward. We got on the local Leeds TV channel called Made in Leeds and here is the segment




I know it's not cancer related but it's something he's very proud of and the video is worth a look just to laugh at Carl stirring the same bowl of coleslaw over and over. He thought the guy was going to edit it, but looks like they just use the raw footage.


Carl has also done some more filming for Pancreatic cancer action, im not entirely sure what it is but a film crew turned up at our house and spent some time talking to Carl and asking questions. That was a couple months ago and we've not heard anything since then but looking forward to seeing that video too.


Hope everyone can have as good a weekend as possible.


Rob

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Thanks for that Rob, and WELL DONE Carl, had to smile at the coleslaw!! it certainly was well mixed, lovely to see Carl looking and sounding so well too. keep us posted about the other filming he's quite the star lets hope the fame doesn't go to his head!! Hope you have a great holiday love sandrax xx

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Go green sue

Well done Rob and Carl!! Keep your strength up Carl- you will need it for stirring the coleslaw!! You are an inspiration.

The dreaded disease took my grandad and mum and has tried to get me in its clutches but 1 year post distal pancreatectomy I am clear, but they have now started monitoring my daughter so we need to hear more inspiring , positive stories like yours.

Hugs to you both Sue H xxxx

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Wow! Congratulations on the award (Those wraps look absolutely delicious!) what a great achievement. And Carl looks so well - long may it continue. Well done Carl and Rob. (I like the purple ribbon on your apron badge too.)


Inspirational


LMDxxx

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  • 3 weeks later...

Hi Rob,


I've just watched the video, thanks for sharing it!

Congratulations on the award! Carl looks really good!

I am so happy for you! You are both amazing and inspirational!


Susanna x

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PCUK Nurse Dianne

Hi Rob and Carl,


WE have also seen the video, and great to see such a wonderful achievement, you should be so proud, Congratulations. Your story is quite inspirational and i am sure very positive for those other forum family members. We appreciate that the 'course of pancreatic cancer' can be a difficult one, but great to see people like yourself Carl and others who determinedly battle on, and with such great achievements in the face of adversity.


We are well proud and wait for the day of the 'Purple Wraps'.


Well done and keep up the good work.


Dianne and team,

Pancreatic cancer Specialist nurse

Support Team

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Hi every one ty for your comments and continual support! Sadly I come back with bad news, as it always seems to happen just after posting last time Carl started with shoulder pains again. Not as bad as before and not affecting his sleep but otherwise very similar. In the last few weeks he has been getting some belly pains, these have occasionally woken him in the night but not every night. Last week I convinced him to get another blood test done and we got the results this morning and his ca19-9 is back up to 97. It was 18 just 5 weeks ago so just goes to show how quickly things can progress.


I know it's still not that high and that we have to wait for a scan to get the full picture but it still hits hard the 4th time you're told you might have a tumour. I'm hoping it's either the tumour that vanished last time and so can be ablated properly this time, or that's it's the original liver met that's causing the issue and this time we will see if anyone would be willing to surgically remove it.


I hope everyone else is soldiering on as best they can, I was really hoping he'd be given a longer break from chemo as it really hits him hard. But time to get the boxing gloves on again!


Much love

Rob

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