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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Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Carls story

Postby Ruthus » Wed Sep 14, 2016 10:45 pm

Hi Rob

I am in the same situation in that I too have the results of my MRI liver scan at 1.30 p.m tomorrow. I have run all the scenarios through my head and have been decorating rooms in our house like a crazy woman as a distraction. I know the probability is there are liver mets but I don't know how many, size or location. Tomorrow will reveal all. It's a horrid anxious wait. I will be thinking of you both tomorrow and hoping you have a favorable outcome.

Ruth x

Proud Wife
Posts: 742
Joined: Sun Jan 17, 2016 9:28 am

Re: Carls story

Postby Proud Wife » Wed Sep 14, 2016 11:09 pm

And I will be thinking of you all tomorrow. The very best of luck that both Ruth and Carl's scan results are good. Rob as hard as it is, try not to overthink things, you will end up making yourself ill.Perhaps they've fitted you in because they knew they shouldn't have messed up the appointment in this first place. But I understand how your mind works, have done exactly the same. Xx

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Thu Sep 15, 2016 9:01 am

Thanks Ruthus and PW, when I get worked up I always feel I've nobody to talk to and come here to just write it out, makes me feel a bit better usually, though I've woken up today stressed and had a broken nights sleep. I know Carl's not slept well as I've heard no snoring! lol. I can feel me making myself sick like you said PW, been a while since I've been this worked up and strange as it seems it always feels like the first time again.

Why do you think there are liver mets Ruth? Has something happened? Odd our appointments are the same time, though out oncologist is always running at least 30min late so I doubt we'll be in till well after 2! Good luck and let us know what they say.

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Thu Sep 15, 2016 9:30 am

Hi Rob and Carl,
The waiting is endless and I recognise those feelings only too well,
I am glad coming on here helps Rob, I know that feeling too not being able to say how you are feeling to Carl and other family and friends as you don't want to bring them down too.
Everything crossed for you both today,and for you too Ruth, please lets us know how it goes, when you are ready of course, you both have good health on your side, take care love sandrax xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Carls story

Postby Dandygal76 » Thu Sep 15, 2016 11:58 am

Waiting is horrible around all this and waiting on scan results is the absolute worst. I hope everything goes well today and that Carl gets some sleep tonight. Ruth, same to you my lovely. I am thinking of you all. x

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Carls story

Postby Ant11 » Thu Sep 15, 2016 11:59 am

Good luck to both Carl and Ruth today. Always in our thoughts and prayers. xxx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Carls story

Postby Didge » Thu Sep 15, 2016 12:39 pm

Thinking of you both. So hard to cope with, the fear and dread. Sometimes, even if it is not the news you wanted, it feels better after the appointment because you have a plan of action. Xx

Marmalade

Re: Carls story

Postby Marmalade » Thu Sep 15, 2016 12:42 pm

I just wanted to add my good wishes and prayers for you both today. M xx

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Fri Sep 16, 2016 3:12 pm

Thanks for the well wishes and thoughts/prayers. I'm not a religious person at all and neither is Carl, but I happily accept positive energy in any form of donation and appreciate you would even have us in your thoughts let alone your prayers :)

Carl's results were as expected, he has 1-2 small tumours in his liver again. One new one at the bottom of the liver and on one that is actually an old one that has already been ablated once but as it is so high up its right under the diaphragm which means RF ablation is tricky there so if he has it again he will have nanoknife done at XX hospital and no heat is created and it wont damage the diaphragm. Like Ruthus we felt relief, 2 seems manageable and hopefully beatable again. The odd thing was the oncologist who is normally doom and gloom was very encouraging. He is sending carls case forward to the liver team, and they will decide what they want to do. The outcome might be surgery to resect the liver or nanoknife on its own or chemo on its own, or any combination of the above. He said as Carl has is 4 year pancreatic cancer anniversary in 4 days time his case is so unusal that the hospital might be willing to do things (like surgery) that they would never normally do for a pancreatic cancer case.

It's a strange feeling to think Carl might be experimented on in a round about way, doing things that aren't usually done, but at the same time a blessing that he is able to be considered for it at least.

We plan to have a holiday next week, probably off to spain to enjoy some deserved relaxation, Carl's street food business is non stop at the moment.

If you would like to vote for us to win best looking street food van please do! There is the link, we are the green horse box and the business name is Market Wraps

https://www.facebook.com/Britishstreetf ... q9en%22%7D

Thanks again for your support
Rob
x

Proud Wife
Posts: 742
Joined: Sun Jan 17, 2016 9:28 am

Re: Carls story

Postby Proud Wife » Fri Sep 16, 2016 4:40 pm

Excellent news Rob. You will both be in my prayers too - you can never get too much positive energy!

Carl is remarkable. He's been made to suffer quite clearly and is being tested again but almost 4 years is brilliant. Look forward to reading your posts when it's in double figures.

Now go win that competition!!!!

All the best
PW xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Carls story

Postby J_T » Fri Sep 16, 2016 10:44 pm

Just dropping in to say hello to Rob and Carl. Keep on keeping on lads!

It must be exhausting but you are both doing so well and supporting each other in a phenomenal way. I salute you both!

Much love

Julia x

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Mon Nov 07, 2016 1:13 pm

Well it's been a lot longer than I meant it to be before I posted again.

Thanks to all who voted and WE WON! I'd never seen Carl so happy to finally get some recognition for all his hard work.

It's been a horrible stressful couple of months, Carl has been in quite a bit of pain this time with the tumours (there are now up to 7 showing on his liver) and having his 1st folfirinnox chemo 2 weeks ago. His next one is tomorrow and already for the last 2 days he's been in a bit of a mood knowing its coming. I can see him sliding into a depression and having anxiety issues as this continues. At first all the cancer side effects were just physical, now id say they are more mental than physical, it's getting too much for him to handle. I think each time it returns he is affected worse (me too probably) as I guess you think "is this time the time?". I've faith that its not, he generally is the picture of health and unless you were with him for most the day you wouldnt know there was anything wrong.

Ive managed to talk to the Prof and hope to get him ablated in the next couple of weeks, as long as the insurance company doesnt play silly buggers again. I know it's the chemo that's affecting him the most and as soon as I can get him off it the better!

Hope you're all ok and sorry I've not been around to offer the support that we give so much of on here!
Rob
x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Carls story

Postby Dandygal76 » Mon Nov 07, 2016 1:29 pm

Rob... i know I bang on about the same old stuff and bore everyone to death or worse... really irritate them. But I have said before that one thing that contributed to our turning point on chemo was anti depressants. 2 people separately said have you tried anti depressants they really help with chemo. Then PCUK mentioned it and I sold it to dad... well if chemo is killing everything else then it must effect your serotonin. I cannot emphasise enough the lift that came 4 weeks later and it got better and better.. not just in depression but relieving other symptoms.

It is not the time until it is the time and you have to live for today. Get it out of his liver and I am sure you will fight many more days. The new drug is coming in January with 6+ months as second line treatment. Carl is young and that could translate to years. Much love to you both. x

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Mon Nov 07, 2016 3:04 pm

Hi and thanks for the advice dandy! Which antidepressant is it? Carl does have some sertaline laying around but he didn't find it that useful in the past but maybe he needs a higher dose


Also what's the new drug? Guess I've been out of the loop for a while!

Thanks
X

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

Re: Carls story

Postby Justamo » Mon Nov 07, 2016 3:20 pm

Hello Rob, I have only just landed on Planet PC and I'm a bit of a beginner at all this. I was going to say PC virgin, but that sounded too silly. Even to me.

I am so impressed by your fortitude and strength and plain bloody-mindedness. You are a first class example of Never Giving Up and I admire you for it. I believe that it is harder to watch somebody suffer cancer than to have it yourself (I've been on both sides, so I know) and although I am aware that you get plenty of support on this forum you also need to look after yourself.

Very, very best wishes to you both. You're both on my prayer list which gets longer everyday. I am now at the stage where I have to get up before I go to bed so that I can fit them all in.

Love, Mo