Carls story

[RLF]

Hi everyone, sorry about the delay in replying and thanks for asking after Carl. I wish I had come on last week to write this update but I forgot to and now it's not the good update it would have been.

Carl finished his chemo and ablation treatment in April and then we had a wonderful holiday to Orlando in May. Was nice to get away and we spent a fortune shopping but you have to treat yourself sometimes! Carl has had monthly blood tests since then and they have all been ok, until we heard yesterday that his Ca19-9 has risen again to 80. It was 18 two months ago 23 last month.

It was a total shock this time as he is so well and bascially back to his normal self. He looks amazing and people comment all the time how well he is looking. He's in the gym every day and working on his food business most the week and weekends. He has no pain or any symptoms at all and previously he always had some pain to hint that there was an issue somewhere.

This is the first time I've felt angry. I've felt shocked, scared, sad, depressed, confused many times before, but this time I could have punched the wall (and I am not that kind of person). It hit me so out of the blue that im frustrated with myself for letting my guard down again. I'm angry not only for the obvious reasons but this is his 5th time being told the bad news and he has only had a 3month break from chemo. I realise many people would love that kind of break but he's always had 6-7 months before and I just hate to think of him back on the chemo being sick in bed, unable to do anything for 5 days afterwards when right now he is the picture of health (externally at least)

I've started my organisation skills off again and called the insurance company to get the scans authorised and then contacted the Proff to get the referral letter done. Ive faxed it to the hospital here in Leeds but they are useless at letting me know they have it, so I don't know if they have.

We are both now back in that dazed state that comes with this news, he's holding it together well, probably more for my sake, and I know he's in a good state to fight again and of course I'll be there to help him through it all as best I can. I just hope that its a small lesion somewhere easily ablated and then maybe he won't need the chemo too.

Sorry to not be the barer of good news! I do tend to spend less time on here now and sorry for not being as supportive for you all as I probably should be. But when you have some time off from this, you do want to try to forget about it for a while!

Rob

x

[PCUK Nurse Jeni]

Hello Rob,

Very sorry to hear this news - I am aware that you track the ca 19.9 and that this has proved to alert you to any issue. Can I ask, has Carl had a scan at all yet, or are you acting on the ca 19.9 blood result only? I note you are asking to get scans authorised, is this what was requested?

The scan will tell more, and hopefully, you are right, and it is just a small lesion - and even better, if it was something different.

It is also perfectly fine for you not to be on the forums when things are good Rob - and good to hear you had a nice time away in Orlando. The forums are for folk to use as they require, so don't feel in any way guilty.

Hopefully, you will have more information soon.

Kind regards,

Jeni.

Pancreatic Cancer Specialist Nurse,

Support Team.

[RLF]

Yes on the bloods alone. Only found out yesterday morning so been on the phone today trying to get things moving.

Carl's ca19 has never been wrong before and as much as I'd love it to be this time I'm not pinning my hopes on it.

Thanks for message Jeni, sometimes you need a little head space! But I do always find myself coming back when I need to

[sandraW]

Rob, That's what we are here for, for you, when and if you need us. Why would you want to come on here and be weighed down when Carl is doing so well, you feel as though you are tempting fate, I know I have been there.

It sounds as though you had a great holiday in Orlando and enjoyed your shopping we had quite a few fab holidays there too.

Sorry the CA 19's are not looking too good, its only a small rise but I know that's what happens with Carl, our oncologist always used them with Trevor too, he said with some people they don't show whats happening but they did with him.

You know I am sending all my best wishes that this is just a tiny blip, and that the professor can zap it, and you can both get back to living your lives to the full again. sending you a cyber((hug)) and one for Carl too, take care sandrax xx

[Dandygal76]

Hi Rob, of course you should be out there enjoying every moment of freedom from PC when you get the opportunity to do so. Nobody on here would disagree with that and it is nice to hear you have had some good times, even if short lived this time. I am sorry the CA19 markers are playing up. I am also sending you my best wishes that this is a blip and the markers have gone up for some other reason - perhaps no pain and other symptoms will be a good sign for you both if this is different than before. Hold onto that hope, it has got you both this far. It is understandable to be angry when it may have come and slapped you in the face again when you was not expecting it - I am surprised anger has not crossed your path before and it makes you a better person than me. I have everything crossed this will be a minor set back. x

[Ruthus]

Hi Rob

I'm really sorry to hear this news but like others have said hopefully it will be a blip in the reading or at the most a small lesion which could be ablated. I totally understand you don't come on the forum as much when you've had this good period as it must be lovely to escape it all, any reminders of it and have some normality.

I also totally understand your anger. This illness is horrid. It's just not fair, is exhausting and relentless. It's not surprising you wanted to feel at ease and breath after the constant anxiety you would have experienced. It's even worse to soak in when Carl looks so well. Like you say if there is anything untoward going on he will be in a good position with his fitness.

I hope you get some positive information tomorrow or soon so you don't have to wait too long.

Ruth x

[Dollysdaughter]

Hi Rob,

Just checking in to see how everyone is as I do from time to time and saw that things are a bit worrying for you at the moment. I hope that this is one of those hurdles which can be behind you as quickly and easily as possible. Love to you and Carl,

Sara xx

[RLF]

Hi everyone (hey dolly btw!), thanks again for all your support!

Carl's scan results came back, and currently there is nothing on there they can see which would be considered a tumour. However the oncologist said they do believe there is a tumour somewhere, maybe in the ablated tissue (a little bit was missed) and it just isn't clear at the moment.

Carl was still feeling very well until a couple days ago and now has pain across his rib cage, both sides. He says it feels like a constant stitch type of pain. I'm not sure what this could be, possibly nothing related but pain is always a worry to me.

He had someone grab his chest and now his port hurts a little too, so maybe the pain is port related, Ive told him to go talk to the drs but he doesnt always do as he is told!

We go back for more blood tests in a couple weeks and then another scan if the tumour markers are worse.

The roller-coaster continues!

Hope everyone is doing as well as they can,

Rob

x

[Dandygal76]

Hi Rob, that must be frustrating for you both to have an unknown nemesis in your midst. My dad is also the same re seeing doctors and I don't get the stubbornness. I think it is about having some control over what is happening them. I have learned not to mention cancer but sell as if he didn't have cancer... stitch both sides we would go to dr wouldn't we? It could be something else and simple.. infection perhaps? I know PC is likely the cause but it would be a shame if it was something else and easily solved wouldn't it. x

[RLF]

Well we found out carls Ca19 today and it has risen to just under 300. It's been 5-6 weeks so I don't think thats too much of a jump, I was worried it was going to be in the 1000s like last time. He literally started yesterday with some shoulder pains, not too bad and not stopping him sleeping thankfully so it looks like it is the liver (again!!!!).

Forgive me for saying this but in a way I'm oddly relieved. The unknown was freaking me out more, and now that the shoulder is playing up and the ca19 isn't crazily high I feel like there is a chance we can nip this in the bud again.

We go to see the oncologist next thursday and he said last time that he would arrange a scan for us a few weeks after that if the ca19 had risen. So that will still be the plan I guess. Maybe the private healthcare scans were too efficient and we got it done too quickly? Who'd have thought the NHS waiting times might have been of benefit to us if we'd had to go that way lol.

Anyway that's where we are, I hope that comment above doesn't come back to bite me in the backside, but I know Carl will do what he has to to keep on going.

Rob

x

[Didge]

Hope all goes well in the next stage of the plan, even though you could have done without it! Xx

[Sueoliver]

Hi Rob,

I really hope everything goes well for you both. Even though I don't write on here very often I always try and catch up with your posts.

Sending you both strength and love.

Sue xxx

[RLF]

Thanks ladies, we both slept badly last night, me due to stress and Carl I think a combination of stress and pain. I can't believe yesterday I wrote I was relieved as the unknown was so hard...seems so stupid now. Knowing the cancer is there is way worse than hoping it isn't! I've just called the oncologist's secretary as we were told if it's up he needs another scan, but typically the oncologist is on holiday! so now we wait till next week

I'll be back to update as I know more

Rob

x

[sandraW]

Hi Rob,

Hope Carl has had his scan and that the results were better than you expected, take care love sandrax xx

[RLF]

Hi all,

Well tomorrow is the big day and we find out the new scan results. They were taken last friday but of course we were booked in last THURSDAY to dicuss the results...the day before the scan! lol. So I rang the hospital and suggested that wasn't probably the correct day and they agreed and said they would call me with another appointment but that the following week (this week) clinic was very busy so might be difficult. The phone went this morning and the oncologist secretary was on the other end and she told me that the CT scan hadn't been reported on yet but that our oncologist had looked at it himself and she would flag it as urgent so a radiologist would look at it, then she would call back later about an appointment, or maybe the oncologist would ring us himself to discuss the scan.

This worried/confused me as he has never called before, and when anything changes I panic. I was trying to remember her exact words and emphasis to see if I could find any hidden meaning in what she was saying, but I couldn't. She rang to say the scan had now been reported on and that she had a cancellation for tomorrow at 1.30pm if we could make it. I said we would be there and hung up. Again my head raced, is it so urgent they are getting us in tomorrow? 1.30? isn't that lunchtime? Is it so bad he is seeing us in his lunch break? I've played this guessing game way too many times now in the past and been so, so wrong that I've told myself to just stop and try to not think about it like that. We know that his cancer is most likely back, we know he'll probably have to start chemo again (and that's the main issue for us I guess), and I have faith that he will do what he does and surprise all the medics again when it goes. Though there is a little voice in my head that says "what if that doesn't happen this time?", though I'm trying to ignore him.

Hope you're all doing well,

Rob

x

[Ruthus]

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]

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]

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]

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]

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]

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

[Didge]

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

[Guest]

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

[RLF]

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/Britishstreetfood/app/126231547426086/?app_data=%7B%22from%22%3A%22user_link%22%2C%22ref_id%22%3A%22vwq9en%22%7D

Thanks again for your support

Rob

x

[Proud Wife]

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