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Good grief Rob, how many knocks can one man take? That is so rubbish after all the good news. Still it might just be a blip and I really hope it is.


Much love to you both.


Julia x

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Lovely Rob and Carl,


I really hope this is a blip. I know only too well how hard it is to keep positive at times like this, but I know you two will pick yourselves up again and get on with whatever you need to do.


Our mammoth walk is finally here this weekend, and when my friends and I were out training at the weekend I was telling them about Carl's award winning wraps, and thinking one of them would help me get through, pity you are so far away! Will be dreaming of them though, or perhaps that will be hallucinating!


Lots of love,

Nikki

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Hi Rob I really hope this is just a blip for you both! Please try and stay positive I hope the scan brings better news than you think. Take care of yourselves. Thinking of you both.

Love Sue x

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Thanks everyone, as always it's appreciated


Using Carl's private health care I've managed to get him in for a scan this morning. He's there now waiting to get it done and having some more blood tests done. I always get more nervous/scared when the scan is actually happening and before we hear the results as this is the part where they can give you bad news or really bad news.


Carl is coping pretty well, his pains in his belly have got worse and are affecting him more at night, last night he barely slept but I wonder if it's a little to do with worry about the scan. Will see tonight if he's a little better sleeping


I'm just hoping the results are something that can be actioned again, or something easy and non cancerous of course but I have my rational hat on. We have to tell Carl's mum today who has been on holiday for a week and that is never easy, hope she copes ok.


Rob

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Dear Rob,


Thinking about you and Carl like we do everyday and have everything crossed. As we all say this is so relentless and just when you have some good news, another door opens and slams straight in your face. Scans and CA markers are never easy and sohard for those waiting to get the results. We experience this too. Only at the end of the phone if you need anything Rob. Just remember you are never alone. Sending you both losts of love and hope telling Carl's Mum is not too traumatic. xxxx

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Dear Rob and Carl,

Sorry to hear the not too good news, its like being on a roller coaster, ups and downs all the time.

Just to let you know I am thinking of you too and sending big (((hugs))) to you all. Not posting much at the moment, but still reading all your posts love sandrax xx

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  • 3 weeks later...

Well quick update, after the CT scan was done we heard back from the Proff saying he could see 2 tumours in the liver, both small (1.5cm-ish). He then asked us to come down to London to see him and discuss options. I then had a call from the Oncologist saying that the report from Leeds had come back saying there were no signs of any tumours in the liver...


Well the way Carl's pain is and the fact his CA19 is up makes me lean way more to the Proffs report than the Leeds radiologist report. The oncologist said he would take the scans to the group meeting last week and discuss it there with them, we see him on Friday this week so will hear their findings then.


We also discussed with the oncologist on the phone the value of more chemo at this point in time with him feeling that it wasn't necessary. The Proff has always wanted chemo to be part of the ablation treatment but when we saw him in London he agreed it might be worth leaving chemo alone for now and just doing the ablation.


The proff also suggested a PET scan as it's now been 3 years and worth checking out the whole body in case there is something else that needs treating and he will be able to do that in the same session instead of us having to travel back to London later. I also understand it might be more to check if there are tumours elsewhere that he can't treat and so chemo is the only option.


So for now that's where we stand, it's exactly 3 years now since Carl was first diagnosed and so I feel very lucky to still have him to update you all about. I hope the treatments do their thing and I am able to keep the updates going.


Thanks for reading

Rob

x

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I'm not a regular on here, I feel guilty as I had a distal pancreatectomy for IPMT with a good outcome and no chemo and compared to many others on here mine seems minor. I admire you and Carl and your zest for life. Sending you a big hug and hope there's a positive plan for treatment. Sue H

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Good to hear from you Rob.

Hope the meeting goes to plan on Friday, please post with the next step. Best wishes to Carl, someone else who is fighting this evil disease.


Leila xx

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I hope the meeting is a good one on Friday. Carl is doing so well keep fighting this evil thing!

Love to you both and keep us updated.

Love Sue x

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  • 2 weeks later...

Well things have taken a lot longer than we had hoped as the Bradford hospital sent the scans through to Leeds instead of down to the Proff in London (as requested), plus he's been away on holiday this week. I couldn't just wait though so I text him and asked if he had seen the report or scans and he said no and to send him a copy of the report. I don't have a copy, so I rang the Leeds hospital and the secretary there emailed him a copy. He text me back very soon after saying that the PET scan wasn't conclusive and we need a MRI scan now. When I questioned why it wasn't conclusive and asked if there was a tumour back on the pancreas again (the reason we did a PET scan in the first place) he said "no, no tumour in the bed of the pancreas and also no uptake in the Liver!!" so bascially no signs of a tumour on the PET scan. He mentioned there was some uptake in a couple of ribs but they suspect that is down to trauma, however im concerned as I don't think Carls had any rib trauma, so does this mean there are tumours in the ribs?


The pain is better managed now on dihydrocodeine and steroids, however today he felt very feint and has thrown up twice. There is definitely something going on! He's not well, but the scan seems to confuse the matter even more.


So I'm waiting now on the results of his CA19-9 that was done 2 weeks ago to see where that stand, then when the Proff is back from his holiday I'll get him to do me a referral for a MRI scan and we'll take if from there. I feel very glad the PET scan didn't show any wide spread of the cancer, but as he's so unwell I just wish we knew what was causing it!


Hope you're all as good as you can be,

Rob

x

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Just had the Ca19 results and it's risen to 1000, which is quite a jump but it's been a couple months of no treatment. It's just confusing that the markers are so high and the PET was clear for liver spots. Hopefully we will find out more next week.

Rob

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Hi Rob,

Sorry to hear that Carl is not feeling well. All the waiting is just soul destroying and I understand just how you feel, I am sure we all do. You are doing such a great job supporting Carl, and the 1st chapter of his book is just great tell him well done, for raising awareness and also funds for stand up to cancer. Just lets hope the MRI shows the same results as the PET does and as for the tumour markers great while they are going down but I stopped asking when they started to rise lol. Sending you both a big cyber ((((hug)))) take care love Sandra xx

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Yes, what sandra said!


We always talk about roller coaster journeys but by gum, Carl has certainly been up and down. Fingers crossed the Prof can sort out what's occurring when he gets back.


Love to you both

Julia x

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Hi Rob,

Hope Carl is feeling a bit better and you can sort out what's going on! He is amazing raising all this awareness what a star! Thinking of you both and sending lots of love.

Sue x

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  • 3 weeks later...
Dollysdaughter

Hi Rob,

I don't really visit this forum now but I think of you and Carl often and was just wondering how you are both doing? My mum's house recently sold so no real reason to go back to Leeds now (live in the South) which feels very strange. I really hope you are both as ok as possible and send you love and strength xx

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Hi Dolly, I often think about you and lots of other forum members we don't see much anymore. I totally understand why you (and they) wouldn't come back on very often now. Bet it feels odd not to have a link back to Leeds any more!


We are not great really. After Carl had his PET scan done we saw his onoclogist who scared the life out of us by saying they at the hospital thought his cancer was in the lining of the liver or even in the diaphragm, which wouldn't be treatable by any means we already used other than chemo. Carl had his MRI scan done and we waited a long week to find out the results of it. The Proff rang and said Carl has 9 tumours in the very top of his liver close to the diaphragm which is why he is in so much pain (the pain isn't touched by anything, morphine doesn't even help). He said they are very small but ranging in size from 0.5cm-1.5cm. He thinks they will be ablatable after some chemo so he was booked in for chemo last week.


Carl started having dizzy spells and nausea, he was getting very tired too and his stool changed to a very dark colour. So after a chat to a nurse we took him into hospital and he had 2 Ulcers in his stomach one of which was bleeding, and his haemoglobin was down to 60 (that's critically low much lower and he'd have had a heart attack). They gave him 3 blood transfusions and kept him in 5 days but let him out last friday and he was doing better.


Chemo was yesterday, the first of his new folfirinox regime but at the end of the chemo sessions he had a reaction to the chemo and was taken up into the hospital and admitted again. He said to day he is feeling better but ive not heard if he will be allowed home, im really hoping he is!


So I feel a little stressed out at the moment, the chemo should help kill the small tumours leaving the bigger ones for ablating. He's having 2-3 months chemo, then another MRI and then if its all ok ablations. Then we will be going on holiday...we need one! lol


Thanks for thinking of us, it does give me some comfort!

Rob

x

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Rob and Carl,

You can be sure we all think about you both, but I feel it can be a bit unfair to expect people to post if they don't really want to, some times putting it all down on paper can help other times it can make it all feel just a little too real!

No wonder you are feeling stressed out and no wonder Carl was having dizzy spells with haemoglobin levels that low, good that they got it sorted for him.

I really hope that Carl just starts to feel better in himself, this shitty disease is just so relentless, but he has done so well, and I know he will continue to give it his all.

Hopefully the furry fox will do its job again and then he can have the ablation and things will calm down and you will get your holiday, fingers crossed. In the mean time what was it Julia? used to say "keep on keeping on" love to you both sandrax xx

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Dollysdaughter

Ah, love, I'm so sorry you have both been going through such a horrible time. The relentless treatments, tests, waiting for results... You must feel exhausted and desperate, let alone how Carl must be feeling. I really hope there is some bloody good news around the corner for you. Several of my friends have been through what seemed like fairly hopeless cancer recently and I can honestly say that they have both pulled through and are well and truly on the mend.

Take care of yourself and hope you get to have a wonderful holiday!

Xx

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Sorry to hear of Carl's latest struggles but I know you will both be doing your utmost to get him back on an even keel for more of the Prof's magic!


Always checking in to read your updates.


Much love to you both.


Julia x

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