Carls story

Hi Rob,

Sorry I wasn't around yesterday, so only just seen this.

Glad Carl's pain has gone,and amazed that after 3 treatments the tumours have disappeared, that is fabulous news, especially as his tumour markers have dropped too. that ties it together.

I can understand you being a bit confused with the Professor, but he's probably confused too, as I am sure things like this don't happen very often with this disease, I think we sometimes think these professors are super men when they like us have days when things just don't go according to plan, and he probably needed to get back in his office and do some double checking before he had more answers.

Hopefully you are back home now and both catching up with some sleep, £250 for a bed us northener's would need a suite for that price lol, also glad the dressing gown stayed in, take care and love to you both, sandrax

Good to hear that things are going well. Folfirinox even on reduced regimes can be very effective.

Such lovely comfy chairs Rob, NOT!

Anyway, that sounds amazing to me Rob, we have all heard stories of tumours disappearing and it couldn't happen to a nicer couple. Personally I am disappointed there are no dressing gown outings,

Lots of love,

Nikki

Hi Rob,

That is great news. You must both be so relieved. Waiting is so hard at the best of times, but in situations like ours, it is enough to send you crazy. Im sure everything possible and probably the impossible, was going through your mind.

Sorry I wasn't on here at the time. Please keep us updated.

Leila xx

Thanks everyone, it's nice to have some people who know what it's like rallying round when we need it.

We spoke to Carl's oncologist yesterday who is referring him off for the MRI scan, he seemed very positive about the ct scan result but also said that the tumour could be "hiding" due to the chemo which is the las thing Proff leen said to me on the phone but I don't know what that really means. I believe it means the tumour just becomes invisible on scans but is still there, a friend of ours yesterday said that happened to a colleagues lung tumour, she was discharged as cured and 6 months later she was back in hospital with the same tumour but bigger. I guess that's why we aren't riding the celebration train just yet, the MRI scan will be the best I dictation of where that stands.

I do feel relieved in a lot of ways, but Carls shoulder pain is getting worse again which makes me wonder if it's the ablation that's done that or this ninja tumour?

Anyway, I'm not going to go on about it, I understand we are in a good position still at the moment either way with a few options on our plate which I feel very lucky for.

Rob

X

Yes, you have to grab good news for as long as it lasts. And it does seem that pc can produce all kinds of weird pain which doesn't always tie up with anything. I would be comforted by the tumour markers reducing. Doesn't ablation cause inflammation at first which would certainly cause more pain until it subsides? x

Hey all, well today was the day for the mri scan, but once again things come to try us and we have had it cancelled as AXA PPP now say that the hospital he was referred to is not one of their "pathway" hospitals. When we phone the nuffield up instead to get it booked in there they just say they dont do MRI scans of the liver, which just makes me confused as it isn't like it's an awkward place to scan...

So we are back at the starting point, the oncologist secretary now thinks the NHS will be quicker but we've wasted 2 weeks of waiting list time now.

I think you are right Didge but I'm not 100% sure, his shoulder pain is there in the back ground now not as bad as originally but more than prior to the ablation. He's also really sick at the moment, he woke me at 3am with an endless vomitting session. Any time he eats or drinks at the moment he is sick, he seems better today so im hoping its comming to an end after 3 days straight. He's losing weight, I see it in his face, but I know its the chemo doing this to him. I was hoping he could have a break soon from the chemo but without the scan now I don't know how long it will be for him.

I know many of you out there are in worse situations but I am struggling at the moment a little, my dreams are really messed up and vivid and always about having to fight for something, an item, a treatment, a person. There is more struggle in my head than I care to admit most of the time.

x

Hi Rob

This disease certainly keeps you on your toes. A constant battle and fight to get things done. I ask myself the question over and over again WHY. We know we are not alone as you only have to read others stories and it is so wrong. All a waiting game. What we have to remember is to pick ourselves up, brush ourselves down and go again albeit it hard and draining. Nothing is worse than seeing those you love dearly suffering. Let your voice be heard, keep pushing until you get what you need. It may feel like bashing your head against a brick wall but never give in, although I know you won't. Take deep breaths Rob we are all behind you. Sending love and hugs from us all. Annette & Co xx

Hi Rob,

I totally understand the struggle! What a nightmare all this can be. Your certainly not alone!

Maybe we can all struggle together. Stay strong.

Love Sue x

Rob,

I can understand why you are so frustrated, they just don't realised this is a matter of life or death, we just don't have the time to wait around while they all get their acts together do we.....

I am glad that Carl's pain in subsiding, but sorry he is being sick again with the treatment, its weird how the effects can change with every treatment.

I think its the frustration that and the worry, that effects your sleep, and being the carer is just so hard, watching someone you love got through the physical pain is hard but the worry and mental anguish is even worse, once we know what we are fighting we can gird our loins, but the waiting is just awful, love to you both, take care sandrax xx

Rob, I feel your pain! It is so tiring for the carers too - relentless with the worry, trying to get hospital appointments, fighting all the time even in your dreams. Wanting good news and for it to last, but constantly knocked back into that time of stress and fear. And I do think that with pc it can move so fast and yet hospitals have their relentless schedules and waiting lists, not seeming to make any adjustments for the fact that with this cancer a week can really make a difference! Thinking of you and all of us who are up against hard times at the moment xx

Rob - just read your post and although I don't have any answers I wanted to send you and Carl a virtual hug and lots of positive vibes. Hoping things soon improve Xxx

Rob, this must be so frustrating after the confusion with the recent visit to Professor, but potentially good news regarding the illusive tumour. I hope Carl can get an appointment soon and give you both some clarity as to what is going on. As you say, it is a never-ending fight.

Take care

Steve

X

Thanks everyone, your endless support is always appreciated. Well after relentless bullying we got a scan authorised and it's now been done. Always a fight but we get there in the end! Now we need to wait and see what the doctors make of the scan results, which is always a scary time but my fingers are crossed we get some good news. Carls doing a bit better, he ate dinner last night with no vomiting so hopefully today goes smoothly too.

Rob

X

A bit of good news for you both. Not for the first time 'what a rollercoaster'!

Steve

X

That's good news, Rob. Hope today goes well x

massive massive hug Rob and Carl

love Jayne

xxxxxx

You are both such fighters - all power to you and much love.

KBO

Julia x

Great news you got the scan, lets hope the results are great too, although the wait will be awful, good that Carl is feeling a little better. love sandrax xx

Such good news you got the scan. I am glad he is feeling a little better. Thinking of you both while you await the results. Sue x

Hi everyone,

We saw one of the DRs at the hospital on Monday for Carls chemo pre-assessment and she had a report on the MRI scan with her. It basically said the new tumour they thought they saw in december is no longer there, but the old tumour that was zapped by proff Leen last year looks like it might have some cancerous activity behind it. I looked at the scans on my computer and I can see where they mean, but it looks to me like the area that Proff Leen zapped again when we were in London last time but of course I don't know that. I electronically sent the Proff the scans on wednesday but haven't heard anything

back yet. I'll give him a gentle nudge on monday as Id like to have a weekend not thinking about it.

On the flip side Carls CA19 dropped from 646 4weeks ago to 240 2 weeks ago. So in 2 weeks it fell 400 points, which is great news. We are still unaware of what is actually going on but we are just plodding onwards hoping for the best possible outcome.

Rob

x

Hi Rob, it will be interesting to see what the good Prof thinks about the scan. Great news on the Marker front. Something positive for the weekend!

Take care both

Steve

X

Rob I would take the marker over the scan any day of the week. Scans can mislead as it can be difficult to know what's tumour and what is scar tissue. The best way of knowing about activity is by a PET scan and even these can be wrong.

If the marker is declining steadily then the tumour activity is too.

Mark

Cheers guys, well Carl just text me asking if I had heard anything and I said no and he asked me to ring so I did. The Proff thinks the scan is clear now, he thinks the other radiologist judged the scan too quickly and he recommends another scan in 6-8 weeks but he was pretty confident that at least for now the liver is clear again!

Sigh of relief and a hope that he can take a break from the chemo again after the next session in 2 weeks 'cos it's taking its toll.

fantastic news Rob, have a wonderful weekend, ill raise a glass or two for you both tonight !

love Jayne

xxxx