Carls story

[sandraW]

Great news that Carl is not struggling so much with the chemo this time, whilst I can understand the hospital wanting Carl to get the higher dose, I do think its totally wrong that they didn't inform you, and I think I would have to have a word about it, just tell them straight how you feel, and how disappointed you are.

Good luck for the 2nd, for the ablation, please don't take Carl out in his dressing gown again, London hasn't recovered from the last time yet lol.

Sorry to hear you are feeling grumpy, but it is allowed you know, think its called stress, we all know lots about that on here, but I know you will pick yourself up, and continue to be the great support, love to you both sandrax

[Ant11]

Hi Rob

So pleased to read Carl is doing so well on what we all know is a really tough regime. Great news too about 2nd March and as Sandra said no shopping in his dressing gown, still makes me smile everytime. We have to all stand united and fight this battle together. Remember you are never alone. Love to you both. Annette and Co xxxx

[Slewis7313]

An interesting question I am hoping you can help with Rob. My insurers have agreed to pay for my Consultation with Prof. next Thursday. They did however point out that he is a Radiographer and as such does not carry out procedures, just scans! They are hinting that they can't fund procedures carried out by a Radiographer! Have they got it wrong?

Steve

X

[MSH]

Steve, Prof is an interventional radiologist. Point your insurers to this page.

(removed - moderators)

[Slewis7313]

Cheers Mark, that will no doubt help clear up any misunderstanding.

Steve

[RLF]

Hi Steve, just seen this, thankfully Mark answered it (as I wouldn't have been able to lol) Good luck with your consultation on Thursday, we'll be seeing him the following Monday for the ablations.

Carl is having chemo today, and for the first time this cycle I've not gone with him as I was booked up at work. His Dad has gone with him so he's not alone and his mum will look after him at home till I get back tonight, but I feel terrible about not being there, though from all reports he's handling it fine. He seems to be ok the first 3 days, by ok I mean in bed tired, nauseous but not sick and generally not well enough to be out of bed. Days 4-7 are the days he is usually sick a few times, feels rougher and complains more about feeling unwell. Day 7/8 he's normally through the worst of it and we can go out for some food or a very short walk. By day 9 he's back to "normal" and can do pretty much whatever he likes without any issues at all.

He went to the DR at the hospital yesterday for pre chemo assessment and got told his last Ca19-9 was 1170, which I don't think he has ever had so high. The last time we got told was December when it was 290ish. Seems a massive jump, the Dr said she thought it was because the first chemo hadn't started working yet so the numbers had risen. I though I read somewhere that the ca19 can go up due to chemo killing cells and more proteins being released so a higher ca19-9. He did also have a terrible cold that week which they delayed his chemo 2 days because of, so maybe the combined things made it so high. I hate to hypothesise because I'm usually wrong(!) but I'm trying to see the positive in a massive negative.

On the flip side I know the chemo is working, he already has no shoulder pain anymore and that was so bad a couple months ago that he didn't sleep at all some nights. Now he has zero pains and sleeps the whole night through. Hard to know what to think, one side a terrible CA19 value and on the other greatly improved pain levels after just 2 chemo sessions. I guess we just wait till the next CA19-9 which may be after the ablation now, that will be our next indicator.

Rob

x

[nikkis]

Rob it is such good news that Carl is tolerating the chemo and the shoulder pain has gone. Try not to get too hung up on the tumour markers (easier said than done, I know), we all know high or low they aren't always a very good reflection of what is going on.

Nikki

Ps I told one of the specialist nurses to look out for you at the Hospital and say hello. Her name is Judith and I think you will get on!

[sandraW]

Rob, as Nikki says good that Carl is handling the treatment better as he had such a terrible time with the last course,

I know what you mean about tumour markers, when they are going down its great but when they rise, well that's another story. Trevor's are high now but stable so we don't ask for figures any more, just stability lol. The best news is that the shoulder pain has gone, that must be a good sign, surely. love to you both, take care sandrax xx

[SusannaUK]

Dear Rob,

It's good to read that Carl is tolerating the chemo and his shoulder pain is gone. This must be such a relief.

Thinking of you!

Love,

Susanna xxx

[nikkis]

Lovely Carl and Rob,

I hope all goes well on Monday, I am sure it will, and I will be thinking of you. If you are on the oncology ward (first floor, new building), say hello from me to everyone, and if you meet Gladys the cleaner, ask her to sing a song, you won't regret it!

Lots of love,

Nikki

[sandraW]

Hi there both, will be thinking of you on Monday, hope all goes well, but please! no shopping in dressing gowns, the southerners think we northerners are strange enough already. take care sandrax xx

[RLF]

Thanks for the messages of support.

We are here

thats as far as i got typing this and then my phone rang, it was Proff Leen. Thats odd I thought as Carl had gone down into the ct scan room an hour ago, so why on earth is he ringing me now? I answered and greeted him. He asked me if I had a copy of his previous CT report, I said no not on me but maybe in my email, so he asked if I could recall what it said. I told him what I could recall and he said oh ok, thanks. He then asked if Carl s currently on chemo which I replied yes he's had 3 sessions. I asked if everything was ok? He just replied yes yes, and bye. His voice isn't easy to judge he is quite monotone so I'm now left on my own in this hospital room feeling sick to my stomach and shaking. Carl was scared that they would find something on the ct scan that wasn't there before and I guess so was I but I was trying to be optimistic about it and said I didn't think they would as he is feeling better with his shoulder pains which to me must mean the chemo is working.

I have no idea how long he will be now, I've no idea what's happening, I've no idea if there is any treatment going to happen or not. This truly isn't how I thought today would go and I'm annoyed at myself AGAIN for just not preparing mentally for this situation.

I'll update later when I know more, might be in an hour might be in 2-3 but I'll have to wait and see.

This wasn't what I wanted to write to you all, it was supposed to be much more upbeat, and I hope I'm making more out of the situation than there actually is, but it's hard not to.

Rob

x

[nikkis]

Rob,

I have sat were you were so many times on my own, waiting to see what the outcome was. I am sorry I have only just seen this, as would have messaged you, so you knew you wasn't on your own. Really hope everything is now ok.

Lots of love,

Nikki

[RLF]

Thanks nikki. Was literally just about to update this, he's back and he's in a lot of pain from it but he's otherwise ok. Still not seen the Proff, so I'm not 100% sure what's the outcome but he called again and I asked how it went and he said went to plan. I asked him if he saw anything else on the scan and be said no, but my head was all over the place and I'm not sure if I remembered it right. He didn't mention a ablating the lymph node and I'm concerned he left it there. Just want to clear it up with him now. I can't relax until I talk to him but I feel better now, sorry for getting so worked up on here but I'm sure you all know what it's like waiting like that! Go a bit insane in the 4 walls

[nikkis]

That all sounds good to me Rob, but as you say you need to speak to the Prof, get everything clear, and then hopefully you can relax again x

[J_T]

Rob, sorry you are feeling so worried but the Prof had the opportunity to say if he saw something untoward and he didn't.

I hope when you get chance to speak to him, he can clear it up.

Best wishes to you and Carl and hope he's feeling less discomfort now.

KBO

Julia x

[Slewis7313]

Just picked this up Rob. I am sure Julia's comments are correct and that the good Prof would have mentioned if he had any concerns. Looking forward to your next update which will hopefully paint a better and clearer picture.

Regards to Carl.

Steve

X

[RLF]

Proff came in at 6am this morning and saw us, he actually came in at 9pm last night too looking exhausted and sayinhe'd had a complicated days work. Thankfully he has confirmed that Carl just had the one tumour on his liver again and that he believes it has been successfully ablated. We'll go back in 2 weeks and see via another ultrasound how well it's worked. The tumour was very close to the surface of the liver which is why Carl was getting his shoulder pain and also making the ablation more difficult. But he is confident so so are we, I do feel a lot better now and feel a bit silly for the mad panic yesterday but as you all know it's easy to do sometimes!

We are waiting to be discharged so we can head on back up to Leeds, carls not in any pain now he said it just suddenly disappeared in the middle of the night. He didn't sleep at all though, he thinks the medication used to being him out the anaesthesia kept him wired. Hopefully he'll sleep in the car, I had a terrible nights sleep in a chair, they told me a bed would cost £250.... I could stay in a rally nice hotel for that so I declined lol. Been living up north too long....getting tight

Rob

X

[jay]

Great news Rob and Carl,

love Jayne

xxx

[Didge]

That makes sense Rob, as my Rob has one tumour very near surface and is causing a lot of pain. He is going to hopefully have it removed surgically as they thought it would be too painful to be ablated!

[Slewis7313]

Good morning Rob.......really glad that this morning's news is so positive. Glad also that Carl's pain has gone. Give him my regards.

Steve

X

[Ant11]

Morning Rob, lovely to hear the latest updates. Of course you were not being silly yesterday, it is totally understandable. Loved the picture of the chair!! Take care both of you and get some well earned rest. Speak soon, lots of love to you both Annette & Co xxx

[RLF]

Thanks everyone, but here comes plot twist number 2...

We were discharged at 7 AM this morning, at about 8.30 we pulled into the services for breakfast and a coffee. My phone buzzed and it was Proff Leen saying let me know when you can talk. So I called him up immediately, he then told me that things actually hadn't gone to plan, the ct scan they did yesterday didn't actually show a tumour in the liver or a tumour in the lymph node any more. That's why he rang me as he was confused, he said he ablated the old tumour site as he wasn't sure if that had grown very slightly but otherwise he couldn't see a new tumour any more. So I called the hospital and arranged an MRI for Carl as suggested by the Proff to have a more detailed look at the liver. Carls only had 3 chemos so it seems crazy that a tumour of over 1cm has vanished in that time. I also asked for his latest ca19-9 value and it's 634 and his last one was 1700ish so it's 2/3 less in a month

We are both very confused, a little disappointed in a way as there was no ablation so we have no idea what's happening now. We had a plan in our heads and it's deviated off that course. Of course we are amazed there was no tumour there but nobody seems to know what to make of it. We now wait until the MRI I guess, which I don't have a date for yet but hope it's soon.

So... Very good news that the tumour(s) have gone but we're just so confused at what's happening next as the plan was for 3 more chemos and then stop. Now I don't know.

Thanks for your support we both appreciate it

Ps he behaved himself last night so no late night dressing gown shopping. But he did wake up from the anaesthetic and angrily accuse the nurse of having his treatment instead of him. Luckily they found it funny!

Rob

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Edited March 3, 2015 by RLF

[Dollysdaughter]

Hi Rob,that does sound odd but in a good way! I keep dropping by this site to make sure everybody is ok so good to hear that things seem to be alright for you both, Sara x

[J_T]

Hey Rob, don't knock it - no tumours seen! Take it! The chemo has done its job with a bit of help from the determined, dogged Carl. Long may he continue to confound the medics

Much love

Julia x

Edited March 3, 2015 by J_T