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

Re: Carls story

Postby sandraW » Mon Feb 09, 2015 11:05 pm

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

Re: Carls story

Postby Ant11 » Tue Feb 10, 2015 8:57 am

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
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Carls story

Postby Slewis7313 » Thu Feb 19, 2015 6:43 pm

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
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Carls story

Postby MSH » Thu Feb 19, 2015 11:20 pm

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

(removed - moderators)

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Carls story

Postby Slewis7313 » Fri Feb 20, 2015 8:06 am

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

Steve

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

Re: Carls story

Postby RLF » Fri Feb 20, 2015 5:09 pm

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
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Carls story

Postby nikkis » Fri Feb 20, 2015 6:42 pm

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

Re: Carls story

Postby sandraW » Fri Feb 20, 2015 9:22 pm

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
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: Carls story

Postby SusannaUK » Sat Feb 21, 2015 10:56 am

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
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Carls story

Postby nikkis » Fri Feb 27, 2015 10:06 pm

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

Re: Carls story

Postby sandraW » Sat Feb 28, 2015 12:25 pm

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

Re: Carls story

Postby RLF » Mon Mar 02, 2015 4:12 pm

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
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Carls story

Postby nikkis » Mon Mar 02, 2015 8:06 pm

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

Re: Carls story

Postby RLF » Mon Mar 02, 2015 8:16 pm

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
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Carls story

Postby nikkis » Mon Mar 02, 2015 8:22 pm

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