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Just a quick update as I'm officially closing this thread now and won't be updating it any more, don't worry it's not 'cos he's taken a turn for the worse or anything, just his treatment is coming to an end for this round of chemo (1 more) and a then followed by a scan to see whats going on and if there are any more tumours that have appeared in the 3 months since last time. If there are we will follow the same course of ablation and chemo until that's not an option any more.


I'm sure he will post updates on his blog if you want to keep up to date,


www.Carldenning.blogspot.co.uk


though hopefully he'll be too busy with work and life to be able to.


Good luck to all those sufferers out there and my love to all of you supporting those who need it. I know how hard it can be!


Thanks for reading

Rob

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Hi Rob and Carl

Thank you for sharing you story with us. I am pleased it is going well and I am hoping my dad will be as fortunate as Karl. Also thank you for being such a good support with sound advice to others on the forum.

I will miss reading your comments and I will read Carl blog

All the best

Jane

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InfoForMum

Ditto what Jane said.


Love, hugs and best for the future to both of you and if you fancy staying in touch offline the moderators have my email. Suspect a right laff could be had although I would understand if you prefer to stay away from all things and people PC related.


Sarah

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Slewis7313

Thanks from me as well for sharing your (and Carl's) story. It has been quite a journey with a variety of options which I am sure others here will be able to draw on in the future as we head along our own paths with this illness. Thanks also for being so upbeat about your experiences even when they have perhaps been quite difficult. You certainly do need to have a giggle from time to time or you/we would all go around the bend. I have saved the link to Carl's blog and will keep an eye on his progress.


Take care both and of course good luck!


Steve

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  • 6 months later...

Well it's been a long time since I've posted in this thread, end of May in fact. I come on here still most days and check on everyone, sometimes posting sometimes just taking it all in.


Carls had 7 months of feeling very well, he's been pushing his business and getting back into the gym. I do feel very blessed he has managed to go that long without any chemo and without any symptoms at all.


Unfortunately he has started to suffer with right shoulder pain. It seemed to be triggered after going to the gym but has been getting worse and waking him up at night and affecting his sleep dramatically. I know that pain at night isn't a good sign so I told him to go to his gp and ask for some testing. When I saw him later that day he said the gp just told him to see how it went. This frustrated me and I told him to go back and ask for some anti inflammatories and to out his mind a rest a ca19 blood test.


Well that was done a week ago and we go today to see the gp and find out the results. I was sure it was going to be normal still as his last on at the end of September was 23, but Carl was getting very worried about it so I suggested he call the surgery and ask, I didn't think they would tell him but worth asking. They did tell him over the phone and sadly we got the news that his ca19 is "elevated". No number or any other information but we now know it's no longer normal.


Obviously we are both devastated, but I talked to Dianne today and she was very helpful as always and I have some questions to ask the gp and plan to push the ct scan ahead quickly using private health care. There is a tiny part of me hoping it's a mistake or a freak result because we both have had colds, but I think we both have faced the facts it's back for round 3.


Carl is terrified of chemo again, and it don't blame him, but he knows he is too fit and healthy to pass up on it. I also hope that if there is a tumour we can go down the same ablation root we took last time as it worked so well.


Hope everyone is doing the best they can, much love to you all

Rob

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Dear Rob, I can only imagine how your both feeling right now and my heart goes out to you both. It's not always helpful to be given answers like "elevated" and then left waiting as this understandably raises anxieties. However, it sounds like your on the ball and will get things moving. I don't know what we can say or do Rob but you know where we are so please contact us if we can be of any help/ support in any way. Love to you both Sue.xx

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Rob, sorry to hear the ca19 is on the up again, but as usual you are on top of it, lets hope the CT shows it is just a blip, we can but hope. Its not the best of news any time, but just before Christmas is even worse. Glad Carl has had 7 good months break, at least his stamina is built up again if he does have to have more treatment. Hope you have the best Christmas you can and try not to worry, easy to say I know, but I have found after 67 years that worrying about things doesn't change the outcome. love to you both, take care sandrax XX

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Hi Rob,

I know Paul's circumstances are different to Carl's as they didn't manage to get rid of all his tumour with surgery, but when his markers started to rise in September they did a scan and there were no changes. He was also having more pain at the time. He the had another scan in October when he had a bleed, and again no changes, so they can go up for no reason. Just get that scan done asap, we only had to wait a couple of days, and I remember just how unbearable the not knowing is, as Sandra says it is a rubbish time to go through this.

Take care,

Nikki

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Hi sue and Sandra and thanks for your replies. Gp told is his ca19 is 239 which is just under what it was when he had the ablation in March. Need that scan doing ASAP, I've had the gp fax the oncologist to try and get it before we go there on Tuesday for this scheduled 3 monthly check up. They weren't going to scan this time just do bloods, but obviously this shows a need for a scan.


I've already been in contact with Proff Leen's secretary in london just to touch base, we need the scan results to even know if the ablation could be done as it can't be done just anywhere I believe only in liver and lung tissue. I'm scared it's elsewhere afk somewhere that's not treatable via ablation, I'm scared of him back on chemo cos he is so ill on it. I'm just scared.


I know worrying doesn't help, and I do try to put that into practice but it's very difficult. He's just turned 41, if you looked at him today you'd never know there was anything wrong.


I blame myself for letting my guard down, the last 2 all clears in the precious 6 months I thought we'd cracked it. But it's come back to challenge us again.


Ding ding round 3...we'll fight it still, we have to. But this time we're both less optimistic, as it's hard not to be


Rob

Xx

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Ty LMD and nikki, appreciate the comments. Forgot how comforting it is just for people to let you know they are out there listening.


Nikki, did Paul's ca19 go back down again after the spike? I honestly can't put my hopes in "it's just randomly gone up" but I do know the blood test is not infallible and can give false responses. The scan is the thing that will give us the info we need. Just hope it's very soon

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Rob,

I confess that I haven't asked what they are since he had the scans! I didn't want to get hung up on them, and the sister in the chemo unit told us they will let us know if they are of any concern. Try not to blame yourself Rob, this thing is so sneaky, and no one could be more diligent than you have been,

Love to you both,

Nikki

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Rob, it's all too easy to perhaps thinking things are fine during long periods of non-treatment. Mine was fine without treatment for 10 months (during which time I had the failed surgery in Heidelberg). Then, out of the blue my marker rose as a result of the thing spreading.... It is quite relentless. That said, my current chemo seems to be working well and I am now waiting for my PET scan results. We do a lot of waiting!


I hope Carl gets his scan soon and that whatever is going on, you can find something to give it another good kicking.


Take care both!


Steve

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So sorry to hear of Carl's setback but like the other's (and you) hope its just a blip. I can only imagine the head games so I won't tell you not to worry, just keep doing what you've both been doing and doing so well, fighting the foe, living your lives and loving each other.


Much love

Julia x

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Hi Rob


Always here, whenever needed. This horrible disease is a tough journey and as others have said always seems to sneak up on you just when you begin to relax and get on with life. I know you will get the strength from somewhere to kick it's butt again but everything crossed it's just a blip. You are both always in my thoughts and prayers. Annette xxxx

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Thanks all for your kind words of support.


Nikki, I'm not surprised you have never asked, I think I wouldn't really want to know either.


thanks Julia, I'm trying to focus as much on the positive as i can.


I have my fingers crossed for your pet scan results Steve, I spoke to prof today who said the ct might be clear and if so then to try to arrange a pet scan to have a better look.10months is a fantastic amount of time! Carl got 6months after chemo finished first time till the first met was found, and now another 6-7months since chemo ended till this blood test result. I know I have to be very grateful for the periods he has had of good health but at the same time I'm just so angry with the cancer for relentlessly challenging him like this.


I'm trying to fast track a scan but as usual I find it hard to actually get anywhere with the Leeds hospital we attend. The secretary there of our oncologist said Carl's GP is supposed to be calling the oncologist this afternoon for a chat and discuss whats happening. We wanted a scan before we go in on Tuesday which seems very unlikely now, so Carl rang AXAPPP and asked about a ct through them, his oncologist isn't registered with them but Proff obviously is so i'm trying to get hold of his secretary again now to see if he can request one for Carl.


Putting my energy into this is the only thing keeping me going at the moment, I have to start focusing on what I can do to help again.


Ant and Jay you are both helping me a lot right now, even with your own battles to deal with and I really appreciate it x

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Rob,

Paul has all his scans in the same London hospital that Carl had his ablation. They always manage to arrange one for that day or at the worse the next and they are normally reported on in a few hours. I presume this is one of the places that Prof would use, so they should be able to arrange it quickly.

Nikki

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Nikki, we live in Leeds we went to london just to see the prof and get the ablation, so we would get the ct scan done here. Sadly once again im banging my head against a brick wall with the hospitals though.


NHS said cant get scan by tuesday, not sure when they will do it but thats what they said. So I thought sod it we'll do it through AXA and they said they needed a referral from a doctor registered with them so they suggested professor . So I contacted him directly and he was amazing as always and I had a letter in my email before lunch.


I contacted the xxx in leeds and they wouldnt accept an email with an attachment of the letter it had to be a fax or hard copy. So then i had to find a fax machine, which i managed and finally got them the letter, when i called they said they had it and that it was fine. So I asked when we would be likely to get a scan (expecting them to say tomorrow), "well, we are closed tomorrow and then nobody is in till tuesday to check out the referral and then we are closed for a half day on wednesday as it's xmas eve, closed thursday and friday so it wont be till the following week"


Im a little depressed about it 'cos I really thought that would be quicker but im expecting the NHS hospital now to be the faster route, but no idea when that might be.


Such an annoying time for this to happen, not only because everything seems to shut down for xmas, but im finding it hard to even think about getting into the xmas spirit, and new years...im dreading that the most.


Sorry I don't like to be a downer, im usually try to be as positive as possible, but im finding it harder this time around


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We can't believe they can't sort anything out quicker, it makes you wonder what the point in private health insurance is if you aren't near London, no wonder you feel frustrated. So sorry you have all this stress,

Nikki

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Dear Rob,


Yes, why do these things happen around Christmas!? It is probably of no help but I know exactly how you will be feeling. And don't feel guilty for "letting your guard down". While Carl was feeling well of course you will want to get on with having as normal a life as possible and I'm sure Carl wouldn't want you worrying constantly about what might or might not be happening. I know I used to drive Jonathan nuts whenever he complained of a little ache or pain.


Please post as soon as you get scan results. Jonathan had a right shoulder blade pain too. I might be able to offer some advice.


Cathy xxx

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Cheers Nikki and Cathy, carls step mum had an idea of going to a&e complaining of the pain and stating his situation. Do you think that would make them CT scan him? Or just give pain killers. Don't want to sit for hours in a&e just to be sent home!


It's not his blade really where he has the pain it's in bottom of his neck into the muscle on the top of his shoulder. Pain killers just don't seem to touch it. It does seem to be getting worse and I've to him to go try a bath and see if that will just help soothe it. Any advice is great appreciated Cathy x


We did carls street food stall today, every customer wishing us a merry Xmas and saying have a great Xmas day. Was a but of a killer but he amazes me how he handles it all. I'm finding it really really tough this time around.

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Rob, there are 3 'working' days before Christmas. If you feel the pain is getting worse and you will be both struggling through Christmas, you could try going to A and E (pick a good hospital if there is any choice) and saying the pain has become unbearable and see what they say. You still might not get a scan but it might be worth a try. Thinking of you both xxx

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Hi Rob


So sorry to be replying just now. How are things?


Its difficult to give great advice in as much as Carl isn't Jonathan as we don't know what is causing Carl's pain. Jonathan's was a referred pain we think, nothing to do with his shoulder. Anyhow, what used to work for a while was a good back massage. Whether psychological or it actually helped I don't know but I used to give his shoulder and back a good pummelling and he said it made a big difference, he often used to drift off to sleep afterwards.


Hope you are managing to get a scan sorted as it would be good to rule stuff out but I know and empathise with how difficult it is this close to Christmas


Cathy xxx

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