Carls story

Hi Rob,

I am sorry to hear that Carl has pain in neck/shoulder. How is Carl? Have you been to A&E?

I just wanted to let you know that I am thinking of you.

What Cathy said that worked for my husband too. Unfortunately my husband had a lot of pain, so I gave him a good massage almost every day and most of the time it eased his pain. Also he used hot water bottle a lot and that seemed to work too. Painkillers didn't really work for him either.

I hope he will be better soon and also that you can get him a scan. It is really difficult indeed around Christmas.

Thinking of you!

Susanna xxx

Thank you ladies. I'm a physio so I've tried massage but he hates it. He just complains the whole time, I'm not pressing very hard at all but I do think it helps a little after.

No we've not been to a&e, I spoke to jenny on here and she said she didn't think it would happen quicker as at this time of the year they are just trying to empty the hospitals not take on more work. We also didn't want to sit there for hours to get nowhere, and carls main fear was being admitted just before Xmas. So we've left it, but we saw the oncologist Tuesday and he seemed less negative than usual but still realistic I suppose you'd put it. The scan happens Monday via private health care as the NHS isn't going to be any faster.

I feel like things are progressing a little faster than last time, symptom wise not NHS wise sadly lol, he now has steatorrhea (White poo) which started last night and pain in his belly too, though tonight that's not as bad as last night. I'm glad we made it through Xmas without any major incidences but Monday can't come soon enough now, really need to get on top of this scan to plan the attack.

Merry Xmas all to you and your loved ones

Rob

X

Hope you get Carl sorted pronto Rob.

Thinking of you both and all fighting the fight.

Julia x

Hi Rob, haven't been here for a while but just seen your comments and hope things are moving by now. Mum was also treated in Leeds and we found the only way of anything happening quickly was via A and E. Shouldn't be that way but it just was. Sending love and best wishes for some better news for you both x

Hi dolly, I've been thinking about you just recently sand wondered how you and your mum are. I've just seen your post about your mum and I'm very sorry to hear she's not doing well. [Hospital name removed - moderator] have always been ok with us until really recently and they have massively dropped the ball.

Carl had his scan yesterday, initially we were told we can't get a copy of it as their cd burner is broken, in a private hospital I just can't believe it! We rang again today and they said it's now working again, so I have the CDs in my hands and am zipping them up on my PC to send to Prof {name removed - moderator} right as I type this. I'm too scared to look at them myself, I can read X-rays and basic MRI/CT scans but just don't dare look at them. I don't even like having them next to me, it's way too personal and I now understand why doctors won't treat relatives and close friends.

Uploading it now and it's got 25 mins left to go before I can send it on its way, though Im scared to find out the results. Carls pain is getting worse and worse at night, some nights he barely sleeps a wink and the next day he's a walking zombie. The steroid the dr gave us don't seem to be doing anything at all, and it's been a week on them now. He pain makes me very concerned as to what will be found.

We got a letter from [Hospital Name removed - moderator] today with Carl's proposed ct scan date....Sunday the 12th ok January. I'm amazed, 12 Jan? This is the Yorkshire cancer center and it's this slow, the mind boggles. So now we wait till this goes, wait to hear back from the Prof, hope for the best news possible and take it from there.

Hope you all had a uneventful Xmas, we did for the most part

Rob

X

Hi Rob,

I am pleased the scan has finally been done,and your christmas was uneventful. The pain is a worry, but I am sure the stress of it all makes the pain worse.I completely understand how you felt about the scan. Paul had chemo at home today. The nurses didn't have the tumour markers back when she left, but she said she could text them to us later. I didn't want to know! We have a scan and appointment with Pauls consultant in two weeks, so might as well put it off for as long as possible.Of course if things are ok we are going to kick ourselves!

Glad you didn't end up going to A and E, I had to take Paul's Mum in when we visited her in xx just before Christmas, and there was an 8 hour wait to be seen. Fortunately after a long wait and numerous tests they decided she had a mild chest infection (and of course lots of worry) and they sent her home. So a visit probably wouldn't have done Carl's and your stress levels any good either.

Crossing my fingers for you for that good news,

Nikkix

Hi Rob, sorry to hear Carl's pain is not improving, this disease is evil we all just get to a good place then it kicks us in the teeth again, its worry worry and more worry. We are waiting for a scan too, but we are NHS, usually we don't have to wait too long, but with holidays it will probably be quite a while. I understand how you feel about the CD too,you just dare not look, I always wanted to know everything, now I just get the info in chunks as its given, and don't push for any more. I hope Carl feels better soon and that you get good news.

Nikk, I used to ask for tumour markers all the time which was fine when they were going down, but now they are not, I persuade Trevor not to ask, as its just something else to worry about.

love to all sandrax

Thanks Nikki and Sandra,

Well I already have some news as The Proff called me at 7.30pm tonight just 2hours after I sent the images. There is another tumour on the liver, I think he said its about 2cm big which is bigger than last time. He also said there is a tumour on a "gland" near the liver, I don't really know what gland he's talking about, lymph node maybe? He also said he possibly has a 3rd tumour on another gland, but I don't think that's as clear.

So more than I was expecting, more than I was hoping for, BUT he said all 3 were ablatable like last time and he would be able to do all 3 in one session. He is looking to get Carl in ASAP, however Carl needs to be on chemo before he has it done so I think it will be in 2 weeks time if he can start his chemo next week.

We know this damn cancer will keep coming back to rear it's head at us now, but if we can keep frying it with hot needles then that's what we will do!

Again I can't recommend Professor {name removed - moderator} enough, he's been amazing, he's on holiday at the moment and he still read the scans and called me up within 2 hours. It's such a shame that not all encounters with doctors are like that.

I feel like I can breathe a sigh of relief for a couple mins and hopefully we can both get a good nights sleep.

Rob

X

Wow good that you got such a quick reply, but a shame its not the news you were hoping for. I hope Carl can get started on the chemo asap, and then the Zapping can begin! take care sandrax xx

Hi Rob,

Sorry to hear it's bad news, bliming thing, but it sounds like there is a good plan in place. We will be in London in a couple of weeks, so I am hoping that I will see Carl in that trendy hospital gown walking down Marylebone High St. Thinking of that picture of your previous visit still makes me smile,

Nikki x

Hi Rob, glad to hear they are all ablatable. I did post something about the shoulder pain being related to liver tumours sometimes and if so that would hopefully mean ablatable but the post disappeared - perhaps I never submitted it! Glad to hear the Prof is confident about it - the news could have been far worse. I only wish my Rob could get Prof for is liver tumours but we don't have private healthcare so must take what we can get. Hope you have a more peaceful New Year than your Christmas! x

Hello

Wishing you both all the best. (My Dad thought very highly of 'the Professor' too!). Good luck with the chemo and the the ablation(s).... Sending all positive vibes to you both xxx

Sorry to read Carl is experiencing pain, and that he has to start chemo again. I hope he starts it sooner rather than later and that it stops the pain for him. He has always been very inspirational and I hope he continues to beat this. I wish him well.

Leila

Thanks everyone. Well I read the report today from Proff {Name removed - moderator} and he says there is a tumour under 2cm in the liver and a tumour of about 1.3cm in a node (I assume lymph) near the liver. I know it's funny to say this (not haha funny...) but you all have been saying sorry that its not what i was hoping, but to be honest this was what i was hoping. Of course I don't wish he has another tumour, but we both knew deep down it was back, so what I really wanted was that if it's back it was blastable and thankfully it is. I know this isn't really a long term solution, but if we get another 6 months+ off chemo after this 3 month period back on it then it would be amazing.

His pain is still keeping him awake most nights, but we seem to have found a combination of morphine, codeine and sleeping tablets that seem to knock him out for a while at least.

Yesterday morning I had enough of waiting and decided i would call a nurse we see often at the chemo ward, she was Carl's trial nurse when he was on the clinical trial back in 2012. I took her number last time and she was wonderful, after a quick chat she called back and had Carl booked in today at 9.45 to see his oncologist as there was a cancellation. So he went and after an hour delay (isn't there always?) he went in and is booked in to have his first chemo a week on friday. I'm now trying to get the RF ablation done the week after so he can have some time to recover from the chemo. Things are moving quicker than last year, as we had to wait till end of feb to have it done.

Carl sent me a lovely text on new years eve at the strike of 12, he was sat next to me but sometimes things are easier to say in text I suppose. He basically said who knows what 2015 will bring, but lets just try to do one thing, and that's smile.

He is an inspiration to me everyday, and I feel very lucky to have him.

Rob

x

Sounds like he's lucky to have you too Rob. All the best for both of you, Sara x

Hi Rob, sorry to hear about the new tumours but brilliant that you are positive about moving forward - always good to have a plan. I hope Carl is managing to sleep better and Prof [Name removed - Moderator] can work his magic very soon.

I know, from a carer's point of view, you must be exhausted but you always manage to put a positive slant on everything. You seem like an amazing couple and you are lucky to have each other.

KBO

Julia x

double post oops

Hi Rob, so glad the news is not any worse than you were expecting it to be, must be the day for cancellations, we hadn't heard anything about Trevor's scan, was just about to ring up, when the phone went, it was the hospital saying there was some cancellations did we want one,yes please, so we had it done today. Seems the scanner broke down so they rescheduled every one for Saturday, but then it was repaired quicker than expected, hence the phone call.

I know what you mean about written words being easier than spoken, Trevor has found these wonderful cards and I get one every few months, he's not much good with words, himself.

As Julia says your positivity is amazing, I get the feeling that like me you need to be in control, I'm like that, ok while ever I am organising things.

Lets hope Carl is better with his chemo this time, Trevor's was completely different 2nd time around, so lets hope it works in Carl's favour. take care love to you both sandrax xx

Hi Rob

Have come onto the forum for the first time in a little while and wanted to look up how the scan had gone. I'm sorry that the tumour has popped up. I had a horrible feeling when you mentioned right shoulder pain. Jonathan was told by his oncologist that this was a referred pain from his liver as he had a tumour on the "dome". As i was saying previously, giving his shoulder a good pummelling by me in a massage seemed to help a lot (didn't understand myself why it did but it certainly seemed to).

Delighted Carls is blastable.

The very best of luck to you both with blasting the b**ger.

Cathy xxx

Hi everyone. I keep meaning to write an update but never seem to find the time. Running 2 businesses, looking after a chemo'd up Carl, looking after the dogs, keeping the house in order and now redecorating the house because we want to sell it is all getting a bit much for me. I'm a bit overwhelmed and often feel like hiding from everything. I'm not that well either with a cold that just won't go so I'm attributing that to me being grumpy.

After that moan I have some good news, carls chemo is going way better than previous cycles. He isn't having such extreme reactions and even during the chemo itself he now watches tv with me on the iPad and even eats a meal which is crazy as he used to just sleep and be sick during the whole 4 hour stay there. What's more surprising is this is at a 100% dose on 2 drugs and 80% on one (I think the irinotican) whereas he was on 50% dosage last cycle.

Although this is good news I'm also a little annoyed with the hospital as we actually asked for him to he on 50% dosage after he was hospitalised for a week the first time he had 100% they agreed to 50% but then behind our backs discussed it and changed the dose to what's above. When they told us last week the dr said " we didn't want to tell you we changed it". To me this is a massive trust issue, and now I'm going to have to keep my eye on everything, but due to him not reacting I can't be too mad. But I still think it's unethical to switch the dosage and not tell us. Carl only consented to chemo at 50% so in theory they broke his consent. Anyway we aren't pushing anything as I'm pleased he can tolerate the higher dosage but if he'd been ill I'd be taking a different angle.

We go to london on 2nd march for his ablation. So just 3 weeks today now. Will be glad when that's gone again and will be interested to see what happens to his tumour count. Haven't asked for it again since last time but will get it done before we go down and then a couple weeks after.

Otherwise everything is the same, he's coping ok, this shoulder pain has eased since the chemo started. But the best thing for that was a TENS machine I got him from Argos. Was only £27 and it worked so well when even morphine didn't touch it.

Hope everyone is doing well

Rob

Xx

Hi Rob that is good news about the chemo and I understand what you are saying about trust! That's a difficult one! I don't think your being grumpy you just sound exhausted! Don't forget to try and have some time for yourself when you can! Easier said than done I know!

Good luck on the 2nd March and you are doing an amazing job!

Sue x

Good news about the chemo, he must be so pleased with that. How the hell can the hospital say they didn't want to tell you? I don't even understand that, it is absolutely disgusting. They are talking about chemotherapy not something menial. Even though Carl has been ok, I think I would just voice your concerns, and tell them you can't trust them and can't watch everything they do.

Leila x

Hi Rob, glad to hear that everything is going so well with the treatment. The statement that they did not want to tell you about chemo changes (or anything else for that matter) is absolutely ridiculous! A kick up the backside is due I think.

Good luck to Carl for the next round of treatment with Prof.

I'll be watching Carl's progress while I wait for the good Prof. to get in touch (I have prompted him again after reading your update).

Take care both!

Steve

X

I feel for you, Rob, keeping everything afloat. Look after yourself too! x

Good luck in London and so glad to hear Carl is doing better on the chemo this time.

Don't beat yourself up for being grumpy, you're only human and bound to be exhausted too. You're doing a grand job looking after everything.

KBO

Julia x