Carls story

[J_T]

Great news Rob!

Keep on keeping on and give Carl our best wishes.

Julia x

[jay]

Hi Rob and Carl

Glad everything has gone well today. Couldn't stop thinking about the two of you today.

Love Jayne

x

[Slewis7313]

Really pleased it has all gone so well Rob. Also good to hear that you are concurring with other's opinions of the Prof.

Take care both

Steve

X

[Cathy]

Hi Rob and Carl

Everything crossed for you going forwards.

Carole - pheasant??

Cathy

Xxx

[PCUK Nurse Jeni]

Hurray Rob and Carl!

Brilliant news that the chemo is working after so few cycles as well! wow! Maybe worth the sick bowl carrying after all?

Such good news for you both - and about time too!

Have a good journey home, and hope Carl braves it!

All the best,

Jeni.

[mogs]

Just wanted to say hello and send my love and best wishes to you both. Carl's blog was the first thing I read on this site and he made me want to read more. Thanks to him I had the courage to post on here a few days ago. You both have a fantastic outlook to this dreadful disease and some of your posts have made me laugh out loud (something i havent done much of this past week).So glad to read that everything went well.

Cara x

[Janiebobs]

Rob and Carl,

I am so pleased Carl's procedure went well yesterday.

It is so good to hear some positive news

Best wishes

Jane

[InfoForMum]

Ditto for Carole's words. You saw my posts, so wont go on. Thinking of you and fingers crossed his recovery is bearable. One thing is to never refuse pain relief when in pain and take stuff prophylactically in the first few days. Teaching you to suck eggs here I know, but if he's anything like my Mum, popping pills for "no reason" is an anathema.

Hugs

Sarah

XXX

[RLF]

Been holding off updating again, I find it hard sometimes reading the thread updates on here and even harder to feel the desire to post something if it's positive when I see what everyone is currently going though. The news about David has hit me hard and even though I never posted on that thread (I was a lurker in those days) I always likened his situation to ours and today I have been in a mess reading that he passed away in January. I can't stop worrying about what the future holds for Carl now though every part of me knows it isn't helping, I just can't stop. I am a little concerned about him though, his bowel movements have gone very loose and white again, which happened when he was first diagnosed. His urine isn't dark like last time and he doesn't appear to be jaundiced, so I'm guessing it might be a Creon issue or maybe a side effect of the chemo. It's been like it for a week or so now, he says its a bit better than it was but I'm having to take his word for that obviously. Anybody had an issue like that? He has been very lucky with not needing much Creon previously and so he's upped his dosage to see if it helps.

To round off the ablation trip:

We left London on Friday at about 10am, Carl made a remarkable recovery from the RF ablation and by early Thursday evening his pain was minimal, so much so that we sneaked out the hospital and walked to the Waitrose down the road to buy some goodies to celebrate, we skipped the wine aisle even though he seemed to be gravitationally pulled towards it, I could hear his liver saying "no! please! nothing else to deal with today!".

Here's a pic!

http://postimg.org/image/vgdepaf3j/

On returning to the hospital we were greeted by the security guard who looked us both up and down and said "are you visiting?" Now Carl was still in his blue hospital dressing gown at this point and yes he is from Leeds but stereotypes aside he doesn't tend to pop out to the shops in a dressing gown! We looked at each other and laughed and explained he was a patient there. When we made it back to the room Carl was feeling a little sore again but after climbing back into bed he soon felt fine.

That night I slept next to Carl on a bed made out of chairs (that's something I've got very good at making) with the permission of the nurses/Doctors, but at 5.30am a nurse came in saw me there and shouted "You shouldn't be in here!" I bolted upright in shock, half asleep, suddenly feeling very guilty but not knowing why and blurting out "I've nowhere else to go!" She tutted and left the room, leaving me unable to go back to sleep due to my ability to feel overly guilty over stupid things. The next morning our nurse from the day before came in and I told her what happened and she said that the over night nurse had commented on me being there and she told her I had permission and that it was allowed on the ward, apparently the overnight nurse didn't normally work on that ward so wasn't used to seeing visitors but at 5.30am it's a bit late to decide to kick me out anyway!

Carl woke up feeling fine Friday morning, no pain at all and so we left at about 11am and walked the 20mins to the car park we used without any problems. 4hours of driving later we were back in Leeds and he was already nagging me about going out and doing something. Proff Leen text me Friday morning to see how Carl was which I really thought was nice, and he signed it Ed which made me confused at first as to who it was from. He said we didn't need to come down in 2 weeks for a scan as previously planned and to just get a CT scan done in Leeds instead and he'll look at that one instead. I hadn't asked previously (scared of the answer I guess) so I took the opportunity to ask him how confident he was that he had been successful in ablating the tumour and his reply was "very confident". That's all I can really ask for at this moment in time.

We worked on our weekend business Sunday, selling street food on Briggate in Leeds and even though the sky was grey, the city centre was dead and we didn't really make any money, the smile on Carl's face from doing something he loves again made it worthwhile, especially as I don't know when the chemo schedule will allow him to do it again.

I'm sending out as much positive energy as I can muster for everyone,

Rob

x

Edited March 4, 2014 by RLF

[RLF]

Oh and a big thanks for all your well wishes, we really appreciate them and send them back ten fold.

Mogs, if you can make it through the minefield of typos and incorrect usage of words (Carl-isms I call them) that is Carl's blog then congratulations! lol He's got a great sense of humour and I'm pleased it comes across so well on his blog, especially when this isn't really a laughing matter.

[Dollysdaughter]

It's so good to hear your news Rob and so pleased to hear that Carl is doing so well. I'm a relative newcomer to this site but always feel quite uplifted by your posts and love reading/watching Carl's blog. He really makes me chuckle! My mum is being treated in Leeds and, although I have migrated to the South now, I spend a lot of time drinking coffee in the Bexley wing!

Hope Carl continues to feel better and hope to bump into you both sometime soon,

Sara x

[jay]

Great news Rob and Carl, Ive been thinking about you all weekend. Im going to e- mail Carls prof in London as im considering the same treatment for my husband . He gets a scan next week and results not until end of March so I want all the options covered. Had mentioned the nanoknife middle of Jan to the chemo doctor which didn't go down too well.Take care the both of you

love Jayne

x

[mogs]

Fantastic news that he is recovering so well. I hope this continues and the smile remains on his face. With love Cara x

[sandraW]

Great really pleased for you both, we all needed that bit of good news,glad you had a good

weekend and that Carl is now feeling better sandrax

[RLF]

Hi again everyone, time for a quick update.

@Dolly, you don't want to see Carl in the chemo ward! It's a running joke with the nurses you're dodging sick when Carl's around! But if you do, feel free to say hello, just wear an apron or stay a good foot away lol

@Jay, how did the emailing go? Would be interested to hear what he said.

@Cara and Sandra, thanks for the well wishes

Well Chemo was last Wednesday, this time they attacked the side effects even harder and gave Carl the syringe driver really early that day before they started the chemo and for 5 days after it. It worked quite well and he was only sick for the first 24-48 hours and at a vastly reduced rate. By Friday he was feeling well enough to be downstairs (that has never happened until day 9 after chemo before!) and by Sunday we had gone into Leeds for a short walk in the sun and a vegetarian breakfast at a cafe by the river. Felt lovely having him so well so quick.

Things took a turn for the worse yesterday and he was feeling very rough, didn't feel well enough to do much at all and was very frustrated with himself. I tried to explain that he was doing so well as it normally takes him over a week to be up and about, but he's a very active person and I know it gets to him. Today he seems perkier and I wonder if we over did it...running before he could walk type situation and that took its toll?

He is due a scan this week to see how well the ablation worked but the Dr at the hospital (not his oncologist who was on holiday) basically said no he can't have one, he has to wait till the end of April(!) which is when his next scan is due. I wasn't at the hospital at the time so couldn't ask any questions, but I think they assumed he was requesting a CT scan but we had ultra sound scans in London which I think would be fine now. Anyway we have left messages with his actual oncologist and not heard back yet so I'll start nagging tomorrow, otherwise I'll just ask the private health care to sort one out if they willing/able to.

Not much to add at the moment other than we're looking into the Vitamin C therapy recently highlighted on the news, you can pay for intravenous infusions at around £100 a pop which is a lot, but not in the long term! Also into hydrogen peroxide therapy, as the vitamin C infusions are to create H202 (hydrogen peroxide) in the body to increase the oxygen levels which makes it difficulty for cancer cells to survive as they prefer acidic anaerobic environments. My brain is a little fried will all the info to be honest, but I can't help researching every avenue I am presented with.

Hope everyone is doing as well as they can do and thanks for reading.

Rob

x

[RLF]

We'll looks like I spoke too soon. I came home from work today to find him being very sick and he has been sick quite a few times now. The syringe driver came off yesterday and it's crazy to see how he's deteriorated in such a short time. I really can't wait for him to be off this chemo! It's really hard on him

[Cathy]

Hi Rob

Sorry to hear this. It certainly is a tough old regime and different people respond differently to it. Hopefully this is just a little dip.

Cathy xx

[Sones]

Hi Rob, sorry to hear Carls having a hard time of it again and I know its hard on you too. I wish I was able to give some advice which would help. Keep strong Rob, thinking of you. Sue.x

[nikkis]

Ah Rob, what a shame. I really think chemo hits your gut so much harder when you have had surgery. With Paul there is never a pattern as far as side effects go, it's tough, but hopefully worth it,

Thinking of you both,

Nikki

[InfoForMum]

Rollercoaster not so tastic hon. Elated for the Cyberknife experience for you both and sad he's suffering from the vomiting. Things pick up again sooon.

P.S. Hospital chair beds <<< empathy

Lots of love

Sarah

[sandraW]

Hi Rob

sorry Carl's so ill with his chemo again, Trevor had 6 cycles of 5FU then when his tumor markers went up he had a C T scan and they found 2 very tiny lesions on his liver, so they added the 2 extra drugs and he had his 3rd cycle yesterday 10th March, today he has been outside and pressure washed the patio, even with his tingly fingers, don't know what tomorrow will be like but today he has a real sense of achievement, and a clean patio lol

really hope Carl feels better soon sandrax

[RLF]

Hi everyone, I'm amazed at how well some of you/your partners/family are with the fulfirinox regime! Though on the other hand the Drs are amazed at how ill Carl is on it, they told us yesterday that it really isn't a chemo that should be making him that sick. He was really ill on gemcitibine too though and that's supposed to be a relative walk in the park as chemo goes.

Yesterday was a good day, we had lots of good news all in one day so it hit us extra hard and I'm hoping that when Carl has his chemo tomorrow he is able to channel some of that positivity into it. Firstly Carl got his letters from the government saying he will get his PIP benefits and they will be back paid as well so he'll be getting 3 weeks payment in one go. I've heard that you only get the chance to be on this benefit with cancer if you are considered terminal, now he and I don't consider him terminal and we are doing everything we can to make that not the case, but I guess that with pancreatic cancer that has reached stage 4 it's considered terminal. Hmm that's a bit of a bummer actually and killed the previous buzz but I'm writing for those of you who are looking into the benefit side of things. We obviously hope he isn't terminal and these benefits can be stopped asap, but for now they will give us a lot of help. I also looked into getting carers allowance for me as im only working part time now, but sadly you are only allowed to earn less than £100 a week to qualify for that payment. Thankfully I still manage to earn much more than £100 a week but sadly that means I won't be eligible. £100 a week seems very VERY low. The other good news is Npower are fitting us with a new boiler for free too (ours is so old we have seperate boilers for central heating and hot water, they are so old British gas won't even cover them in their insurance scheme as they have no access to the parts they would need) this will make the house a lot warmer and a lot more comfortable for Carl (and me) on those colder days/nights.

Lastly and most importantly! At Carl's pre-assessment yesterday the Dr told us his CA19-9 has dropped from 224 to 78. That was taken on the 3rd March just 1 week post ablation so we're very excited that the ablation could have been a success and his tumour markers will continue to drop. On that note we are going down to London again a week today to see Proff Leen and have the special ultrasound scan done on the tumour to see exactly how well it has gone. Early signs from the Ca19-9 look good though so I'm keeping my fingers tightly crossed. I'm just amazed they hadn't told us previously! Just goes to show some Drs are more on the ball than others...

Ah yes I had talked about the cost of the nanoknife in a previous post that it would have been £13k, well I had the bill for the RF ablation (which could never be done on a pancreatic primary tumour but works on liver and I believe lung mets) and it came in at £1750 for the whole thing, proceedure, hospital, everything. We had to pay a £100 excess the rest was covered by the insurance, but no wonder they don't like the hospital at AXA! It also means as private work goes the £2000 mark is much more obtainable if needed by people, if that was a direction they were thinking of going down. Obviously prices might vary for different patient needs but I think for a single lesion that's what to expect.

I'll probably not update after chemo as we all know it will just be another "he's being very sick post" but I will definitely after we have been next Tuesday whether it's good news or not, but I'm feeling very hopeful it will be good news.

Love

Rob

x

[nikkis]

Great news Rob and Carl, so great to hear everything is going in a positive direction, especially those tumour markers.

Paul receives the full pip, and thinking about it, we have had it now for more than 6 months, so I see that as a bit of a victory! Have you also got your blue parking badge and or disabled railcard? All benefits we find useful.

Good luck for next week, will be keeping my fingers crossed,

Nikki

[jay]

Great news Rob and Carl xx

[RLF]

Just a quick update, as we've had some further news. Carl was called into his doctors today, we didn't know this was just for a catch up so Carl was obviously very worried about what the doctor had to tell him. When he sat down he asked his GP if there was bad news for him. The GP said "oh I don't know" and started to look on his computer for any news that might be waiting for us. However there was no bad news, only further good news as Carl's ca19-9 markers have now dropped to 31 which is considered normal!

I can't explain the combination of relief, fear, joy and concern for what lays ahead. I hope and pray that this is the last we see of this hideous disease but I know we have a long way still to go!