Carls story

[Didge]

Thanks Sarah, that was most interesting! Unfortunately we would have to pay privately for the nanoknife and can't see how that could be done unless we can do some serious fundraising. And Carl, I am with you on the holistic approach too - anything which helps the body to cope at the very least can't be bad. I have limited (very limited) success with my bf as he has spent all his life on what is known in the US as the SAD (Standard American Diet) with a lot of curries, Chineses thrown in too, together with vast amounts of sugar! Have no way near your success of controlling his intake - which I had! Good luck

Didge xx

[J_T]

fascinating to look at the scan Rob, I never saw any of Ray's.

[RLF]

Right been a while so here is an update. I know I can be a little long winded so I'll try to keep a long story short.

Like you Didge we can't afford a nanoknife on our own, my father in law was kind enough to offer the money for it if we needed it but we both felt guilt about this and luckily we have private health care as mentioned. Now after the scans Proff was going to write a report to the AXA people saying he wanted to do an ablation but not saying nanoknife as they don't cover it. Not surprisingly to me (sometime I just wish I could do everything myself so it is done right) he wrote nanoknife on the report, so they rang to say no we don't cover that so we won't pay out for it, it's not a proven therapy that works (boy did she sound smug and like she was saving us from something experimental). So looks like we aren't going now and we'll be going to the clinic for the RF ablation instead. It should work as well but he'll probably have a lot more pain after so it's just a bit frustrating that the one thing I kept stressing shouldn't be written on the report, was written. When I rang his secretary and told her she said "oh no! I didn't proof read it, but I did remind him!", and how I wish she had proof read it. Anyway sorry to sound so ungrateful, I am pleased we still can have something done and it's on the insurance but it's just drifted away from the plan I had in my head of what I wanted to be done, and so I feel a little lost and scared as it's the unknown.

We go to London a week on thursday to have it done, we go into surgery at 7.30 and he should be done by 8.30. Crazy that something so quick could be the answer to all this worry, for now at least, I know this thing can throw curve balls way too often.

Carl had chemo number 2 a week ago today. His white bloods were still low and only just in the ok range to get it done which amazed me as it had been 3 weeks since the last one. He had loads of meds to help this time, but he was still really really ill. Still is to be honest. Today is the first day he's been up and about on his feet without saying he feels dizzy and needs to go back to bed. Sickness and diarrhea were not as bad as last time, quite a lot better in fact but I still went through 9 of those cardboard sickness bowls in the first 48hours, though last time he did that in about 3 hours so yes bad but better. He felt something new this time though, like electricity running through his body which stopped him sleeping and made him feel pretty rough. Not sure what that was a reaction to, but we will tell the Dr next time and hopefully they might be able to help with that.

I'm having difficulty with keeping him eating the foods I want him to at the moment, and 'cos he feels so unwell with the chemo I feel like I should just give him what he wants, but I'm desperately trying to keep him eating really well but we've had a couple of Chinese takeaways making it into the house, though always tofu so no meat but I think laden with sugar. If I don't give him his parents do so he gets his way the little swine lol. It's cheese he craves mostly right now so i've orded some non dairy and hope it comes soon.

Yes J_T as someone with some radiology training it was really interesting, though ive never used ultrasound for imaging before so didn't really know what I was looking at.

Anyway, hope everyone is doing well and thanks again for reading.

Rob

x

P.S oh and for anyone looking at hat shopping (that's all we seem to do these days lol) TK Max is really good for it! At least the 2 big ones we have been to were, so I think we have at least one for each day of the week now!

[J_T]

Hi Rob, sorry to hear Carl is struggling a bit, it's just a constant, exhausting battle

All this 'oh we don't cover that' makes me SO cross! We're talking about someone's life here, someone who deserves the best chance they can get FGS! Hopefully the alternative treatment will be just as good. KBO guys!

Thinking of you both.

Julia x

[InfoForMum]

Awww Carl, so sorry he's so poorly. A few practical tips on the old cold sensitivity. Rubber gloves next to the fridge and freezer - expensive thin but grippy ones are good - colour and design optional. Silk socks, silk helmet liner (the kind bikers use rather than anything else!), silk ski glove liners and other optional silk underthings. Good for layering and very kind on skin that can be very dry and sensitive. Double sided faux fur fleece throw. Great king sized ones on Amazon for £15 quid that machine wash. Don't fork out squillions unless either your design ethic or objection to manmade fibres forces you too. Mum's was always next to her fave chair so a nap was an easy option. Good exfoliating mitt and for a touch of luxury some uber rich L'Occitane body lotion - 25% shea butter if you can afford it. Very kind to poorly skin, low odour and very, very indulgent.

As for the docs FUBAR. Bloody hell! He had probs with his report for Mum too, but it was only cosmetic. Called her "borderline respectable" instead of resectable and to be fair it's not entirely incorrect. I'm hoping your underlying belief in things happening for a reason will comfort you both with this. Tis horrid having a plan blown out of the water. You'd think with the oceans of uncertainty the universe owed us a favour with the small stuff, but it may turn out to be the absolute best thing.

Take good care m'dear, lots of love and luck to his nibs for the procedure and keep us posted.

Sarah

XXX

[Cathy]

Hi Rob

Sorry to hear of yours and Carl's struggles. Glad he seems to feeling a tiny bit better now.

Re food, it's difficult as you want someone to eat healthily but with PC if people want to eat much of anything it is a blessing. A take away every now and again won't hurt, especially if it is something that Carl enjoys.

All the best going forward

Cathy xxx

[PCUK Nurse Jeni]

Very well said Cathy!

Do let Carl have what he wants to eat Rob, as Cathy said, its hard enough to fancy anything especially when on chemo, so a treat when he wants it is good for him.

The "electricity" feeling is probably from the oxalipatin drug - quite a common side effect, Make a not of when it starts and how long it goes on for and let the oncologist know next time around.

Kind regards,

Jeni, Support team.

[RLF]

Ah no believe me when I say I'm not restricting him eating. He's eating really really well, possibly steroids helping or just our love of food still shining through. The takeaways are more as I'm working two jobs to keep the money coming in and an shattered so can't always be bothered to cook, so it more for my benefit than anything. Cheese is his only craving and the box of no moo cheese I ordered came and he loves it thankfully. Made from nut milk but really does taste of cheese, so he's happy again now. I'm not a food nazi! Just trying to make what we eat have more nutrition and less ..well ...crap in it! I told Carl you all are saying he needs to eat what he wants and he said he's going to log in and beg to be sent a cheese parcel! Don't worry he always gets what he wants in the end lol

And Sarah I think the helmet liner might be a good idea for him.

Right off to hospital we go! The district nurses won't flush his line because they say it's coming out. He won't stop lifting things he really shouldn't with his left arm. So we have to just go sit and wait to see if they can fit us in hopefully it'll be under 3 hour wait lol

Edited February 19, 2014 by RLF

[PCUK Nurse Jeni]

Oh goodness! that does not sound good about the line Rob!

Lets hope its not coming out so soon after going in! Sometimes they can slip out a bit - but as long as its not at the tip end! Usually, you can measure if this happens - just measure the length of line outside the arm, and then see if it gets longer. And yes, he should not be lifting heavy things! Food and lifting - what are you like Carl!! (Joke! Carl knows me well enough)

Yes, hope the wait is less then 3 hours for you both - yikes!

Jeni.

[RLF]

Hi Jeni, yes they measure it, last time 5.5cm, but they just all looked at it this time puzzled saying "that looks more than 5.5cm" and didnt actually measure it as far as im aware. He had an xray and it's still ok thankfully, so they flushed it and all's well again. We got seen very quickly this time, Carl's a bit popular in the chemo day unit ward and they fight over who gets him so we got seen right away. It took a while but that's more because he wants to talk to every nurse he sees lol.

We are still battling the insurance company. He has now signed and emailed his permission for AXA to have full access to his medical records which is what they wanted, but they were supposed to phone us back today and they haven't. I have my fingers crossed things will be sorted for next Thursday and it will go ahead as planned, but they really aren't making it easy.

[PCUK Nurse Jeni]

Hi Rob,

That's great about the line! Always good when you can save it, and not have to have it reinserted! And good that you did not have delays! I can imagine that Carl is very popular! Probably makes it a bit easier going for all these appointments.

Sorry to hear about Axa - but I guess they will get a very good picture from Carl's notes now, so hopefully, you won't be coming up against any more brick walls where they are concerned. Hope that next Thursday goes well, and that the trek to London does not cause too much exhaustion.

Give Carl our regards,

Jeni.

[jay]

Hi Rob,

This is the first time Ive posted but have been lurking for the last 5 months after my husband was diagnosed. Ive been following Carls story and hope all goes well next Thursday.

JAY

[RLF]

Hi Jay, well thanks for finding the strength to post and that you chose mine to do it on!

Thursday is looming up fast and I'm nervous and excited and a lot of feelings really. On a negative note, Carl seems to have started with a sore throat and possibly a cold. I'm really hoping this wont stop them from doing what they need to on Thursday, all the build up and then nothing would be a hard hit. So fingers crossed that someone, for once, is looking out for us and things will go ahead without a hitch.

I spoke with Carl a minute a go, after asking him to go to the GP for a couple of reasons. He has been getting tummy pains and some diarrhea the last couple of days and I was concerned he might have a slight infection or something as his immune system always seems to drop so low after chemo. He also needs a course of antibiotics for after the ablation, and Proff Leen said that most insurances won't pay for medication so it's best to get it from your GP, the same being said for pain killers.

So Carl made an appointment and went to see a GP at his practice, not his normal GP sadly who is incredible. The GP sat yawning through the appointment as he explained his problems and told him to wait till he sees his specialist about the pains and diarrhea, can't give him antibiotics as he doesn't know which one he needs (fair point, though any wide range antibiotic would have been great to have and he'd have known that) and he did give him 2 pain killers...2! I really don't get why some G.Ps are so fantastic and some...well maybe it was just a bad day. I don't like to bash them as I know they have a tough job managing so many different problems, but I do feel that was a pretty poor show.

Anyway, hopefully these small annoyances will be overshadowed soon by some good news thursday morning. I think it'll all be done by 8.30am, and as I'll have nothing to do other than sit in the hospital with a very drowsy person I'll try to get an update on. I doubt we'll know much that same day, but hopefully he'll be able to give us a general idea.

Oh and one last thing, after thinking about our situation at the moment, I asked Carl to ring the Macmillan helpline and see if he was eligible for any help at all. They have been AMAZING! Took over everything and spoke to his GP who has also been 100% fantastic and it looks like he'll be getting some money from the government to help him/us as he can't work at the moment and with my reduced hours and his 1/2 wage coming it's been a lot tougher. I felt really guilty about taking any kind of benefit, but I guess it's there for times like now. It's not all gone through yet, they said it'll be 4 weeks, but after speaking to Macmillan again they said they see no reason why it shouldn't. That weight off our shoulders will be a blessing for sure!

Rob

x

[Guest]

Really pleased you are getting good help from the professionals. Hope I will be able to post that soon, as our health team aren't up to scratch.

Pleased Carl is eating well. That in itself must be a huge weight off your mind. I really hope that continues for you both.

Leila x

[Ant11]

Good luck Rob and thanks for keeping us up to date with Carl's story. We all learn so much from all the expertise others are able to help with. Sharing information is so important and really helpful. I know it has been in our situation and without this forum and the nurses we would have gone mad. So many people even in the medical world just don't have a clue with PC. Such a sorry state of affairs. Will be thinking about you both and hope all goes smoothly on Thursday. Take care and look forward to reading your next update. Love to you both Ant x

[PCUK Nurse Jeni]

Rob and Carl,

Do not feel a bit guilty about any benefit you can get, not at all. You are both hard workers, and now is the time for you to get back some of what you have worked hard to maintain. No one likes to obtain benefits when they have a work ethic, but you are exactly the type of folk who need a bit of help in tough times, and also, the type of folk who often do not even know they can get help, as you are used to making your "own way", so to speak. So, the fact that there is some financial help available for you is brilliant, and as you said, will just keep a bit of worry at bay concerning financial things.

A side of cancer many don't take notice of. They forget that a previously fit young man now can't work, and where is the income coming from? It is an added worry for folk with cancer, as if the cancer is not enough to worry about. So, please, just receive what is on offer - you both deserve it.

Kind regards, and best wishes for Thursday,

Jeni.

[RLF]

Thank you everyone for your input, Ant we read through the email and we were doing a few of those things already from all the reading I had done and discussed a couple of the other too especially the vitamin C, we will ask the oncologist if he will give an injection (we'll pay for it even if the NHS won't) if not we will try the supplement that is supposed to mimic it's action the most. Leila I'm keeping an eye on your story (along with everyone elses too) and I'm glad he's making progress in the right direction. Jeni, you're right I know and things seem to be offered to us now that I didn't even consider and we're at the point of just saying "let's do it". In it's own way it is like a little bit of sunshine to us at the moment.

Well I'm here in the London clinic, sat in Carl's room on my own, as I have been for the last 2.5hours pretending to myself that I really am watching the TV, though I have no idea whats been on. Carl was supposed to be back at 9.30 and he's still not back now, and until about 10mins ago I didn't know anything so as the person who is usually calm and collected I was starting to freak out. Texting people saying "he's not back!" and nobody replying. Probably because it's thursday morning and people are working and my mum is well known to be useless at even looking at her phone. Thankfully, Proff Leen has been and just left the room to tell me it went well and he was very happy with it, I think I breathed for the first time today after hearing those words. He's left now and I shed a fear tears of relief that this blip on the road to recovery might be resolved for now. I know the odds are against us for the future, all of us on here know that, but a little bit of hope goes a long way!

Much love to you all

Rob

x

[J_T]

Phew! Glad you got the thumbs up from Prof , what a relief.

Hope the procedure has a positive effect and Carl recovers well.

Best wishes

Julia x

[Ant11]

Hi Rob

Thanks for the update and great news to hear the Professor was happy with how it went. I hope Carl isn't in too much discomfort when he returns to the room. Time for you both to have some relaxation. It certainly is a horrible journey to be on and only those with loved ones suffering from this crappy disease will understand. It's so nice that the forum family all stick together and help one another with tips and great information along with the best support nurses you could ever wish for. Say hi to Carl for me. Will be in touch. Love to you both Ant xx

[Carole McGregor]

Hi Rob

I've been in your shoes and know what it's like waiting for your loved one to come back up from theatre - tough gig ! Just wanted to say don't be too distressed if Carl is in pain and not a happy bunny when you see him. This sometimes happens after Nanoknife. Clive was pretty miserable. Think they knocked him back out in post recovery as he was in so much pain when he first came round. Fingers crossed, Carl won't have same problems but just wanted to forewarn you.

Ps - is pheasant still on the lunch menu ?

Carole

Xxxx

[PCUK Nurse Jeni]

Hi Rob,

Great news that it all went well. Hard for you there on your own waiting, and so touching that you shed a tear when you got the news. I bet it was a relief all right (though not a betting person, lol!) Yes, lets hope Carl is OK when he gets back. Give him all our warmest wishes.

Carole - Carl had Radio-frequncy ablation after all, and not nanoknife. Similar but different!

Kind regards to everyone,

Jeni.

[nikkis]

H Rob,

So glad to hear your waiting is over and all has gone well. Paul has been in the London clinic, I bet as a pair of foodies you are not overly impressed by their offerings, but still beats NHS cook chill!

Nikki

[sandraW]

Hi Rob.

Really glad all went well, love and best wishes to you both

sandrax

[RLF]

Hi Carole, as Jeni said we are in the London clinic because AXA wont pay for nanoknife so we had to have RF ablation. We were told that it would be painful because the tumour was close to the surface of the liver, and the heat it generates would burn the liver capsule which does contain nerves. He complains to me about his pain, then as the nurse or Dr comes in he says he isn't that bad! Typical lol.

We actually think the food is ok Nikki, he had the chicken curry for lunch which was really really good. He's having duck stir fry for dinner too! I've let him off his vegetarian diet while here lol But saying that he's had pretty good food in Leeds too, we've been very lucky.

Thanks Sandra, Proff just came in for his discharge. Told us it went "perfectly", also said he didnt need to come down for a check up, just have a CT scan locally and send it down to be checked. If anyone is reading this and wondering if they should use him then I would recommend him 100%, I would have recommended him even if it didn't work as he seems very concerned about his patient and has no problems with you contacting him about things. If you need him to not mention nanoknife...well just remind him constantly I guess lol.

Carl has a paranoid attack of fear thinking that they must have seen another tumour while doing the procedure...no reason to it other than these kind of things happening all the time to him, so I asked that specifically and he said no he didn't see anything else and in fact the tumour had shrunk a bit from last time, so it seems the chemo is working even though he is finding it so tough. Bit of good news all round and we our counting our blessings at this moment in time.

Rob

x

[Guest]

Just wanted to say that I think it's amazing how positive you are both being. I've been reading your posts, and you never seem let anything get you down.

I really believe that this helps so much, and goes a long way in the fight.

Leila x