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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Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Carls story

Postby Cathy » Tue Feb 18, 2014 12:19 pm

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
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Carls story

Postby PCUK Nurse Jeni » Wed Feb 19, 2014 11:31 am

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

Re: Carls story

Postby RLF » Wed Feb 19, 2014 1:55 pm

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
Last edited by RLF on Wed Feb 19, 2014 8:09 pm, edited 1 time in total.

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Carls story

Postby PCUK Nurse Jeni » Wed Feb 19, 2014 4:41 pm

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

Re: Carls story

Postby RLF » Wed Feb 19, 2014 8:17 pm

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
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Carls story

Postby PCUK Nurse Jeni » Thu Feb 20, 2014 10:47 am

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
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Carls story

Postby jay » Thu Feb 20, 2014 5:04 pm

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

Re: Carls story

Postby RLF » Tue Feb 25, 2014 11:42 am

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

Fifi

Re: Carls story

Postby Fifi » Tue Feb 25, 2014 12:45 pm

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

Re: Carls story

Postby Ant11 » Tue Feb 25, 2014 12:48 pm

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
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Carls story

Postby PCUK Nurse Jeni » Wed Feb 26, 2014 11:20 am

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

Re: Carls story

Postby RLF » Thu Feb 27, 2014 11:12 am

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Carls story

Postby J_T » Thu Feb 27, 2014 11:44 am

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

Re: Carls story

Postby Ant11 » Thu Feb 27, 2014 11:47 am

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
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Carls story

Postby Carole McGregor » Thu Feb 27, 2014 12:41 pm

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