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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InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: 4 Folfirinox Down, 2 to Go.

Postby InfoForMum » Thu Nov 07, 2013 11:15 pm

Ladies and gent, thank you for the kind words. My tenacity is something I've been both criticised and praised for in the past (depends if you're the target of it I guess ;-)) Just pleased I'm close and am able to help her, all enabled by a prolonged absence from work so my resources haven't been drained too badly and the inestimable help and support from everyone here and on the support line.

Kate, Julia, Bee - I'm probably just channeling your incredible strength. I've sadly just had to refer a close friend of my sister to the site as her Mum was recently diagnosed. I don't doubt you'll all rally round as you have for me, but I'll give you the heads up if she pops up. Poor love only lost her Dad a year ago, which means she and her Mum are also still working through the grief. In her mum's case it was 6 months of increasingly uncontrollable pain, 1 scan they declared clear 3 months in and point and pick treatment of symptoms until they insisted on another scan which showed up 2 tumours in different parts of the pancreas. So, so shockingly inept I can't gather the words.

As regards Mum's BP, you may well be right David. She's got a portable BP machine from docs to take average readings at home to rule out the white coat effect so will keep you posted.

Also a fun trip to the dentists today as she's got a new plate that's been contributing to her struggle with eating and nausea and her wonderful, wonderful dentist (as an indication of the relationship she has with him she was discussing the complete lack of transformation spinach and other green vegetables go through before reappearing again at the moment - wondered what the guffawing was while I was in the waiting room!) has put it all right for her, so despite worse tingling and cold sensitivity and fatigue, she's very very positive.

The only Issue with the trip was her chemo brain affected directions to get home. A 90 minute journey took 2hrs and I know we don't have much dual carriageway in Norfolk, but we managed the whole journey without finding any and the average distance travelled on roads with grass growing up the middle was disturbingly high. Most directions took the form of "Oh we should probably have turned there" or "I remember that junction, we should have gone right". My favourite one was her telling me the upcoming level crossing was the smoothest one in the country, so I barely slowed and hit it at 50mph. After having my ass leave the seat and my teeth nearly shaken from my head she started peeing herself laughing and said "or maybe it's not". Best I could summon as a response was "YOU THINK?!"

Mum under the influence of recent chemo is now rechristened "Sat Mad" and Tom Tom is deffo coming the next time she wants me to drive!

Love to all

Sarah
XXX

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Feeling Depressed, Anxious, Guilty or Isolated

Postby InfoForMum » Fri Nov 08, 2013 11:08 am

I've started a new thread collecting some of the great posts and links relating to the darker feelings patients, carers and those dealing with the loss of loved ones can suffer.

As carer for my mum, someone who's Dad had bouts of depression and someone who has had her own tangles with this I feel very strongly about it. No-one should be feeling helpless and alone and I hope the new thread helps.

http://forum.pancreaticcancer.org.uk/vi ... =25&t=1227

Sarah
XXX

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Thrush, Tummy Probs & Contingency Plans

Postby InfoForMum » Mon Nov 11, 2013 11:31 am

Mum's certainly noticed the increase in dose again. The fumbling things due to peripheral neuropathy has been noticable, 2 spilled drinks and a burned finger in last two days. She's also got oral thrush again and has started with morning diorrhea earlier this cycle (now day 6).

Knocked her a bit, but not too badly and I've been back on the case with research into treatment in case the scan doesn't bring the hoped for news. I sent a letter to a nanoknife specialist and after getting a standard reply from his secretary saying he doesn't usually respond until CTs are sent on disk, he surprised me by calling me on my mobile today. I gave chapter and verse in my email and based on that, he's said he's confident my mother is a good candidate for the treatment. We have private insurance and the procedure is covered on a case by case basis, but we have a good team of trusted Docs who will fight our corner if that looks to be the best next step. Only fly in the ointment is that he, personally might not be registered with our insurers. Could be a bureaucratic FUBAR, if not could get very expensive.

That's great news. I know there's likely to be a point when we leave the consulting room with "nothing more can be done" ringing in our ears and crushing us to emotional pulp, but I'm going to fight tooth and nail to give Mum choices for as long as that's possible.

I'm very concious of how lucky she is to have her insurance (a legacy of my Dad's career she carried on paying for, but nearly cancelled 6 months prior to diagnosis). If anyone here can tell me who to pressure to make this available on the NHS I'll happily lend my very loud voice to that fight!

Sarah
XXX

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

Re: 4 Folfirinox Down, 2 to Go.

Postby J_T » Mon Nov 11, 2013 11:37 am

Sarah, as ever, in full battle gear! lol.

All power to you. What a fantastic job you are doing for your mum and I know how good it feels to be DOING SOMETHING!

It would be great to know you have the option of nanoknife in your armoury. Good luck with it, hope it all pans out as you want.

Julia x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: 4 Folfirinox Down, 2 to Go.

Postby InfoForMum » Mon Nov 11, 2013 12:45 pm

Thank you m'dear. As suggested by the lovely Jeni, I had my foot off the gas for a bit and it was good to just be with Mum instead of fighting, but letting stuff lie isn't a forte. You guys have given me and Mum the facts and oomph to keep pushing.

Love ya.

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: 4 Folfirinox Down, 2 to Go.

Postby davidandsam » Mon Nov 11, 2013 12:48 pm

Hi Sarah

You may have seen my last post, I am in for nano knife surgery this week on Wednesday in London. I am assuming you have spoken to professor [Name removed - moderator] ? If so I would advise a face to face consultation with him, armed with your mums CT scan and your loud voice I am sure she will be a suitable candidate.

He has an amazing bedside manner which fills you with confidence about this relatively new procedure. I have also found him so proactive, calling me with an update in his strategy as well as conferring constantly with my equally amazing oncologist.

On the cost side I have convinced my insurer to cover some but not all of the costs, as it is a reiterative procedure it is certainly worth understanding the full picture before committing.

I will give you an update later this week but in the meantime good luck in your quest

David.

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

Re: 4 Folfirinox Down, 2 to Go.

Postby Cathy » Mon Nov 11, 2013 2:11 pm

Hi Sarah,

The worsening neuropathy and oral thrush were something we had to contend with in this house too. Oral thrush especially can be unpleasant (diflam is good).

Great and hopeful news regarding nanoknife! I'm assuming that Dr [name removed - moderator] is going to be given a copy of your Mum's next scan. Have you a date for that yet?

Cathy xxx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: 4 Folfirinox Down, 2 to Go.

Postby InfoForMum » Mon Nov 11, 2013 5:19 pm

Hi David, somehow I had missed that you're going to see the good doctor. Tells you how single minded I'm being and that's shocking of me, sorry. [PS - of course I knew - I replied didn't I - my own brain mush!] Yes it's him, he called me this morning to say that barring big surprises from the scan she's a suitable candidate and I'm armed with the fOI form to fire in the day of the scan to get the disks. Already got the MRI done 6 weeks ago for comparison.

Wishing you all the best for your treatment and will be really interested in speaking to you when you get back.

Thanks for the support Cathy. Perversely it helps enormously to know we're not the only ones suffering, without wishing this on anyone else. She has Nystatin for her mouth which seems to do to do the trick.

Hope all's well with you.

Sarah
XXX

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Good NHS Service

Postby InfoForMum » Wed Nov 13, 2013 11:57 pm

On the eve of the scan results (if the radiologist is not still off sick), I wanted to balance the accounts here a bit by reporting some excellent NHS service.

As mentionned above I wanted to get scan results asap so I could share with the nanoknife specialist. It was very important to me to have an option lined up in case news is bad tomorrow. Having a direction other than down to point will be welcome. My guts say it's positive news, but you get where I'm coming from.

Soooo....braced myself to send the FOI form off into the ether and chase, wheedle, shout until someone dealt with it. Not at all! Took it with me on the day of the scan. Radiology pointed me at Patient Services to pay and get a receipt, then a wonderful, wonderful lady from Patient Services walked us down to the team who copy the disks. On the way she gently asked if we needed any advice about patient transport or benefits having noticed mum's diagnosis on the FOI form.

When we got there I was floored. Having only had the scan done 30 mins before, he pulled it up on the PC and said "Go get yourselves a coffee and come back in 20 mins, I should have it done by then". True to his words it's done and her onc has promised to have a copy of her imaging report ready to take away.

I commented at the time that for every negative, obstructive or unprofessional person, we have met 2 at the other end of the spectrum. Jumping through hoops to support me to help Mum and to help Mum to fight. Waiting for their managers email addresses so I can repay some of that kindness.

Also, I met with my new boss today and for the first time I feel energised and positive about going back to work next week. Nervous, but positive as they are really working hard to make sure I can be there for Mum and get the job done too.

If my vaguely Taoist beliefs are born out this feels like a cycle of good stuff that's come around to balance some of the bad. Let's hope i'm right. Thank you all for the good wishes so far and I'll heep you posted.

Love to all

Sarah
XXX

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

Re: 4 Folfirinox Down, 2 to Go.

Postby Cathy » Thu Nov 14, 2013 1:34 pm

Hi Sarah

I guess it is the same wherever. I work in the public sector myself and know that there are some fabulous members of staff and some, well, not quite so fabulous. I think tho when it is provision of healthcare, a failure or poor service is felt so much more acutely and causes so much more stress and anguish.

Co-incidentally I have been waiting for scan results and report for Jonathan since late Sept to find that the person dealig with it has only just returned to work and cannot be contacted (by me) to chase - I've now talked to PALs. SOOOOO frustrating!!

Jonathan isn't doing too badly. He's seen the oncologist a couple of times now and has had x-ray and ultrasound scans (all clear) and blood test (the same) - another CT scan today and back for results on Tues. Was going to update my thread then when we might know a bit more. In himself though, other than the stomach problems, he is great. Very bubbly and feeling far better than he was last week.

Cathy xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Good Scan Result - Mid Cycle CT

Postby InfoForMum » Thu Nov 14, 2013 4:22 pm

Hi All,

We have had some great news today. The wee bastard hasn't grown an hasn't spread, so onwards and upwards!!!!! Mum said the feeling wasn't quite elated it was more like a sitting a really hard exam and getting the mark aimed for. The smiles have been stuck on our faces. I was so itching to share the news I nearly blurted it out at the checkout at Sainsbury's today!

Thank you all for your best wishes for this and I will be catching up with all of your posts when I get a sec tonight.

Love to all

Sarah
XXX
Last edited by InfoForMum on Tue Dec 10, 2013 4:41 pm, edited 1 time in total.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Good Mid-FOLFIRINOX CT Result

Postby InfoForMum » Thu Nov 14, 2013 4:28 pm

Cathy, I didn't read your post properly cos I was so intent on posting our news. Both Mum and I are appalled on your and Jonathan's behalf. We knew our Oncologist and radiologist were pulling out all the stops for us as all the bumf says "a few weeks wait", but didn't dream that was the reality.

How bloody frustrating, I'm so sorry. Fingers crossed PALS help you kick all the right behinds, cos that is dreadful. Good news about the even keel bloods-wise and all except stomach symptoms-wise though! Wishing you good results vibes when they both come through.

Hugs to you both.

Sarah
XXX

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Good Mid-FOLFIRINOX CT Result

Postby nikkis » Thu Nov 14, 2013 4:44 pm

Great stuff Sarah, when you have had such bad luck getting the blessed thing I found it hard to imagine that we would ever get any good news! Really great to hear your Mum has joined the good news club, lets hope many more join us too!

We second what you said to Cathy, that is absolutely shocking. Make a big fuss Cathy, to whoever will listen, its just not good enough. Glad to hear Johnathan is better this week though.

Nikki

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

Re: Good Mid-FOLFIRINOX CT Result

Postby Cathy » Thu Nov 14, 2013 6:25 pm

Thanks both and great news Sarah!!

Fear not for "Fuss" is my middle name..

It's not actually but you know what I mean... :)

I will get onto them again tomorrow morning.

Onwards and upwards ladies!!

Cathy xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Good Mid-FOLFIRINOX CT Result

Postby InfoForMum » Thu Nov 14, 2013 6:35 pm

YEY Cathy - If we bottled the energy we put into this global warming would be history! Go girl!

S