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Well done Sarah - these bloody Post Code lotteries that dictate what is available will be the death of me if the PC doesn't get me first. It seems to affect every phase of the treatment that patients receive from diagnosis to final palliative care and in a National Health system this is just not right but sadly no one in power seems to care. None of this relates to my own experience as I have received top class care throughout - my whole point is why this is not universal throughout the country!


Where would some on here be without the support of this group and the persistence of those like you who are prepared to stand up for your Mum's best interests? Well done my lovely and top marks.


Love and Peace


Mike

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Sarah


Great job for the dosconnection and flushing procedure! As a patient I know how sensitive the central line area is ! My other half Sam loves to play nurse (actually vet, she is constantly administerng vacinations to our 3 horses and loves playing with vet wrap and iodine !)


I know how bervous I was as I watched her scrub up and arrange her operating table in front of our 4 year old who thought the whole process was amazing !


She has repeated this process several times and is now a dab hand at it ! it makes such a difference being able to manage the basic things at home and I am sure your Mum will give you ten our of ten next time!


Goodluck for your mid term scan


David

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Hi Sarah


Well done on learning that. As you probalby remember, we were lucky enough to be offered this service via our District nurses but they were equally happy to teach me (in fact, positively enthusiastic).


We took many a trip (including to Greece earlier this year) armed with saline, syringes and a syringe bin. What option is there otherwsie? I wasn't going to take a nurse with us?


I don't think I was ever a 10 though. The tagaderms stuck to everything. :)


Best of luck with the scan Sarah!


Cathy xx

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Mike, David, Cathy,


Thanks for the lovely replies :-). Have to admit Mike, yours did make me slightly tearful, in a good way. When you said 'well done my lovely' it brought memories of my Dad flooding back as it's something he would call me. I'm as sure as I can be that he would be proud of both Mum and I, but it doesn't stop me missing my Dad hugs and the benefit of our after dinner chats where he passed on his hard won experience. It was nice to feel cared for that way.


As for the postcode lottery, I have been barraging our MPs with messages trying to provoke interest in the all party working group and specifically highlighting the challenges of having specialist centres in largely rural regions. Not hard to gather the necessary patient numbers to qualify for having 1 or more specialist centres in large cities (government dictates at least 2 million patients have to be served by a hospital applying for that status), but for us in East Anglia and in many other regions the catchment area to get that patient count is huge. Many, many patients are travelling hours for that specialist care, when expertise in chemo, line care and other repetitive treatment should be made available in all larger local hospitals and consistently from district nurses and GPs driven by and supported by specialist centres. Not only that, patients in urban areas often have a short trip, with good transport links, to another specialist centre for a second opinion/alternative treatment. Not so here. Travel actually becomes a quality of life factor in decisions about treatment, impacting prognosis more or less depending on how well/well funded/well informed/motivated a patient is. And I'll now delicately descend from my well used soap box!


David - glad to hear I don't have the only 4 year old fascinated by body parts and gore. Caught her watching "The real A&E" having left her with cbeebies while I washed up. A) didn't know she could manage the sky remote that well and B) after careful enquiries as to whether she was scared/confused by what she was watching she floored me by explaining the biker had a fractured femur and that was dangerous as he could lose a lot of blood. We watched together before going back to Ben and Holly's. A future surgeon or trauma specialist perhaps?!


In terms of your Mrs playing vet I'm just hoping she doesn't go for a one size fits all aproach to taking temperatures!


Cathy - hoping against hope to get mum away for a week between chemo and radiotherapy, but complicated slightly by time of year, potential weather issues and having the whole clan down for chrimbo. Watch this space. Wonder if they would count my big yellow bucket in the carry on baggage allowance?


Mum's had a good day today despite tiredness, a bit of a sore throat and better, but still iffyish appetite. On the whole good and building back up to the 4th chance to grab our personal monster by his short and curlies to bring him to his knees :-)


Sarah

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Hi all,


Thought you would like to know that I've had a response from my Mum's MP. He's been in contact with the local district nursing commissioners and has confirmed that a trial will start soon to have specially trained nurses provide IV line insertion and IV line care at home in areas where that's not currently done.


It may not be soon enough to help my mum, but will help other local PC sufferers and any other patients with a central or other IV line. The upshot should be shortenend hospital stays, less travel, lower infection risk and overall better quality care.


PLEASE PLEASE ADD YOUR VOICE TO THIS IF YOU LIVE NEARBY AND WANT TO MAKE SURE THIS BECOMES STANDARD COMMUNITY NURSING CARE RATHER THAN A TRIAL THAT GOES NOWHERE.


I've put together more details (including where you can find MP contact details and a copy of the letter I first sent to ours) on the below new thread. I'm also going to scan and forward copies of letters received from our MP and the local PCT commissioner to the support line that you can ask to see.


It shows we can make a difference. I was doubtful and cynical, but have been proved wrong.


Not all of us have the time, energy or motivation to fight these things when we're already fighting this demon disease or supporting others to fight and I fully understand that, but if you do want to share your views and potentially make a difference GO FOR IT!


http://forum.pancreaticcancer.org.uk/viewtopic.php?f=23&t=1212


Sarah

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So, back from hospital after cycle 4 (well apart from next 40 odd hours on the 5fu pump). I helped Mum pass the time by sharing my Dexter box set. Wasn't sure a series about a serial killer was quite the right vibe, but she thoroughly enjoyed and passed a decent chunk of the time.


I'm now a line flushing demon. The kids gathered to watch again but wimped out when I drew the blood, even though they'd kept asking "where's the blood".


Very few cycle 3 symptoms, probably due to the reduced dose, but as requested her dose has gone back up to the original modified dose for this one and her onc is considering going up to a standard starting dose + bolus for the last 2.


Sensitivity to cold has been cumulative - started almost immediately post treatment this time. Fatigue is expected to be worse and she's bracing for diarrhoea days 7/8/9, but all told still trucking on. She cooked us all a roast on Sunday then on Tuesday she hosted a fireworks party for the kids and I (I bought £120 worth of discounted fireworks and they just about blew the windows out, but were fantastic). Kids bestowed the ultimate accolade after hot dogs, hamburgers, tatties and choc brownies were served up...."Grandma, it's better than MacDonalds". Praise indeed!


The only cloud on the horizon is her BP, which, with no history of hypertension, remains consistently high. I've encouraged her to take it up again with her GP as the chemo ward keep writing it off to worry about chemo, even though I can hand on heart say she was really calm. 179 over 97 today. Not going to have her keel over with a stroke or heart attack - that would be too damn ironic (her words).


All things considered small prices to pay.


6 days until the scan. 8 days until results are in.


Love to all


Sarah

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Hi Sarah


Great news that your Mum is progressing through cycle four and so far with flying colours, tell her not to fret about days 7/8/9 speaking from experience "it might not happen this time" and if it does it maybe a lot easier to manage than cycle three. I can not pigeon hole the side effects, for me sometimes I have tingly digits and feel tired and sometimes I could stick my head in a freezer and run about like an "eejit" I am experiencing no set pattern which if I remember happened from about cycle 3/4.

So with a bit of luck your Mum might get the same random selection of minimal side effects, I truly hope so.


I can imagine your thoughts and anxieties surrounding the CT scan, I had my "mid term" CT about three weeks ago with reasonable results (stable Primary tunour with some scar tissue perhaps, and liver mets reduced on average by 10~15%)but the anxiety between scan and discussion was a tough one. I am never negative especially when fighting my demon but it really tested my grit and positivity, get ready for the super support role and stay positive ! My support network went into overdrive with distraction tactics and positivity and it helped massively! To the point that I promised myself a glass of bubbly if the results showed we were moving forward, again Sarah that helped a lot ! (especially after the bottle was consumed !!)


The BP maybe the white coat syndrome, I have an issue where my resting heart beat at home is ridiculously low at about 45~50 BPM (triathlon training Pre-PC) and as soon as I see a white or blue coat "wallop 75 plus" could be the same for your Mum


So with 8 days to go to the results I wish you and your Mum all the best and hope some of my positive vibes rub off on her !


Fingers crossed you might even get more roast dinners !


All the best to you all


David

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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

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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/viewtopic.php?f=25&t=1227


Sarah

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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

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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

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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.

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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.

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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

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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

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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

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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

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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

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Edited by InfoForMum
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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

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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

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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

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