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InfoForMum

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Thanks guys again. I'm feeling pretty low tonight. Some nasty bug and no capecitabine prescription and no contact from the oncologist or his secretary. Posted on Mark's last thread it was great to feel like I could take the foot off the gas, but apparently not. Not now sure of the implications of this for efficacy of treatment or need to delay it and frankly I've had enough. Feel like curling in a ball tonight and hiding under duvet. Would do if I didn't need to keep Mum calm. Small, small, small hiccups compared to most of what folk are dealing with, but feel stupid having let guard down and too full of cold to make folks lives as hard as I'd like to. Sorry for the rant. As I said, not very considerate given we've got what we want on the horizon now and she's still so well. Prob shouldn't have posted. S

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You rant away Sarah, hope it has helped. You enjoyed your foot of the gas moment, so take care of yourself for the rest of the weekend and put it down to the floor on Monday,


Love,

Nikki

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of course you should Sarah. I better you're proper p'eed off! Just reading about all you've done tires me out. It shouldn't have to be like that. Like treading through treacle sometimes and you wonder if anyone is actually on your side and striving for a patient's survival.


My eyes have been opened to some sorry attitudes to this disease. It seems that when all hope has gone, they can't do enough for you. If only the same attitude applied to prevention and cure by EVERYONE not just a few. That's what it feels like anyway.


KBO Sarah xxx

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Bless you Sarah, that's what your forum family is here for!! Rant away as it just makes things that little bit easier when you feel you've got someone who cares that you can share your troubles with. Virtual hugs and keep on top of your cold - just what you needed I'm sure!!


Love and Peace


Mike xx

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As I understand it, and this is somewhat hazy, IRE or irreversible electroporation destroys the tissue between the probes. There is at the margin an area of reversible electroporation which is particularly susceptible to chemotherapy, hence the capecitabine. I suspect that this is more theoretical and starting five days before the procedure is pretty arbitrary, as long as tissue levels are reasonable on the day it should be effective.


[Line removed by Moderator. This post has been edited by the moderators as some of the content was not in line with the forum guidelines. The post author will be contacted with an explanation]


Mark

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All you're so kind. Especially you Mark with such a practical suggestion. We're in East Anglia so that won't fly, but now you've reminded me of the research I'm still hopefull we'll have some on board before the op. As you said the peripheral, reversable cell damage to an area about 2cm diameter around the irreversably damaged area theoretically makes that area more susceptible to chemo and prof estimates that cell damage takes about 10hrs to heal. Amazing what I have stuffed in my head!


Will, as Nikki suggests, get over this bug (feeling a tad better today) then pick it up tomorrow. Strongly worded mails waiting for all concerned to see on Monday to be followed up by my calls.


In fact, I've got my own scan on Monday. Signed up for one of those Lifescan jobs from Bupa. Self funding, so there goes spending money for a few months, but helps peace of mind on off chance there's anything hereditary going on.


Thanks again for the leg up guys.


Sarah

XXX

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2 kids fully clothed off to 1st day back at school (minus one rucksack and 1 pair school shoes!), 1 insurance company with rocket sent up it, 1 procedure and overnight stay approved by insurers, 1 mother pleased by that, but still stressed about missing chemo, 1 NHS secretary cried/shouted at 1 private secretary finally picked up the phone and defused the me-bomb by promising results, 1 lost blackberry reported, 1 new blackberry being delivered tomorrow, 1 lifescan + bloods done, 1 tea made with cake and almost with a slug of whisky on the side. Fingers crossed some chemo appears soon!


S

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lol, kinda - slept all afternoon with a tissue under my nose, but all on for tomorrow. Still no sign of chemo, but as per Mark's very balanced view, there's no hard and fast rules about length of chemo in advance. Not happy but pragmatic.


I know you've had your own fight and was so pleased your oncologist admitted he was falible and is on board with the abraxane plan. Let me know how you're both going with that!


Sarah


XX

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So, installed in hotel, Capecitabine and anti-emetic taken after a rather nice Italian meal, B&B is pretty good at £80 per room in W2 and surprisingly chilled mum. Unlike me this morning chasing everyone around until prescription written and delivered to the hospital as no-one could get hold of the home healthcare company supposed to deliver chemo.


All's well that ends well for the run up to this (even in room 202 and 2 is my lucky number - how's that for a hard nosed logic fiend :-). Will keep you posted. First job tomorrow is to distract Mum from the fact she's terrified of having her first GA. Far more worried about that than anything else at the mo!


Take care all,


Sarah

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Best wishes and good luck to you and your Mother Sarah.......bring on the pre-med! (Same sentiments to Mark of course).


Steve

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So it's done. She's recovering slowly from the GA. Area with arterial involvement attacked, but since last ct either a benign or more worrying cystic mass had developed just in front of main tumour (can't help wishing we'd made pre-xmas slot work) so in his words he couldn't be as aggressive as he would have liked. What will that mean for next steps? Who knows, but side encroaching on SMA had good blasting. She's pretty sore as it looks like she had pancreatitis to some extent pre-op and cyst meant he went in via pancreas rather than liver. They are looking after her really well though


6-8 weeks until scan to work out effect, but most importantly we'll be spoiling her to get her well


Prob riddled with typos as on smartphone, so nuff for now.


Sarah

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Hi Sarah, been waiting for a post from you with baited breath!


Glad to hear its been done and your mum is recovering. Bit of a bugger about the new discoveries but you are doing everything you can to attack the ba$tard so try not to worry.


It will probably be a stressful few weeks but have everything crossed for you. Does she just take the capcetabine in the interim?


Much love

Julia x

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Hi Sarah,

Glad to hear your Mum is recovering ok and being well looked after, HCA really do seem to know how to pick their staff. This disease has ways of throwing things at us all the time that we have not been able to plan for, so try not to beat yourself up about any delays. You all had a lovely Christmas and that was very important.

Lots of love to you and your Mum,

Nikki

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Glad all went ok, here's to a speedy recovery and nice times in the weeks to come. As Nikki said this disease is sneaky so no beating yourself up allowed !


Bee x

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Hi Sarah, great to hear it is all over and your Mum is being well looked after. We will continue to watch this space, say hi to your mum for me and we wish you both well.


Steve

X

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Hi Sarah,

I have been reading all your posts with awe,you are amazing, wishing your Mum a speedy

recovery too, and well done you !!


Sandra x

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Hi Sarah


Sorry to hear of the additional complications rearing their ugly head when distinctly not needed. Nevertheless it seems your Mum has weathered the procedure well and overcome her fear of the GA.


Great to hear she is receiving top notch after care which will be a big relief to you as it's so much less stressful when you know your loved one is in good hands rather than having to keep kicking ass to get the smallest thing done for them.


Best wishes to you and your MUm for her recovery.


Love and Peace


Mike x

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As I write we're still in for a 2nd unexpected night. Nothing deadly serious in the opinion of all medical staff, just more pain and general weakness and less appetite than expected at this stage. Thank you all so much for your lovely comments. Have just passed them on to Mum who's reaching her tolerance level for daytime TV (with the exception of Pointless that she really quite likes).


Her pain is lower left abdomen and is apparently aggravated by eating. Kind of seems to back up the finding of pre-existing inflamation and the cyst during surgery. CT morning of the 9th and bloods don't indicate full blown pancreatitis (Amylase not decisively high), but sommat is going on. BP has also remained high throughout. Although average over a few days wasn't high enough to warrent hypertension medication from her GP it did keep her in recovery for 2 hours while they tried to bring it down. Kind of a vicious cycle given she was desperate for a wee, wasn't allowed off the bed and can't use a bed pan (not ideal to promote relaxation!)


In any case she's not up to travel right now. Can manage a mooch down the ward very slowly but standing aggravates discomfort. Psychologically being laid this low is getting to her. She hates feeling idle and useless and not eating worries her - that's my part to play - distracting her which I'm doing my best at.


Next steps still not entirely clear. Healthcare at Home are coming to her place to do bloods in advance of restarting Capecitabine on Monday. However, she also has a pre CRT appointment with her local fella next week and a full Cap course would overlap with CRT - what to do for the best given she's iffy about (and jury is out about efficacy vs morbitidy for) the radiation option. More for us to get heads round, but more than anything hoping this blasts arterial involvement out of the water to point at surgery somewhere down the line.


We've decided that Liverpool Street Station isn't the ideal way to get her home so I'm hiring a car when the time comes to leave. She's worried we won't have a Sat Nav, but I'm a pretty chilled driver and by my reckoning as long as we leave in the afternoon and I keep the sun on my left we'll get out of London going in the right direction eventually.


In the mean time the good professor and nursing staff are doing well taking care of her and I've been taking advantage of the rather wonderful shops with Jan sales on on Marylebone High St.


By comparison to Mum's ups and downs Mark (MSH) has thankfully had the kind of recovery the Prof expects most to have. That's great news and we're wishing him well.


Love to all.


Sarah

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