She's gone

[Bee]

Hi Sarah,

Just wanted to echo what the others have said, you are doing a fab job, I know it is so frustrating and you feel so helpless. But you are doing everything you can and sometimes just being there is enough. Fingers crossed you get Macmillan support, or support for your local hospice, who are a fab resource.

Remember one day at a time !!

Bee xx

[InfoForMum]

Thanks Bee, I will remember! Can't say how much the support helps. You've all got so much on your own plates at the moment it's amazing that you're taking the time out to look out for me. I hope you're getting looked after too.

I've put that title for the post as I had a dose of literary diarrhoea on Rob's thread. I spewed out a lot of the collected info I had about Nanoknife vs alternatives as he'd asked for opinions. Not sure whether he'd bargainned on my war and peace offering!

@ Mr Lewis - reckon you'd count this as volume 2 of my "adventures in treatment research" series of books and this one is even longer!

Just in case it helps anyone else looking for similar info here's a link to it:

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1303&p=12154#p12154

As usual, my head is far to full to let me sleep, but I'm sure there's something on Sky Plus I can nod off to if I try.

Love to all

Sarah

XXX

[Slewis7313]

Hi Sarah, I have just read your update on 'Carl's Story'. I am in a very lucky position at the moment as my little devil appears to be sleeping at the moment and my last tests confirm still no spread. I have therefore not been pushing the Nanoknife and Cyberknife options, but will probably need to at some point in the not too distant future. Your consolidated summary of both procedures is really useful and though not short, is concise. It again shows that we are right to get excited about Nanoknife and begs the question why are the Medical Professionals not equally excited?! Thanks for documenting the extensive research which will no doubt be of real use to many of us who may take this route.

Steve

X

[InfoForMum]

Hi all,

I've been unusually quiet of late as so much has been going on. Mum is up and down. Still having days feeling too nauseus or appetite-less to eat much. Gnawing pain in lower abdomen is still fairly constant with some good patches for no apparent reason or because she gets her Paracetamol, Dihydocodeine and oramorph cycle just right. Mid-left abdo pain is still reserved for after food and she's beginning to accept neither are probably still direct after effects of the Nanoknife.

We did have Macmillan get in touch and the nurse is nice (not twee by the sounds of it, sure mum would have said as she has a very sensitive twee-ness detector). Also, through the specialist oncology nurses Mum got a referral for a review on their Acute Oncology Unit. Lovely doctor, very thorough, didn't go through all the bleeding obvious things like eat small amounts etc etc. She listend really carefully to what Mum was saying about the quality, frequency, pattern and severity of her pain and she and I both think the lower ab pain sounds a bit neural. Especially as it's periodically radiating round her back.

She's now got a week long course of steroids on a high then decreasing dose to try and kick start her appetite and put some of the lost 4.5kg back on. May also put her head back in a better place, but still working on her to go for some counselling (she's not resistant per se, she just finds it hard to motivate herself to get out of the house in case the pain breaks thru).

CRT planning scan also done. She is truly dreading that, especially as she's likely to become nauseous and very tired towards the end. I know that's not a foregone conclusion tho - Steve the trouper sailed thru and have everything crossed Mum will too.

Still struggling to shake the feeling we've been cornered into this tho. No CRT = no surgery despite risk of spread during treatment and all the side effects for not even 50% chance of response. Doom, gloom, grump, moan....sorry guys. Doing what i'm told and even more loved ones being pressured into anything triggers nasty fighty instincts i'm working to tamp down.

In other news I have a post about mum's situation in the run up to Nanoknife being published on the Saatchi Bill blog next week. Included a shout out for Maggie Watt's epetition with it.

My other thread with more on the bill is here http://forum.pancreaticcancer.org.uk/viewtopic.php?f=21&t=1276&p=12280#p12280

Mum and I have also been invited to the launch of the public consultation at the House of Lords on the 24th. Mum, very sadly, can't come as she has a treatment check scheduled same day. In some ways that's a blessing for her because I think she was really struggling with the idea of a London trip, but wouldn't have wanted to let me down. It's going to be the first such thing broadcast live via Google Hangouts (don't ask me I've never used it, but will find out details), so lets hope I have a good hair day.

If there are any of the PCUK team going, or if they have points they want me to raise with any MPs I corner please let me know (I know how to behave appropriately in polite company I promise). The same goes for the PCUK forum family.

If the bill doesn't get sufficient support during March and early April, the Commons will block it, so do go to the Saatchi Bill site and register your support if you want to. http://saatchibill.tumblr.com/ - If you scroll down that page a bit the web form is on the right. It's a simple yes/no, but you can add up to 2,000 words if you want to.

Love to all

Sarah

XXX

Edited February 15, 2014 by InfoForMum

[Dollysdaughter]

Hi Sarah, it's fantastic that you are doing this! I live near London so if you want somebody to go with for moral support or just to meet for a coffee before/after it would be lovely to meet you,

Sara x

[InfoForMum]

Thank you Sara. It's not amazing so much as fallout from my tendency to fire off a tweet/FB post/Email whenever I see something that gets my goat. They picked up on it and asked if I'd write somthing. Didn't expect anything like the invite though!

I saw your thread and suggestion of trying to get folk together. That a nice suggestion and I know the PCUK ladies will help you work that out. In terms of the offer to come with, that's so nice of you. I think the guest lists are fairly rigid, but maybe we could grab a coffee on the Sunday before if I can bail on my man and the kids early enough to make that doable. I'm happy to discuss any of my and Mum's experience, with my usual caveat about it only being my opinion on medical bits, not backed up by any training.

Ask the nurses to fire your email through to me offline if you want to try do that.

Sarah

[Dollysdaughter]

Thanks Sarah, would be lovely to meet up on the Sunday but see how your trip works out. You probably have a lot to fit in a short time!

My mum is about to start chemo for the first time on Tuesday so still quite "early" days for us but certainly looking into nanoknife etc so will look through your threads about that.

Take care and keep in touch,

Sara x

[Cathy]

Well done Sarah.

What a trooper! Amazing you have the energy for this when also caring for someone (let alone having a family too). Have signed to support the bill.

Cathy xx

[InfoForMum]

Brill, thanks Cathy and will keep you posted if I get your details Sara.

Sarah

[Dollysdaughter]

I will try to pass email onto you Sarah. In the meantime, could you let me know where you posted about your mums nanoknife experience (or send a link) I would be really interested in reading this and just so you don't have to go through it again!

Thanks , Sara x

[InfoForMum]

There's a "Search this Topic" field you can use if you're on a thread (top left of 1st post on the page). Stick "nanoknife" in there and it will bring all mentions of it up with most recent first. If you want to see Mum's story in order go to the last post and work forwards.

In there you'll find a link or few to other posts here and to Cancer Compass the US forum where a very active Nanoknife (IRE) thread has been going on a long while. In the US do read carefully. Lots of procedures have been done as part of open surgeries (whipple attempts or gastric/billiary bypass surgeries) which comes with it's own complications.

Hope that helps!

Sarah

[Dollysdaughter]

Great, thanks Sarah

[InfoForMum]

Hi all, apart from the Saatchi Bill posts I know I've been a bit elusive. Sorry to anyone I should have been in touch with and haven't (Sara, especially you after your kind offer).

This might come as a surprise, but I've seen little of Mum in the last 3 weeks. I've found it exceptionally hard to be with her as she continues to fret about the root cause of pain, but also she had come to rely on me for just about everything and I thought others had stayed away because I was such a constant and protective presence.

It seems I was right. Overall her appetite, pain levels and state of mind have slowly (painfully slowly) improved. Bit of a bell curve as the fear of impending CRT and the prospect of losing ground gained appetite and digestive system-wise is looming large. She's also been taking on lots more of her own calls to organise things and has been inviting people over to see her. My aunt and uncle love a good drama and had scared a few people with tales of how dire her situation is. The men in particular have been scared of coming round for fear of what they'd find (is this a true stereotype, or just the over 60's in my life?!).

In her true trooper style she's put them right and hosted a couple of meals with friends and is dealing with the changeovers for her holiday cottages and walking her big beast of a German Shepherd (spelling?).

I feel horridly guilty as I think the evenings and quiet days have been horridly rough on her, but she does phone when I can help and like a role reversal of our relationship, she admits she tends to dish out the very worst of it to me. Remember doing that to her. Reverting to a petulant 15 year old after coming back from Uni age 23 and when coming home for the last couple of months of my pregnancy in 2006.

Hoping so, so, so hard the CRT doesn't floor her, the thing hasn't grown or spread and if it hasn't, it continues to behave during treatment. So many damn unknowables!

In this window I've found time I didn't believe I had when it was just full-time work and kids. I've filled that space with a punt at a change of career. I'm writing pieces for something called The Analogies Project (http://www.theanalogiesproject.org/lost-phones is the last one). It's a fantastic initiative to use storytelling to demystify information security for those not in the trade. I've also just had a piece published on a trade site (http://www.informationsecuritybuzz.com/dont-know-dont-know), with another soon to come. The hope against hope is I can build from these donated articles and earn some money. Perhaps enough to take a leave of absence from work when Mum really needs it (either after surgery, or, god forbid, if things take a turn for the worst). It's somehting I can mainly do from anywhere with internet as long as it brings in just enough pennies to tick over (mine is the larger salary). Apart from anything else I'm loving it and finding confidence in myself that had been largely beaten out of me in the last 18 months at work.

Talking about writing, I'm still waiting to see if the piece for the Saatchi Bill is going to go up. It's still too long (me?! writing something too long?! NEVER).

And there I go again. All about me.

I've posted a couple of bits on a couple of people's threads, but for anyone having a hard time who I haven't been able to catch up with, love and hugs and I'll make sure I catch up soon.

Sarah

XXX

[J_T]

Sarah, thanks for the update and please don't feel guilty. We're human with all the emotions that humans have and feel. As ever you are doing a great job and you need time for yourself too, of course you do!

Have a manly pat on the back!

Julia x

[InfoForMum]

Ta hon. Thanks for looking out for me

[nikkis]

Hi Sarah,

I think it is really great that you have had some more time to yourself and I am sure your family have appreciated seeing more of you, even if it is the back of your head while you beaver away writing your pieces! I imagine your Mum feels more confident as a result of what she has achieved without you. Sometimes, I wonder if I left Paul to cope for a little while without me, he would actually surprise himself, and feel more like the old Paul.

Good luck for Monday,

Nikki

[Cathy]

Hi Sarah

Very best of luck with the CRT scan. Here's hoping the slow improvement in appetite and weight gain reflect the fact that you will have good news

Cathy xxx

[Slewis7313]

Hi Sarah, whilst I understand that you may feel you have left you Mum to manage on her own for a while, it sounds as though it has spurred her on to do more for herself. It sounds as though she is driving things herself now which must be a good thing. I am certain she knows you are there and available if she really needs you. In the meantime, you have still been doing good things which will potentially help us all and for which I am sure we are all grateful. I hope things continue to pick up with your Mum and I am sure you will keep us posted.

Take care!

Steve

X

[InfoForMum]

Thanks to all of you. I actually spent the night with her last night and she brushed off any suggestion that i hadn't been doing my bit. Actually repeated what you guys said-she would have called if she needed me.

Also had some sensible feedback on why her stomach has been behaving badly and being so sore. Apparently there's a build up of bile. Not yet quite clear where. Damn shame no-one thought to say before now as anything interventional to sort is ruled out by the chemo. She's feeling much brighter knowing the potential cause though.

As always you've all helped no end and I'll keep you posted.

Sarah

XXX

[sandraW]

Thanks Sarah, please do keep us up to date on how your Mum is doing I have followed her story with great interest, you do tell her story beautifully. Hope she continues to improve and she must be so proud and happy to have such a caring, if slightly feisty!!!, daughter,take care both of you. sandrax

[RLF]

Good luck to your mum today with her CRT! Hope it all goes smoothly

Rob

x

[InfoForMum]

After staring at the Capecitabine tabs for about an hour and a half, she finally plucked up courage to take the first batch. The RT it's self went ok, but that's a more subtly cumulative thing.

I don't want her to suffer and have reminded her she can quit any time. If she does, perhaps our wunderkind London oncologist will consider taking her on for a trial.

I will keep him posted. Thanks Sandra & Rob (Feisty indeed! - well, yeah, can be

Been working hard at the alternative career too. Seems to be going well. For anyone who has anything to do with compliance in their day job, I had one of those convos where I DID say the clever thing at the time rather than think about it later and thought it deserved a picture.

pic.twitter.com/m09tqkPNu4

Love to all

Sarah

[Slewis7313]

Please wish your Mum good luck with the CRT from me as well Sarah. How many sessions is she to have? I had 28 and found this the easiest part of my treatment, but it did shrink the little devil.

Steve

X

[InfoForMum]

Thank you all for your kind wishes. The below is copied from my post on the Saatchi Bill thread as I'm seeing double from lack of sleep and kind of deals with that and a general update.

Thank you for your post on the Saatchi Bill thread Steve. The frustration comes through in spades, and mirrors mine.

As the Saatchi Bill considered my article about my Mum's situation with Nanoknife too long for their blog, I have set up my own. It also points to Maggie Watts' epetition that will compel the government to discuss the appalling situation with Pancreatic Cancer further if she gets 100K signatures by 4th April. She's half way there, but that's not enough.

Here is the link to my mum's story. If you believe in Maggie's petition or the Saatchi bill, could you help me by doing all you can by email or social media to spread the word?

Any help appreciated! And Jenni, noticed you'd already tweeted it. Thank you hon.

http://infospectives.me/2014/03/10/why-i-support-the-saatchi-bill-and-maggie-watts-epetition-part-2-life-is-too-short-not-to/

I've been quiet or a couple or three days doing online stuff, but also helping Mum who's now dealing with acute pain and vomiting - not expected with this CRT - so still trying to find root causes and deal with new pain relief. Doc left at 1.30am having given her 2 anti-emetics and morphine in a jab and she slept and woke up hungry. A victory. Fingers crossed tonight is better.

Thank you all for reading this, it means so much to so many even though this is a tiny contribution.

Love to all,

Sarah

XXX

Edited May 28, 2014 by InfoForMum

[EmmaR]

Hi Sarah,

Hope you mum is feeling a little better today ,you must feel worn out with all you do championing the cause for so many of us on this forum and everything else you have to do , but there are lot of people who are really grateful for what you do and the info and links you provide , I have shared the e-petition on facebook and a lot of my friends have signed and shared .

Take care .

EmmaR XX