She's gone

[InfoForMum]

Thanks Emma,

We had a good meet with her oncologist today. He showed us the "bile build up" on a scan from Jan. We realised it was what other doctors had called a cyst, the one that stopped the prof doing what he wanted to cos it was slap bang in front of the tumour. Our doc now has 2 and 2 put together (he was previously blaming the supposed bile on the Nanoknife, but has now absorbed the fact it was there before - grew in the 4 weeks between early December planning scan for IRE and early 8th Jan IRE procedure).

It seems it's likely to be the thing causing escalation of her pain. It's pressing on an area at the top of her stomach and bile duct and all those kind of good things where lots of nerves live. Every time she gets inflammation around that area, pressure already caused by the cyst increases. Hence the totally unexpected and pretty unprecedented level of pain from the IRE and CRT.

Not a confirmed thing, but the logic holds and to give him credit he's now gone off with scans in search of a pancreatic anatomical specialist to look in more detail.

There's little they can do about cysts and they're not good at self-resolving (no-one wants to biopsy or drain them cos of the risk of contents spilling and causing more probs, even a very small chance it might contain cancer cells). IF (that damned continuous IF), she gets surgery, this will go with everything else. In the mean-time I'm wondering if a nerve block might be the answer. She is worried about escalating pain meds due to resistance, and tension, pain meds and pain are all affecting her ability to eat. I'll put that forward and see what's said.

Anyone know if that kind of makes sense?

Sarah

[InfoForMum]

Hard one to write this...

CRT impact was lessening with the exception of the nausea, but with all the unexpectedly harsh reactions to things I wanted to summarise the situation for all who'd been involved in her care. Sent a mail doing that to Surgeon, London oncologist & current oncologist. The upshot was an invite from her surgeon to come and have a detailed scan to get the full SP on this Cyst (he hadn't been told about it) and have a close look at the tumor.

Not the result we hoped for. Reported the margin to the SMA had closed with partial encasement and 2 shadows on her liver looking suspiciously like 15mm mets. No more chance of surgery.

Would have argued the toss about the shadow around the SMA given that the Nanoknife hit that area hardest and is expected to cause scar tissue and CT scans can't differentiate live from dead cells, but with the evidence of spread and the effect of the news on Mum it wasn't useful or timely. The PET and MRI done late Jan (the week after discharge from IRE) were pronounced all clear in terms of both mets and progression, so this has apparently happened since. The ballpark prognosis based on median stats for folk newly diagnosed with advanced disease is 1 year, so in or around that it's anybodies guess time-wise really.

On the plus side her health is on an upswing appetite, nausea, pain-wise. We've been offered a Celiac nerve block from a tip top guy in London and it may be Gemcitabine (if she decides to try it) will do something where other stuff has failed. There were 2x 5mm lesions seen on her liver way back in November. Folk who've followed us will know that. The MRI said they were almost certainly cystic benign things, but apparently not if (and this still isn't clear) they're the same spots that looked suspect before. If these appeared during Folfirinox they were probably seeded before that and if they were there at the 4th cycle scan and subsequent MRI, the chemo hadn't zapped them, so our little sideways wiggle to try IRE didn't impact this outcome. It's just the nature of the bugger of a disease.

Apart from looking at local palliative options we've been back in touch with our London oncologist to see if any immunological, genetic or similar less harsh trials or treatments are starting. Mum's quite enamoured of the prospect of living each day to the full rather than living treatment to treatment and scan to scan. I can't blame her, it's exhausting, but she also wants full info about the last few tools in the armoury before she decides to pitch back into a fight or gracefully withdraw.

Very new right now and feels weird for both of us having mostly normal days until a "probably the last time I'll..." moment crops up, but in true superstar form her black humour is already surfacing. A good sign.

Lots and lots of love to all and don't any of you dare stop sharing your good news! It is lovely to hear. After this I'm going to draw this thread to a close and move myself on to the carers forum (will link from here). Shouldn't have camped on your patients forum in the first place, but hope some of the info about this part of the journey has helped and send all beginning this fight, and those fighting on, the very best of vibes for the very best outcomes.

I bought 2 tickets for the Suggs and friends do. We can't go, so if you know of someone who deserves a bloody good free night out let sarah-jane@pancreaticcancer.org.uk know. She may have deserving folk in mind already, but if you get in quick you never know!

Sarah

XXX

[sandraW]

So sorry its not better news for you and your Mum, but that's the nature of the beast,its just so frightening and frustrating, you are such a help and inspiration Sarah, to us all,

love to you and your Mum take care sandrax

[nikkis]

Dearest Sarah,

I was thinking earlier that at the start of last year, so few of us had any idea of the nigthmare that lay ahead, and I personally could not have begun to imagine that I would have survived the relentless emotional and physical battle that this has been. We all carry on, no matter what this throws at us, somehow. So thankful for the love of our families and friends and for the wonderful support we get here.

You and your mum are such strong people, whatever you decide to do will be the right decision, that you will both feel comfortable with.

Sending lots of love to you both,

Nikki

[EmmaR]

Just sending best wishes and love to you both and hope you can enjoy some lovely moments together.

Emma xx

[J_T]

Beautifully put nikkis, that's it exactly.

Sarah, be aware that you have helped not only your beloved mum but lots of other people, and some who are unknown to us, who feel they can only read your comprehensive posts and who are not ready or able to share their own stories.

I can well understand your mum perhaps choosing not to continue with treatment and even without it she can continue being well for a long time to come and long may she.

Doesn't matter which forum you post in as long as we get to follow your journey.

Much love to you and your mum. You're a star!

Julia x

[InfoForMum]

Thanks for this guys. Such insightful helpful words. Bit numb as I said, but keeping on keeping on as all of us do. Thanks for being there.

Sarah

XXX

[RLF]

I'm very sorry to hear about your mum Sarah, I feel a close connection to your story and the drive you have had to explore every avenue of treatment. You have done everything you can and I'm sure you still are, she's lucky to have had you fighting her corner!

Rob x

[Cathy]

Hi Sarah

I can't add much to what the others have already written other than expressing of course my utter disappointment for you. I am sure that whatever your Mum decides will be a decision that will be made in the light of all the facts and the amazing amount of information that you have gleaned from research. You haven't just been fighting your Mums corner but everyone's corner who is on this journey.

If you are ever in London and fancy meeting for a coffee, chat, rail against the world, whatever, just let me know

Xxx

[Slewis7313]

Hi Sarah, so sorry to hear the bad news about what is going on with your Mother. It's so typical of this thing that she feels beeter at this time even though the damned thing is actually contradicting the upturn in her general outward well being. She seems to be clear (as far as you can with this) what she will do once she has all the facts. I really hope the thing slows down and that you both can continue to have many good days together. I also agree that you should post wherever you wish as the updates always make a good read and full of such useful information and comments.

Good luck to you both

Steve

x

[belgrade]

Hi Sarah,

Just echoing the sentiments already made by others and wishing you and your Mum all the very best in your battle. Enjoy the time you have together and give yourself a good pat on the back for all you have done for your Mum and for many,many others on this site.

Hilary x

[InfoForMum]

Again thank you all, and may well take you up on that offer Cathy! Mum is working hard to get some practical things sorted, she, like me, deals by doing.

I've been crazy busy on Twitter today @S_Clarke22 and have updated my blog http://www.infospectives.me , with Mum's permission, to try and prompt more support for Maggie Watt's pancreatic cancer epetition and the Saatchi Bill.

If anyone here hasn't exhausted every one of their contacts to get support for these things, you are welcome to share anything I've posted or tweeted if you think it will eke out a few more signatures.

Going to need you all over the next few months, but will try not to drive you all crazy. By the way, Mum sends her love. She really appreciates the support I get here too.

Lots of love

Sarah

XXX

[Bee]

Hi Sarah,

Can only echo what everyone has said, sorry your journey has taken a different direction. I keep an eye on the stories here and am thinking of all of you. Keep going you are doing an amazing job!

Bee xx

[Dollysdaughter]

Sarah, you have done so much and tried so hard for your mum and shared it with others too. I guess there comes a time when you just have to relax and try to enjoy what there is. I don't think its giving up,or giving in, its just a different kind of approach and one which I hope will enable you both to stop having to chase and to enjoy the time together.

Very best wishes,

Sara x

[sandraW]

Sarah you would never drive us crazy and I am sure all the wonderful people on here will be only too ready to give you all the support you need, just as you have supported others when they have needed it. Just sending cyber ((hugs)) to you and your Mum and all the best wishes in the world sandrax xxx

[InfoForMum]

Feeling very lonely and low. Realising that being the only one fit and able to fight Mum's corner without anyone beyond my man as a real life support network is going to perhaps be tougher than I can handle.

Was told by a friend tonight that my priorities should be me, my family, then mum, in that order. Makes perfect sense and I know Mum agrees, but we all know we have to keep our loved ones at the front of doctors/support workers/nurses/GPs minds or they can fall through the gaps.

I'm not reflecting Mum's mood here. She told me she's getting her appetite back, pain is still well controlled and she's planning what to do with money from some things she's selling. Love her and so proud of her, but a bleak self pitying mess this end.

The therapy is the vent, so don't worry about me. Felt like I couldn't say to anyone how I'm feeling cos it would bring folk down. Hope I'm not doing that and love to all in far nastier places.

I'll circle back up again, just hard to see it right this mo.

Sarah

[sandraW]

HI Sarah,

Couldn't not reply, everyone is different, and perhaps your friend has never been in a situation like the one you are in. You say your Man supports you so that all right. My mum

lived to be 96 I was so lucky to have her for so long but had to support her for the last 10 years, my man too was more than ok with this, whilst my sister and husband did just a half hour weekly visit, you do what's right for you my love, and vent all you want to. Glad to hear your Mum is feeling upbeat and in less pain take care sandrax

[InfoForMum]

Thanks lovely lady. Just had a productive GP visit. Amazing given my opening gambit was "don't even know why I'm here cos I doubt you can help" <

[nikkis]

You have every right to feel sorry for yourself Sarah. In some ways having your mum suffering must make things harder than when, as in my case, it is my other half. I don't have to feel split in two, as I am sure you do. Everyone I need to care for is under my roof.

You are doing a great job, glad to hear your doctor was helpful, hopefully the sun will shine again this weekend and you will feel a little better,

Love,

Nikki

[Dollysdaughter]

Sarah, I am in a similar situation to you and, although nobody really knows how anybody else feels, I think I am close! I just can't "switch off" and stop thinking about my mum and what is happening to her and how I can help, not for a minute and it's definately having an effect on my health and well being. Like you, I need to find some way of trying to detach in some way whilst still being supportive and caring. It's hard though isn't it?

Take care,

Sara x

[RLF]

Sorry to hear you're having a tough time Sarah, I do get the breaking point as I know there are times I have felt so close to just saying "that's it" and stopping my path. Your priorities are your choice, if you want to put your mum at top of your priority list then that is up to you, but sadly you will burn out and other people will suffer from it. In a way I'm lucky I have nobody else than Carl to worry about as everyone else I love it so far away I can just get on with it. You have a much trickier balance to find, but as you say you do need to keep those Dr on course as it seems without someone ...well, nagging them, they tend to forget a lot. Take some time and recharge, see how you feel. Something I've learnt is that there is no right or wrong, you do what you need to. Hope you feel better soon!

Rob

x

[InfoForMum]

Have just made the decision to use the sick note the doc gave me last time I saw him. At the time felt I couldn't do that to my boss, but a week on I've given in.

Mum is pleased. I haven't been properly well for 8-10 weeks and have just had a chest x-ray for a persistent cough (had a Bupa lifescan in Jan so not fretting bout anything really nasty), but also very very tired mentally.

I know it's the right thing to do.

Mum, by contrast is doing better every day. Nausea is mainly gone, she's looking forward to eating again, I think she's putting on weight and pain is well controlled. She's sold a property recently that will give her a financial cushion to spend on "what the hell" things and practical things without having to worry, but right now hates the urgency she feels about going places and doing stuff "before it's too late".

Have told her that cocooning at home, if she wants to, is exactly what she should do. On the other hand if she fancies a trip to see my sis, we can book a fab hotel without thinking about it and I'll drive her. She's still not quite believing that everyone will back fill the chores at home if she wants to disappear off at the drop of a hat, but that's many years of being prime organiser for you. Think she doesn't feel a holiday is a holiday unless she's been stressed for a week and got up ant 4am to pack!

A few "probably the last time I'll..." things cropping up, but at the same time we're planning another trip to London to see oncology wunderkind and find out if he has any trials in the offing she can take advantage of. Something without chemo involved would be fab!

Also going to touch base with the good prof as her liver mets are very treatable as is her primary if the cyst has resolved (pain levels suggest it could be getting less).

Right now tho, being mucked about with is at the bottom of her to do list and I'm on board with that.

Love to all,

Sarah

XXX

[Didge]

Am glad you're managing to take time out and that it looks like some pleasant times are ahead if your mum fancies it.

Didge x

[Cathy]

Glad to see you are taking time out Sarah. I worked full time all last year after Jonanthans diagnosis in Dec 2012 without a day off sick until it all got too much in mid Dec and, wow, what a huge weight was lifted from my shoulders not having to stress when I did. Deffo the right thing to do, for both of us.

Great your Mum is feeling better. I hope that she will do what she wants to do and not what she feels like she should. From experience I would say those "could be the last time" moments are hard to ignore but, you know, I am glad I/we had them as I think it focussed us on relishing every moment even tho the majority of those could be the last time moments weren't. Those moments are hard to forget. I think a good rule of thumb for all of us as no-one knows what is around the corner?

All the v best going forward and remember that offer to meet if you head down into my neck of the woods.

Cathy xxxx

[J_T]

Yes Sarah, what Cathy said

I know you've been working hard on the petitions too! Glad you're taking advantage of the sick note, you need to recharge a bit.

Glad to hear your mum is feeling a lot better, long may that be so.

Julia x