She's gone

[MSH]

Thanks for the good wishes Sarah, and I'm so sorry to hear of the problems with your Mum. It sounds as if these are resolving and hopefully she'll be home tomorrow. As you say if it has cleared away the vessel involvement then surgery should be possible.

It's still early days and if you have to be in hospital it isn't bad. Please convey my best wishes for a speedy recovery to your Mum.

Mark

[InfoForMum]

Thank you, I'll pass that on. She was pleased to hear you'd posted and things had gone well. Yours is one of the threads she's been indirectly following so it lent her comfort that both you and she had made the same treatment choice. And you're right about the hospital. There are far worse places to be stranded

Sarah

[J_T]

Hi Sarah glad to hear your mum got through the procedure, but sorry to hear her recovery is taking a bit longer than expected. Im sure she'll get there!

Onwards and upwards!

All the best

Julia x

[Bee]

Exactly as Julia says onwards and upwards!

Bee x

[InfoForMum]

Julia, Bee, bless you both. Trying so hard to feel positive, but Mum's continued pain, fatigue, lack of appetite and stomach problems, despite the improvement I can see, has really knocked her badly. She is thinking in terms of this being the best she's going to feel from now on. Thinking she won't be able to look after herself, the dog or her business and I can't really shake her out of it. Little to drink, less to eat, remaining effects of GA and chemo and background pain will all be having an effect, but she's retreated into the here and now and can't see light at the end of the tunnel. An overdue bout of lowness perhaps. After all she's kept fighting with barely a moments introspection and self pity since day one. So hard to see and not be able to help.

One bright spot has been a lovely couple also on the ward. The woman is roughly Mum's age and is in for treatment for an infection, but is also not long past chemo. She has her all clear, which is great. She has taken a very personal and special interest in Mum and has been trying to keep her and my spirits up. She and her kind husband also gave us the name of their oncologist today, when we mentionned our London guy was being very elusive. Funnily enough it was someone Nikki had already recommended.

In my true style I was casting around tonight trying to think of something, anything I could do to try and move things in a positive direction, so found the chap's direct email account via t'internet. Dropped him a line at 11.10pm asking cheekily and with no real hope of a response for a 2nd opinion, if possible while we were still in London.

Well what do you think happened? Got a reply 10 minutes later! Now have another professor to consult who's going to sort out a surgical 2nd opinion and he's coming to the hospital at 7pm to see Mum and I. That's 7pm on a SUNDAY.

If you are a believer in things happening for a reason, then perhaps that's why we're still here. Would be lovely to think so and no matter the outcome, every extra expert opinion helps.

Love to all,

Sarah

XXX

Edited January 12, 2014 by InfoForMum

[J_T]

Sorry to hear your mum is feeling low Sarah. I suppose it was inevitable at some point given all she's been through. Nice that you have found friends on the ward, a kind word here and there does wonders.

Lovely Sarah still in battle mode and exploring every avenue, every lead you are given, you're a trouper par excellence! Please look after yourself, i know you will be feeling exhausted.

Love to you and your mum.

KBO

Julia x

[cestrian]

Hi Sarah

That's our girl! Living up to the Nike slogan "Just do it!" Your Mum is so fortunate to have a scrapper like you in her corner while she recovers her strength. I'm sure, from my own experience, that she will soon bounce back once the effects of the GA and her understandable post-op soreness wear off.

It is great that you've managed to enlist oncologist reinforcements so quickly and hope tonight's meeting goes well. Try to get some rest and relaxation today, you'll be frazzled otherwise!

Love and Peace

Mike x

[InfoForMum]

Cheers guys. You really do cheer me up! Meet with oncologist tonight went really well. Reserving judgement slightly as I've had great experiences with others on initial consultations then they've become very unresponsive to questions (the folk I like usually work out the quickest way to shut me up is to give me a quick considered response otherwise I get a bit like a dog with a bone!). Trust this guy to do that.

Mum is leaning towards making him our primary oncologist for a couple of reasons. 1. He was equally interested in her history as a person, our family in general, how she was feeling right now and in her cancer specific story. 2. He's going to order a PET scan and MRI for next week to get an early doors look not just at size and progression of tumour but at activity of the damn thing (we were dreading a 2 month wait for the post IRE scan). 3. He's going to get us a 2nd surgical opinion as he's sure, if the thing is feasibly resectable he can find us someone who won't insist on CRT first (a massive relief to Mum). 4. If that doesn't work out he's talking about a couple of trials she may be eligible for.

It's all about choices and having people in your corner and I'm feeling far better about the availability of both tonight. Tomorrow is squarely focussed on helping Mum feel that much better again so we can get her home.

As always thank you lovely folk for your support. It's been very 1 sided lately and I'm so sorry about that. When I've made it home and have some clean clothes (there's only so many times you can wash your smalls in the sink without fabric conditioner before they get intolerably crispy!) I'll start trying to do as much for others again as you guys have done for me.

Sarah

XXX

[J_T]

Sarah, look after your mum and yourself for now. Folks understand.

Your new onc sounds like a goodun. Good luck with the next steps.

KBO

Julia x

ps eeewww at crispy smalls

eta you ARE helping anyway by posting all this information which will undoubtedly help others!

[Slewis7313]

Sarah, apologies for only a short response previously, especially as you have both had a rather hard week. The procedure was obviously more of a challenge than is normal, but it does sound like it has fundamentally gone well. I am so sorry that your Mum has been through the wars with this, especially as the expectations were (are) so high. Please give her my regards and I hope she gets out soon with some new and very useful advocates from Prof contacts. Looks like I may well be checking out this establishment soon!

Take care both!

Steve

X

[InfoForMum]

Thanks Julia - hope you noted it was washed smalls!! And thanks Steve. No apologies for brevity of posts needed. Looks like Mum is set for discharge tomorrow then back late next week for a PET and MRI scan with the new oncologist. She's MUCH more herself today, keeping the nurses late chatting their hind legs off. Lovely nurses I might add. May be in part due to continued IV fluids and last quite extreme measure to get things "moving" again if you know what I mean. Actually, sod being coy. She asked nicely for some more pain relief this afternoon, then her nice nurse knocked on the door and said, much to Mum's surprise "I've brought the enema".

Turned out to be different things ordered crossing over, but to me it looked like one heck of an effective way to combat drug seeking behaviour. I'm sure if everyone got an enema first when they asked for harder drugs it would cut down on problems in A&E depts!

Still very sad we missed the chance to really make the best of nanoknife by delaying til after New Year. Damn cyst! On the other hand, his attack on the SMA with a 2nd surgical opinion and chance of a trial might put us on a better path than we would have been on otherwise.

Onwards and Upwards as you good people so rightly say.

Sarah

XXX

[InfoForMum]

Off home today. Mum in less pain. New oncologist arranged a pain specialist to touch base and as a result Mum is no longer concerned about dealing with things until the full picture becomes clearer next week. Also, new oncologist popped in to see her again this morning.

Car hired and hotel/train for return trip for PET/MRI sorted out. Looking forward to seeing my man and my girls. He's been a superstar as has David who's house and dog sitted for a whole week. I was worried we might have upset his wife, but she just told him to make sure he didn't mess Mum's house up, take down her christmas decorations and stay as long as needed. My boss and my other half's boss said "take as long as you need". You guys have rallied round and kept my head screwed on. Denise, another paitient, praying for us, talking to Mum and making her smile and recommending the new oncologist. Kind and professional nurses, doctors, radiologists, phlebotomists, dieticians, catering staff, cleaning staff, hotel staff, restaurant staff.

Very lovely people all reinforcing my faith in the inherent good in human nature and making it possible for me to do what I need to for Mum.

Sarah

XXX

[MSH]

Safe journey home. It's good to see how everyone is rallying round to help out.

[J_T]

Glad things are on the up Sarah. We very much rely on friends, family and employers at times like this and it's great to hear yours are so supportive. I was fortunate in that respect too.

Onwards and upwards lass!

Love Julia x

[J_T]

Mark, hoping you are continuing to recover well too.

Regards

Julia x

[Slewis7313]

Sarah, hope you have a good drive home (impressed with "keep the sun in the left".... I do actually rely on that from time-to-time)! I really hope your Mum continues to improve and sure being within her own four walls will help.

Take care both

Steve

X

[InfoForMum]

Mark, thanks m'dear. I trust you are recovering well. Good to hear you had a good crew on board Julia. I agree it's so, so vital to feel folk have got your back and Steve, the sun navigation got a tad scuppered by low cloud today, so ended up with Mum, a google maps list of directions without an actual map and 45 mins to get out of London! Not easy to head East on X street when you don't know which blimming direction you're facing to start with! Mum and I navigating together is potentially incendiary at the best of times, but apart from 2 little growls at each other, a number of peed off local motorists playing "guess which lane she wants now" and 3 times round one particularly scabby east london industrial estate we did quite well. Even had a rainbow come out when we finally hit the M11 which felt like a celestial smiley face for getting the job done.

The great news - she's been pain free just on paracetamol til bedtime (you called it right Steve

As you can see by the time of the post I can't sleep. Partly cos of the come down and hiatus now the immediate stress is over, partly hearing that lovely Cathy has lost her wonderful man. Doesn't fail to pull me up short when another family loses someone. So damn hard for them, but she's already talking about a benefit to help others. He must be so proud wherever he is. Prompted me to go upstairs and give my girls another sneaky kiss. Little one, bless her, sat up in her sleep and held on to me. Almost like she knew Mummy needed a hug.

Made me triply pleased that my Lifescan results came back clear. No signs of pancreatic iffyness, good heart, good lungs, good almost everything except vitamin D which could explain a lot. So, time to start treating myself better so I minimise the chance of my girls having to do this kind of stuff for me.

Thinking too much ya think!!!

Take care all and love to you and yours,

Sarah

XXX

[nikkis]

So glad to hear you are home. We drove in and back yesterday with a sat nav. not sure if it was any better than your method Sarah!

Nikki

[InfoForMum]

Sure you did fine Nikki. Hope Paul's coping by the way. Know you've both been having a bit of a rough time lately.

Mum's very low again as she's got herself in a tangle witht he pain/opiates/constipation/anxiety/pain vicious circle, but the pain specialist gave her a ring and reassured her a little. She also doesn't feel up to either walking the dog or driving at the moment and tried to carry suitcase up the stairs yesterday, but had to stop half way. It's all a big blow to her perception of herself and her routine of the last 10 years is out the window right now, so she's quite lost and probably spending too much time inside her head. Trying to break that cycle, but I'm back to work on Monday so things will get tougher for a little while.

Also rushing round getting new copies of disks for oncologist and surgical second opinion. NHS have thoughtfully changed their policy so I need a GP/Consultant form filled in as well as an FOI form to get them despite having had copies of self same disks before Xmas. I asked why it had changed. Form says it's to avoid patients being caused harm by having the results (well if their doc hasn't shared what's in them they should be shot anyway!) and verbal reason from team who prints them was that some people have been posting images on social media sites. Sorry!? Firstly they're their images to post, secondly what the hell difference does getting a second signature make to stop that.

Got a tad fascetious after only 90 mins sleep the night before and said "Well of course red tape has to trump mum's cancer doesn't it. Wouldn't do to have her die without the proper paperwork in order first". Not fair I know, but I'm a monster when I'm tired.

Off to book train for next week now. Thought I had but hadn't.

Take care all

Sarah

XXX

[Slewis7313]

Hi Sarah, sorry to hear your Mum has had a bit of a knock back. Hope she picks up again soon though.

On the scan result front, I had a similar recent experience. Last time I requested copies, they appeared (free of charge) several days later after a verbal request to my Oncologist. This time, I was sent the paperwork to fill out (electronically) but was also asked to phone a specific number and the lady there assured me she would assist them through the system to get them back to me as soon as possible. Obviously having to stick to the rules, but helping as far as they can to beat the slow timescales (dictated by the data protection act)!

As you say, the records are ours, we should be able to get them quickly and do with them what we choose!

Steve

X

[InfoForMum]

Thanks for empathy Steve. All sorted. Disks gone registered mail. Mum did far better today by keeping herself busy and alternatiing oramorph and paracetamol as preventatives (really hard psychological shift to preventative pain relief after a lifetime of withstanding as much pain as poss before popping a pill, but she's admitted the pain, when it's established clouds everything).

Reminded her what she's achieved today with no need of a nap compared to last day in hospital. No comparison, so while not relying on the improvement we're both delighted. Also appetite and taste buds pretty much back to normal so that's fab too. Roller coaster extroadinaire and all limboed until next weeks tests and consult.

Local onc has with much voicing of doubts and understandable dubiousness about our choices delayed CRT again (was to go ahead starting 6th Feb). Very far off piste now as far as original treatment plans and we both feel as anyone else would in such uncharted territory. However does feel sensible to reserve judgement until all options reviewed, especially as this would have been a window with no treatment before CRT anyway. Collective opinion on london end seems to be that they can do better for her with more chemo/nanoknife with a trial or possible whipple as aims. Focussing on keeping the little dark passenger quiet in the mean time.

Sarah

XXX

[MSH]

Good to hear your Mums improving.

[InfoForMum]

She is thank you Mark. Pain is still an issue periodically (continued oramorph 2-3 times per day, but only 5mg. I'm reliably informed that's a negligible amount), but she's walking the dog and driving again which is great.

I also came on to post about the consultation on the Saatchi Medical Innovation Bill. Regardless of the outcome I think another high profile discussion about cancer research, variations in treatment offered and slow approval for new treatments can't do any harm. Find the details here: http://forum.pancreaticcancer.org.uk/viewtopic.php?f=21&t=1276

The Saatchi bill comms team are looking for people who have met blockages accessing newer treatments and I've left contact details to get in touch with them on the above thread.

Sarah

XXX

[J_T]

I looked at that Sarah and joined, have also spread the word on FB.

Glad to hear your mum is feeling better x

[InfoForMum]

Exhausted tonight (approx 2hrs sleep again last night - dunno why I couldn't sleep) and really worried. Mum's constipation seemed to be on the way out on Saturday with loo twice, but then lower abdo pain kicked in with a vengance, not dealable with by oramorph, then Sunday spent day in bed getting up with diarrhoea and sickneess (not constant, but twice each). Same today.

She didn't tell me "because you were at work and I didn't want to worry you". Told her tonight to take temp and it was 38. Emailed oncologist and he said "bring her in". Sure, yeah, lets do the 120mile trip to central London (I know, rod made for our own backs not sticking with the locals). At the moment the on-call GP is on the way. Local oncologist contacted to flag poss need for admission and I've got no experience of this to judge if it's a massive worry (feel it might be with oral antibiotics stopped for first time since op yesterday, on-going mild immunosuppression and an op that dicked about with her stomach with needles).

All balanced against mental and potential physical disaster waiting to happen if we go into clueless emergency room or general ward. Am probably making a bunch of enemies, but have directly mailed Prof who did the op, new London oncologist and her local oncologist with details of symptoms and flagging possible admission with request for private admission if at all poss. Sound spoiled don't we. It's not that. It's wanting to avoid a repeat of the performance where someone lost blood samples delaying pancreatitis diagnosis and pain treatment by 4+ hours, my mum was left to wet herself, a nurse tried six times to take blood despite good veins digging into Mum's wrist in the end while she moaned in pain, given inedible food had her creon taken and locked away and had to wait up to 2 hours for requested pain medication and someone to unlock her creon.

Probably just a bug. Oh for a Clinical Nurse Specialst. Someone we could keep updated with all of our details to save me doing the job with no bloody medical training. Fear makes me beligerent, sorry.

Edited January 20, 2014 by InfoForMum