She's gone

I don't blame you Sarah, for being belligerent and using private medicine where you can!

We tried to get a private room for Ray on his first hospitalisation when he was so ill and the ward soooooooooooooo noisy. You'd have thought we'd asked them to paint every wall in the hospital - it wasn't happening. Locked up drugs? I used to take my own supply in my handbag just in case. I got shouted at once for giving him oramorph when they were late - bovvered?

For infections the standard treatment we got was IV antibiotics and fluids. Ray refused to go in in the end.

Hope you get some sleep my love and your is feeling better.

Julia x

Julia just love you m'dear. You make me feel looked after. Will bed down in case she calls saying doc wants her to go in. Unlikely for a generalist not to want to cover their back so expecting it. What breaks my heart is that probably means delays to PET/MRI and plannning. Mum's so desperately in need of some absolute facts at the mo even if that's bad news.

S

I'm so sorry for you Sarah. Caring for someone is an enormous responsibility.

My Jonathan HATED hospital so each visit needed hugely weighing up and was always stressful to do. Clearly this isn't the case for you but in the week before he died we made a choice NOT to take him in (to A+E) as we knew it would stress him out and upset him for possible no benefit so we didn't. The right decision for him at that point.

I also did what Jools did.. I smuggled in oramorph for his last visits when he had his leg problems and he kept it in a bag by the bed and helped himself. If you ring a buzzer and 45 mins later it hasn't been answered then what is the alternative?

Fingers cross this is just a blip for your Mum but I completely empathise with how you are feeling.

Cathy xxx

Cathy thanks. Bless your heart for looking out for me with where your head must be at. Also noticed your brief post on the corrie thread. Presumed it was responding the bit about wheelchairs on cobbles. Laughed out loud. Love that irresistible urge to share whatever makes you smile, when it comes in your head. Tis a brill thing.

Have said to mum we'll go in in our own time if it's needed. We wouldn't be the first ones ambushed by something new triggering a downward spiral, but most of me feels it's too early, things were moving too slow. Pancan paranoia or realism. Hopefully the former.

Some probably worry I'll be incapacitated if this rushes on to the almost inevitable conclusion, given how hard she and I have focussed on a possible cure. Don't be fooled. I've got the weight of all that means with me one shoulder with the weight of finding best next steps on the other and Mum's exactly the same. Just thank my lucky stars I'm close and can do anything to help.

S

Hi Sarah,

Yeah.. My reputation for wheelchair portering is in tatters. *sighs*

Let's hope it is just PC paranoia. I'm sure it is. Get some rest now (I hope you are) as you must be exhausted.

Love to you both

Cathy

Xxxx

Well that was a welcome call. Not quite ready to sleep, but a very sensible GP came out and reassured mum she didn't have any blockages, told her oramorph on empty stomach can cause sickness and told her the 3 sachets was a BIG laxative dose so no wonder she'd had vicious abdo pain. Oh, and temp back to normal.

Feel slightly sheepish going off the deep end, but maybe you'll get it bearing in mind lack of sleep and recent hospital experience. Not to mention guilt waiting to jump out at me about finding and bringing her Nanoknife as an option if that's what's caused this.

Got a rather awkward mail to write to various consultants next. Serves me right.

S

Hi All,

Back from London. Review of PET/CT & MRI shows there's still no metastatic disease and SMA, although nudged by tumour, not encased. That's incredible. Bittersweet in one way as next best step recommended is CRT which Mum is still understandably nervous about, but given her reaction to the Nanoknife (will never know if it was a approach thru stomach, pre-existing cyst, pre-existing inflammation, after effect of GA or all of the above) he's backed off from initial suggestion of more nanoknife + GEMOX. Was rather an abortive consultation. He tore off to do a news interview he'd been asked to do an with 1hr notice after 10 mins, but is calling this weekend.

Until this morning Mum still had no appetite including tears over losing more weight and remaining weak (4.5kg lost since op). On the upside again, pain is lessening, especially the mid left abdominal pain. Mum's held back on laxatives, just using over the counter senna at night which has reduced lower abdo pain. Still occasional oramorph.

Feel awful for not feeling more elated. Think with return to work, seeing Mum in tears with pain and worry and build up to results that everyone expected to show growth or mets I'm just out of steam. Mum's the same. Looks to be CRT start of Feb, review of status after 3 weeks then decide if we're still pointing at surgery or aggressive maintenance of local status.

Love to everyone else and will be catching up on others news soon.

Sarah

XXX

Sarah, your mum seems to have had a very difficult time of late, but hopefully things will be less of a challenge in the foreseeable future. It's really promising to see that the vessel involvement is not great, so hopefully the CRT will have the desired effect in this area. For what it's worth, I had 28 fractions of CRT and this shrank my tumour from 3 to 2.2cm. In fact the CRT was (for me anyway) pretty much a walk in the park. I listened to the advice at my assessment and took anti-sickness tablets before every session and had absolutely no noticeable side effects. In fact, on two occasions I fell asleep on the table (though it was during the hot period last year). The staff operating the system used to pull my leg as I turned up in sandals and shorts whilst everybody else seemed to be dressed for a Sunday outing. I certainly hope it is as easy for your Mum after the trials of the last few months.

Good luck to you both with this!

Steve

X

Steve it's so great to hear from you. Your CRT result is one I reminded Mum of just today. Hearing more about the experience really helps. I'm just wishing, for her sake, that her health picks up to sail thru like you did.

Please, also don't let our experience of nanoknife put you off. Perhaps factor it into your reasoning, but pick Mark's brain for a balancing view. Whatever your next step is, greatest luck with it!

Sarah

XXX

Sarah, I have not changed my opinion with regards to Nanoknike and it is still my next perferred treatment option. I had a meeting with the senior surgeon on Tuesday (the one who said they could not operate). The conversation covered all sorts of things and as a result I am just slowing down a bit with my plans (for good reasons). I need to update my own thread to elaborate.

Again, fingers crossed for you Mum.

Steve

X

Saw your thread, very rational and comprehensive. Thank goodness, despite earlier shillyshallying that the first chap you saw worked out he needed to get someone in to talk some basic sense about your digestive probs. So, so understand about need to know root cause. It's so vital to moving on, as any plan to cope with symptoms is psychologically so fundamentally based on whether it's likely to worsen, improve by it's self, improve with some kind of treatment or stay the same. My blood boils when medical professionals won't pick up a book, pick up the phone or refer on to get that kind of clarity for patients. "It won't change the outcome" is too much of an excuse sometimes me thinks.

Always nice to hear the workings of your sensible head Steve. I'm far more "flare up, calm down, get on" in quick succession - usually circling back to the rational, logical best conclusion, but wasting too much nervous energy on the way As I said, your posts are a fave of my Mum's so thanks again for taking the time.

Sarah

XXX

Hi all,

I've been following the #CanCan4PanCan campaign.

People who normally wouldn't and possibly shouldn't high kick like loonies to a great backing track to raise awareness.

If you're on Twitter or FB perhaps you can help get the #CanCan4PanCan tag trending and help this make a massive splash?

Take care all

Sarah

Over 4,800 views, already spent some time trending with London Twitter users and all sorts of famous bodies getting involved. Aren't folk good and kind when you give them the chance to be

I'm so so glad that the #CanCan4PanCan campaign is going so well, but I've kind of run out of steam. Mum continues to have symptoms and it's crushing me to not know what's pancreas, what's ongoing stomach problems and what's something else entirely. Her CRT has been delayed by a month because her local oncologist is on holiday and wants to do the planning personally. Don't know how I feel about that as don't know how I feel about CRT. Both mum and I are seeing it as a means to an end, the end being our surgeon being able to get permission from his MDT to operate.

Her abdominal pain is intermittant and she says it's too high to be pancreas. She says it must be stomach then looks at me wanting a definite answer. Now it's starting to radiate round to her back. I know what that could theoretically mean. Her appetite is up and down like a yoyo. Some days she eats and throws up. Some days she manages ok. Some days she eats, but has horrid griping stomach pains and acid reflux after. She hasn't put on the 4.5kg she lost post op.

I saw something on a mickey mouse US show that no-one had ever told us before. If the pancreatic enzyme ducts are constricted or blocked the backed up enzymes activate when you eat and start to kill pancratic tissue. Think I had that in the back of my mind, but also kind of assumed someone whould have talked to us about it, then remembered the November imaging report that mentioned "progressive atrophy" in her pancreas. Hate that no single person is sharing the whole picture. Guessing they think it's not worth it now. Some here had pancratic duct stents, but there's probably another whole set of risks to go with that.

I've put in calls to the local cancer nurses (less hopeful as they're generalists with a massive workload and a reactive way of dealing with us e.g. what's wrong today? - treat or wait? Same each call without any really robust relationship building) and asked her GP for a referral to Macmillan. I need someone other than me, someone not 100% emotionally invested, to get to know mum, her symptoms, her history and give us some practical, emotional and medical guidance about when to worry, when to not etc.

Is there any such thing as a Clinical Nurse Specialist that has expertise in pancreatic cancer? I'm guessing there is somewhere. Probably at our local specialist centre. If you call 2.5 hours drive local. Sure, we'll just pop over there when she's deathly low or poorly feeling. As I've always said I get the arguement for concentrating surgeries in high volume centres and concentrating diagnostic expertise, but the nurses needed to fill the yawning gaps between each 20 minute consultation and to co-ordinate between various different care givers for various aspects of the disease. They don't need to be central! They need to get trained centrally then spread out to where they're needed! Same goes for chemo. That should be local.

At the moment it feels like her peripheral symptoms are being completely ignored while she waits for this. No suggestion of a blood test, no nothing. I can't be relied upon to make judgements about what's normal or not. I'm withdrawing into myself and becoming snappy with her when she gets low and feels helpless. Horrid.

I feel like this is the beginning of the end and I feel like I'm giving up on her just by saying that. I really really hope my instincts are proved wrong.

Sarah

Oh Sarah, don't be so hard on yourself! You are only human and if you have got a bit snappy it's because you are under so much stress. My word no one could do more than you're doing, you must be exhausted and at the end of the day your mum knows just how much you love her, how could she not?

I can't offer much except my support and wholeheartedly agree with all the points you make. We too lived miles from our specialist centre and I'm sure Ray was disadvantaged by that. There certainly seems to be no consistency in the quality of care given around the country.

You're certainly doing the right thing getting Macmillan referral, our Jenny was brilliant and Ray loved her, she always seemed to know exactly what to do for him.

This is also the second post I've read today where treatment has been shelved due to holidays, I find that completely shocking. Surely there are others within the oncs team who can cover for the main man, I mean what would happen if some calamity befell him and he was out for months, would you have to wait then? Do they even know the psychological effect on the patient of having to wait for treatment?

I'd like to give you a big hug and reassure you what a fabulous job you're doing.

Much love

Julia x

Sorry to hear your Mum's having a hard time of things at the moment. I do think that the pain or discomfort after the Nanoknife tends to be downplayed. I am still having some discomfort almost four weeks later, I had no abdominal symptoms prior to the procedure. On the other hand it isn't bad enough to take a pain killer and is absent when I wake on a morning. I was able to enjoy a skiing holiday last week, and managed 5K on the rowing machine yesterday.

Mark, thank you. Right about managing expectations better ref procedure related pain, but sounds like you are doing incredibly and I'm so pleased.

Julia, thank you too hon. This is a new phase for me. Cedeing control, feeling helpless and all against backdrop of new job and kids being hellions. Not helping her as I feel almost as scared as she does about whether pain is progressive, likely to resolve and what the root cause is. I, like you feel MacMillan is the right way to go. So glad to hear it helped. The trouble is she's so low she's not organising things and the doctor says he must see her in order to make a referral. Chicken and brutal egg

Probably painting this in far to dark a light. Forgive me. Having said that, the stuff about the location of support services is not something i'll apologise for. It's something that has to be changed.

Sarah

X

Hi Sarah

I can't really add anything to what the others have said but just wanted to post a message to you and I empathise completely with how you are feeling.

Clearly you must be feeling exhausted. Caring for someone you love who is feeling poorly and has some pain is exhausting and frightening and upsetting. And Julia is right about not being so hard on yourself.. We can't be superhuman 100% of the time.

On a pratical level I think you can do a self referral to Macmillans and not need the GP to do this. Maybe give them a call and ask?

Try rest up too if you can.

Sending love and hugs

Cathy xxx

Hi Sarah,

The thing you saw on TV about the enzymes killing the pancreatic tissue is actually pancreatitis. Sorry, I can't remember fully now, but did you ever say that your mum had pancreatitis?

Also, with regard to pancreatic nurse specialists, these are based at bigger hospitals - not all are at regional specialist centres now, which is great. Last year, to my knowledge of nurses who contacted us, 3 of these HPB (Hepatopancreatobiliary) clinical nurse specialists posts were created at District General Hospitals. Fantastic news.

A few years ago, following Peer Review, the recommendation was that these posts be created at many DGH's. However, the probelms lies with funding of the posts. The posts created last year are mainly part time. In DGH's, pancreatic issues as you probably know are covered by Upper Gastrointestinal CNS's, along with oesophageal, gastric and other cancers. It's not ideal that pancreatic patients are under this remit also, but because of the small numbers diagnosed every year (comparitively I mean), the probability is that it will remain this way, with the exception of some of the "bigger" DGH's being able to create part time posts.

I am aware that none of this is of much comfort to you right now, and I am sure that Macmillan is the right path to take - someone to share the load and as you say, who has not got the emotional attachment.

I hope your mum gets better soon, and of course, she is welcome to call us up or email anytime.

Kind regards,

Jeni.

Thank you both. The news about progress does make a difference Jeni. While hating all this I'm glad others might not have to have such a hard time.

Unfortunately Cathy MacMillan did demand a GP referall and her GP can't see her til Monday. She understandably doesn't want to go through this with another GP and he's not working. I tried to intervene to tell them that my Mum was at home in desperate tears and that regardless of his clinic hours could he not find it in his heart to spend 5 mins with her to avoid another few days delay to her getting someone who will come and see her on-board. Waiting for cover doctor to call me now. Don't know any other way to stress the impact of this to them. Did call on their basic humanity when told AGAIN that he just doesn't have a clinic so they can't help. Keeping out of shouty waters, but only just cos I know that's counter productive.

Hesitated before posting all this, but so glad I did. Thanks guys.

Sarah

Hi Sarah,

You are doing such a fab job, don't let the jobsworthers get to you! Also just because your mum has had more pain and discomfort it doesn't necessarily mean you are on a downhill slide. You know how rubbish paul was over Xmas, he was having 300mg of morphine in a pump and vomiting up nearly everything? He is now virtually off the morphine and the vomiting seems to have stopped. (We won't think about the cellulitus in his arm and the exhaustion from the abraxane, it's a side show!).

So with the Macmillan nurses help your mum can get the pain under control, and get her back on track, just bear in mind it often takes time for things to start working and tweeking (not twerking!) may be needed,

Much love,

Nikki

Thats great to hear Nikki! Well done Paul!

What a relief to have some good news.

Jeni.

I've been so frustrated and close to giving up myself recently, and I swear it's only 'cos we are doing it for someone else that we can keep finding the energy and will to carry on doing what we need to do.

You're doing a great job, reading your posts makes me think I'm slacking to be honest Don't be hard on yourself, it's too easy to feel the whole responsibility rests on your shoulders...it doesn't. Though I need to start to understand that myself!

Keep being who you are, 'cos it's awesome!

Rob

x

I can only say our GP was fantastic and came whenever called or, he just 'popped in'!

Saying that, if it had warranted it, I'm not ashamed to say I would have over egged the pudding and got a home visit the same day if it killed me!!!

Nikki! Brill to hear from you and hear good news about Paul. So, so, cheered me up! Keep me posted hon and sending hugs.

Know what you mean about the greater good Rob. Mum might have had a horrid time post nanoknife, but she always found comfort in the fact that she made her choice the right way, retained control and has added a little bit extra to the store of knowledge that could move this forward. Written a piece for the Saatchi Bill blog on the subject that's likely to get published soon. Come and see us whenever you can if you are struggling. Today all the kind thoughts, including yours, have proved again how much this forum can help.

Good practical news too. Kicked up one almighty overemotional fuss with the docs while making it clear I was angry and upset due to the situation, not at them, then the lovely cover doctor found her an earlier appointment with her own GP then did the Macmillan referral on the spot, marked as urgent. Should get a call from a nurse in a day or two . Raced over to Mum's after the admin dealt with and actually found her in really good spirits. She'd managed to have a shower and get dressed and had got the pain under control and was delighted to have the prospect of someone independent who could support her and I on-board.

If the nurse or GP had turned up just then they'd have thought I was telling massive porky pies about the state she was in but I know from my own tangles with depression and anxiety that it's less about a constant depressive or anxious state (unless things have got deathly dire), it's more that your ability to cope and face even the smallest challenge is worn wafer thin. Normal one minute, chatting and interracting, then somat comes out of left field, be it pain, an unexpected bill, a broken appliance or just a dropped bit of toast and BAM yelling or messy tearful collapse. Sure that's familiar to some.

The aim of the game is to give mum more understanding and control for her non-tumour related mental and physical wellfare and to get her good benchmarks and a qualified, but caring sounding board for when things creep outside expected or normal, so the panic doesn't take hold.

In a better place all together tonight. Those who follow my posts will recognise this pattern - slow burn, big explosion, quickly calm down and get on. Nice to note I'm consistent, even if it is consistently nuts!

Love to all,

Sarah

XXX