Taking the plunge!

You see and have a great time!

Steve

Xx

Bee,

Have the most fabulous holiday. You all need it and deserve it.

We'll look forward to hearing all about it when you get home.

Lots of love

Cathy xx

Yes Bee, enjoy your break as a family - well deserved.

Cheers!

Jx

Hi everyone,

I have been trying to catch up on all the posts since we have been away and it sounds like some of you have had a hard time and there have been a few hospital trips! Fingers crossed there are some more positive days ahead!

We have had a very relaxing family holiday and thankfully no need to use EHIC or travel insurance )

We have had fab weather, and done nothing all day every day, other than eating, reading, talking, swimming, snoozing and the odd (!!) glass of wine. We have just enjoyed being together.

Coming home was horrible, I wanted to stay in our bubble, returning to reality after a nice holiday is always hard but was even worse this time. I guess just because reality is a scary place now, does that sound nuts?? So it's work on Monday, back to school for kids next week and back to 'one day at a time' and try and hold it all together!

Take care everyone,

Bee xx

Hi Bee

Glad you had such a great holiday and you were able to RELAX.

I completely empathise with your sentiments re coming back. I felt it quite poignant when we were away but had, in my head on coming home, a grim determination that we WOULD carry on doing nice stuff as much as we could which helped ease coming home again - as did the nice weather when we got back. So, hopefully you will have some nice things lined up to do and look forward to.

Hope it's lovely where you are today and work isn't too depressing... It's a belter down here.

xx

Hi everyone,

As always I have been following everyone's posts and chipping in here and there. Haven't updated our story here for a while so thought I would update. I probably haven't updated for a while as I have found the last few weeks difficult and writing it down makes it real (!).

Post radiotherapy and chemo scan was due beginning of October but was pulled forward as my man was feeling generally a bit rough. The outcome, shrinkage of the primary tumour as hoped for but sadly spread to lymph nodes and liver. Devastated about sums it up, although it was always inoperable this is just a huge step in the wrong direction. He has opted for more treatment and is now due to start the folfox regime, so the fight continues in a bid to buy time. At the moment liver function is being monitored, so we just hope we can start chemo next week, keeping everything crossed!!

There are good days and not so good and although we feel lucky that he has stayed very well for a long time and that others on her are going through much harder times, some days I just feel so sad and scared for him and the kids, but most of all so helpless that I can't help my best friend. Have to keep telling myself to keep the door firmly shut when my brain starts to think and just stick to my mantra, one day at a time.

How I hate this bloody disease!!!

Thanks for my rant

Bee xx

Hi Bee

You rant all you want. I am so sorry. You'd said that the scan was due and that you were worried the last time (I think more or less) that you posted. I do know how you must feel, as most of us will do.

I'm not sure if there is much I can write to make you feel better but I think there are positives in that Chris still feels well (it sounds like? This is very important), the primary tumour has reduced and that you are going to start (fingers crossed) a new regime, and this may work better for him that his last one. It's 2/3rds Folfironox I think that he has been offered? I'm guessing you must be in an area where they don't offer folfironox generally.

I'm not sure if this will hep at all but when Jonathan was diagnosed last December, the disease had already spread to his lymph nodes and liver but he has responded to treatment and is still well (in fact, as you know, we've just got back from Greece), so don't give up hope that things won't pick up? In any case, it sounds like you are doing so well managing everything.

As we say, keep on keeping on Bee. We're here with you!!

Cathy xxxx

Bee, sounds like you have had a bit of a rough time of late and I think we are all agreed that there simply aren't enough expletives to cover Pancreatic Cancer, it is the most devious and underhand of illnesses. I am in a different place to you but Cathy's input sounds good and based on being in a very similar place. Hope the folfironox helps!

Take care

Steve

X

Hi Bee

How are things? I've been thinking about you.....

Jonathan still seems to be having problems with constipation tho is managing this with laxido so he's not bunged up, just (Just! Ha!) having tummy ache/shoulder ache. His specialist nurse suggested it might be prostrate related which has added something new into the mix. Think I might do a bit of googling. Nothing like a bit of googling on health related stuff to scare the bejesus out of you . Hey ho.

Hope Chris is able to start his treatment this week. Post an update and let us know.

Lots of love

Cathy xx

Hi Bee my fellow H.V.

Sorry to hear that you are having a rough time, it is just unbearable at times isn't it, and even one day at a time is hard when you are having rubbish days? Things have been better for us recently, which we are hoping is as a result of the chemo giving the cancer a kicking, as well as the home TPN. So we feel we have turned a small corner, so hope you do too very soon.

Nikki

Hi Bee,

Have just seen your post and I'm so sorry that you didn't get the results you were hoping for. At least Chris has the folfirinox to commence and there are lots of positive stories including our own out there. Keep strong for your lovely man Bee.

Karen xxx

Hello Bee,

so sorry to read about your results ,my hubby sees his onc this friday I am dreading it as his cancer is in the body & tail with liver spread lung and nodes though the consultant said the lung ones could be shadows !the specialist nurse did say she thought he would be ok for chemo but the onc as the final say, but I am thinking they will say he is not up for chemo he was a fit 70 until this June playing golf 5 days a week walking miles with me on the weekends now he has lost 3 stone in weight and is so tired most of the time then I think why go through the chemo with no cure at the end, arrr stop it Emma don't think like that then I remember all the young husbands & dads on here who are fighting this BLOODY PC with every fibre of their being .looks like its going to be another night of my mind going around & around which I know will make me mentally tired but how do you switch off . Bee sorry to have hogged your post but just felt like a rant !

Best Wishes to you all

Emma xx

Hi everyone,

Emma, please don't apologise , a good rant helps! Keep us posted re your appointment.

Cathy, folforinox is offered here and would have been offered back in January (diagnosis time) if not isolated to pancreas, but he had gem cap regime because there was no spread. I think we are now heading for Folfox instead because it is second line treatment now because he has already had gem cap and then chemoradiotherapy . And we are with you on the constipation front, the joys of morphine, thank god for laxido!!

We have had a better couple of days I think dexamethasone has given a big boost, this was started on Friday. Definitely much More perky and appetite better, subsequently I have had a good couple of days and we have had a lovely day out yesterday and a pretty normal weekend. Saying that most of the time I manage its just when the fear tries to get out of its box and I don't shut the lid quick enough!! Chemo and picc line still planned for next week and awaiting urgent MRI scan to check if stent is blocked and causing abnormal LFTs, just have to wait and see and hopefully get the folfox started.

Karen, you are amazing, still offering support to us all, I am trying to be positive and plan some nice things for us to do ( apologies in advance to the bank manager )!

Nikki, glad things are more positive for you and you keep turning those corners!!

Thanks for your support everyone

Bee xx

Glad to hear you've had a better few days - that's what we like to hear!

Onwards and upwards Bee!

K

X

Bee you've been so kind to me with my posting on little niggles and have only just caught up with your story.

Perniscious little (very rude word). Glad you have the new chemo to start and that steroids have offered a boost, but don't envy you the energy it takes to adjust to such a big fork in the road. Well done for not letting your head drag you into the dark corners, but don't hold back with us if you have nights (it's mainly nights isn't it) when you can't slam that door and get wobbly.

Thinking of you both and hoping the treatment goes smoothly without giving either of you too hard a time. And sod the bank manager! Whatever feels good and puts a smile on either/both of your faces - go for it!!!

Sarah

XXX

Hi Bee.

Hurrah!! So glad Chris hes perked up a bit. Long may that continue!!

Nikki - glad to hear your hubby has too.

Don't worry about the picc line (if you were). Easy and painless to put in (and even easier to take out). We bought a picc line protector (Dry Pro) so Jonathan could swim. I used to flush out the picc line myself (after a lesson from the district nurse) tho being a health visitor you probably know how to do this anyway?

Your regime uses 2 of the 3 drugs used in folfironox so I imagine that Chris might have some similar side effects to what Jonathan and other have had? It was the tingling from the Oxalyplatin that Jonathan still complains about, although that is now subsiding. Make sure Chris wraps up warm. Jonathan (this is not a joke) used to wear one glove for his extra cold guiness in the pub after he'd had an infusion (just as well this forum says it isn't intended to constitute medical advice). I can post a photograph as evidence! It reminded me of a scene from "Men behaving badly" and the lager mit.

Onwards and upwards Bee!!

Cathy xxx

Hi,

Had been reading about the cold sensitivity and also warned by docs last week, need to get organised with layers and gloves !

With my health visitor head on I wouldn't look after picc lines but in my life before HV I had lots of practice, never thought I would be in this position though!!

Bee xx

Hi everyone,

So after a couple of weeks of feeling generally crap, we were all set for treatment last week, picc line in and ready to go. But now delayed as urgent MRI confirmed biliary stent blocked. So new stent tomorrow and hopefully chemo as soon as possible. In a way we were both quite pleased it was blocked as it explains why he had been feeling so rough and also although not a pleasant procedure once the stent is in hopefully things should improve. That's our theory anyway!

Take care everyone as always and hope you all have all battoned down the hatches for the joyous storm coming our way tonight!!

Bee xx

Hi Bee

Hope all goes well with the stent. That would definitely make sense and make Chris feel rough. Fingers Xd it sorts him out soon.

We've come away for the weekend. Setting off back home a bit later. Could be an exciting car journey...

Xx

Hi Bee,

Paul had a blocked stent at one point and felt dreadful, much better once it was changed, so get that sorted and you will be on your way again.

Having not worked on the wards for 16 years I had some many skill I really thought had gone for good, but it all comes flooding back, doesn't it? Sometimes its tricky when you don't know if you are the nurse or the wife! Paul had to have his picc out last week, as he had an infection and came home with a cannula for intravenous antibiotics. It was so stressful as the dressing came loose and he wouldn't let me sort it out and the cannula ended coming out. So , my worse nightmare (terrified of bugs), we had to go to A and E for a new one. Definitely felt like the wife then though as I screamed like a banshee at him, not something I would do as a nurse!

Paul has just had his 6th folforinox and had the cold sensitivity for the first time, thought we had got away without that. Apart from tiredness though, he seems to tolerate it pretty well.

Take care,

Nikki

Hi,

So chemo delayed again! Stent change did not go as planned this week, old one out easily via ERCP, unable to get new one in. So now PTC tomorrow and either a drain or hopefully a metal stent. One very fed up husband as stuck in hospital, tired and sore. Hoping to get pain under control as really suffering with lower abdo pain, another scan today to see if cause can be identified, so many questions and I just wish I knew the answers!!

Hope tomorrow is better !

Bee x

Aww Bee,

Another leftfield challenge for you both. I'm so sorry. I hope they find the cause of abdo pain and it's simple to resolve and that 2nd attempt to get that stent in works. How damn frustrating for you both. Always seems like craters rather than bumps in the road, when the road it's self is mostly a steep uphill slog.

Thinking of you m'dear and hoping things smooth out later today.

Sarah

XXX

Hi Bee

I do feel for you sooooooo much. How bl**dy frustrating.

Fingers crossed things go more smoothly now. I'll be looking out for your next post and hoping for good news.

Lots of virtual hugs

Cathy xxxx

What a nightmare for you Bee. Before Paul's surgery it took them 4 goes to get a stent in, but they got there in the end when they did a PTC. Really hope they get the pain sorted out and you can get him home asap.

Nikki

Hi Bee

I really hope the scan throws up something positive. Let us know.

I just thought I'd just post this aswell.. maybe nothing but I remember you saying that Chris had constipation at times and pain and Jonathan has also been suffering for a few weeks with ongoing constipation and lower abdominal pain. It also affects his weeing (on occassion he struggles to do either). GP is flummoxed so we saw the Oncologist on Monday. She did an examination inc of his prostate and found it enlarged. To the extent she she believes that this is the culprit. So he has just had some more blood tests and is to have an ultrasound scan (his last CT scan done last month showed nothing on the prostate). We go back to the Oncologist shortly to discuss the results with everything crossed that it is all unrelated to the disease and can be reoslved easily. It's given Jonathan a huge boost anyway.

I hope the source of Chris's pain can be resolved easily.

Cathy xx