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Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Taking the plunge!

Postby Bee » Fri Oct 18, 2013 6:59 pm

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

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Taking the plunge!

Postby Cathy » Sat Oct 19, 2013 12:59 am

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

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Taking the plunge!

Postby Slewis7313 » Sat Oct 19, 2013 5:37 am

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

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Taking the plunge!

Postby Cathy » Sun Oct 20, 2013 11:21 am

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Taking the plunge!

Postby nikkis » Sun Oct 20, 2013 2:26 pm

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

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Taking the plunge!

Postby karen17 » Sun Oct 20, 2013 5:39 pm

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

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Taking the plunge!

Postby EmmaR » Sun Oct 20, 2013 8:09 pm

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

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Taking the plunge!

Postby Bee » Sun Oct 20, 2013 8:31 pm

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

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Taking the plunge!

Postby KATB » Sun Oct 20, 2013 9:38 pm

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

Onwards and upwards Bee!

K
X

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Taking the plunge!

Postby InfoForMum » Sun Oct 20, 2013 11:20 pm

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

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Taking the plunge!

Postby Cathy » Mon Oct 21, 2013 1:38 pm

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
Last edited by Cathy on Mon Oct 21, 2013 10:32 pm, edited 1 time in total.

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Taking the plunge!

Postby Bee » Mon Oct 21, 2013 10:28 pm

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

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Taking the plunge!

Postby Bee » Sun Oct 27, 2013 7:37 am

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

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Taking the plunge!

Postby Cathy » Sun Oct 27, 2013 8:10 am

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Taking the plunge!

Postby nikkis » Sun Oct 27, 2013 12:54 pm

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