A forum for family, friends and carers of pancreatic cancer patients

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

Re: Taking the plunge!

Postby karen17 » Sun Jun 09, 2013 4:09 pm

Hi Bee,
Bob and I had a week in Spain a short while ago and did not bother taking insurance out. We had an EHIC card which we knew would cover minor things and felt happy enough that if needed we could get frequent flights home. We will be returning again fingers x in July for 2 weeks and this time should be easier as no PICC line to worry about. Not that he worried about it anyway, just me and it was fine. Did have to laugh when we got back and went more or less straight away for next chemo session as they took off tubigrip and dressing and everything got covered in sand! Just remember to drink more fluids than usual and that Chris can get sun lotion on prescription.
Karen xx

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

Re: Taking the plunge!

Postby Bee » Mon Jun 10, 2013 8:51 pm

Hi everyone,
Thanks for your replies, it seems here are no easy answers, your reasoning is the same as Chris, take the chance and fingers crossed. I am more cautious, want to be able to relax but he is talking me round. For some reason I am worrying about a blocked stent for no reason other then reading they have a lifespan and he has had his since October. Oh dear, sound like a head case again!!
I have seen the post on insurance from Dianne but couldn't work out how to reply maybe I can't. It all seems bizarre as the company mentioned there gave us the most expensive quote, nearly 3000 with no cancellation cover. This is because its inoperable, that's the majority of pc patients out then, infuriating !! So I think we will wait til nearer he time. We haven't booked yet anyway, will wait now, determined to go, probably Spain or Italy, Italy is favourite, possibly something to do with the Italian White!! Really as long as we get somewhere it will be fine, as I'm sure is the case for all of you.
Thanks again everyone
bee 8)

Jwilson
Posts: 100
Joined: Sun Jun 09, 2013 9:52 am

Re: Our story

Postby Jwilson » Mon Jun 10, 2013 10:09 pm

Hi, my husband is 61. Fit, not overweight, working full time etc. In Late December he felt his mouth was dry and that he was running to the loo a little, nothing much. Feb 11 th he had blood sugars tested ....24.9 so alarm bells rang. He was then assumed to have type 2 diabetes to be treated with tablets, that didn't work so he was put on insulin. He never really stabilised to be honest and when he had a scan in April, followed by a scope they said he had PC but were hopeful of doing a Whipple. Sadly once they got in there this was not possible. The op was May 15. Ok the biggest problem he has is severe and I mean excruciating abdominal pain. He had a bypass procedure done to give him some quality of life and from a surgical point of view he is recovering brilliantly. However, every few days he has this pain which he describes as being like a clamp around his middle. He walks the floors all night, sometimes he is very sick so all morphine pain relief is lost. He has bus open which he can take if needed. I wonder should he take more pain relief before these situations arise. I have tried hard to make food that can be digested easily but nothing seems to make a difference to this dreadful pain. This is Monday evening and he is bad, Saturday evening and all Saturday night was terrible. What to do?
June

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

Re: Taking the plunge!

Postby Bee » Mon Jun 10, 2013 10:44 pm

hi June,
Sorry to hear you are having such a difficult time, it's such an awful disease and turns our lives upside down. I hope you are getting support from your oncology team and perhaps Macmillan nurses. I am sure you will get lots of support from this site and forum, I wish I had posted earlier but have been reading for months!! I know you can also the specialist nurses here as well, I am sure they will be able to help, I have read lots of positives about the team.
Thinking of you and hoping things settle tonight
bee

jacqui
Posts: 10
Joined: Mon Jul 09, 2012 10:41 am

Re: Our story

Postby jacqui » Mon Jun 10, 2013 11:31 pm

Jwilson wrote :
> Hi, my husband is 61. Fit, not overweight, working full time etc. In Late
> December he felt his mouth was dry and that he was running to the loo a
> little, nothing much. Feb 11 th he had blood sugars tested ....24.9 so
> alarm bells rang. He was then assumed to have type 2 diabetes to be
> treated with tablets, that didn't work so he was put on insulin. He never
> really stabilised to be honest and when he had a scan in April, followed by
> a scope they said he had PC but were hopeful of doing a Whipple. Sadly
> once they got in there this was not possible. The op was May 15. Ok the
> biggest problem he has is severe and I mean excruciating abdominal pain.
> He had a bypass procedure done to give him some quality of life and from a
> surgical point of view he is recovering brilliantly. However, every few
> days he has this pain which he describes as being like a clamp around his
> middle. He walks the floors all night, sometimes he is very sick so all
> morphine pain relief is lost. He has bus open which he can take if needed.
> I wonder should he take more pain relief before these situations arise. I
> have tried hard to make food that can be digested easily but nothing seems
> to make a difference to this dreadful pain. This is Monday evening and he
> is bad, Saturday evening and all Saturday night was terrible. What to do?
> June
Hi June, so sorry to hear about your hubby and the pain he is going through. It is heartbreaking to watch knowing you can't help. I'm not sure if it is any use but my mum, diagnosed last July, was experiencing very similar agonising pain but was given a nerve block which involved injecting the ball of nerves behind pancreas with basically alcohol (as far as I could make out!) and since then (last aug) she has been much, much better. She still takes her slow release morphine twice daily but has lead an active life since relatively pain free and eats like a horse!. Unfortunately this awful disease has started to fight back slowly but she still has some fight left! It may be worth mentioning to your specialist. I wonder has anyone else had this procedure?
Best of luck though June and welcome to this wonderful site xx

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

Re: Taking the plunge!

Postby karen17 » Tue Jun 11, 2013 8:04 am

Hi June,
So sorry to hear that your husband has such a lot of pain. That must be just terrible obviously for him but also you having to see him and pain and no doubt feeling powerless to help him.
My suggestions would be to either get a referral or self refer to the Macmillan nurses as they are brilliant with pain relief and also to contact your oncologist regarding the nerve block. That was something that was mentioned to us when first diagnosed that if Bob ever had severe pain they would be able to inject into the nerves behind the pancreas to block the pain. It sounded really effective.
Take care and keep strong
Karen xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Taking the plunge!

Postby J_T » Tue Jun 11, 2013 9:32 am

Hi June sorry to hear of your husband's diagnosis. My husband is also 61 and his diagnosis was a complete shock to us.

What was the bypass op? Was it the nerve block op that hasn't worked or something else? Karen has given good advice re pain relief. Has your husband been prescribed Creon? We are trying to get it. It helps with the absorption and digestion of food. Certain foods can cause abdominal pain although your husband's sounds quite severe.

The nurses on here can offer you much better and informed advice so do either ring or email, you will find them a tremendous help as pc is their speciality.

Best wishes
Julia x

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

Re: Taking the plunge!

Postby Cathy » Tue Jun 11, 2013 10:02 am

Hi June

Welcome to the forum - everyone in here is really brilliant and you will get a lot of tips and good advice in additon to the support of people in a similar situation to you and your hubby. I do feel for you. It is hard seeing someone you love in so much pain and distress.

I'm sorry to hear your husband is feeling so poorly. You didn't mention if he having chemotherapy as this can help with pain relief if he is due to have treatment. It bought instant pain relief to my partner (Jonathan).

I do hope you both manage to get some relief soon.
Cathy xx

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: Our Story

Postby PCUK Nurse Dianne » Tue Jun 11, 2013 10:20 am

Hi June,

I am sorry to hear your husband's story. I would like to offer you the support from the support line and will email you directly with some potential issues we could discuss.

As you have mentioned the bypass operation and some people have queried this, I thought I would explain. Unfortunately by the time patients do come to the operating table, many will find that the tumour is now inoperable, either because it has involved the blood vessels or due to the fact that it may have spread (metastasised to the liver). In this case, the surgeons may perform a 'bypass operation', which in basic terms means bringing some of the bowel up to join the bottom of the stomach and bypass the tumour. This is done to prevent the further complications of the tumour causing obstruction and the subsequent symptoms. The patients still do need to recover from surgery, not quite as extensive as the Whipple's operation itself, and also the emotional effects of 'not having the surgery expected'. Patients may then go on to have chemotherapy afterwards if and when tolerated.

Hope this is helpful.

Dianne
Support Team

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

Re: Taking the plunge!

Postby Bee » Thu Aug 15, 2013 11:57 pm

Hi, will be off line for a couple of weeks as, dare I say it we are off to the sunshine for a family holiday, so will be out of touch. I hope everyone has a good couple of weeks and look forward to catching up when we come home.
On diagnosis we never thought this would be a possibility and I still can't believe we are going, it will be real when I see the sun and sit down with large glass of white stuff!
Will raise my glass to my forum friends, stay as well as possible!!

Bee xxx

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

Re: Taking the plunge!

Postby Slewis7313 » Fri Aug 16, 2013 8:25 am

You see and have a great time!

Steve

Xx

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

Re: Taking the plunge!

Postby Cathy » Fri Aug 16, 2013 10:03 am

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

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Taking the plunge!

Postby J_T » Fri Aug 16, 2013 11:06 am

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

Cheers!

Jx

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

Re: Taking the plunge!

Postby Bee » Sat Aug 31, 2013 9:55 pm

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

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

Re: Taking the plunge!

Postby Cathy » Mon Sep 02, 2013 12:54 pm

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