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

Post Whippple and Pancreatectomy Pain

Postby nikkis » Fri Jul 26, 2013 4:24 pm

Hi,
I have found it really useful reading all your post, and have had great advice from the nurses and felt it was time to post something myself. My wonderful husband Paul is 49, and was diagnosed with pancreatic cancer in June, he has recently undergone a whipple, as a result of this his bowel perforated and 2 weeks later he went back to theatre. This time they also removed his pancreas in an attempt to get rid of the last of his tumour. Unfortunately he still has a small piece of the tumour left they couldn't get, but his oncologist is still very positive about his outlook. He is starting chemo in 2 weeks and will also need radiotherapy.

He is now 6 weeks post 2nd op, and still in a great deal of pain, after eating but this can last all day. He was readmitted for tests this week to see if there were any leaks, but it was all fine. He was being sick but this is less frequent, but last night he was in agony, which seemed to be windy pain. He is taking a whole host of anti acids and painkillers but we are not sure that anything is working. Some days are good, others like yesterday horrendous. I just feel that if we could see an end in site to the pain we could start moving forward. Is this all normal after 6 weeks?

As others have said I really miss our old wonderful life. At the moment we are just wishing the days away. We have two girls aged 13 and 15 and they are coping amazingly well, and Paul is very positive, but I am really struggling.

Nikki

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Post Whippple and Pancreatectomy Pain

Postby Sones » Fri Jul 26, 2013 5:35 pm

Hi Nikki

I'm really sorry to hear about your husbands diagnosis and aprechiate how difficult this is for you all.
I'm 55 and had my whipple two years ago. It's major surgery and does take a long time to recover and your husband has had a double whammy with the additional surgery. Everyone is different so no one can say exactly how long it takes to recover but I did suffer with nausea and pain in my stomach for many weeks after surgery and took prescribed pain meds.
The specialist nurses on this site will be able to answer any questions and give you the correct advice but I do know the Macmillan nurses are excellent in making sure we don't suffer pain when we don't have to so it may be worth making contact with them.
I do hope Paul starts to feel better soon.
Keep strong.
Sue.x

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

Re: Post Whippple and Pancreatectomy Pain

Postby nikkis » Fri Jul 26, 2013 6:06 pm

Thanks Sue,
The District Nurse has contacted the Macmillan Nurses a couple of times but we haven't heard from them. I suspect this is because in our area they only have the resources to see terminal patients. But it has been disappointing as I would really like the support, as I know this is going to be a very long journey whatever happens.

Nikki

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Post Whippple and Pancreatectomy Pain

Postby Carole McGregor » Fri Jul 26, 2013 9:42 pm

Hi Nikki

My husband's Whipple, a couple of months ago , wasn't successful but he still had bile duct and duodenum by pass (described by the nurses as one cut short of a Whipple). He too has suffered really bad pain since then, mainly digestion related. He has terrible wind pains but just can't release it ! He has been advised to take small, daily dose of laxative and also metaclopermide (sp ?) which is the anti sickness med he took while on chemo. Apparently, this helps settle the stomach while the digestive process kicks in again. I've given up making meals and instead just give small snacks throughout the day - tomato soup and ice cream are current favourites ! Only been doing this for a week or so but so far, it seems to have helped.

Really hope you find something that works for your husband. Just to have a few 'normal' days now and again makes all the difference. A silent cry in the shower works for me too !

Regards
Carole

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

Re: Post Whippple and Pancreatectomy Pain

Postby Bee » Fri Jul 26, 2013 11:01 pm

Hi Nikki, welcome to the forum.
I have no experience of whipples as my husbands PC was deemed inoperable at diagnosis, all I can suggest is that you use the specialist nurses and stamp your feet for some support locally. What I do share with you is being a wife and mum trying to hold it all together, it is so very difficult. My kids too have amazed me with their resilience ! Personally I find this forum invaluable, and is just take things one day at a time and live for the moment.
Hope you can make some progress, thinking of you,
Bee x

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

Re: Post Whippple and Pancreatectomy Pain

Postby nikkis » Sun Jul 28, 2013 1:51 pm

Thank-you all for your replies. I keep telling myself it is early days following 2 of the biggest operations you can have, but he was so fit before the operations, running most days, it is so hard seeing him so thin and in such pain.

We really hadn't expected the tumour to be malignant as all the biopsies had come back clear, so we had several months delay as our local hospital had told us it was not cancer so we didn't need to see the surgeon. When we did see him he said it was best to remove the mass as all tumours should be treated as malignant unless proved to be something else. The surgeon wasn't surprised that it was malignant, but we were. Now determined to keep him out of our local hospital as I have no faith in them, unsurprisingly!

He does have good days, and we think we have turned the corner, but the next day it is back to where we were. Really not sure that he is any better than he was 6 weeks ago when he first had the second op. He is less sick, so guess that is an improvement. He also went back into hospital last week and the dietician put him on some high energy drinks, so he seems to have stopped losing weight. We are real foodies, so I worry that we will never enjoy a meal together again.

We should be in Cuba now on holiday. Seeing that many of you have had holidays gives me hope that we might have good times as a family in the future, but keeping positive is so hard,

Nikki

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Post Whippple and Pancreatectomy Pain

Postby Sueba » Sun Jul 28, 2013 8:29 pm

Hi Nikki
My husband had his whipples op in February and started picking up round about the 6 to 8 week mark (without having another op on top like your husband)10 weeks post op he had 2 cycles of Folfirinox which really knocked him out,he was being sick most days,most of his hair dropped out and he looked terrible!
Once the chemo was out of his system he came on in leaps and bounds,now 5 months post op he looks amazing (partly due to being out in the sun)he's started going back to the gym,he can walk as far as he could previously (he was a very fit 42 year old when he was diagnosed)Hes back to eating,we regularly eat out again (complete with his "man bag"which h carries his insulin as diabetic due to removal of his pancreas and his creon)Next Sunday we are going on a week long family holiday to Greece!!
If anyone had told me we would be doing all this when he was 6 weeks post op I old never have believed it!!!
We are living in the here and now,we don't know what the future holds but we intend to enjoy ourselves for now!
I remember when he first stopped being sick etc small steps but on the right road
Sending much love
Sue
Xxxx

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

Re: Post Whippple and Pancreatectomy Pain

Postby Cathy » Mon Jul 29, 2013 10:55 am

Hi Nikki

Welcome to the forum although I'm sorry, I can't give you any post op advice as, like Bee's husband, my partner was deemed inopperable. The Sue's and Carole have very good experience and advice.

You might want to try ringing your local MacMillan's as this is what I did just to find out what support they can provide locally and have a chat with them. Or you could ring or email the nurses on this site as well as they have loads of good advice.

All the very best to you and to Paul. What a shame to miss Cuba but fingers crossed you manage to arrange another holiday soon when Paul is feeling better.

Cathy x

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

Re: Post Whippple and Pancreatectomy Pain

Postby nikkis » Wed Jul 31, 2013 6:40 pm

Thank-you all, following your advice have rung Macmillian and they gave me a number for the local service and it turns out we could have self referred in the first place and someone is ringing tomorrow to arrange an appointment, so that's great.
Will take Sue's advice and get Paul a "man-bag" as everytime we go anywhere for an appointment my handbag is full of his medication! Great to hear you are having a holiday Sue. I have been saying to our girls that our holidays should be to Greece in future as they don't serve their food very hot and ours is always lukewarm now. This is because it is going cold whilst we wait for Paul to check his BM, give his insulin and take his Creon (he has always struggled to take tablets). So if it is the same in your house you should be ok!

Nikki

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

Re: Post Whippple and Pancreatectomy Pain

Postby Cathy » Thu Aug 01, 2013 1:01 pm

Hi Nikki

Great re MacMillans.

We were in Greece last month (seems an age away now back at work) and it was WONDERFUL!

My partner has diabetes now aswell. He's getting to grips with the palaver of it all. We took a letter from his doctor itemising all his drugs and, in particular, explaining that he had to carry syringes in his "man-bag" on board. We didn't want to lose all his medication if his suitcase went AWOL somwhere. In the end there wasn't an issue at all in either direction with all his drugs.

Hope your appointment goes well.

Cathy x

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

Re: Post Whippple and Pancreatectomy Pain

Postby nikkis » Thu Aug 01, 2013 1:27 pm

We went for a diabetic appointment yesterday and the consultant and nurse were amazed at how well we are managing his diabetes. That really is the easy bit though isn't it!

Nikki

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

Re: Post Whippple and Pancreatectomy Pain

Postby nikkis » Sat Oct 05, 2013 12:07 pm

Dear All,
Have been posting on other peoples threads recently but felt it might be helpful for me to get down where we are up to. Also hoping that others who have had similar experiences will find it useful.

My husband Paul, and a Whipples and then a Pancreatectomy back in May and hasn't been great since (understatement there!). He has actually spent most of the summer in hospital for pain, abdominal distension, weight loss, vomiting, diarrhoea and any combination of those. He has started chemo at the end of August (folfirinox). There was a small amount of tumour that the surgeon couldn't remove and he had some in his lymph glands. They did another scan after chemo 3, and although there was no growth in the tumour there wasn't any shrinkage either. So carrying on with the chemo. They have also sent a bit of the tumour to the States for something called "tumour grafting", where they grow it and then test the chemo. on it and find out which is the best for his tumour. We have to wait for the tumour to grow more first though, and we have to pay for this ourselves, so hoping the cancer will start responding to the existing chemo and we wont need it, but the surgeon told us this has produced very successful results for others.

Paul has just come out of hospital after 4 weeks on Thursday. He went in having lost a stone over a weekend, very dehydrated and weak. While he was there his bowel became obstructed and it was pretty touch and go. We thought this was still as a result of the surgery, but the oncologist felt that the cancer was making his bowel "sticky" and this has caused the problem. The only way to sort it was for Paul to have liquids only until it settled down, and we are now introducing solid food again slowly.

We have been very lucky as they have arranged for him to have intravenous feeding at home, as absorption is an on going problem. Otherwise he would still be in hospital. Nurses come in and set this up at night and take it down in the morning. Just hoping this will be enough to keep him home, so we can have some sort of family life. He has also come home on a morphine infusion and the district nurses come in to do this.

Can't really believe all this has happened to us, and part of me still hopes it is a really bad dream. Nobody's journey is the same with this horrible disease. Paul said to his consultant the other day "glad I haven't got bowel cancer, that would be really awful". Needless to say no one knew what to say to that! I think we all agree that pancreatic cancer is pretty much as bad as it gets, but he remains very positive. I am very scared and its an achievement for me if I go a whole day without breaking down.

So that's the last few month's in a nutshell. Just hoping that the IV feeding will give us some quality of life again. It's so helpful to hear of other's experiences on the forum good and bad, as it does take away the sense of isolation. Paul doesn't read it but likes me to tell him what is happening with other people.

Hope you all have a good weekend, and cross your fingers for us that we can keep out of hospital!

Nikki

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

Re: Post Whippple and Pancreatectomy Pain

Postby J_T » Sat Oct 05, 2013 12:59 pm

Good grief nikkis sounds like Paul (and you!) have had a pretty awful time of it.

Can't offer anything more than a virtual hug really but hope something comes of the American 'graft'. Sounds like a good idea, are you listening NHS?

Very best wishes

Julia x

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

Re: Post Whippple and Pancreatectomy Pain

Postby Cathy » Sat Oct 05, 2013 4:34 pm

Hi Nikki

Sorry to hear Paul has had such a torid time since his diagnosis but great that he can come home. Hopefully now it will be onwards and upwards for him. :)

Interested to hear about the US tests. That sounds such a good idea - find out if something might work without weeks of unnecessary treatment. Hope it all goes ok. Jonathan is the same as Paul, doesn't read the forum but always inquiring after people and likes me to keep him updated.

Cathy xx

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

Re: Post Whippple and Pancreatectomy Pain

Postby nikkis » Sat Oct 05, 2013 5:33 pm

Thanks Cathy and Julia,
Am feeling that hug. If anyone want to find out more about tumour grafting it's worth googling. The company who has Paul's bit of tumour is Champion Oncology, but I am sure that other grafters are available!
Nikki