Advice please for post-Whipple procedure & recovery at home

[susan191052]

My husband was diagnosed with an adenacarcinoma of the pancreatic head on 27/10/16, we have since seen a consultant at our local specialist centre where they will be performing a Whipple procedure on 24/11. It is suggested that he will stay in hospital for 7-8days post surgery, and then come home. I have some queries about equipment we may need at home in the early days. Is a wheelchair or frame advisable. Should I get a raised seat for the toilet?, Any help and suggestions appreciated.

[sandraW]

Hi Susan,

Welcome to the forum, the place no one wants to be but where you will get lots of help and support.

My husband had a similar operation (his cancer was in the tail of his pancreas though so the operation was not quite as serious)

When he came home he was very tired, and took things quietly, built his food intake up slowly and within 4 weeks he was well enough to potter in the garden for half an hour or so.

You don't say how old your husband is or if he has any underlying health problems, to be honest Trevor didn't need any extra equipment, we do have a toilet downstairs so that made things a little easier, he got dressed, showered, without help after the first couple of days, then just continued to improve.

Please do insure that the hospital/GP prescribe Creon for him, as sometimes they don't prescribe it and weight loss is inevitable after the surgery.

Why don't you ring our wonderful nurses their contact number is Freephone 0808 801 0707, they are so approachable and very knowledgeable.

Please let us know how you are both getting on, take care sandrax xx

[sandraW]

Hi again Susan,

I have just seen your story on the experience of diagnosis thread, hopefully your husband will be one of the lucky ones get everything removed by surgery.

What a horrible way to find out that your husband had the disease but it's not uncommon, lucky for you that you had family who understood, It also sounds as though you have very supportive GP ours were not so good. take care sandrax xx

[Veema]

My husband also had a whipples and recovered really well...we didn't have any special equipment, it's better for the recovery for them to potter about and get moving as much as possible...I will stress though it is finally important that he does nothing strenuous at all for at least 6 weeks...my husband ended up with a huge hernia which troubled him greatly, especially in his last few months.

Good luck...I will pop over and read the other thread now.

Vx

[WifeampMum]

Hi Susan

Likewise for my hubby who recovered pretty quickly from his Whipple. As V says, moving around/pottering is important for recovery and the hospital will probably encourage this. Incisional hernias do seem to be very common and I won't let my hubby lift or carry anything heavier than a light shopping bag...and he is 9 months on from his op.

It is a big scary operation, but take heart from the fact that it's a lifeline, and that within the PC community he is considered one of the lucky ones. Only 10-20% of people diagnosed with this cancer are operable.

Wishing you both the very best for the 24th and beyond. Do let us know how things are going. You will find this a very supportive and caring place.

W&M xx

[susan191052]

Thank you everybody for your help and advice, it is very much appreciated. We live in a very small Wiltshire village and it seems that everybody is looking out for us. We attended a late Harvest supper in the village hall on Saturday and everybody spoke to James with genuine concern. (over 40 guests) and they had made him a special fat and carb free meal (those cooking are retired nurses). We arent church goers and James is on the prayer list. We are seeing the best of people and consider ourselves to be a part of this very caring community

[jay]

Hi Susan,

My husband was 48 when he had his whipples , it was also in the head of the pancreas. He recovered very quickly from the op, we had no special equipment at home. Thinking of you both.

Jayne x

[Dandygal76]

Dear Susan,

My dad was being geared up for the operation before they noticed the spread. I understand what a frightening time it is but hold on to the fact it is also a hopeful time. I wish you and your family that best through this ordeal and although I cannot advise post operation just know we are here all the time for anything you want to ask.

You will all find strength you never knew you had.

XX

[susan191052]

25/11/2016

James had his Whipple surgery on Thursday at xx, Until 11am that day we weren't sure it would happen because there was not then an available bed in Surgical HDU but one did become available so at about 2pm his surgery was started. At 9.45 I called to find he was still in recovery. I called HDU at 11pm and he had just arrived there, the staff member asked how he was and he was fine but his message to me was "Dont drink too much gin and remember to feed the dogs"! As he works away I always feed the dogs feed the dogs, as for the gin I was not drinking as I had to drive the following morning to visit him -35 miles each way. My daughter and I travelled together to visit him along with our 4 month old grandaughter and I went to see him first and he was complaining that Physio had messed with the numerous tubes and drains attached to him and nothing was in the right place (grumpy old git!).... He was very sleepy which I had expected but he had convinced himself he had overdosed on self administered painkiller (morphine?) even though that is not possible. I spent just 10s of minutes with him and then our daughter went to see him whilst I was on Grandma duty. Sometime later we learn that he has been moved from SHDU as they needed 4 beds and only 2 were available (Sister said he was recovering well.) The surgeon was very pleased with the op and all went according to plan with one exception: the tumour was touching a vein and they had to peel it off but by all account his surgeon xx is highly skilled to perform such a delicate operation. James has been very positive throughout and feels lucky that his cancer was found so early and could be removed. hopefully a good end to an interesting year. We have also discovered just how amazing our friends and neighbours in our small S Wiltshire village are. What a year 2016 has been; we met two new granddaughters one in Los Angeles and one in Salisbury Uk, we celebrated our 40th wedding aniversary with a party on the day in July and a holiday in Mauritius in September and a meeting with Mr Whipple in November. As for the surgeon; we won the postcode lottery there! We appreciate we are not yet out of the woods but we are glass half full people, there is no point in being anything else - positivity helps!

We are off to meet with the surgeon today for post operative feed back and to find out more details of the carcinoma , if the histology is back. Recovery at home has been interesting and we have a busy week so far, probably too busy. There are some things that cannot be avoided such as visits to our local surgery in another village to have dressings checked, trips to our supportive GP to sort meds (J was discharged late on Saturday after the hospital pharmacy had closed); this took a couple of trips as his anaesthetic addled brain failed to ask for all required items on the first visit!

Edited December 7, 2016 by susan191052

[susan191052]

sandraW wrote:

> Hi again Susan,

> I have just seen your story on the experience of diagnosis thread,

> hopefully your husband will be one of the lucky ones get everything removed

> by surgery.

> What a horrible way to find out that your husband had the disease but it's

> not uncommon, lucky for you that you had family who understood, It also

> sounds as though you have very supportive GP ours were not so good. take

> care sandrax xx

Even better our recently retired GP lives next door and is very supportive! Ive put an update on here.

[WifeampMum]

Excellent news Susan, I hope James has an event-free recovery from his surgery and that you get him home very soon.

W&M xx

[Dandygal76]

We love good news stories here Susan. I wish your husband a speedy recovery and I hope PC never crosses your path again. You have been very lucky with both your GP and your surgeon. What a year you have had... onto 2017! I have just booked 2 lanes for bowling for the whole news years eve night just before I read your update! Sending so many positive cyber vibes your way right now! x

[Veema]

Lots of positive vibes that they've got it all and for a nice smooth recovery.

I think that surgery time is pretty speedy...when Nige had his, he went down at 8.30am and wasn't back in recovery until almost 10pm!

Vx

[susan191052]

Veema wrote:

> Lots of positive vibes that they've got it all and for a nice smooth

> recovery.

>

> I think that surgery time is pretty speedy...when Nige had his, he went

> down at 8.30am and wasn't back in recovery until almost 10pm!

>

> Vx

Mr H (name removed - moderator) expected it to take less time and said it was a difficult but successful surgery (James is not skinny (yet)) They only kept him in Surgical HDU less than 24 hours partly because they needed the bed and partly because he was ok and well behaved. james hadnt been in hospital before his ERCP and ha been horrified at the way many people treat the nursing staff who always keep calm and collected.

[Ruthus]

I'm so pleased to hear your husbands surgery was a success. That is brilliant news they were able to remove the tumour. I had the whipple at the end of May. The first week was very difficult in terms of moving but it gradually got easier and easier and I am now really active again. I wish you all the best.

Ruth x

[sandraW]

Hi Susan, pleased to hear James is doing so well, its amazing how quickly they recover isn't it, I hope his lazy stomach soon get its self into gear, and he continues to improve, take care love sandrax xx