2 weeks till my whipples

[Guest]

Hi there,

I am about to go into hospital to have the whipples operation . wondered if there is anyone reading this who can be of some support .

Am pretty healthy at the moment, so i feel a bit of a fraud, but this is mainly due to having two stents in my bile duct keeping it all open.I have a 2cm tumour in my pancratic duct, which has been causing me obstructive jaundice on and off over the last two years . My surgeon thinks it is benign, as it is slow growing(i first had a scan on it in June 2005 ) whilst living in Australia.

My worst period was Dec/Jan just gone, my bilarubin level went up to 580 for a couple of weeks. The word itchy does not come close to discribing it!!!

Anyway, look forward to hearing from you.

Kindest regards

Simon

[Jan]

Hi Simon

I have tried to reply but I am unsure if it worked as I am new at some of this.

I had my whipples operation 9 years ago. The begin tumor was found after I was very jaundiced. Initially I was pregnant so that was a red herring to dianosis. I have been fortunate in that I have kept all my stomach and do not have a problem with most foods. It is luck dip with outcomes I'm afraid.

Your Australian connection is interesting. Yes I am in Australia and I have only just recently come across this site. A support group was formed just before my operation and we are known as the Whipples Warriors. Catchy isn't it. Our group is small and recently there has been a focus on pancreatic cancer here so who knows.

Good luck with your operation and I wish you and your supporters well.

Jan Mumford

Coordinator Whipples Warriors

[Guest]

Hi Simon,

After being diagnosed with Pancreatic cancer in February 2006 I underwent 24 weeks of chemotherapy followed by a 5-week course of radiotherapy with chemotherapy and had a Whipples operation in December. I went into hospital feeling quite healthy as I hadn't suffered any jaundice symptoms at all.

Because of the radiotherapy treatment I had a higher risk of complications with the operation and stayed in hospital for 3 weeks. Surgery was successful and the tumour removed. I had 50% of my pancreas removed and restructing work which has left me with half my stomach. I had difficulty with eating at first and lost my apetite but over the last few weeks I have been much better and regained my apetite although eating smaller portions. It is now 3 months since the operation, I had the bile tube removed a month ago and I am feeling and looking well.

Good luck with the operation, wishing you a speedy recovery.

Sue

[Jess_116]

Hi Simon,

Just reading your post, you're probably in hospital already, or are at least in preparation. Though, Im writing anyway. Mostly for you, partly for myself.

Im a 20 female from Melbourne that underwent whipples in dec '05 after finding a tumour in the head of my pancreas. This tumour was approximatley the size of a nectarine and was discovered after months of periodic pancreatic pain (now revealed as bouts of chronic pancreatitis).

I was told it was 'most likely to be benign', so that kept me sane for a while, and surprisingly, I was cool, calm and collected and was prepared to continue my life as normal and sit my uni exams.

The surgery went well, only leaving me with the inability to secrete pancreatic enzymes (I now take enzymes in tablet form with every meal and snack), no dramas, though recovery felt like ages, in actual fact, I was pretty right in months.

Being one of the youngest candidates for the surgery (that I have been told), I have felt incredibly strong for going through it so well, and coming out on the better side.

Its only now, when I think about things that I get down and out. Mostly because, I am scared that i will get sick again.

Its left me with a bit of an anxiety problem.

The moral of my story,

dont let it get you down,

we are unique Simon. All you have to do is just think,

"I am an incredible person to have gone though this"

I tell myself that every day, and it seems to be working.

goodluck, and keep us posted on your happenings...

take care,

Jess.

[Guest]

Well, after 3 weeks I am home. Feeling very tired and getting used to the new eating regieme. You are hunrgy but can only eat a small amount. The big plus is no more hospital food .

Well, the op did not go quite as planned. On opening me up, my surgeon discover my pancreas was in his words "a war zone" which was a real surprise to every one, as i have never drunk much, and was never in any pain through both bouts of obstructive juandice. The op took 9 hours instead of 6, and was pretty tricky . He did save a small section of pancreas which is now attached to my stomach.

Ok, so spend a day in intensive care , then back to a normal ward and everything going well until day 5, when i started feeling reall tired. By next morning my blood pressure had droped massively, and my belly was totally swollen. Was rushed down to have a ct scan where they found i had an arterial bleed. Next was an angiegram to fix it. The most amazingly cool radiologist basically passed a tube up my artery from my groin and droped a stent in the whole blocking it up. Was pretty uncomfortable, and would not recommend it to anyone, but it did the trick. Next day a drain was passed into my side and located on the mass of blood nd fluid . The pressure release was instantaneous. Spent the next 5 days in instensive care getting very stoned on morphine. Does not agree with me. At one point I was convinced i was in a movie and all the drs and nurses were actors. Very confusing. So after all that got home on Monday and just trying to get a routine together. Lots of small meals and loads of sleep. At the moment 1 hour of activity(eg eating, walking around the garden once, or reading ) = 1 hour of sleep.

Anyway, the other news ,which was not so good , was the tumor turned out to be malignant much to everyones suprise. So i have chemo ahead. find out more about that next week.

That's all for now

Simon

[rosieh]

Hi Simon

I've been reading your story and just wanted to say that I hope you have a good recovery from your op.

I'm sorry to hear that the tumour was malignant and I wish you well for the chemotherapy and any other treatment you have.

Take care

Jan

[Guest]

thanks for all the support guys. i lasted 3 days at home, got an infection, and have been back in hospital since then . hopefully go hometoday, but have to wait on my blood tsts. they are being very careful, asi have a hematoma in my belly from my big bleed.

see ya

simon

[Julie]

Hi Simon, my heart goes out to you. I had similar stuff happen to me too, altho they did happen while i was in hospital, hence the reason for me being in the hospital 11 weeks.........Keep strong and positive, there is a light at the end of the tunnel even tho some days i was quite depressed over all that was going on in my body..............best wishes julie

[Guest]

hi julie, thanks for the kind words. it is amazing being able to get support from people who really understand via this website. well, am still here in hospital, maybe friday now. have ct scan tomorrow. i think i get frequent flyer points on that machine. my surgeon, mr shankar , joked that i wasglowing i have had so many. i can not fault the care i have had here at uch. mr shankar and his team have been amazing. i think he is the most inspirational person i have ever met.anyway, heres hoping for friday. sneaked out this afternoon and went to the movies on tottenham court road. felt like a school kid playing truant.

see ya

simon

[Guest]

Sorry that you have had such a rough time since your operation Simon and hope you will be able to leave hospital today. I was in the UCH also and the care was wonderful - the food not so good! I was very fortunate to have Mr Shankar as my surgeon as he was confident that he could remove my tumour which I had been told was inoperable 6 months earlier. After chemo and radiotherapy at the UCH the tumour had shrunk away from the vein and artery but was still in a tricky position. Mr Shankar was always enthusiastic which kept me feeling positive and he did successfully remove the tumour. I had a setback 10 days after the op which turned out to be an infection in a stent and had to be treated with antibiotics. That kept me in hospital for about a week longer. I was anxious to get home as I thought my appetite would improve but I couldn't fault the treatment I received which was amazing.

Hope everything goes well on your return home this time.

Sue

[Guest]

hi susan,

thanks for you kind words. i was just reading yo post when arj came to see me. he is giving me weekend leave so home today , but back on monday for a white blood san.

he has been amazing. you get the feeling the your welfare comes before everything with him.

i agree with your comment about the food here. i can not eat it any more, and have to go out to eat. a friend of minee who is a senior radio therapist at addenbrooks came to see me and was amazed how bad the food was here. it is a shame, as i am still losing weight , 15 kg since the op and really need a good diet .

will be writing to the hospital manager wheni leave.

thats all for now.

simon

[Guest]

Well, i am now 10 weeks post whipples , and am doing well. I got out of hospital on week 7 and had two great weeks where i felt better than i have done for years. Was able to get out and see all my friends, and get some time on my bike. I even managed to go windsurfing at a friends windsurf centre. The wind was very light so it was very timid, but it felt amazing to be out there.

Anyway, started chemo last week, have 5 days on, then three weeks off. I felt very tired thurs/fri/sat but feel fine now, just a little delicate.

That's all for now

Simon[/img]

[Guest]

Glad that you are doing so much better now and good luck with the rest of the chemo.

I am coming up for my 6 month scan in a few weeks and feeling a little anxious about that but so far so good.

Sue

[Claire M]

You seem to have had quite a journey already but I just wanted to say glad that you have got through all this and are now on chemo. I wanted to add a few positive vibes by telling you about my 70 year old Mum. She had her whipple in Feb 06 followed by 6 months of Gemcitabine chemo. This time last year my Mum was a shadow of her former self and it broke my heart to see her struggling to keep going when she was so exhausted from the chemo but now 17 months post whipple she is just like her old self again (although very very thin). She has so much energy and is really enjoying life again. She takes enzymes but that is about it. So if the chemo gets you down remember it will also help you get through this. Stay strong and positive. I will be looking out for an update. Claire

[suzette_uk]

Hi Simon

I'm guessing you're either on your way to the the hospital or have just had your Whipples. I had one 3 years ago last month at the age of 33 and have an extra long scar as the cancer had spread to my liver too, 10 1/2 hours in surgery altogether. I know what you mean, I felt great again after the stent was put in and couldn't really comprehend what I was about to go through when I wasn't feeling that bad.

I had a friend that had been through a similar operation, though not for cancer, and he gave me two pieces of advice:

1 Get a chair with a high seat and strong arms that you can get in and out of easily, you won't have any strength in your stomach muscles for a long while

2 Sorry to be crude but this is as he said it to me "be very sure before risking a fart", it can unsettle your digestion for a while.

I was one of the success stories partly because of my age, and was out of hospital in 9 days! I went to stay with my parents for many weeks afterwards and had to use a wheelchair for a couple of months because it was too painful to walk far. My scar popped one end as they took the stitches out so the District nurses came round daily for a while too but it certainly beat staying in hospital.

After a few weeks I started taking Creon to replace the pancreatic enzymes and take it every time I eat according to the amount of fat I'm having, much like a diabetic would with insulin and sugar content.

I only have a tiddly bit of pancreas left but am not diabetic, I have to keep an eye on my blood sugar. I also take Ranitidine morning and night to protect my stomach from excess acid.

I have to be careful with some foods but after the first few weeks I was able to maintain a good body weight (too good!).

I still get very tired but have learned to pace myself and am still able to live an active lifestyle with a few adaptations. I have been rock climbing, hiking, camping, abseiling, jet skiing, horse riding, sailing, on a high ropes course and am off llama trekking this weekend.

One thing I learned along the way is that it can be easy to dehydrate after a whipples, especially if you pick up a tummy bug, so remember to keep some sports drinks in the cupboard as you won't rehydrate without taking on salts - another really useful piece of advice I was given that can make a huge difference. As it's still an unusual operation many GPs don't have much knowledge about it.

I got unlucky and had a recurrence at my 2 year checkup in my liver, but I didn't have chemo following the whipples because my cancer is rare and there wasn't a chemo available then. Although now terminal I'm still having a fantastic time and am still looking like a fraud. I've got a good few years left in me yet that I wouldn't have had without the Whipples and I'm enormously grateful to the medics for that. My Whipples was just in the nick of time, my tumour was tennis ball sized.

So good luck with it, ask anything you like and I'll be as honest as possible if it will help you. We're a rare breed and it is worth going through, your life will be different but you can do whatever you want with a few adaptations. Be proud of your scar too!

Suzette

[Guest]

Hi Suzette,

Thanks for your kind words. Been meaning to reply earlier , but this is my chemo week, so it has bee hard to get up the energy.I am now 12 weeks post whipples, and apart from the chemo feel great.

Have taken on your advice about the sports drinks and the farting .

I had a great weekend just gone. Managed to go windsurfing on the lagoon in Hove. I have taught the sport for the last 18 years so it is a little strange being back with the novices on the lagoon (basically an over gown duck pond). Did not hurt at all , and did my mood a world of good .

Am so sorry you have been diagnosed with secondry. I am amazed you are so positive. i never realised the strength of the human spirit until i got ill and met other patients.

If you ever want to give windsurfing a go, would be more than happy to get you on the water. Am planning to teach my surgeon (Arj Shankar) this summer .

Take care

Simon

[Guest]

Well, i have now been back at work two weeks, and loving it. One of the hardest things for me the last nine months whilst ill, has been the boredom. Now i am back at work, back in Brighton surrounded by my friends, i actually feel like I have got my life back and it feels bloody good.

Being in Brighton means I cycle everywhere, so am gettting my fitness back really quickly. Have also started back at my local gymn. loads of swiss ball work, which is great to rebuild my stomach muscles. Still have to take it easy though, and do get pretty tired.

Was too tired this weekend to windsurf, so made a plan for whilst `i am having chemo. Part of the attraction of windsurfing for me is the social aspect of hanging out on the beach, so now whilst on my bad weeks i am going to focus on taking photos. This way i learn to do something i have always been interested in doing, but am still around my friends . My boss has lent me his digital SLR which has a really good lens, so the results have been pretty good.

Have an extra week off my chemo this month ,as am transfering my treatment down to Brighton, so should feel almost normal next week.

That's all for now .

Simon [/img]