Just diagnosed post whipples

[Sharon m]

Hi,

I have just had the whipple procedure three weeks ago for a suspected tumour in my bile duct, this turned out to be a tumour in the head of my pancreas which had caused the obstruction. The doctor said everything else was clear other than one lymph node which was directly involved. The letter I had said the pancreas showed changes but no other lesions felt. I have no idea what this means,I had a severe bout of pancreatitis after a ERCP. I'm'm not sure if this would account for the said changes?

I was a fit 45 year old before this but in hindsight had the symptoms for a while including a bout of depression, indigestion and weight loss, as with most of what I have read I was suspected to have gall stones and discharged from hospital with jaundice. If it wasn't for a very insistant nurse I would of probably still been waiting for tests. I had a tough time pre op with four attempts at fitting a stent and a eight pint blood transfusion. I am recovering well from surgery at my daughters the only issue I really had post surgery was the epidural not working and a wound infection. I am finding the exhaustion hard to deal with and have some horrible pain low down in my stomach especially at night and wondered if this was normal and sharp pains close to my hip bones both sides? I'm on 25,000 units of creon which seems to be working but bloating on occasions is painful.

I have an appointment at Oncology this week to discuss chemo. I'm feeling confused and scared which I suppose is normal, if anything can be again. I also have a five year old daughter who is with my ex at the minute but really want to get her home but I dont know how to explain things to my little one.

Hope this makes sense I've never posted on any forum before

[J_T]

Hi Sharon and welcome to the forum.

Don't know if you are aware but there are specialist nurses here that you can phone or email during the week. PC is the specialism and are really clued up, do make use of them.

The good news is that you have had the Whipple operation so that is very positive.

I have no personal experience of Whipple but there are other forum family members who do and I'm sure will have lots of information to impart to you.

Keep posting.

Julia x

[nikkis]

Hi Sharon, sorry to hear you are going through this. My husband, Paul, who is 50 had a whipples back in May, but unfortunately his bowel perforated and he had another op two weeks later so has made a slow recovery and pain has been an ongoing issue. To be honest I don't think there is any "normal" for this cancer or the surgery, it affects everyone so differently. This is the most major surgery you can have, so don't be too hard on yourself, and expect too much too soon, but I can appreciate that is easier said than done when you have a little one and want to be there for her.

Our girls are 13 and 16, so much older than your daughter, but we have been honest and open with them and they have coped amazingly. I guess just explain as much to your daughter as she can understand. I think macmilian do some great books to help explain things to children.

As Julia has said the nurses here will be able to give you lots of support and advice,ring or email them with your questions. Paul often says how lucky he was that he could have surgery, but it is hard to think you are lucky when you are going through so much isn't it?

Take care,

Nikki

[Sharon m]

Thank you for your replies, I will contact the help line nurses for information my GP seems to be a little unsure of the operation and it's effects, i have had issues already getting my creon as he is unsure on if I should continue taking it annoying.

I know my life will be different and my older children have been great understanding and supportive, the hard thing is seeing their worry and upset, sometimes I feel selfish as at the minute my diagnosis seems to dominate my every waking minute especially at bedtime when my brain lights up. I try to focus on the positive because I know from reading the information available I am incredibly lucky to be able to have the operation.

I hope your husband recovers from this op it is very hard and his complication must of been very difficult and worrying.

Onwards and upwards

Thank you

Sharon

[nikkis]

Sharon,

You have every reason to feel selfish at the moment. It sounds like your older children are fantastic, so that is a credit to you, and they will cope. Our GP is lovely but was also very unsure about the prescriptions for various things. However once I had spoke to the nurses here, this enabled me to sound like I knew what I was talking about, and he now just does as I ask!

Have you got any sleeping tablets? Might be worth considering while you are going through this difficult time,

Nikki

[Sones]

Hi Sharon

I am truly sorry to read your story and wish I didn't have to welcome you to this forum. However, your here and it sounds as though your doing ok considering the major surgery you have just been through. I was diagnosed in Sept 2011 and had the whipples surgery four weeks later. Along with the physical pain from healing there is also the psychological side to deal with. From my own experience following surgery I had aches and pains everywhere, the pains moved from one place to another and some of these pains continue today. I was also a complete emotional wreck. I then went on to have chemo, gemcitabine six weeks post surgery. I managed the chemo quite well but I did experience nausea and extreme tiredness which did get worse towards the end as the chemo is accumulative. However, we are all different and some people cope better than others. Infallible I was seeing my oncologist every three months but this has now been increased to four monthly.

Take one day at a time Sharon, the surgery you've had is major trauma to your body, you will start to feel better.

Take care

Sue

[marie souter]

Hi Sharon,

I read your post on another stream and had to find you to read your story, am so pleased for you that you got the whipples procedure its the best possible outcome for this awful cancer and I am truly happy to see someone actually be able to get it.

The side effects sound truly awful and I think you have every right to feel sorry for yourself and a bit selfish HELLS YEAH I WOULD BE.. its no small thing you are going through...and your brain will be gravitating from one thing to the other in what feels like 24/7 .. My advice is get yourself as clued up as you can .. as NIkki says if you know what you're talking about they pay you more attention .. my moms doc used to turn to me for advice on what I thought he should do (the truth I promise you), I became a sponge soaking up stuff I got from this site, from the nurses, from the specialists...I used it all, and all the medical team said my mom would not have been alive as long as she had been were it not for me being on the ball.

Channel all your worry into something that can help...its just finding that something that you can do it with.

Sleeping tablets are an option initially while things are so fresh and horrendous for you. But don't judge yourself harshly you are only human. The specialist nurses on here are great for advice and support.

Take things one day at a time

and keep on fighting the fight

love and hugz

marie

xx