Returning to work after Whipples Procedure

[Kathy]

Hi

Please excuse me if this sounds a bit long winded but I don't know how to shorten this problem!!

I am anxious to go back to work as soon as possible - I had my whipples procedure on June 16th 2011 and made a quick recovery. Unfortunately I developed an abcess on my liver so was kept in hospital and was given 3 lots of antibiotics through IV drip. I was discharged from hospital on 6th July still with the abcess and was given 3 lots of antibiotics to take for 4 weeks and returned to see the consultant last Thursday 4th August and also had an ultrasound. Fortunately the abcess had cleared and the consultant was really pleased with my progress. I myself think that I should be feeling a lot better than I do but he does not agree. I still feel a little weak (not as bad and getting better every day) but I think the main problem is the fact that I have lost 2 stone since this started 4 months ago and cannot seem to put any weight on. At the moment I am 7 stone which is what I weighed when i was discharged from hospital, I have tried to eat what I can but I can only eat small amounts and I find even though I am taking the creon capsules I am still going to the toilet an hour or so after eating, can anyone advise me as to what I can eat to put weight on and is it safe for me to take imodium. My consultant thinks that i should take another 4 weeks of work as I am waiting for an appointment to see the oncologist regarding chemo treatment. This is worrying me as I don't want this to affect my returning to work - I would like to hear from anyone who has had similar experiences and will having chemo (I think it will be one day every two weeks) affect my returning to work.

Thank you

Kathy

[PCUK Nurse Jeni]

Hi Kathy,

I work for PCUK.

There are many issues here.

I would be very happy to answer some of your queries and talk about the issues of chemo and work.

If possible, please can you email me at support@pancreaticcancer.org.uk and I will email you directly with some information.

Kind regards,

Jeni.

[Desertmouse]

Dear Kathy,

I'm about six days ahead of you (Whipples 10th June) and I too have recovered quite quickly. Getting your fitness back does take time and what feels fine at home might not be so great at work. Your consultant is probably about right in suggesting 3 months before returning to work. I have started chemo - 1 day a week for 3 weeks then one week off and will be reviewed by my occupational medicine department with a view to returning to work at the three month point, but part time (to fit in around the chemo). Have to say I can't wait - going slightly stir crazy at home.

Mouse

[Kathy]

Hi Mouse

Thanks for your reply and I am pleased to hear you are feeling well. As you say being at home is different to being at work - I went and did a bit of shopping this morning and came back completely exhausted. My weight loss is a big issue with me and I am a little bit nervous about the chemo, how is it making you feel I have been told that it can make you feel sick.

I hope you continue to get better and will soon be back at work.

Take care

Kathy

[Trevor F]

Kathy

I am 2 years ahead of you. I had a Whipples at the end of June 2009, during which a tumour the size of a golf ball was removed, lost a stone and a half overnight through surgery and have not put weight on since although it has stabilised at the new level. I sat at home for 2 months watching the grass grow and during the 2nd half of August 2009 got bored but felt mentally OK to return to work which I did in September 2009. Fortunately, like you, this was during the summer or so-called summer so it wasn't dark and cold outside the whole time, only some of the time.

I drove to Manchester from London, stopping at Tesco at Stoke for paracetemol as the soreness from the op hadn't quite gone away, but by November everything seemed to click back into place. From January 2010 I commuted to Zurich each week from London City airport without any major issues although I had to be within 4 minutes of the nearest toilet. I was taking oral adjuvent chemo from Sept 2009 to Feb 2010 but managed to work through that, adapting accordingly. Fortunately in Switzerland they have great toilets. I have even used the one at the top of the Jungfrau in May 2010, one of the highest in the world !!

I got in touch with a doctor in St Louis USA who was diagnosed with PC in 2002 and was given 6 months to live at that time. He told me that you just have to be patient and things will just get better and better and better, but slowly.

Also don't forget that you're lucky to still be around. Only 10% of diagnosed cases are operable. It's like getting a second chance at life.

And so 2 years on I am still working and have recently returned from a business trip to the US . You sound OK.... just be patient.... the human body is marvellous, it heals itself slowly. Get back to work as soon as you can, particularly if you feel up to it mentally.... cancer likes inactive people... make yourself busy and then this whole business is at the back of your mind rather than at the front.

[AnneD]

Trevor that's an amazingly positive and encouraging story.

Thank you!

It is good to do things to push "this whole business" to the back of your mind if possible.

Anne

[Kathy]

Hi Trevor

Thank you so much you have made me feel a lot more positive you sound like a very determined person and it certainly paid off for you I hope I can be as strong as you - I have lost 2 stone and although I have not lost any more I am not gaining but have been giving some advice on taking my creon so hopefully now I have increased that I find that I am not going to the toilet as much and that is a good thing. I have not started any chemo treatment yet (this was held up because of the abcess that developed on my liver) and am hoping that this does not set me back, the chemo tablets were mentioned to me by my consultant while I was in hospital but since then I have been told that it will probably be injection so I will have to wait and see.I would prefer to take tablets because like you I could take them around my work schedule but I will have to wait and discuss this with the oncologist.

Anyway thank you again and I will do my very best to stay positive and every day I am doing more and more and getting stronger and I am determined to beat this.

Take care

Kathy

[Trevor F]

The chemo that I had involved taking pills ( capcitabine ) which you can take anywhere, but also an intraveneous injection of Gemzar which I had done on a Sunday morning at the clinic, thereby causing minimal disruption to any work or business schedules.

[Kathy]

Hi Trevor

Sorry to keep asking questions but how did you feel after both these treatments i.e. sickness and diarrhoea this is something that concerns me as I am a receptionist/administrator and whilst I am hoping to try and get my treatment around my days off i.e. tuesday pm and all day wednesday, I am concerned about going to work and having these symptoms. I guess every patient is different but is there a sickness drug they can incorporate with the treatment that they can give you.

Hope you don't mind me asking these questions.

Kathy

[Trevor F]

No sickness at all but loads of the other stuff for which you can take Loperamide ( Imodium ). 98p for 6 in Sainsburys. In my case the clinic gave me an ample supply . I guess that if you are a receptionist and you have to keep going it could be disruptive !! But Imodium should help.

But the side effects depend largely on the individual person.

[Kathy]

Thanks Trevor you have been a great help and hopefully I will make a good recovery like yourself.

All the best for the future.

Kathy

[cliffp]

Kathy

Well done on your speedy recovery. My Whipples was two years ago now and I was discharged (under pressure from me) after six days but, like you, was readmitted for an infection for another four days soon after. Like you I couldn't fancy any food for several weeks but gradually some appetite returned. My GP said eat whatever I fancied to regain the 30lbs I'd lost. I did. Biscuits, cake and chocolate made an unhealthy but acceptable diet till things returned to normal.

I have now put back all the weight I lost and have to watch my diet and exercise to keep it where I want it to be. I was able to exercise fully as before within 3 months, including golf and jogging, and returned to work four months after my op. I didn't have any bowel problems after the first few weeks so I can't coomment there but I suspect that it is still early for you and things should settle down gradually. I take Omeprazole (don't know if it does any good) and Creon in large amounts for every meal or snack but that's no problem.

My lymph nodes were declared all clear so was told I didn't need chemo and didn't have it, mainly because I wanted to return to work so I can't comment on how chemo would affect you. I'm sure it affects different people different ways and depends on what chemo they use. I am part of a trial group who do not have chemo to see how well we recover compared to those that do. However, I sometimes wish I had received it as a kind of 'belt and braces' safety net. Still, I've had 3-monthly tests and scans, now down to 6-monthly and 'so far so good'. If you have chemo it might be more important in the long term than work?

My story is on the 'Real Life Stories' (Operable) section of the Pancreatic Cancer UK website if you want more details.

Do whatever the medics tell you and 'Good Luck'

Cheers

Cliff

[Desertmouse]

Dear Kathy,

I'm having gemcitabine as part of the ESPAC4 trial. Administration is proving unpleasant but side effects are minimal. However, my worst day for tiredness is Friday after chemo on Weds. I've had no diarrhoea (in fact the opposite - possibly due to the domperidone (anti-emetic)) and no sickness. Appetite is a little blunted.

[Kathy]

Hi Cliff

Thank you for your reply and read it with great interest. You sound like you have made a remarkable recovery and well done. I feel more optomistic about my weight as I have now increased my creon and find that things are settling down a bit now and although I have not gained any weight as yet and it has been 11 weeks now since my operation, I am hoping that I will gain some weight soon. I have not heard about my chemo yet and my consultant did say that they would not have been able to start it with the abcess that I had developed but he wrote to the oncologist on 4th August but to date I have not heard and I have even chased my consultants secretary up. Like you I had several scans and was told that my tumour had not spread and after my operation the consultant told me that they had removed the tumour in one piece and was very happy with the result. I am wondering whether I need to have chemo or like you maybe just need regular check ups. I would like to fully recover and go back to work as soon as possible so not to have chemo would be a bonus to me but we will have to see.

Anyway all the best to you.

Kathy

[Kathy]

Hi Mouse

It doesn't sound like you are having a pleasant time at the moment, how long are you on these trials for and are they more unpleasant than the normal chemo you were having, I am concerned as to which way to go because I want to have this treatment around my work schedule and need to know the best way to go, also I do not want to lose any more weight (I know I keep on about my weight all the time but when I look in the mirror I look like I have anorexia) and I really want to gain some weight before returning to work but have been trying to each as much as I can take and increased my creon but to no avail, I am also scared that the treament my make me lose weight as well, I feel so confused.

Kathy

[Trevor F]

I wouldn't worry about not gaining weight, as long as you are not losing any. My weight has stabilised.

When I came home from hospital after my Whipples I thought that I looked anorexic. However my wife told me it made me look more handsome than before so I didn't worry about it any more.

[Desertmouse]

Dear Kathy,

I'm in the "control" arm of the ESPAC4 trial which means I'm getting the standard adjuvant post-operative chemo, which I would have got anyway. The "trial" arm involves taking capcitebine tablets as well (same as Trevor F had). If entered into the trial you will have no choice over which arm you are in, but you probably are monitored more closely and treated more aggressively (ie dose reduction rather than dose omission if your blood count drops) than if you were not in the trial. Six months is the normal "sentence", trial or no trial. I have not lost any weight over this first cycle and may have gained a very small amount. Yes, the infusion is sore, but the rest of the side effects are really not too bad. Most of my problems are psychological, I'm sure, since I don't take well to the patient role.

As said before I am due to be reviewed by my occupational health department next week and hope to return to work part time next month. That may help to take my mind off the chemo a bit.

Best wishes,

Mouse