Please Can Anyone Help Us

Hello

My husband is 53 and had a whipples operation on 4th July 2007, and is now undergoing 26 sessions of chemotherapy and is on constant pain medication.  He is in constant pain 9 months on.  We keep being told by Doctors he's bound to get a lot of pain as he's had a major operation, but it's been 9 months and I don't know how much more he can take.  He is unable to eat any savory food and lives on cakes and biscuits which no medical people seem the slightest bit bothered about. He is so weak all of the time and nobody from the hospital seems to care. He is getting very depressed and thinks it would have been better if the cancer had taken it's course rather than living like he is now

I am at a loss as to what else I can do to help him or where to go for help. If anyone reading this has any ideas or tips that may help I would be very greatful.

 PLEASE CAN ANYONE HELP US

Mandy

UK 

Hello Mandy......I can only imagine the frustration and fear you are both feeling. To see your husband in such pain and not be able to find any help for it must be so distressing. I wish I could offer some help for you both but I am at a loss knowing where to tell you to turn. I can only comment on where you might find some help as far as his diet goes. He really needs to be getting a balanced diet in order to build his strength. Rebuilding his immune system back to an optimum level is of the utmost importance too. If he is comfortable taking liquids then I would suggest you find some of the brown rice protein powder and some of the Greens type fruit and vegetable powders which are available at most health food stores. You can mix the powders with juices or water and they make a tasty nutritious drink. Several of these a day should certainly help him as far as getting a more balanced diet. I can't imagine in this day and age that there is nothing more they can do for his pain. If I were you I would nag and nag the doctors until they pay more attention. I too live in a country that has universal health care and I have found from experience that one must be really serious and determined about advocating for the patient or they may be overlooked because our doctors are so overworked. Here is a website on cancer and nutrition which I have found very helpful http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=52 and I hope it will be a help for you too. I'll pray for better days ahead for you both

On 2/2/2008 Petes Wife wrote:

Hello

My husband is 53 and had a whipples operation on 4th July 2007, and is now undergoing 26 sessions of chemotherapy and is on constant pain medication.  He is in constant pain 9 months on.  We keep being told by Doctors he's bound to get a lot of pain as he's had a major operation, but it's been 9 months and I don't know how much more he can take.  He is unable to eat any savory food and lives on cakes and biscuits which no medical people seem the slightest bit bothered about. He is so weak all of the time and nobody from the hospital seems to care. He is getting very depressed and thinks it would have been better if the cancer had taken it's course rather than living like he is now

I am at a loss as to what else I can do to help him or where to go for help. If anyone reading this has any ideas or tips that may help I would be very greatful.

 PLEASE CAN ANYONE HELP US

Mandy

UK 

Mandy,

Is your husband taking pancreatic enzymes to help with digestion?  If not, some of his pain may be gastric distress from being unable to digest the food he takes in.  It's important to take the enzymes post Whipple surgery, and to take enough of them to control symptoms.  Believe me, the pain from undigested food passing through you system can be severe and not always confined to your abdomen.  Pain medications will not alleviate this, and it can last for hours after eating. 

After surgery, my stomach was very sensitive to spicy or rich food. This lasted a few months.  I was prescribed Nexium to reduce stomach acid, both to help with the sensitive stomach, and to reduce possibility of stomach acid causing ulcers on the reconstructed stomach tissue.  It helped me a lot.  I was able to gradually return to eating foods  I enjoyed.  

Food is an issue for most people after Whipple surgery.  I didn't have much of an appetite.  But I was told how very important it is to eat a well balanced diet, low in fat, and to include protein in every meal. They wanted me to consume animal protein in minimum one meal each day.   If your husband has been eating only cookies for 9 months, it is most likely contributing to his weakness. I agree with you, it is odd that his doctors are not concerned. 

From you message, it sounds like your husband it seriously depressed.  From what I have read, depression is a very common in patients with PC.  Dealing with both the illness and the Whipple surgery is a big challenge.  Maybe your doctor can give your husband something to help with depression.  Some of the PC patients on the John's Hopkins PC forum say the depression/anti-anxiety meds made a huge difference in quality of life, and helped with their appetite and in some cases, pain management as well.

I'm not in the medical profession, just a PC survivor and the things I mentioned, other than depression, are based on my personal experience.  I'm sorry for your husband's difficulties and I hope he is able to get some help soon. 

To AlivelnOldsTown & Shemay

Thank you both for your replies, it is so easy to feel that your on your own in this situation but clearly this is not the case and your responses are very much appreciated.

My husband was taking pancreatic enzymes but they gave him terrible stomach cramps and when he stopped taking them the cramps went away. After reading your response we will ask the surgeon on are next visit if there is an alternative to the creon he was taking.

I now think it is time to start kicking up a fuss about whats going on and insisting somethings done.

Thank you once again and I wish you both a happyand healthy future.

Mandy

XX 

He needs to take pangestyme it is very gentle and helps the digestion. Don't put up with being put off, bug them everyday if you have to or change to another doctor. good luck

I don't understand why your Husband would have such pain after 9 months?  My Husband had stomach pain after he had the whipple procedure but it didn't start for until about 6 months after his surgery.  His Dr said its from scar tissue. he takes vicodin and it seems to really help.  I would definitely go for a 2nd opinion somewhere to see what is going on, its only my opinion but it seems he should have had more of a recovery.

thanks,

Lisa

Hi

Proper nutrition is very important to keep your husband's immune system effective.  Make him milk shakes with some protein drink thrown in as well as including whole milk, yoghurt, ice cream and fresh fruit (banana, strawberries, etc.).  This will give him more energy and will give him some big calories to boost his weight.  My husband died from pancreatic cancer but he never would have lasted as long as he did without this.

I cant remember what they are called but they are 'build me up drinks'.  When my mum just had the whipple she got me to buy her some.  Should be able to get them in them in a chemist which is what we did.  They were abit like milkshakes and came in sachets, with different flavours.  I dont know if you tried them or if you want to it is just suggestion, it might help:)