No evidence of spread on scan

Hi Needing friends

I'm sorry that things are difficult for you. I know I have said it before but I think that you just have to let your partner take the lead in how he wants to do things. It's really hard going, I know. The good thing is that the scan is clear. I think it takes a long time to recover from a Whipple as things certainly arent the same as before.

Squeaky

Thanks squeaky,, its just that feeling of not being able to help and improve things for him that makes me feel useless, like we are wasting time. I feel anxious because things are definitely worsethan a few weeks ago, his recovery from the whipples was great. Whether, it is adhesions, the creon on something worse I don't know x

Hi Needing Friends.

I'm not sure whether its the norm but we found our specialist surgeon somewhat  cold and distant when we discussed with him  the full ramifications of a full pancreus removal - which was his first choice of action.  His answer to our question  was simply to say " Afterwards its about pills and injections." That was it!   Nothing about the possible discomforts. Possible complications, and the radical changes in life style and quality Anne would/could  possibly experience. I suppose from his perspective his job as a surgeon was to cut out the offending  organ, the rest was  someone else in the medical professions problem  to deal with - including the patient. It was, as a result of his distant response Anne refused the operation first time and researched the aftermath of this proceedier, including a partial pancreus removal -  which oddly  was his second option when later we informed him again  of Anne's final refusal for the complete pancreus removal. However  I'm not being critical of his skills. He is one of the countries top surgeons in this field. But from a humanitarian perspective I think it only fare patients should be given the full picture of aftercare and possible difficulties to be experienced with pancreatic surgery so they can make an informed decision. I don't know if you and your partner experienced the same uninformed approach as our surgeon  but it seems like it to me as what you are both now experiencing seems to be coming as rather a shock.

But its only fair to say that  the final  reason Anne eventually decided against surgery was because of her age and general poor health with other matters including Lupus ( An incurable  auto immune disease)  which created mega problems 19yrs ago when she was successfully treated for Non Hodgkins Lymphoma involving very strong chemotherapy. She could have died. And that was without surgery!  Strangely our Specialist Surgeon on this occasion seemed totally unfazed by this ?  But maybe things have moved on since then. I truly wish you both well and successful in solving  your current worries. 

Geoff.

Hi Geoff

i agree that the surgeon sees his job as cutting things out and it’s for others to deal with all else that happens. And I’m in no way critical of that approach. The surgeon told my husband about the Whipple in detail and that recovery was over 8 to 10 weeks but little about long term effects. I suspects partly because it varies so much with different people.

Squeaky

Thank you Geoff and squeaky for your replies. I think the reason we went for surgery was that we felt one operation in place of months of chemotherapy and the hope of a cure swung it for us. The registrar said in our shoes its what he would choose and 9f course time is of the essence. The operation, although it wasn't me going through it was seamless, he recovered fast and well. In just a couple of weeks he was home and began eating. Things have deteriorated, the pain is a new thing, he is not eating, so I don't know if this is something that you can expect as a result of the operation ie adhesions, or not

We missed the post op consultation with the surgeon as the appointment letter arrived after the appointment. This is not the first time. How many wasted appointments not as a fault of the patients I dread to think. Anyhow, we missed being able to ask relavent questions and as things were going well perhaps didn't think we needed to ask for another  appointment. The oncologist gives nothing away, Ken has not become diabetic as a result of the operation, he only takes creon and omeprazol due to the gastric bleed following the insertion of the stents to relieve the jaundice preoperatively.. Does your wife take any medication or any chemo, how are her symptoms if you don't mind me asking. I think it would be beneficial if the doctors could tell us a little about what to expect. Sending all good wishes

Hi Needing Friends

Thanks for replying. Anne refused not only the operation but also chemotherapy. Her perceived inability to survive or deal with either was entirely based on her current illnesses - past  suffering with Non Hodgkins Lymphoma treatment - and as I said earlier, Lupus, which drains her of all energy and includes a lot of medication. It was only when we pushed the subject along with the surgeons Registra did we get to the bottom line of treatment. (1) No treatment would give her 6 to 12 months of life. ( Shes still here 15 months on)  (2)  Chemotherapy alone would give her 12 to 18 months. And when we asked  life expectancy following surgery and chemo the Registra said " Do you really want to know?" Anne said "Of course. " Her reply was "Maybe 3 to 3 and a half years.with a 5% chance of living over 5yrs. For the little extra probable life expectancy given, along with the trauma of it all and reduced quality of life , Anne took the brave decision to refuse all treatment. As I said on another of my posts Anne finally said " I've had my three score years and ten." ( She's 71yrs.)  Nobody can live forever. Ive had a good life so let nature take its course. " Her current problems are with Creon which too often bloats her out along with pain from wind. Once the wind has been released she is fine. However there is some serious weight loss which may or maybe not caused by her much redused  diet or as  a direct effect of the cancer wearing her body down.. Trying gluten free foods did nothing to help. Please feel free to ask anything you wish as both Anne and myself are very open people.

Geoff

Thanks geoff999, how useless watching them shrink before you, does it make you feel. I suppose I wanted pain relief so that perhaps we could do more together. He is so tired but can't sleep at night anymore. I don't want to jump the gun so to speak, but I really don't know where we are in the progression of this disease x

Hi Needing Friends 

Oh Yes you are right my friend. When I hold Anne she's just skin and bone but she soldiers on. I take her shopping but she needs a stick these days and frequent sit downs. Anne too has a lot of sleep problems although the last two nights she's slept much better. Now we are racking our brains as to whether its the new type meals she's been having which was soup with bread and butter and a small salmon dinner. However during her bad night's  her bloating and wind pain is severe. She says laying on her back seems like resting on a pebble beach. Progression is of course a great worry as with you and myself. However Anne knows she may not have very long, maybe months but if a miracle happens possibly a year - who knows? However your hubby's medical prognosis is far more positive so let's hope that what's happening now is just a glitch which the doctors can reverse. Stay safe you two.

Geoff 

Sometimes you just want a plan, answers to all the situations you find yourselves in, to know what to do