Massive surgery twice in 12 months

[BillampSheilapNET]

Hello

We are new here so I will briefly tell our story:

June 2014 William, my huband, was loosing weight - diagnosed with Type 2 diabetes and then prostate cancer.

Sept 2014 radiologist noticed a lesion on the pancreas when reviewing scans of prostate.

November 2014 hospitalised due to internal bleeding , found to be from stomach "ulcers"

Referred to a London hospital with suspected pancreatic neuroendocrine tumour (pNet). A more unusual type of cancer that is often slow growing and not so aggressive.

December 11th after scans to confirm the surgeon operated and removed 2/3 of pancreas,(the tumour was the size of a coke bottle)spleen, all stomach and one adrenal gland. Told its "all gone".

Jan 2015 scan showed further lesion in remaing pancreas.

Recovery from surgery was tough, Creon and insulin dependent, but by May things were not too bad but then chemo had to start with the aim of mopping up any stray cells.

October 2015 chemo over, scan showed no further spread so more surgery planned.

December 7th 2015 further surgery: total pancreatectomy, Whipple - removed duodenum and gall bladder and more lymph nodes.

Path results show all tumour removed, 25mm well defined intermediate stage & no cancer in lymph nodes.

So here we are January 2016, 18 months since the start.

Recovery from this surgery is proving much more difficult. We were not warned that William could possibly suffer serious dumping syndrome again, so it was a shock and 5 weeks after surgery we are still really struggling. One of the lovely support nurses from this site phoned me and we had a long chat - thank you. We have become quite clued up on dumping syndrome over the past 12 months but now realise that its a very individual thing. Diane, the nurse told me that some people need to go back to a nursery diet, something our dietician did not recommend. However we have been giving it a try over the last couple of days and things do seem to have improved. Today was weigh in day and for the first time he hasnt lost any weight - hurrah! William is so weak, it hurts to remeber that just before surgery he was feeling great and had regained his wieght, he was even digging the allotment.

We would love to hear from any of you who have had any experience of this. Just to talk to folks who know what you are going through would be good.

Thank you all for taking the time to read this.

Sheila

[Didge]

Hello Sheila. I had to look up dumping syndrome as I had never heard of it but it does seem that tinkering with the diet can help. Poor William, it sounds very distressing! It is only just over a month since this last major surgery though so he is bound to be weak. All I can say is just take each day at a time, don't look too far ahead and hopefully he will gain ground every day. The neuroendocrine tumours are often far less aggressive and slower to grow (think Wilko and Steve Jobs) so I do hope that the surgery has got rid of it all and that William will gradually regain his health. And that spring is not far away as he is obviously a keen gardener! Didge x

[BillampSheilapNET]

Hi Didge, thanks for your support and encouragement. It really helps. Im so pleased to have found this friendly forum.

By the way, just so folks know a bit more about who they are talking to, William is 67 a retired engineer and Im 64 a retired social services administrator. We have been married 46 years this year. So we have a Golden Anniversary goal! Sheila

[Sueoliver]

I just wanted to say hello and I hope William makes a good recovery. He is very brave to go through all that and I wish him Well and I hope he gets to enjoy his garden. Your Golden Wedding is something to aim for and really look forward to.

Sending you lots of strength and love.

Sue X

[J_T]

Hello Sheila and welcome to the forum, it certainly proved a lifeline for me when my husband was ill.

Sorry to hear William's diagnosis and he certainly seems to have been through it! I suppose he would be considered 'lucky' to be able to have surgery but we know just what a massive undertaking that is so it probably doesn't feel like that!

I too, had never heard of dumping syndrome so I've learned something! Didge is right, William is bound to be weak at this point but I sincerely hope the path is up from here and he slowly regains some strength and can look forward to you Golden Wedding!

Julia x

[BillampSheilapNET]

Hi Sue & Julia

Thanks for the warm welcome and for your support and encouragement we are in need of some of that at the moment!

Sheila

[sandraW]

Hi Sheila,

Sorry I must have missed your post, what a horrendous journey your poor husband has been on, I hope now he starts to slowly improve. I cannot offer you any help on dumping syndrome but as you have already been in touch with our wonderful nurses I am sure you will have had lots of support and information from them.

Fingers crossed that the "nursery diet" helps, please try and take care of yourself too, sandrax xx

[Pete12]

Hi Sheila,

I had a Whipple on 6th June 2014,and really struggled to eat any solid foods for 8 weeks. When I started to eat I also suffered with dumping syndrome ( dizziness, nausea, and severe tiredness). My Consultant said that it would gradually improve in time. It did gradually improve over a period of six months as long as I didn't overdo the fatty foods. I now can eat almost anything without any problems, so he was right, it just takes time so hang in there.

Pete xxx

[BillampSheilapNET]

Pete, Thank you so much for your encouragement. That is great news and it has helped William tremendousy to know that you got through it and can now eat almost normally. There is hope on the horizon!! Thank you, thank you! Sheila

[BillampSheilapNET]

Sandra, thank you for your kind thoughts. This forum is so supportive. Its so good to talk to people who understand. Sheila.

[BillampSheilapNET]

Pete

Would you mind telling me what things you found best to eat when you started eating solids again?

Thanks. Sheila

[Pete12]

Hi Sheila,

Initially all I could manage was some soup with a small amount of bread (taken with 120,000 units of Creon) but gradually managed eating small quantities of fish,chicken with vegetables. I still experienced some dumping, but as I said before, this gradually improved. After approximately 3 months I started experimenting by eating things like minced beef with mash, low fat cottage pie (ready meal). I quickly learned that I could not tolerate any spicy foods at all, and still can't to this day. I'm afraid it's a case of trial and error, and I'm still confused why I can tolerate certain foods and not others. I did receive very good support from the dieticians at the hospital following my surgery, and I would suggest that you request an appointment for William to see them if possible as they will be able to provide you with information regarding the types of food William may best tolerate.

Regards. Pete.

[BillampSheilapNET]

Pete, thanks for your reply, sorry Ive been slow to respond, sometimes things just take over here!

William is managing to eat a bit more now, he is uncomfortable after all food but its getting easier. He usually has 2 dumping episodes a day although occasionally its only one. I cant find any particular food that is either better or worse for him, so we are just continuing to try different things. There doesnt seem to be any reason why sometimes one thing will be fine and other times not. He has kept his weight steady for 3 weeks now which is a relief.

The hospital are happy with his progress and just tell us it will take time, and that he should feel much better by the summer and may be back digging his allotment by the end of the year!! So we must be patient and try to keep positive.

I really appreciate your support, thankyou.

Sheila