We're new to all this.....

[rogs]

My wife started complaining of difficulty digesting her food some 4 months ago, and the GP prescribed Omeprozole tablets, which helped for a while. She also had some abdominal bloating (not serious)  .The GP ordered blood tests, and included a test for CA125 in her requests. Slightly unexpectedly, that result came back high, and the GP referred my wife to Gynaecology, for further tests for ovarian cancer.

An ultrasound and subsequent CT scan revealed 2 benign ovarian cysts, but the  letter received from the gynaecologist - following that result  - included the apparently innocuous phrase 'the CT scan has shown some pancreatic duct dilation, which requires further investigation' and the advise that the matter had been referred to the 'upper GI team'

Some 10 days later, on Thursday last, we received an early evening phone call from a very friendly lady, inviting my wife to attend a meeting on the following day, at the 'ESCU unit'.... including me in the invitation  (Bit strange during Covid we thought?)

We arrived at outpatients - at the allotted time - where the receptionist simply said 'never heard of ESCU'....We wandered around a little until eventually a cleaner told us that it was 'some way along the corridor and up a flight of stairs'. We eventually arrived in the corridor of ward 15, where we spotted a paper sign saying ESCU.  A random nurse - who happened to be passing - said she had no idea why we should be there, but she would ask.  In due course we encountered - by chance - the Upper GI nurse who had telephoned the night before. She ushered us into a small anti-room, with two seats and a cupboard.

This apparently would lead onto some sort of staff room, which was occupied by some 4 members of staff (despite a covid notice limiting the numbers to 2!). One staff member remained in the room for some 15 minutes on some sort of 'important' telephone call, while our nurse returned to the corridor outside our 'cubby hole' with a tall thin chap in 'scrubs'.

Eventually the interminable phone call did end, and the chap left. We were then shunted into 2 seats in the staff room, with the nurse and chap in 'scrubs' sat opposite. The thin chap simply then said. "My name is ****  and I have to give you some bad news. Your CT scan has shown an inoperable  tumour on your pancreas.  There is not much we can do. You maybe suitable for chemo that might extend your life a little"

"How long have I got?" asked my shocked wife..... "No idea?"....  "Months or years?"  - "Probably months..... Excuse me, I'm on call, I have to take this phone call"

And that was it. He really didn't want to be there. 

The nurse was much more sympathetic, and help organise blood tests, and pharmacy collections.  She also said she would telephone in a few days to let us know what the blood tests show, and to see how we were doing.

The main point of this post is to ask --  do you good people think I should try and organise a private consultation with whichever oncologist takes over from the GI 'surgeon in scrubs'  so that we can get more time to discuss things  - and not simply get 'wedged' into a staff room again with someone who makes it all to obvious that he has more important places to be?

Should we just wait until we know who the allocated oncologist is going to be, and then ask for a private consultation, or should we just pick a consultant at random, and make an private appointment independently ?

[Skippy]

I am so sorry to hear of your wife's recent diagnosis. It sounds like the staff have not given much empathy towards this nightmare you both find yourselves in. The diagnosis now having been made its difficult to think that a Private Consultant (at a huge financial cost) would make any difference to that provided by NHS. You could change NHS Consultants? My 75 year old brother I know had on line /telephone consultations only during Covid lockdowns. In fact he spoke more to the Consultant's secretary. I did feel one consultation was very direct, delivering to him " you have months (in similar tones you experienced) with " Chemotherapy may prolong the life expectancy"

It didn't really matter in the way it was delivered, the results wouldn't change anything about our circumstances my brother found himself in. I joined this site to learn all I knew on this cancer, never having heard of it before, reading on people's experiences the stages of it, It did help me so much in our guidance and in the care of my brother. 

So many reading your message will hopefully offer a variety of their thoughts to you. 

I could just say keep her reassured that you will care for her through this. 

The Care Team on my brother's case were there for him the whole time. At a phone call he had special diet foods delivered same day and equipment at our request. The Drs Surgery was a brilliant caring support and the Chemo nurses so very attentive. They relayed every task and he was reassued each step of the way. 

[rogs]

14 minutes ago, Skippy said:

I am so sorry to hear of your wife's recent diagnosis. It sounds like the staff have not given much empathy towards this nightmare you both find yourselves in. The diagnosis now having been made its difficult to think that a Private Consultant (at a huge financial cost) would make any difference to that provided by NHS. You could change NHS Consultants? My 75 year old brother I know had on line /telephone consultations only during Covid lockdowns. In fact he spoke more to the Consultant's secretary. I did feel one consultation was very direct, delivering to him " you have months (in similar tones you experienced) with " Chemotherapy may prolong the life expectancy"

It didn't really matter in the way it was delivered, the results wouldn't change anything about our circumstances my brother found himself in. I joined this site to learn all I knew on this cancer, never having heard of it before, reading on people's experiences the stages of it, It did help me so much in our guidance and in the care of my brother. 

So many reading your message will hopefully offer a variety of their thoughts to you. 

I could just say keep her reassured that you will care for her through this. 

The Care Team on my brother's case were there for him the whole time. At a phone call he had special diet foods delivered same day and equipment at our request. The Drs Surgery was a brilliant caring support and the Chemo nurses so very attentive. They relayed every task and he was reassued each step of the way. 

Many thanks for your post and thoughts.  I think probably the most important  point you make is about reassurance. In my case this is not an problem. My wife and I have been together for 54 years and we're very close. Caring for her is not going to be an issue.

Reading my own post again, I can see that some of it is just me lashing out at the messenger. Probably a bit unfair. The poor chap had probably been 'volunteered'  into being the one to let us know the diagnosis.

 Hopefully, whichever oncologist we are referred to will be able to explain what options we have more sympathetically - Although  when you're dealing with a 7 and a half stone 79 year old, with an already inoperable tumour, I feel most options are likely to be a bit like re-arranging the deckchairs on the Titanic.

Thanks again for taking the time to reply, and for your views.

[LisaC]

I’m sorry you were delivered the diagnosis in this way, quite shocking really. 
 

I would contact the hospital PALS department to complain, there are procedures for breaking such news and the manner in which you described is not appropriate at all. 
 

Hopefully you have heard about an appointment with oncology to discuss treatments available. I would also ask about being started on a medication called creon to help with the digestive system and hopefully enable your wife to put on some weight.
When me and my fiancé had the appointment with the oncologist to discuss treatment they also said they would refer him to the hospice to provide support its quite difficult getting to grips with everything and everything changed so dramatically, Lewis was 37 and I’m 34. I am now receiving bereavement counselling from the hospice. 

Hopefully you get some answers soon

 

[rogs]

I did look into the PALS procedure for the hospital in question, but the weblink is broken and just advises to 'report this error to the webmaster'.

So I gave up on that one....  Not that it would have made any real difference. Those higher up the 'admin chain' tend to have got there by 'ducking and diving' anyway, and usually have a suitably vague response which doesn't actually change anything - but clears them legally!  

The Nurse Specialist has been very good - and has already arranged for Creon pills and nutrient drinks.  That has already helped a lot!. 

The next step seems to be arranging an appointment for a biopsy. Whether that will automatically get us access to an oncologist, I'm not sure?

I need to ask the Nurse.

Thank you for taking the time to reply..

[LisaC]

They just need a definitive diagnosis so they can plan the treatment, the hospital Lewis was at would have meetings with the royal free hospital who specialise in this type of cancer and they needed to know the type of cancer before they could plan treatment.

We did see the oncologist before the biopsy because Lewis was in hospital already being treated for an infection caused by the cancer and the biopsy happened a few days after this the results took about a week. 

[Skippy]

Dear Roas, I well understand your fears and that of your wife's. Perhaps informing you of my brother's first diagnosis at 74 he had no understanding of his findings, as he ate well, he had no real aches or pains, that prevented him taking his dancing classes 3 times a week, only seeing a dark thick green urine at the toilet. He did say his skin was "itchy" at nights in bed.  He must have had this tumour for quite a while, without any knowledge. Each person is different. Id say take this diagnosis day at a time. Many do manage to live with this cancer for a long time. His diagnosis was only found early because of his usual Warfarin blood test.

He ate his Creon with many nutrient blended shakes and ate small regular nourishing meals. Id say please take it day at a time. Thinking with a positive approach to the diagnosis. Every person is different. Many do achieve a lengthy good quality time after diagnosis.  My brother carried on enjoying his driving out days and walking out, visiting his family. His only block on his activities was the covid restrictions of the lockdown. He was urged by our family to focus on it all with positive thoughts. I can say any ailments (the 'odd' back pain swollen tum for 18 months+) was treat by a pareceptomol. He had digestive troubles after eating, a lot of wind in the time after, but it was managed by trials on his food intakes. He always kept his positivity.

I'm thinking of you and hope your wife copes with her ailments and take them on bit by bit. I hope you soon get all the information you need. As her carer, I hope too, you look after yourself. I'm sure you too feel everything she is experiencing. 

[Mary Lynn]

My heart goes out to your wife and you.  I'm in the U.S.....and my diagnosis sure was reached differently.  Had pains in stomach...had CT in emergency room.  Only told I had a tumor in my pancreas.  Next biopsy by specialist, appointment with oncologist (wish you could see mine...one of the most wonderful men I have ever met), then a PET scan and finally a diagnosis.  Stage 3 inoperable.  This was because of the size of the tumor and enchroachment on arteries.  So.....I started chemo (Forfirinox?) and no fun was involved.  By 8 wks my C19s were down to 12 from 79....and my Dr. said he had never seen a tumor shrink to much so fast...about half the size!!  I was lucky and my oncologist got me to one of the best pancreatice surgeons in the country who was only 65 miles away.  They had me continue chemo another 10 weeks then had chemo/radiation daily for five weeks.  A month of rest then surgery.  My tumor was in the tail so had Distal Pancreatectomy...two-thirds of my pancreas and spleen removed but....he did not need to take arteries from my legs because the tumor had retracted from the ones in pancrease!  Went through lots of side effects both before and after surgery and still dealing with some BUT...as of July 8 have been cancer-free for 2 years!!!  On ZenPep and insulin but every day my other issues are getting easier.  You need to know what stage the cancer is at before treatment can be devised.  Please take this info....the process...to an oncologist!!!!!  If talking to him would help you please let me know and I will give you name and phone number for mine...the man is an angel AND a saint!!  Anything I can do to help please let me know!!!!

Mary Lynn

[rogs]

Following on my from first post at the start of this thread - which described the unfortunate way in which my wife received the diagnosis of her terminal pancreatic cancer in June last year - I can now post that our  journey is now at an end. 
My beloved wife passed away peacefully in our local hospice on Friday, some 8 months after her diagnosis of advanced inoperable cancer. 
The journey has had its ups and downs of course.... 
Apart from the original surgeon who delivered the initial rather 'brusque' diagnosis, every other medical professional from the NHS we have encountered since has been wonderful. 

The hospital nurses are seriously overworked, but do try their best - against the odds. 

The specialist, district and palliative care nurses are truly magnificent. They are a very special breed of person.  I shall be indebted to them forever for their guidance, reassurance, and the application of  palliative care itself.

 

I digress. Following her diagnosis, my wife developed severe jaundice soon afterwards, cause by the growing tumour blocking the bile duct.

A stent was duly fitted, followed by a 4 day recovery as a hospital inpatient. 
'Bloods' were taken regularly after that, to see when  - or if  - some palliative chemotherapy might be appropriate? 
Of course being a tiny person (5'0" tall and less than 7 stone) and almost 80 years old didn't help with the chances of any chemotherapy being beneficial....
But eventually they did try a token half dose of 'Gem' (without the normally associated 'Cap' ). Just the one dose.  
After that, the 'bloods' were never good enough again, and subsequent infections required two 4 day stays in hospital -- one as a 'blues and twos' ambulance admission!
Eventually - around the middle of November - at a 'face to face' appointment with her oncologist - she was told that further palliative chemotherapy was not likely to be of any benefit going forward. 
In one way it was a relief to hear-- my wife didn't need to make the decision to stop - or not - herself.

After that we were in a world of good and bad days. The inability to digest food made the dreaded 'Fortisip' nutrition drinks her main form of sustenance.  
But some days were relatively pain free, and we even enjoyed some (very!) short walks along the clifftop (we live near the coast) . 
At the end of January things took a turn for the worse. My wife could no longer digest anything, and could just about manage to drink a little fluid. 
She soon began to vomit more, as the tumour blocked her duodendum.
Eventually, the vomiting became more regular and more bloody. Scary, but amazingly not that painful (she always felt better for a few hours afterwards).
Eventually on Thursday last it was felt she should be admitted to the local hospice, so that they could look at trying to control the vomiting better.
I went to see her Thursday evening. She was very drowsy, but pain free, and more relaxed knowing that nursing care was just a buzzer push away. (Not something that is always true in hospital at present, with their current staff shortages).  I told her I'd be back on Friday.
6.30 am Friday morning the phone rang. A hospice nurse told me that  Margaret had passed away peacefully in her sleep during the night. It was all over.

We had been 'an item' for over 50 years , and had been married for almost 49 of them. I shall miss her terribly.

 

Pancreatic cancer is well known as being one of the more 'difficult' cancers, and is a truly evil disease.
I am in awe of those who try and help -- the researchers, the doctors and nurses, and especially the palliative care teams.

Our journey is over. I wish those of you still on yours the very best of luck. 
There are some wonderful folk out there who are able to help.  

I hope you are lucky enough to find some of them along the way, as we did....

 

[Borobi]

I’m sorry to hear your news Roas. So few of the people who join these forums have a happy ending. My husband died 16 months ago, 20 months after diagnosis. We’d been married 42 years and he was 67. He died at home but with huge support from our local hospice. There’s many parallels in our stories. It was a strange time to cope with a death, with the lockdown restrictions. You’re starting on a long road, but it does get easier, although there’s lots of bumps on the way. Be kind to yourself and try and find pleasure in small things. Take care. 

[rogs]

Thank you for your kind response Borobi.  As you say, I'm just starting on a new road, which will be very different from the previous one!  

I'm just grateful that my wife was able to get the support she did from our local hospice throughout her illness. They've been wonderful.

At the moment, this house seems very big - and very empty.... It's a very strange sensation.

I suppose I'll get used to it - eventually?

Thanks again for your reply...