A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
scoobymandy
Posts: 20
Joined: Wed Jun 12, 2013 10:12 am

my husband of 2 weeks with weeks to live

Postby scoobymandy » Wed Jun 12, 2013 11:18 pm

Hi I am new to this website but feel that my husband (of 2 weeks) has been poorly treated by our hospital. A brief guide to what has happened.

My husband was complaining of a bad stomach last November he was fobbed off every time he went to the doctors, saying it was constipation. This carried on until Feb 2013 between then he had an ultrasound scan, x-rays, so on so forth, just saying blocked bowels and take laxatives and sent away. In February, he saw an emergency doctor who told him to go to our local hospital as they could hear no bowel movements he was given a BLOOD TEST as his amylase levels were to high he was in hospital for 5 days.

Whist there, they gave him a CT SCAN and he was diagnosed with pancreatic cancer. He was then seen by a Macmillan nurse and proceeded to be sent home with pain control and awaited an appointment with an oncologist. Finally, after 4 weeks+, an appointment was made, then another CT SCAN was asked for. By this time no, one had contacted us with any help or advice on what to expect. We eventually went to the appointment thinking positive that the news would be good HOW WRONG WERE WE!!! They said unfortunately, there would be no operation as the cancer had spread to the liver. They asked for a liver biopsy to confirm this but when went for this they couldn't see it on the ultrasound so they took the biopsy from the pancreas instead. After a month or so, we had another appointment with his oncologist as she said that it was confirmed that the cancer was from the liver. They offered chemotherapy only and gave him 3 to 6 months to live.

Obviously we were devastated. My husband is only 46 had a good job and loved life. We had nowhere to turn as no one contacted us after this we came home deflated knowing his time was limited. It took another 4 weeks before the chemotherapy was started and after his first one, things got bad. His liver function was poor he went very yellow and ended up bk in hospital having a stent put in his bile duct. They then said he may need another in his duodenum later on .

When he recovered and his bloods we all ok he started chemo again everything seemed good he was eating and leading a normal life but with pain. After the 3rd chemo, he had a week off due to the fact we got married (this was 2 weeks tomorrow).

On the 6th June, he woke up was sick and had a pain in his lower left hand side of his stomach he phoned the chemo unt. They said he would be ok as it wouldn't have been the chemo as he hadn't had it for a week. He drove to the hospital in pain, was seen by their doctors and they said he pulled his stomach muscles and he would be ok to have the session of gemcitabine, so he did. After that he couldn't drive; we had to go and collect him and he could hardly walk .

Later that night, at 815, we called an ambulance as he was screaming in pain. We got there at 945 was told no room at present had to wait in ambulance for 45 mins then he was taken in to a side room. He contacted me in the morning at 640 to say he had still not been seen when I arrived there they had put him in ACUTE MEDICAL UNIT and was awaiting a ct scan again.

That afternoon, they moved him to a ward still awaiting results. I left at 5pm that evening; he couldn't sit comfortably the nurse had to write all his med down as that wasn't done. She started to proceed to help with the pain.

On my way home I had the call that would change everything!!!!

My husband phoned me to say I had to go back quickly, as the surgeons wanted to see me -it was bad news. They told me he had to have an emergency life saving operation that night. They found that most of his small intestines had died. Obviously we were in shock. Our lives were turned upside down this was gonna be the longest night of our lives !!!!!

He made it through the op but has now got a feeding tube in and a colostomy bag. He can't eat normal food ever again. He has a drain straight from his stomach so can only sip fluids this is not what we would have expected or wanted for him ever.

We are still not sure and we have had so many different reason why this would have happened. They have told us on several occasions it wasn't the cancer and now they say it was. They told us its because the tumour had got bigger and it pressed on the blood vessels which resulted in death of the bowel and intestines in 2 days, which we find hard to believe. He will have palliative care at home and has only a few weeks left to live. We are devastated and feel we have been let down by everyone who was supposed to be looking after him. We asked for a second opinion but they sent his records to the wrong hospital so this was not possible. His oncologist admitted that she failed to look at his ct scan and reports properly to see if the cancer had spread further than his liver. She couldn't even tell us right where his tumour was in his pancreas she had to look that up .

Today we have found out that the head of digestive diseases was never told any more about my husband when he was diagnosed in February when he should have been and he even recognised him today and said he couldn't understand why he was never informed.

We are hoping to get my husband back home this weekend coming so he can spend the few weeks he has left with us and the 4 children. I am completely lost and devastated that this could of happened so quick and every ct scan and x-ray ultrasound he has had has never picked anything up. I am angry, hurt, lost and confused and we will have to watch him die in the most painful way.

Pancreatic cancer is cruel and hurts so many people.

Jwilson
Posts: 100
Joined: Sun Jun 09, 2013 9:52 am

Re: my husband of 2 weeks with weeks to live

Postby Jwilson » Thu Jun 13, 2013 12:07 am

Mandy, oh my goodness such a traumatic time you are having! Pancreatic cancer is, I know a very very rapid and aggressive type of cancer and from what I read, most people are beyond help by the time they present to the doctor with symptoms. My husband was being treated for diabetes and it turned out to be PC. This forum thing is fantastic and proffessionals who run it will email you so you need not go through this alone. They are really supportive and give brilliant advice. I hope you get lots of support from everybody.
June

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: my husband of 2 weeks with weeks to live

Postby Sueba » Thu Jun 13, 2013 8:01 am

Mandy
I am so so sorry to hear about how you and your husband are being treated, 46 is no age at all.
It truly is an awful disease and unless you are going through it yourself no one understands what you are going through.
Have you thought about contacting the Macmillan nurses? I have heard good reports in them helping with pain relief etc

This forum is a fantastic resource, rant on here whenever you feel you need to there will always be someone on here who knows what you are going through, plus there are the fantastic nurses who always offer their full support and advice.
Sue
Xx

scoobymandy
Posts: 20
Joined: Wed Jun 12, 2013 10:12 am

Re: my husband of 2 weeks with weeks to live

Postby scoobymandy » Thu Jun 13, 2013 8:24 am

Thanks for your kind words we have had Macmillan involved at the start where supportive but we hadn't heard anything from her since March this year until my husband demanded to see them in the high dependency unit 3 days ago we have only ever seen our nurse on 2 occasions even the oncologist requested that she contacted us but they never our lives are turned upside down as we feel he's been left to die
:(

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: my husband of 2 weeks with weeks to live

Postby MSH » Thu Jun 13, 2013 9:56 am

What an awful story, it certainly seems that your husband has had poor and uncoordinated care. That should improve with palliative care which is usually superb. It sounds likely that this was caused by vascular complications from the tumour, though it's a bit surprising after three chemo cycles.

Was your husband treated at a regional hepato-biliary centre and what was his chemotherapy? A prognosis of 3 to 6 months would more suggest a Gemcitabine based treatment rather than Folfirinox, which has been shown to give better results.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: my husband of 2 weeks with weeks to live

Postby Cathy » Thu Jun 13, 2013 10:20 am

Hi Mandy

I'm so so sorry to hear of your and your husbands awful experiences.

As you will probably have realised, this forum is fantastic, full of supportitive people and good advice and always a willing ear if you even need to rant.

I do know that Macmillan nurses vary in the services they offer according to where you live (because of resourcing I believe). I know from this forum that some receive a very good service from them, and that they can help provide some coordination. My own experience in my area has been that they tend to provide care only if the GP can't or with end of life stuff - so in any case, they ought to be providing you with help and care now. Have you had a chat with them yourself since your hubby got in touch recently?

Take care

Cathy xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: my husband of 2 weeks with weeks to live

Postby J_T » Thu Jun 13, 2013 2:37 pm

Oh Mandy, what a journey you have been on! I can relate to a little of it, in that initially we received, no information of where to go/what to do next and I found that quite appalling. Fortunately, following Ray's stent things seemed to turn around and we have had good care. You still have to be pro-active though, suggesting things to THEM rather than the other way around.

I hope you have diaried all the events for future reference. It sounds like the whole event has been mishandled and questions should be asked, if only so that no other patient has to suffer such horrendous 'care'.

Your husband should not be suffering, go and bang some desks, at the GP, hospital, anyone who will listen. This should not be happening!

Take care
Julia

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: my husband of 2 weeks with weeks to live

Postby Bee » Thu Jun 13, 2013 7:36 pm

Hi Mandy,
You have had such a horrendous journey and my thoughts are with you and your husband. This is such a cruel disease and I really hope your car package now improves, although this will be no compensation for the bad experience you have had. As the others have said go stamp your feet and demand you get the care you deserve!!
I hope to continue to use this forum and get support, take care

Bee x

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: my husband of 2 weeks with weeks to live

Postby karen17 » Thu Jun 13, 2013 10:30 pm

Hi Mandy,
What a dreadful dreadful story! My heart goes out to you all. I wont repeat all the good advice already given from the forum family, just to add that district nurses are generally a brilliant resource as well as Macmillan and can signpost you in the right direction. They can usually be found through your Gp. Call the specialist nurses here too. I'm sure they will be able to give good advice. Everyone is right in saying you need to be strong and get out there demanding better care.
Thinking of you
Karen xx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: my husband of 2 weeks with weeks to live

Postby louiepc » Thu Jun 13, 2013 10:42 pm

Dear Mandy

What an absolutely awful time you are both having. I am so very sorry for your husband's diagnosis. You are right, pc is such a cruel disease, it makes me so angry.

Sadly it seems that the hospitals let themselves and the patients down time and time again. One hand doesn't know what the other is doing.

I hope that you get your much deserved help that you both need over the next few weeks. Don't be afraid to ask questions, even demand action if it helps you. Be firm, polite, but say what you want or need to help you and your husband.

Good luck and best wishes.

louie x

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: my husband of 2 weeks with weeks to live

Postby PCUK Nurse Dianne » Fri Jun 14, 2013 9:29 am

Hi Mandy,

I am really sorry to hear your story, devastating. I would be more than happy to talk to you if you would like to call me today and I can hopefully help to sort some things out for you. Please feel free to call me on the support line ( 020 3535 7099) or if you would prefer to email me on the support line - support@pancreaticcancer.org.uk

I hope that I may be able to offer you some support and advice.

Regards,

Dianne
Support Team

scoobymandy
Posts: 20
Joined: Wed Jun 12, 2013 10:12 am

Re: my husband of 2 weeks with weeks to live

Postby scoobymandy » Sat Jun 15, 2013 5:17 am

Thank you and I will contact you shortly. Just to update you, my husband was bought home via ambulance yesterday (Friday), all wired up and plugged up, as they say. His care package will not be starting till Monday of next week. We have already had district nurse in with regard to his pain relief and feed. He has a syringe pump for this. As I can read from his notes, this was caused by adhesions more than the cancer but they seem to think it was the chemo that aggravated it; which pressed on his blood vessel that killed his small bowel and intestines. It is hard to see someone that was so active even struggle to sit up now. Questions will be asked and we better get answers.

scoobymandy
Posts: 20
Joined: Wed Jun 12, 2013 10:12 am

Re: my husband of 2 weeks with weeks to live

Postby scoobymandy » Sat Jun 15, 2013 5:19 am

Sorry for mis spellings too

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: my husband of 2 weeks with weeks to live

Postby Cathy » Sat Jun 15, 2013 10:33 am

Hi Mandy

Don't worry about typos. Glad your hubby (what's he called?) is back home and I hope feeling comfortable. Are you getting help with his care over the weekend? You will need support yourself as well.

Just to let you know the nurses on here aren't around over the weekend so you might need to wait to Monday to chat to them. They are fantastic however so do contact them I when you need to and post on here when you need to. You'll get lots of support from your forum family as well.

All the very best

Cathy xx

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: my husband of 2 weeks with weeks to live

Postby PCUK Nurse Dianne » Tue Jun 18, 2013 3:44 pm

Hi Mandy,

I will email you independantly of the forum and certainly would be available to speak to you at your convenience. I am hoping this has been supportive for you having this great 'forum family' sending their love and wishes.

Certainly you have had a very difficult time and a long road ahead, however we are all here to support you as needed.

Dianne
Support Team