Devastated

[Bec76]

My husband who is 38 has been diagnosed with pancreatic cancer in January this year. It all started back in November when he was diagnosed by GP with gastentoritis, given ompeprazole but it didn't clear up. He then went back to his GP and they tested him for H Pylori which was positive so was given triple therapy (2 antibiotics and ompeprazole) he was told this would wipe him out, leaving him drained of energy and with no appetite, which it did. During this time he was having stomach pains, aches and feeling nauseous which lead to weight loss. My husband was still feeling the pains which started becoming excruciating down his right hand side, back and ribs so we went to A&E where they kept him in suspecting gallstones. They carried out liver function tests which were elevated and an ultrasound but it showed no gallstones. The doctors kept him in for 5 days with no further tests but an urgent referral for an MRCP. He was discharged on 16 December still in pain and none of the wiser. Christmas came and went, still in excruciating pain, rapid weight loss and nausea. At this point my husband demanded going private for the MRCP but on ringing the hospital they said the referral is there but no appointment had been made for him, then surprisingly they had an appointment that Wednesday morning that was a cancellation!!! We went for the scan and he was called back in for a CT for that Friday afternoon. Nearly a week went by and my husband was in total agony so we rang his consultants secretary to demand something be done. We were then told to go up to the local hospital where we were told the news he had a mass on the body of the pancreas and it's caught early (IF it was cancerous, still not sure), there are some shadows on his liver but nothing to worry about it's from an infection he had back in December!!?? The doctor then rang [name removed -moderator] hospital and supposedly faxed up all relevant info to get it sorted within the next 2 weeks. During this time we had appointments made in [name removed moderator] all set to go on the Friday. That week we had phone calls from the cancer specialist centre to meet an oncologist on the following Monday!!! Then, told to go to our local hospital for a liver biopsy on the Thursday prior [name removed moderator]. Whilst my husband was on the ward recovering from his biopsy his consultant rang his mobile to ask him to cancel [name removed -moderator] there and then!!

Since then we learnt that he was diagnosed with pancreatic adenocarcinoma with liver mets, he was offered palliative chemo of standard gemcitibine. 3 weeks on 1 week off. He underwent 2 weeks but then his platelets were low so an extra week off, we commenced again but after treatment he became very jaundiced, his bilirubin levels rose from 50 to 200, we were not made aware to contact the oncologist immediately but we mentioned it to the nurse who just said if your worried ring chemo team for a blood test??? At what point do you act upon it?? My husband was admitted for a stent but it couldn't be put in as the ducts that are blocked are in the liver and not the common bile duct. We have now been told that no other treatment is available as most of the liver is now diseased and not functioning properly. Has anyone heared or tried tomotherapy or miicrosphere?

This has totally ripped our world apart, for someone previously in good health and so young to be struck down by this terrible illness is so unfair!!!

Bec

[Nardobd]

Oh Bec, I'm so sorry to hear your news.

Is the hospital your husband is attending a Specialist Centre (see here for details: http://www.pancreaticcancer.org.uk/information-and-support/your-local-specialist-centre). If not, you should ask that he is referred to the local Specialist Centre straight away.

Within the NHS one often has to shout (sorry - SHOUT!!) to get anything. That doesn't mean you should be rude but keep asking awkward questions and assertively suggesting that something should be done. It may mean going to your local Patient Advice and Liaison Service (PALS) and asking them to intervene - there is usually a PALS team attached to each hospital trust, so ask about this.

So, for the moment, ring the oncologist and ask something like "so, the stent is a no-go, what are you going to do about the jaundice?". If he says nothing, then say that this approach is "unacceptable". The trick is to be firm but polite.

Insist that your husband is allocated a CNS (Clinical Nurse Specialist), most of the Specialist Centres have these and they are often very useful: obtaining urgent appointments (I rang my hubby's at 2:00 on Wednesday last week and got in to see the consultant on a 3:00 appointment!). The CNS will also be able to explain things in more down to earth terms than the doctor.

We've never tried tomotherapy or microsphere but these are therapies you can ask the consultant about. Do be wary, though, of investing in therapies not available on the NHS - this can cost an arm and a leg and in some cases (not necessarily with these you have mentioned) are simply people trying to rip-off the desperate. Always consult your husband's medical team before embarking on a therapy - even if you don't take their advice, another opinion can't hurt.

Many thoughts of comfort and strength...keep us up to date with any news.

Nicki

[Bec76]

Hi Nicki

It all taken place at our local general hospital, scans, blood tests, stent attempt. Our oncologist is based at [name removed - moderator] (south Wales) which is a general cancer hospital. It seems that basic chemo is all they would try and they said the only thing going for him at the time was that he was otherwise in good health. You read so much online about combination therapies but the only 1 thing offered was trial which involved injection prior to chemo, but because his liver enzymes were ever so slightly too high they refused to give it.

We asked about the jaundice and told 'we we have run out of options'. So basically see you in 4 weeks to see how you are!!

I have got in touch with bupa hospital in London who have asked me to forward all info and current scans etc to see if there is anything they can do.

You're right there though you do have to shout to get heard, if my husband hadn't insisted on a scan it could have been only now we have found out.

Xx

[lynbo]

Hi Bec

Your story is so similar to mine, Nicki has given good advice there, don't let them leave it with

"we have run out of options"

Mmmmm keep on, and if not - contact PALS, let us know how you get on

Xxxxxx

[sooty]

Hi Bec, I am so very sorry to read about your situation, it is so very similar to mine, if anything I have posted might help please read it, I am under Carers and friends under the name of Sooty.My best wishes to you both , Sooty

[Bec76]

Hi Sooty

I read that your husband had a stent fitted through the rib cage? Was the blockage in the common bile duct or the bile ducts of the liver? They told my husband that they couldn't do it that way due to it being the tumors on the liver causing the blockage.

Bec

[sooty]

Hi Bec, well they initialy tried to do it with an endescope but the blockage stopped this, so a few days later a small incision was made through his ribs through his liver and into the bile duct, this worked great for about 2 weeks with the jaundice going, unfortunatley the stent dislodged and has yet to be found !!. Hope things go ok for your husband. My thoughts are with you, I know exactly what you are going through and all I can say is keep asking/nagging/phoning/ anything that you can to get information and help.

[Bec76]

I am so sorry to hear that with your husband, hope it's not causing too many problems for him at least he has had some relief from the jaundice. All we had today was a letter from hospital to attend clinic in a months time, what a joke!! The whole situation has been so badly handled from the very start!!

[lynbo]

Bec

Our stories are so similar - feel free to contact me if you want x x x

[Bec76]

Just to say after a nice relaxing weekend with my husband and son, we travelled home on Monday when my husband went to bed, became weak and confused, my husband passed last night peacefully in my arms. Just 2 months after being diagnosed his battle ended and this horrible cancer took the most amazing man from myself and our 3 year old son. So upset and my life is now so empty. Will always love you Andrew xxxxxxxxxx

[AnneD]

Dear Bec,

I'm so sorry to hear your dreadful news,

it all seems to have happened so quickly.

Sincere condolences to you and your son at this sad time.

Anne

[louiepc]

Dear Bec

I am so very sorry for your terrible loss.

My thoughts and prayers are with you and your little boy at this awful time.

Louie xxx

[rachelqt]

Dear Bec, I am very sorry to read about your Husband. So very sad. You and your son are in my thoughts and prayers..Rachel x

[lynbo]

Dear bec

I'm so so sorry to hear that your husband has passed away, my love to you and your little one xxxxx

[Steve983]

So sorry for your loss Bec.

[millyjo]

Hi Bec,

Please accept my heart felt condolences.

Such a cruel and unforgiving disease.

My thoughts are with you and your family.

Regards

Millyjo

[CFF]

Bec, that is such terribly sad news. Thinking of you and your family xxx

[Bec76]

Thank you everyone, it's so shocking and feels so unreal yet our home feels so empty without him!!! He fought it until the very end and he done me proud how he managed to live each day with the knowledge that this cancer would take him way to soon. Love you Andrew, missing you so much xxx

[laura]

dear becs, what an awful shock for you, you must be wondering which way is up, your little one, will hopefully, give you good reason to get up in the mornings and face the day, my first husband died in 1963, from a brain tumour, i had three little ones and was 23 yrs old,it seems aeons ago, so cant give you any advice, im sure you will find your own way of coping, do hope you have some good family and friends around you, my sincere condolences, love laura xx

[millyjo]

Hi Bec,

So sorry to here of your sad and sudden loss.

Such a young age, so tragic.

No more pain and suffering for him . . . . heartbreak for you and your family.

My thoughts are with you.

My thoughts are with you.

Kind regards

Millyjo

[sooty]

oh I am so very sorry Bec, my thoughts are with you and your child, try to be strong.

[PCUK Nurse Jeni]

Hi Bec,

We are so very sorry to hear about the death of your husband, and so quickly. It is great that you managed to have a good weekend away with him and your little boy.

Please accept my personal condolences as well as those of the charity at this sad time. If we can help you in any way, do not hesitate to contact us.

Kind regards,

Jeni.

[Bec76]

Thank you all x. This is such a difficult time and I cannot get my head around it. I have asked that if people are going to make donations at the funeral that it comes to pancreatic cancer uk as there needs more funds and research into this specific cancer to stop young and old peoples lives ending too soon x