More than just one victim

[Tony]

Hi there,

I thought I would give a little on my story as I felt the need to put pen to paper. I feel somewhat of a fraud as this isn't really my story - it is that of my partner. A few weeks ago her father was admitted to hospital at her insistance - she's a Paramedic and drove him herself! He was suffering uncontrollable pain and constipation. To cut a long story short, he was discharged after two days with constipation. She put up a real fight with the consultant who conceded a further night in and a CT the next day. Two days later - stage 4 Pancreatic Cancer, 2x3cm tumour, secondaries in the liver. She knew, as did her mum who was a nurse for many years, but to hear it said is just a shock and very surreal.

My anger with this nasty little disease is the number of victims. Sure, he is the one with the illness here and let's not lose sight of that, but my partner has been hit really bad as has the rest of the family and in turn seeing her pain hurts me and makes me angry at it. He's 58.

Does anyone have any realistic idea of timescales here? We are thinking 2 to 6 months. He has not had a bowel movement for three weeks now and because of the discomfort is eating very little indeed. Taking Oromorph daily. The biopsy missed the cancer and so we now have to go back again this week for this ordeal and another 10 day wait for results. The constipation discomfort is probably worse than the disease itself. We are thinking a blockage somewhere.

He's tired but still fairly active. Refurbishing his boat seems to have given him a mental reason to live but a day of activity can take its toll at night or the next day.

The family aren't really 'talkers' which is worrying me. They can be very matter of fact about the disease and its consequenses but just will not discuss their own feelings. As a pretty emotional person myself it's like chalk and cheese and very hard for me to understand or deal with.

All I can do is be there I guess and do the best I can.

[Ellie]

Hi Tony

Welcome to the forum. You are not a fraud to post on here - this forum is for anyone affected by PC, and you are affected by seeing your partner and her family go through the anguish of seeing their loved one suffer. It does make you angry - I'm sure each and everyone of us on here has been angry at this disease at one time or another. I hope it's helped you to get a few feelings off your chest by writing them down. It must be very hard for you not to have your partner talk to you about it but I suppose everyone is different. As you say, you are there for her and that's what counts. The forum is here for us all to question, complain, cry, shout....whatever. I hope you will find it helps to be in contact with others going through similar a similar experience.

As for time scale......just read a few stories on this forum and you will see that no one can give an accurate time scale. Some people survive less than expected, but some live so much longer. My own husband was given 6-12 months in April 2009 and is still fighting. My husband has also suffered so terribly from constipation over the last few years. Morphine, unfortunately, just makes things worse, so I do hope that your father in law gets this sorted out really quickly.

I hope you get some answers fairly soon. Keep in touch and hope it helps to be in contact with others on here.

Best wishes

Ellie

[PCUK Nurse Jeni]

Ho Tony,

Sorry to hear the story so far.

As per the top of each forum, we have a support service for any medical queries you may have. You can access it by emailing support@pancreaticcancer.org.uk.

In the meantime, the constipation needs sorting as it is not reasonable for a person to be constipated for 3 weeks.

Has he had an enema? Or suppositories? He would also need some medication and a stool softener to help.Oramorph of course, will add to it.

Hope it gets sorted soon. Has he been offered chemo? If he is going to be, then he may be eligible for the Telovac trial. Email me at the above for more information.

KR,

Jeni.

[jadco]

know exactly how you feel. There is a tel. number for the macmillian nurses on their site and they can be helpful regarding medical details as well. hope this helps you x

[Tony]

Back in hospital last Friday.

Yesterday morning we thought it was the end. Complete agony after a horrendous night.

Then they gave him something to combat the sickness and a morphine syringe driver. What a difference.

I know this is only masking darker things going on but it has brought a sparkle back into the (dilated!) eyes.

We're into the end game now I think. Biopsy again tomorrow but the deterioration is unreal.

[Ellie]

Sorry to hear things are not so good, Tony. At least your father-in-law has got better pain relief now.

Can't be easy for you seeing your partner and her family go through such awful times.

Ellie

[millyjo]

Hi Tony,

Sorry to here the news about your father-in-law. It is a hard thing to take onboard, but it is good that you are supporting your partner.

Don't have to feel guilty about coming on here as you have to keep strong for her and yourself, and this forum certainly does that as I know onlt to well.

I found writing on here was very theraputic amongst otherthings.

Thinking of you at this difficult time.

Millyjo