Our Story

[boa]

I have been following comments on this board since about May 2015 and have spoken to the excellent nurses a few times. I have found it very supportive to see come on here and I thought as Didge mentioned 'silent' members I would at last post as I probably need the support of people here.

Or story begins probably in November 2014 and will end soon. In November 2014 my husband, Stephen, was diagnosed with diabetes. He wasn't a typical Type 2 diabetic but he did the sensible things and got fit and cut down on food. But around February 2015 he developed stomach pains and this was initially thought to be due to some of the medication he was taking for the diabetes. However, in March his urine turned dark, stools were pale and floating and there was a hint of jaundice. Our GP was very good but there was a frustrating wait for a CT scan so we did that privately. But once the scans came back to the GP Stephen was seen at the local hospital to try place a stent in the bile duct. That was not successful so he was referred within a week for a Whipple. He recovered well from that and was then placed on a gemcitabine regime which he tolerated well. But in July a scan showed the cancer was back - it had been in two lymph nodes.

In August he had a Hickman Line fitted and mid August began Folfirinox. In the meantime after the surgery his blood sugar had been OK but just prior to Folfirinox the GP had been trying to get it down with medication. After the first Folfirinox he ended up in hospital with high blood sugar and had to start using insulin. During Folfirinox he was very tired but a scan in November showed that the cancer was being contained. The day after we were told this he was hospitalised with an infection for seven days and then re-admitted again after five days with a very high temperature. During this period he was very tired and after the second hospitalisation really slept a lot of the time.

We saw the oncologist at the regular appointment about two weeks ago and Stephen's stomach was very swollen. We suggested ascites but were told it was not. However, three days after this he was back in hospital and eventually saw a GI Consultant who diagnosed ascites and made arrangements to have the fluid drained off. He had a further scan and this showed that the portal vein was blocked and the bile duct (which had been reconstructed during the Whipple) was partly blocked. We saw the oncologist yesterday and saw the latest scans which show aggressive growth of the cancer.All treatment for cancer has stopped.

He is still in hospital but arrangements are being made for him to move to hospice care. This is his wish. I think he feels safer if trained people are around. He has declined greatly and now really only sleeps although today I took him out to look at the sea in the car for an hour. Up until a few days ago he was listening to music but says that he isn't interested now. He was always a very active person so this is doubly hard.

I'd welcome any thoughts and am thinking of all of you going through this or have been through it.

Catherine

[Guest]

Hi Catherine.

Sorry to read your post here, but I hope you feel a little better for getting it out.

I lost my Dad last April after 14 short months. Dad had complications towards the end which hastened things quite a lot.

My advice to you now would be to make sure your husband has the best possible care. If you doubt anything, question it. Anything at all. If you want to ask the simplest thing, but don't feel you should, ask it. Ask anything and everything.

These are the worst times, but you just have to stay strong, and love your husband.

Please post on here any questions you have also. Someone on here will have the answer/advice

Leila xx

[sandraW]

Catherine,

I am so sorry to hear your story, very similar to ours in many ways. I lost my husband Trevor in April, he too had successful surgery, his cancer was in the tail of his pancreas, he also had a rapid decline at the end and died very peacefully in our local hospice.

I still don't know if Trevor gave up at the end, he had remained so positive all through the 21 months of his illness, he fought every inch of the way. They had told him he only had a matter of weeks, he died 10 days later. or wether it was the disease that just overwhelmed him. He also was very active, so I understand how difficult it can be for them, when their life changes so much.

It is so hard, but I just wanted to make it the easiest for Trevor that I could, you just get the strength to carry you through from somewhere.

I hope you have some support from family and friends,to help you on this journey, thank you for sharing your story and please let us know how Stephen is doing, sending love and strength your way

take care sandrax

[J_T]

Don't EVER let the thought that our loved ones 'gave up' cross your minds. They don't. They do their damnedest to stay around with their families. There comes a time though, of acceptance of their situation. I am in awe of them. Never mind coping with the vile disease they have, we have no idea of the head games and their inner most thoughts, many of which they protect us from.

We don't give up on them, they don't give up on us.

boa, so sorry to hear that your husband is suffering so but what a wonderful thing to take him out to watch the sea. I did that with my husband but he was relatively well then, he didn't move out of his bed for the last 5/6 weeks of his life. It's such a horrible cancer. You are doing all the right things.

Much love to each and every one of you x

[Guest]

( J_T, couldn't have said the first paragraph better. Absolutely completely agree )

[Ant11]

JT such powerful words which says it all. xx

[boa]

Many thanks for all your support. It helps to know others understand.

[Didge]

Catherine, glad you have posted and hope you will feel the support is helpful. Sometimes it is just enough to be able to vent in the small hours or when things seem especially awful, to people who understand what you are going through. The decline with PC is often rapid at the end. My Rob also had a successful surgery (like Sandra's Trevor, in the tail) but it had been in 8 lymph nodes that they removed and he was lucky to last 1 year and 9 months after surgery - but at that time when he was told it was only weeks, he had already begun to be very frail and although he did live 6 weeks more he was increasingly frail and in pain. I would say this though, that even at this stage some days are often better out of the blue, so he may again listen to music or do other things which at the moment he has no interest in. During this final decline, Rob managed a full day at Silverstone although that was the last outing he had and he had only a handful of days at home after that. Lots of love, Didge x

[boa]

Didge thanks for writing. We are a bit frustrated this end because we are in Scotland and it is still a holiday tomorrow with many of the hospital staff still off. Normally, having been told there is no more oncology can do the palliative team would be involved at once. However, on Thursday when we were told the news and the palliative team were called they were short staffed and couldn't see Stephen then. Stephen's tumour was in the head of the pancreas. It is doubly sad because his brother died in 2014 of the same disease. Stephen had the BRCA test but was negative. He is 67. I found it helpful to post and get support.

[boa]

Just to bring you up to date, Stephen was transferred from the hospital he was in to the local hospice which in our case is based in the local hospital. He has seemed to settle in well. He didn't want his lunch but asked for some cheeses and biscuits which were nicely served and which he enjoyed. His sister and brother in law are visiting me which is very good as they are practical helpful people. However, this is a difficult journey for us all.

[sandraW]

Catherine,

Glad to hear you have support from family members, and glad Stephen is settled, and hospices certainly are amazing places

You are right the journey is difficult, painful, and very scary, and every journey is very different.

We all seem to just summon up the strength from somewhere to cope, not that we have an choice really we just want the very best for our loved ones. Thinking of you all and sending love and strength to you all, take care sandrax

[Didge]

Hi Catherine, I am glad Stephen has settled in well at the hospice - my partner too was in a hospice ward in a hospital. Also glad you have some in laws to help you. I imagine being in Scotland, snow will rear its head too at this time of year, so hope travel doesn't become difficult too! Love Didge x

[boa]

Stephen died at 2pm this afternoon. He had declined since going into the hospice very quickly but I think what really happened was that in hospital previously he put a brave face on things and did more than he was able to and in hospice he just went with the flow. The hospice staff are brilliant and so caring. To those of you who are still on this journey I send you my love and I hope that sooner rather than later we can know more about this type of cancer and reduce the death rate.

[Guest]

Catherine,

I am so very sorry to read about Stephen. My thoughts are with you.

Leila x

[WilliamS]

So sorry for your loss. I hope memories of your happy times together will see you through the next few days and weeks. Thoughts are with you and your family.

[jay]

I am so sorry Catherine

Love Jayne

X

[Sueoliver]

I am so sorry Catherine thinking of you at this very sad time.

Love Sue x

[Didge]

Catherine, so sorry to hear the news. Sending you lots of love xx

[sandraW]

Catherine,

I am so sorry to hear of the loss of Stephen, sending you love and strength for the next steps on this truly horrible journey take care sandrax xx

[PCUK Nurse Rachel C]

Dear Boa,

I am so sorry to hear this sad news.

On behalf of everyone at Pancreatic Cancer UK I would like to offer our heartfelt condolences. Thank you for sharing your and Stephens story.

Our thoughts are with you and your family during this difficult time.

From all the Support Team

Rachel

Pancreatic Cancer Nurse Specialist

Information and Support Team.

[boa]

This will be my last personal post but I'll pop in from time to time in case I can help.

It was Stephen's funeral today and my brother in law led it with three friends saying something about him. Our music was from a Gilbert and Sullivan opera which we both liked. Although we do not follow a relious faith Stephen's niece sang 'God moves in a mysterious way'. His sister played the organ. It was a very fitting celebration of a life cut too short.

I feel in a bit of a parallel universe but take heart from those of you who have continued to live life well after the loss of your loved one.

I send my love to you all.

Catherine

[sandraW]

Catherine, it sounds a very special celebration of Stephens life , one that he would have loved, I remember feeling how much Trevor would have loved his send off and many friends and family said the same. its the last thing we can do for them.

I know Trevor would have wanted me to get on with my life, but its hard sometimes, friends and family rally round but then they get on with their lives, which is totally as it should be but it can be lonely especially in this miserable weather.

Take care and come back and see us, the more there are the more support we can give sandrax xx

[Didge]

Glad the funeral went well. There will be hard times ahead, but make sure you plan some nice things for yourself even if you don't feel like it. I always feel that the bad times make the good times feel even better. Tomorrow will be the 27th anniversary of my first husband's death from cancer at 37. Just one week later our second granddaughter is due. There is always happiness to be found among the sadness. Stay strong! X

[allyc1]

So sorry about your loss, i lost my dad in Nov 15 so I know what your going through.

Stay strong

Alison xx

[Proud Wife]

Hello Catherine

I'm new on here and have only just read your story. I am so, so sorry for your loss and wish you all the possible strength for the future.

PW xx