Pancreatic cancer or bile duct cancer?

[belgrade]

Thanks for your response Cathy. Dave is still poorly but has improved since the weekend and is now having good care in the palliative care unit. They are going to tweak his medication to try to manage his pain and sickness more effectively. Unfortunately he has now developed ascites but I don't know if this is due to the spots in the liver or the lack of protein as he hardly eats a thing and also has cachexia. He really hasn't had a single piece of good fortune since this nightmare began. To top it all my 87 year old mother has also been admitted to hospital with pneumonia. I have to say my endurance is now being stretched a little too far!!

Hilary

[Slewis7313]

Hilary, it is unbelievable how life kicks you when you are down. To have to deal with problems with your Mother whilst looking after Dave must be such a drain. I am sorry to hear that Dave has had no positives in his journey with this illness.. As far as treatment goes, mine has been exclusively in Swansea from the outset of my illness and I can fault absolutely nothing in the way I have been looked after. My GP referred me to a specialist after 2 weeks of stomach discomfort (though I had also lost 2 stones in as many months) and I went through the system at a more than acceptable pace until final diagnosis and treatment. If you are local to Swansea and in need of a little support (and tea) I can recommend Maggies who have been amazing as far as the psychological aspect of our experience is concerned. We are there tomorrow to say goodbye to the Manager (Debbie) who is leaving on Friday (she was a major positive influence when I was at a real low in the early days).

I really hope you all see some positives soon.

Take care

Steve

[Cathy]

Hi Hilary

What a terrible time you are having.

I do hope you ARE getting some support - you must be exhausted poor thing.

It sounds as if Dave is in the right place and with people who will be able to help with his symptoms. I really hope that both Dave and your Mum start to feel better soon.

Cathy xx

[MisterM]

belgrade wrote :

> Hello all,

> I read the posts every day and have been encouraged to see how well many of

> you and you loved ones are doing. I too, have learned so much about this

> insidious disease and the need for improved funding to raise public

> awareness and fund research. I thought I would provide an update on my

> husband's situation. Dave was referred to the cancer hospital in XX

> and was due to start chemotherapy this week. Unfortunately, his condition

> has deteriorated and he was admitted to our local acute hospital 2 weeks

> ago with sickness and dehydration. A syringe driver was fitted in order to

> deliver anti-sickness medication and pain relief more effectively. However

> he developed an abcess in his arm following re-siting of the syringe driver

> which led to a severe infection which he is currently battling. He has now

> been referred for palliative care at a small unit near us. It is almost 5

> months to the day that he was first admitted with jaundice, mis-diagnosed

> in XX, referred to xx, then xx where he was due to start

> chemotherapy this thursday. Apart from a stent insertion he has received no

> other treatment and the care he has received must now be questioned. I

> believe there is a vast difference in the management of pancreatic cancer

> in different areas of the UK and this situation must be addressed in order

> to give all patients a fighting chance with this disease.

> Hilary

Hilary, I am still furious that it was 79 days from diagnosis before anyone actually treated my Dad's cancer (not just his symptoms). You've had to wait almost double that, it's so frustrating. I hope things start to improve for you guys soon. Best wishes.

[J_T]

Hilary, I read your very sad news on another thread. My thoughts are with you at this very difficult time.

Much love

Julia x

[KATB]

Me too. I am so sorry to hear your news and I'm sending much love.

K

x

[Cathy]

Hi Hilary

Like Julia I spotted that you had posted that Dave had passed away and I was so so sorry and saddened to read that. I know you had a torrid and frustrating few months trying to get treatment started - it really shouldn't have been like that.

Just to let you know we are thinking of you at this very sad time.

Hope your Mum is on the mend?

Lots of love

Cathy xx

[belgrade]

Thankyou for your kind messages of sympathy. Unfortunately Dave never really responded to the antibiotics and his condition worsened during the latter part of last week. He deteriorated even further over last weekend and unfortunately passed away peacefully late yesterday afternoon. The care he received in the palliative unit over the last week was excellent and I will always be grateful to the medical and nursing team who made his last days painfree and as comfortable as possible.

Take care all,

Hilary

[karen17]

Hi Hilary

Like the rest of the "forum family" I am so saddened 2 hear your sad news and hope you have a good support network around you.

Sending a virtual hug

Karen xxx

[Slewis7313]

Really sorry to hear of your loss Hilary.

My thoughts are with you and your family.

Steve

X

[sooty]

So very sorry to hear about your husband, your experience mirrors mine (my husbands pancreatic situation) Bless you xx

[Bee]

Hi Hilary,

So sorry to hear of your loss, you had such a difficult time, I hope you are surrounded by love and support,

Thinking of you and your family

Regards

Bee xx

[belgrade]

Thank you all for your kind messages. Dave's funeral was held on wednesday and attended by more than 200 people. He was a remarkable man and I really don't know how I will face the future without him. I have wonderful, supportive family and friends and know I am lucky in this regard, but the feeling of isolation is hard to bear at the moment.

Take care all,

Hilary

[Cathy]

Hi Hillary

I am so pleased to hear Dave's funeral went well and I do hope that you got some comfort from that.

A number of us on here have partners and loved ones who are battling the same disease and can only imagine how you are feeling. It is great that you seem to have a lot of support and love around you and that you can take strength from that.

I do hope that things get easier for you Hilary. You did a great job for Dave.

Take care

Cathy xxx

[Jwilson]

Hilary, I'm June and my husband Bill has same as your husband. They tried to do a Whipple but did a bypass because the tumour was attached to all that vital stuff.

Bill has lost almost four stone. Eating is a problem. He lived on yoghurt and digestive biscuits. His appetite returned although not as good as prior to being ill, after three sessions of chemo. It's called gem/ cap. The medical people perhaps may correct my spelling.

Bill takes piles of drugs. Steroids, maxolon, some tummy protector thing called pantoprazole, lyrica for nerve pain round his middle, OxyContin, oxynorm, paracetamol every four hours, creon with all food, co danthramer to help bowels.

Maybe the names of the ones for helping digestion would be worth asking about for your husband. Have you got a hospice nurse or Mac Millan calling to visit and help with all the medication? They know their stuff and in our experience have been invaluable.

Hope you can get food issues sorted soon its terrible making food of all kinds to try to get nourishment into them but they just can't face it. Oh......a litre of full cream milk a day we were told and Bill can always resort to porridge and it causes no problems. Make sure you get creon as its the one that produces the enzymes that the pancreas used to produce. Bill takes 2 40000 capsules before all food.

Sorry this is a bit of a mix up of info but even one tiny comment might help.

Wishing you both strength to fight and good luck

June W

[J_T]

Hi Hilary, I've come back to your thread, I get lost around these parts!

Sorry to hear you've been struggling

I am generally okay but I am on my own so I can shed a tear now and again and then dust myself off and carry on.

I haven't bothered with Christmas really. I've put cards up and that's it, I haven't got the energy for anything else. I've no small/young children to worry about and I'm going to my daughter's for Christmas and my sons will be coming too and all the grandchildren so no food preparation either. I've been able to ignore it for the most part up to now. To be honest, I can't wait for this year to be gone. There again, next year will bring all the first anniversaries.

Its going to be tough for a long while yet but just have to keep going. My children have got me penned in for several holidays so I will look forward to that.

Be kind to yourself Hilary.

Julia xxx

[belgrade]

Hi Julia,

Lovely to hear from you and glad to hear you will be sharing Christmas with your family. We will be having a family Christmas at my house, as we always do, but it will be very different without Dave this year. I agree with you, I will be glad to see the back of 2013 and hope that 2014 will be a better year for all of us.

With best wishes for Christmas,

Hilary x