A forum for advanced pancreatic cancer issues

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Suead70
Posts: 7
Joined: Thu Apr 14, 2011 2:36 pm

Help?

Postby Suead70 » Thu Apr 14, 2011 10:24 pm

My dad is 81 and was diagnosed with cancer in Oct 2010. I wasn't with my dad when he was told as he didn't want me to be there, but dad has said that because of his age and health he wouldn't be able to have an operation to remove the cancer. In about August 2010 dad became jaundiced and tests showed he had pancreatic cancer. In Oct 2010 he had a stent put in to stop him from being jaundiced. Complications arose and we were told by the hospital that it was unlikely he would survive. However, dad being the fighter he is recovered and he came home before Christmas. However since then he has had diarrhea and for about 4 weeks was vomiting a treacle like fluid...but we thought this was a side effect of his cancer...there was no information given to us by his GP or consultant etc to make us think that this should be a cause for concern. In fact when we did contact the hospital their solution was to take a blood sample which they told me had come back and it was 'okay'. I didn't know what they were looking for so I asked and they said for signs of blood. It was only because I was adamant that I wanted someone to look at my dad that they told me to get his GP to look at him. When the GP came, my dad was taken into hospital as an emergency and it turns out there was a further blockage and he needed another stent in his duodenum.

My experience has been that nobody tells you anything...when you mention things that are concerning you they give the impression it's normal and you're just a layman who is over-reacting.

I still don''t know how far the cancer has progressed.....dad has no followup appointments about his cancer. The only time he has seen his GP or been back to the hospital is when I have contacted them because dad has been ill. Having read some of the information on this forum I am determined to get some answers but I haven't got a clue as to who I should start with and would really appreciate some advice. Thanks

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Help?

Postby Ellie » Fri Apr 15, 2011 12:13 pm

Hi Sue

Sorry to hear about what your dad has been through and the worries you now have. It must be very frustrating for you, not knowing what is going on. That's always been the worst part for me with my husband's illness. Once you know something, you can get on and deal with it.

Perhaps you should start off by contacting your GP and asking what they know about your dad's situation. If you don't get anywhere with that, try ringing the secretary of your dad's consultant. If you stress that you need some urgent advice/info, then even if they can't help they may be able to put you onto the correct person to deal with. I once sent a typed letter to my husband's consultant and got a lovely reply, with his secretary's name and direct phone number and email address. Phoning is obviously quicker, though.

Just try ringing everyone you can get hold of and push for information. You will never regret doing as much as you can now, so that your dad has the very best care.

Good luck!

Best wishes
Ellie
x

Suead70
Posts: 7
Joined: Thu Apr 14, 2011 2:36 pm

Re: Help?

Postby Suead70 » Fri Apr 15, 2011 12:58 pm

Hi Ellie,

I'm sorry to hear your husband is going through the same as my dad and I really appreciate the advice you have given me. It's difficult because although my dad has been told it is inoperable, I think he is under the impression that the stent has been put in him to either hold back or clear the cancer, so I can't contact anyone while I'm with my dad in case it upsets him. I should be able to get the chance to ring the consultant next week though and hopefully I can get answers to all my questions then. I wish I'd found this forum sooner as my dad has been through a lot of pain and sickness in the last 3 months, but myself and the rest of the family thought it was side effects that unfortunately my dad would have to try to live with...we didn't know he could get medication to relieve his pain or to stop his vomitting....and none of the health care staff at the hospital or his GP had made us aware of this. Thanks to the forum i contacted the hospital yesterday and we've now got some pain relief and hopefully after today we can sort out medication for the vomitting.....I just feel guilty that I didn't do it sooner for my dad.

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Help?

Postby Ellie » Fri Apr 15, 2011 4:01 pm

Hi again

Don't blame yourself for what's happened. None of us know what to expect, or what is normal after a cancer diagnosis. It's a real shame your dad wasn't given any professional support from the beginning so that you wouldn't be going through all this now. No one should be in pain and your father should be kept as comfortable as possible by the experts.

Try and talk to your dad's surgery when you can and ask if they can put you in touch with the nursing team. Our district nurses have been wonderful, sorting out everything from support stockings to a hospital bed in the past few years. They will visit every week, if my husband needs them to, and we have out of hours numbers to ring if there are any problems.

Please don't feel guilty - you weren't to know what to do, but at least now you are getting some help. Keep in touch and if you have any other queries, or need some support, there are plenty of people on here who could help you.

Best wishes
Ellie
x

PCUK Nurse Jeni
Posts: 1074
Joined: Mon Jun 14, 2010 1:30 pm

Re: Help?

Postby PCUK Nurse Jeni » Fri Apr 15, 2011 8:30 pm

Hi Sue,

You will need your dad's permission first before you ring the consultant. Otherwise, they will not discuss anything concerning your dad with you, due to patient confidentiality.

Just thought you should know before you ring.

KR,

Jeni.

Suead70
Posts: 7
Joined: Thu Apr 14, 2011 2:36 pm

Re: Help?

Postby Suead70 » Sat Apr 16, 2011 4:16 pm

Hi Ellie,

I managed to sort out sickness tablets for dad and as well as the pain killers they seem to have done the trick because last night is the 1st night in probably about 2 months that my dad hasn't been vomiting or had pains. He was so happy today and has even started talking about different foods he'd like to try again. My sister lives with my dad full time and its also put a big smile on her face! Dad's been given a wheelchair and for the first time since October 2010, he has gone outside. We went for a lovely stroll and dad loves gardening so he was looking at all the neighbours' gardens and passing comment on them....I can't believe the difference in just a couple of days....I just wanted to say thanks for your help and support.

Best wishes

Sue x

Suead70
Posts: 7
Joined: Thu Apr 14, 2011 2:36 pm

Re: Help?

Postby Suead70 » Sat Apr 16, 2011 4:18 pm

Hi Jeni,

Thanks for your advice on contacting the consultant....I was just wondering how I'd go about this...would it be best to contact the consultant by letter and include written permission from my dad do you think?

Thanks

Sue

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Help?

Postby Ellie » Sun Apr 17, 2011 6:38 am

Hi Sue

So glad to hear how much better your dad is! That really must be such a relief for you and your sister. How lovely that your dad was able to go out and enjoy looking at the gardens, especially with all the spring flowers out now. Something like that can really cheer you up!

Let's hope he continues to improve and you can get a few more things sorted next week.

Keep strong and positive!

Best wishes
Ellie
x

PCUK Nurse Jeni
Posts: 1074
Joined: Mon Jun 14, 2010 1:30 pm

Re: Help?

Postby PCUK Nurse Jeni » Sun Apr 17, 2011 8:48 pm

Hi Sue,

Regarding the information, you could write to the consultant with written permission from your dad.

Alternatively, when you are next at the hospital, with your dad, he can give verbal consent for his case to be discussed with his family. This should suffice.

KR,

Jeni.