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Pancreatic Cancer UK - Support Line

Postby Support Team » Thu Apr 14, 2011 12:01 pm

Pancreatic Cancer UK runs a Support Line for anyone affected by pancreatic cancer. Our Support and Information Team can provide specialist support and information on pancreatic cancer. You can contact the service by emailing support@pancreaticcancer.org.uk

The Support and Information section of our website also contains information about pancreatic cancer and some real life stories of people affected by pancreatic cancer - visit http://www.pancreaticcancer.org.uk/pcuksupport.htm

wstxmike

Re: Pancreatic Cancer UK - Support Line

Postby wstxmike » Wed Feb 22, 2012 3:26 am

Dear Moderator,
I found this forum via another forum(pancreatitis-forum.org.uk) . Subsequently I read Dr. Traces story,which I believe is very close to my circumstance.
I have just been diagnosed with adenocarcinoma of the head of pancreas. I will see an oncologist/surgeon tomorrow 2/22/12.
I questioned a member of the forum mentioned above on how to talk to Dr. Trace, since we both have/had the same experience. I was very encouraged by the good results found in Dr. Traces' personal story. Fact is I am going to tell my Doctor about the treatments Dr. Trace was given and his recovery! Just to see if this mans recovery and treatment would benefit my upcoming struggle.
My question is just how I go about starting a dialouge with Dr. Trace. I was informed that one of your members named Jeni could give me instructions on how to go about locating this remarkable man. I am very encouraged by his fight and ultimate winning tale. The ladies name who helped me out is "Anne Dawson"
Any and all help in this request would be greatly appreciated.
Sincerly Mike

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Pancreatic Cancer UK - Support Line

Postby PCUK Nurse Jeni » Thu Feb 23, 2012 12:19 pm

Hi Mike,

I have emailed you privately with the contact details for Trace.

Have you checked your emails?

If not, I will resend it, as it seems as though you have not received it. We would not have had you wait for this long for an answer anyhow - I think I emailed you the next day, when I got Trace's permission to forward you his email address.

Can you confirm please, by emailing me at support@pancreaticcacner.org.uk

Thanks,

Jeni.

wstxmike
Posts: 3
Joined: Thu Feb 23, 2012 3:43 pm

Re: Pancreatic Cancer UK - Support Line

Postby wstxmike » Fri Feb 24, 2012 2:09 am

Hello Jeni,
I have not received the information yet, it is 2/23/12. Know it will happen though. So we will just keep trying.
Can't wait to connect with Dr. Trace I feel a kindred spirit with this man. Let me predicate this, I feel connected with all the folks in and on the road!!
In the meantime I will give some facts in my situation.
Yesterday I met with the various medical people who I have the good fortune of being referred to.
They will start with a stent to drain the crud and gall stones. Then next week a port will be implanted in my chest to allow ready access to a veins in my chest. This will allow ready point of entry for the chemo the flow dicectly to my tumor. Then I will start the chemo treatment. Six week course. Followed by thirty days of radiation.
I all goes the right way these treatments will shrink the mass off the venous portal so a Whipple procedure can be accomplished.
I am encouraged by the fact that the same team will be working on me throughout.
Thanks again Jeni, keep on keeping on, my friend. I will keep you posted
Regards Mike

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Pancreatic Cancer UK - Support Line

Postby PCUK Nurse Jeni » Fri Feb 24, 2012 4:03 pm

Hi Mike,

Sounds like a very positive meeting with your specialists. I am delighted that you are to have pre-op chemo, and I hope it is mega successful!

I have re-emailed you again Mike, with Trace's details. Can you email me at support@pancreaticcancer.org.uk and I can then just reply to you. I am wondering if our emails are getting stuck in junk box or something, as you should have it by now (I emailed you on 16/2/2012). Alternatively, you can call the support line on (020) 3535 7099, and they will get you in touch with me.

I can then give you the email address over the phone. I would have asked Trace to contact you, but if you are not getting emails, there is not much point in this.

Mike - all the very, very best with your treatment.

kr,

Jeni.

wstxmike
Posts: 3
Joined: Thu Feb 23, 2012 3:43 pm

Re: Pancreatic Cancer UK - Support Line

Postby wstxmike » Mon Feb 27, 2012 4:39 am

Hello Jeni,
Here we go again. I still haven't received nary from your side of the pond!!!.
Lets see where did I leave ? OK I rember now, had a metal stint put in . The Dr. who performed the proceedure said as soon as he placed the device the started gushing fluid!!!
My jaundice has decreased markedly,happy day!!!. Although I have the "....year itch!!!" which is allright with me cause I know everything in in accord.
Take my temp. every 4 hrs. just to be safe.
Been trying to eat, however I still have some pain not a bad though.Mostly oatmeal, hard boiled eggs,scrambled eggs soft stuff ya know.
Try and e-mail me one more time Jeni, perhaps I haven't been holding my mouth just right(SMILE)
I am waiting for your reply. And who knows "even a blind pig finds an acorn"
I would give you my phone ,but I don't think I have trans-oceanic terms available. I will check it out with my phone contractor ,its after hours now so I will have to wait for the business office to open.
Regards Mike

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Pancreatic Cancer UK - Support Line

Postby PCUK Nurse Jeni » Mon Feb 27, 2012 4:10 pm

Hi Mike,

Good to hear from you.

If you can just try emailing me at the support@ email address I gave on the other post, then it might be a safer bet.

Please do so, and I can email you straight back with Trace's details. Sorry, I can't put them on a public forum. It looks as though my emails are not getting through - do you have a different email address you can use? If so, provide that in the email also please.

Kind regards,

Jeni.

wstxmike
Posts: 3
Joined: Thu Feb 23, 2012 3:43 pm

Re: Pancreatic Cancer UK - Support Line

Postby wstxmike » Wed Feb 29, 2012 12:52 am

Howdy Jeni ,
Execellent suggestion on your part,bout the alternative e-mail.( email address removed as personal info - moderator ). There it is so maybe we can get linked up.
This association is super so glad I found it.
Let me see, tomorrow I will do the prep for a port placement, neat device. I did have some concern bout getting poked and stabbed trying to find the right spot. Believe me when I say that I have been on the wrong end several times this last couple of months. The ladies were havn a bad day getting the red stuff to run. Hate it when that happens ya know(smile) especially when the sweet thing has just started doing the proceedure. And then become indignant when I give just a little bit of advice.
So on to the rest now. It appears my medical team are going to do what I suggested or rather asked , that is to be as agressive as possible to kill this monster in me.!!!!
It appears the group will do chemo and radiation together!!
And there it is . "I have miles to go before I sleep"
The hospitals and clinics are 240 miles round trip. My plate is full si or no?
Jeni I want to thank you for helping . Bless you lady. I know you have been a rock for lots of folks in this swim. I'll let you know whats going on. Let me hear from you on the other e address listed.
Regards Mike

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Pancreatic Cancer UK - Support Line

Postby PCUK Nurse Jeni » Wed Feb 29, 2012 5:02 pm

Hi Mike,

Just to say I have removed your email address off the public part of the forums, as we don't advise you putting your email address up there.

Sadly, the one you did put up there is the one I had already emailed you at!!

Can you email me please?

support@pancreaticcancer.org.uk

It is important that we find a way to communicate other than the forums, so I can pass on the info to you. Actually, I will give Trace your email address, and see if he can touch base with you. I am delighted that you find the charity helpful. We are happy to be able to help, so crucial to sort out the comms issue!

Are you having a porta-cath or power port inserted? (power ports can be used for Ct scans)

Great news that you are having the aggressive approach too! Brilliant. May it have the desired effect!

Gosh, that sure is a long way to have to go for treatment? Will you stay in hospital? Would be a bit much travelling that far every day, and you would be very tired. Hope you find a way which impacts your quality of life to a minimum.

Keep in touch (if only!!)

Jeni.