A forum for family, friends and carers of pancreatic cancer patients

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Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thoughts from the PC frontline

Postby Justamo » Sun May 07, 2017 10:02 pm

W&M I am a bit tardy with congratulations on your wonderful news. I don't often tell Peter what's on this forum, but I told him about the NED and he was delighted. We all need a helping of good news and you have provided it.

Love, Mo

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Mon May 08, 2017 3:46 pm

Ahh, thank you Mo. Hubby and I will do our darnedest to keep providing cheer here.
I do hope everything is as fine as can be for you, Peter and Boris.
W&M xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Thoughts from the PC frontline

Postby Elaine123 » Mon May 08, 2017 10:49 pm

Hi W&M great news to read that everything is good at the moment best wishes to you both .....that is great that you managed to get hubby put on statins everything is worth a try ....take care
Elaine
X

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Aug 04, 2017 11:23 am

Just had to post today to register my delight at the announcement that Abraxane will be available on NHS England.

Well done PCUK and other interest groups for campaigning so effectively. This change is going to make a significant difference to the survival time and quality of many patients' lives. Brilliant!!!

W&M xx

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 1:30 pm

Re: Thoughts from the PC frontline

Postby PCUK Nurse Jeni » Mon Aug 07, 2017 4:26 pm

Thank you W&M!

We hope that this will make a difference to many.

Jeni.

Pancreatic Cancer Nurse Specialist.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Aug 31, 2017 12:07 pm

Well, after 2+ years on this journey, and having always been only too aware that the other shoe may drop at any time, I think that time may have come. Hubby's CA19-9 has risen to the scary height of 1600, having been just 50 something when it was last checked four months ago. His next scan has been brought forward to Saturday, and we see our oncologist a week Friday.
I'm trying hard to stay calm and strong but it sure ain't easy.

Wishing everyone well.

Love
W&M

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Thu Aug 31, 2017 12:42 pm

Oh no W&M. You must be terrified but hang in there until the scan and let us know what happens. Knowing you I have found this to be the best article on CA-19 markers and has some useful references to follow:

http://www.hematologyandoncology.net/ar ... ker-is-it/

I have just reread and note that it states:

"CA 19-9 is increased in multiple gastrointestinal cancers, but elevated levels are also found in benign diseases, including peptic ulcers, chronic and acute pancreatitis, cirrhosis, cholangitis, and obstructive jaundice"

I have everything crossed it is a benign blip. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Aug 31, 2017 1:20 pm

Thank you so much Dandy, I really appreciate your crossed fingers and the article. Here's to a benign blip!
How are you getting on at the moment?
Xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thoughts from the PC frontline

Postby Justamo » Thu Aug 31, 2017 2:17 pm

W&M, we all get so much identification with each other on this forum, but :

"Well, after 2+ years on this journey, and having always been only too aware that the other shoe may drop at any time, I think that time may have come".

really made me jump. Change the 2+ to 1, and it could be me speaking. In our case it's not CA19-9 numbers but pain and sickness which has been building over the past three or four weeks.

Let's hope that Blips-R-Us !

Good luck W&M, and prayers too.
Love, Mo

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 1:30 pm

Re: Thoughts from the PC frontline

Postby PCUK Nurse Jeni » Thu Aug 31, 2017 4:22 pm

Hello W&M,

Thank you for the update on the forums, and so sorry to hear about this.

Naturally, a worrying time. However, good that the scan was brought forward, and the appointment. Its reassuring that there is action based on the rising ca 19.9.

You have always been there to reassure others W&M, and I know that you have many friends on the forum. I can imagine that its hard to keep your calm at such a time, but also aware that you are a tremendous support to your husband, and I am sure that he will appreciate this now more than ever.

Kind regards,

Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Aug 31, 2017 7:07 pm

Dear Mo

I'm so sorry that Peter is having to deal with pain and sickness, how miserable for him. Miserable for you too. Knowing and seeing that the love of your life is suffering is rubbish. I do hope it's not the progression that you fear and that Peter starts feeling better again.

You and I are both forum aficionados and are therefore very familiar with the bounce back. I wish Peter a big fat and protracted one.

And yes, definitely hoping for Blips-R-Us forever,

love
W&M xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Aug 31, 2017 7:22 pm

Hi Jeni
Thanks very much for responding to my post and your very kind words which I hope I can live up to. I have the most wonderful husband who is so deserving of the very best support so I will try my damnedest (as do all the carers who visit this forum).
W&M x

Marmalade
Posts: 58
Joined: Thu Jul 06, 2017 4:29 pm

Re: Thoughts from the PC frontline

Postby Marmalade » Thu Aug 31, 2017 11:33 pm

Dearest W&M,

I know it's easy to say but this disease really is a roller coaster! I know you are in a down dip and truly, I can understand the anxiety, every time there is a set back it's as if we are facing the diagnosis again for the first time, the limbo land we live in beguiles us along the way.

You are doing the right thing in trying to stay calm and ride out this latest storm but this is a place where all wobbles are allowed and understood. Sometimes it helps to know that, should you feel it would help, it's ok to have a bit of a melt down with friends occasionally. It's a big thing we are dealing with here.

I know you will quietly go on with the day to day and caring for your man because there is little else one can do but please be assured that we are all here with you both, cheering you on and hoping and praying for a blip!

Much love,

Marmalade xx

Marmalade
Posts: 58
Joined: Thu Jul 06, 2017 4:29 pm

Re: Thoughts from the PC frontline

Postby Marmalade » Thu Aug 31, 2017 11:59 pm

Dear W&M,

PW is having some issues accessing the forum but wants you to know she is thinking about you and sending lots of positive vibes for blips R Us xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Sep 01, 2017 8:51 am

Dear Marmalade and PW

Thank you so much for your messages, prayers and positive vibes.

My natural inclination when things go awry in life is to clam up and hide away. But something told me this time that sharing would help me a lot.

To be honest I felt the need to reach out to some very special people who have experienced the PC rollercoaster and are great at sitting next to others who are finding the ride a bit much.

Marmalade, PW, I can't tell you how much your virtual support means to me, especially as you are both on a different but no less scary form of rollercoaster. I hope at the moment that your rides are gentle.

Much love
W&M xx