A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Journey So Far

Postby J_T » Wed May 11, 2016 5:26 pm

"We can but hope", and we all do Mark.

Good luck with the new stent, hope all goes well and you continue to improve daily.

Best wishes
Julia x

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: My Journey So Far

Postby Proud Wife » Wed May 11, 2016 5:59 pm

Delighted to read your last post Mark. Really delighted.

The very best of luck. Hope the procedure goes well for you. Keep us posted.

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Wed May 18, 2016 6:00 am

I fear this will be my last update. I had an ERCP last Friday which found a stent which was obstructing at times, fixed by inserting a second plastic stent. It also found gastroparesis. Who'd have thought that the stomach was so important? Essentially nothing seems to get past my stomach, even fluids, so I'm starving to death. I have minimal pain no nausea, it's just that I feel weak and without energy.

I suppose this must be related to the pancreatic cancer in some shape or form, but it is hard to see how. Anyway it looks like my greatest fear, that the bony metastases would start playing up won't happen. Looking forward I think we are probably down to days judging on the past week or so. I've tried sub-cut metoclopramide but it just made me uncomfortable and full and I've decided to try and avoid needles.

I planned my funeral over 3 years ago when I was told I had cholangiocarcinoma. From that respect I have had 3 years of quality life, with holidays to treasure. I have asked my wife to close this thread at the appropriate time.

So I bid you adieu my forum friends. We have come quite a way. May those still struggling with this disease go a great deal further.

Mark

boa
Posts: 129
Joined: Thu Jul 09, 2015 1:13 pm

Re: My Journey So Far

Postby boa » Wed May 18, 2016 7:41 am

Mark, I don't think I have posted on your thread before but since I joined the forum you have been an inspiration to me and many others. I am immensely saddened by your post but I find great joy reading about your quality of life over the past three years and the pleasure you have had from holidays. Thank you for the help and support you have given us all. Catherine

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Journey So Far

Postby Sueoliver » Wed May 18, 2016 8:48 am

Dear Mark,
I have followed your story and You have been inspirational. I am saddened to read your post and I have tears in my eyes but I am happy you have had such memorable holidays and a good quality of life over the last 3 years. Mark you have been an amazing support and your posts have been informative and supportive. I can only wish you weren't going through this latest development. Take care Mark and I wish you and your family strength and love.
Thinking of you ,
Love Sue xxx

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: My Journey So Far

Postby Proud Wife » Wed May 18, 2016 9:13 am

Dear Mark

Having just read your last post, I am struggling to find the right words but the fact that you posted makes this forum such a special place.

I am just so very sorry, very to hear your news. When I read you were able to tend to the garden I really thought things were looking up for you again. I can only ditto what Sue and Catherine have said about you being inspirational on here and such a help to others, myself included. Thank you so much for that.

All the very best to you and your family. You will all be in my thoughts and prayers.

Love PW xx

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: My Journey So Far

Postby Ant11 » Wed May 18, 2016 9:29 am

Dear Mark,

I have "no words". Your post brought tears to my eyes. Thank you for the emails and support that you provided for Tracy, we so appreciated the kindness you showed. As others have already said you inspired us all and always provided such useful information and gave us all hope with this vile disease. You and your family are in my thoughts and prayers. Love Annette x

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: My Journey So Far

Postby jay » Wed May 18, 2016 10:36 am

I have no words either Mark, you are truly amazing, sending you love and prayers
love Jayne
xx

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Wed May 18, 2016 11:09 am

Mark, you truly are a brave and courageous man to post and let us know what is happening, its such a shock to us all and I too write this with tears in my eyes.
You have been such a tremendous help and inspiration to us all, I am sure you were an amazing GP too.
You certainly never let this horrendous disease stop you doing it your way, and I loved to read about your holidays and how much you enjoyed them. sending you a cyber ((hug)) love and strength to you and your family love sandrax xx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: My Journey So Far

Postby Didge » Wed May 18, 2016 11:17 am

Mark, not sure if you mean you will not be on here to read posts either, but would just like to mention nutrient enemas should you wish to keep going a bit longer to explore if there are any options. I am sure as a doctor you will be aware of nutrient enemas but appreciate that it would be considered a temporary measure as would intravenous feeding (which never seems to be offered when a patient nears the end anyway). Other than that, you have been a sane and inspirational presence here, keeping up with and sharing medical advances and research including 'alternatives'. But if this really is nearing the end for you, I just wish to thank you and hope that you are at peace and pain free. Didge xx

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

Re: My Journey So Far

Postby Wife&Mum » Wed May 18, 2016 11:49 am

Dear Mark, I think this is the first time I've post on your thread and I am so sorry that I'm doing it at such a sad and difficult time for you and your family. Your posts have been warm, wise, educational, uplifting and sincere, and I'd like to thank you for each and every one of them. My thoughts and prayers are with you and your loved ones. Wife&Mum xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: My Journey So Far

Postby Ruthus » Wed May 18, 2016 1:20 pm

I am so sorry to hear this Mark - You have been an incredible inspiration to me. When I was first diagnosed yours, Tracy and Steve's stories were of great hope to me. They were the only stories I could find which gave me some hope of prolonged life after this terrible diagnosis.
I am glad you have had some wonderful times and holidays with your family. Thinking of you and your family.
Love Ruth

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Journey So Far

Postby J_T » Wed May 18, 2016 4:33 pm

Dear Mark

So very saddened to read your latest post. As you know, I have followed your story from the start as you were diagnosed at a similar time to Ray. You have handled your illness with such dignity and positivity and as you say, three quality years to share with your family. Memories I know they will treasure. I am really hoping that you will be able to post again, if not

adieu my friend, you will be missed.

With much love
Julia xxx

PCUK Nurse Jeni
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Wed May 18, 2016 5:15 pm

Dear Mark,

As with all the others who have replied to you, I wanted to respond personally to you to say how very sorry I am to read your post.

From meeting you at the APPG first meeting, where you spoke as a patient, and having a lovely Christmas dinner with you and all the others, it really has been a pleasure.

I loved reading your positive posts as well, describing all your wonderful holidays, and the manner in which you wrote in particular. It was always so positive.

You have certainly defied the statistics of pancreatic cancer, and it was great to hear of all the treatments you had, and how well you did after these. Everyone looked forward to your updates.

Inspiring has been mentioned a lot here Mark - you certainly were that. Its great to hear that you have minimal pain - long may this be so.

Mark - you are in our thoughts. And as you said yourself, adieu for now at least.

Jeni, on behalf of the support team.

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: My Journey So Far

Postby LMD » Wed May 18, 2016 6:26 pm

Dear Mark

Thank you for your positive, straightforward posts, sharing of information and help you have given.
Thank you for speaking to my Dad.

I can't imagine how you must be feeling.. You've been such a support to so many others I truly hope that this forum, at least, has been a source of support for you too.

Wishing that you remain pain free. Sending love and strength to you and your family.
Goodbye for now.....
X