Don met with radiation onc today for second opinion of post op treatment

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Comments

  • JReed
    JReed Member Posts: 428
    #22
    mardigras said:

    Have a wonderful holiday!
    Hi Judy and Don,
    I follow your positive, funny and straight forward posts every time I log in and I am praying that your 1% will be our miracle. We so need people like you two.
    This site has many special members and as you say, we don't always agree. There is one thing for sure though, we all have each others backs and want the very best outcome for everyone here.
    The hospital where Rob had his treatment is in Cambridge , England. It is the Cambridge University Centre of Bio-chemical Medicine and many new procedures and clinical trials are held here. To call it a hospital is a bit small, it's a city really where they do a lot of targeted procedures and radio active nuclear medicine.
    I don't know if they would be able to help Don, but I wonder if it would be worth trying to contact their top Upper GI surgeons to ask if they have any new ideas. I can give you the names and the contact details if you would like them. It's just a thought and I hope you don't think I am intruding.
    I wish you both luck, love and prayers for your journey and meantime have a wonderful holiday.
    A Harley, fresh air and freedom - I envy you..
    Hugs and prayers,
    Marci xx

    Hi Marci
    Hi Marci:

    Thank you for replying and yes, of course, I would like to have the names and contact details if you won't mind sending them to me.

    We know that medical advances happen everyday and who knows when the thing you have been looking for all the sudden becomes available? We have no contacts in England at all - so yours would be most welcome and I thank you in advance.

    I work at Michigan State University in East Lansing, MI and ironically enough the project I am currently working on is the Facility for Rare Isotope Beams; a huge part of which will be nuclear medicine. Our facility will not be open until 2018 but I am so proud to be part of what will no doubt save the lives of many many people all over the world. This will be a worldwide facility in which scientists from all corners of the earth will come and perform their experiments, prove theories and produce medicines.

    If by any chance, any of you ever happen to be in the area - we would love to give you a tour of this future facility.

    Hugs and FEC,
    Judy
  • Freida
    Freida Member Posts: 182
    #23
    Hi Judy
    I wrote a post on
    Hi Judy
    I wrote a post on this thread a few days ago but must have pressed preview - again!!! - instead of submit. And I was waxing all eloquent and stuff. I think it is a great idea for you to leave your bike at home and get to enjoy the view on Don's new toy. Enjoy the ride my friend, if anyone can it is you two. You both just wow me.
    Love and hugs
    Freida
  • Guigna
    Guigna Member Posts: 63
    #24
    JReed said:

    Hi Marci
    Hi Marci:

    Thank you for replying and yes, of course, I would like to have the names and contact details if you won't mind sending them to me.

    We know that medical advances happen everyday and who knows when the thing you have been looking for all the sudden becomes available? We have no contacts in England at all - so yours would be most welcome and I thank you in advance.

    I work at Michigan State University in East Lansing, MI and ironically enough the project I am currently working on is the Facility for Rare Isotope Beams; a huge part of which will be nuclear medicine. Our facility will not be open until 2018 but I am so proud to be part of what will no doubt save the lives of many many people all over the world. This will be a worldwide facility in which scientists from all corners of the earth will come and perform their experiments, prove theories and produce medicines.

    If by any chance, any of you ever happen to be in the area - we would love to give you a tour of this future facility.

    Hugs and FEC,
    Judy

    scary where we are
    my husband is about like yours. I couldn't figure out a way to send you a private message, but even though my husband is still undergoing chemo, I believe it's a waste of time. He has a lymph node that is huge, I can see it! between his shoulder and clavicle. The chemo doesn't seem to be changing it very much.
    The stent seems to be holding back the cancer that reappeared at the margins though, so even though he can't eat much he CAN eat, he CAN drink and he CAN swallow his own saliva. Thank goodness for that J tube though!
    WOuld like to talk to you off the forum if possible, if you know how, send me a message.
  • JReed
    JReed Member Posts: 428
    #25
    Guigna said:

    scary where we are
    my husband is about like yours. I couldn't figure out a way to send you a private message, but even though my husband is still undergoing chemo, I believe it's a waste of time. He has a lymph node that is huge, I can see it! between his shoulder and clavicle. The chemo doesn't seem to be changing it very much.
    The stent seems to be holding back the cancer that reappeared at the margins though, so even though he can't eat much he CAN eat, he CAN drink and he CAN swallow his own saliva. Thank goodness for that J tube though!
    WOuld like to talk to you off the forum if possible, if you know how, send me a message.

    I sent you a private message
    Hi!

    I did send you a private message (you have to go to the CSN Email n the left side of the page and then 'write new message' or whatever it says to do there). Hopefully you will see my private message to you and you can respond. Also, I am on facebook - Judith Reed (Barrington). We have the CSN group also on facebook, if you would like to be part of that group.

    I would love to talk with you, feel free to contact me anytime and if you would like, I can send you my cell number.

    Hugs and FEC,
    Judy
  • JReed
    JReed Member Posts: 428
    #26
    Freida said:

    Hi Judy
    I wrote a post on
    Hi Judy
    I wrote a post on this thread a few days ago but must have pressed preview - again!!! - instead of submit. And I was waxing all eloquent and stuff. I think it is a great idea for you to leave your bike at home and get to enjoy the view on Don's new toy. Enjoy the ride my friend, if anyone can it is you two. You both just wow me.
    Love and hugs
    Freida

    Freida ~ you crack me up!
    Freida:

    I have done that same thing so many times and I get so p*((ed when I look and it isn't there. All that work and profound words for nothing. Bah humbug!

    You and Bill have certainly wowed us with your great news - I am still smiling! I can feel your hugs all the way from the Okies to Michigan!

    Talk with you soon my friend,
    Judy
  • captdave
    captdave Member Posts: 153
    #27
    JReed said:

    This truly is a personal decision
    You are so right that each must decide what is right for them. There are conflicting reports as we have all seen - so you educate yourself as much as possible, weigh the pros and cons and come to your own conclusion. I support Don 100%.

    Your also right on hairdo by helmet! Dewrags are awesome!

    Thank you for your support - we sure do appreciate it.

    Hugs and FEC,
    Judy

    Judy, You and Don are
    Judy, You and Don are incredible! Thank you for sharing your adventure with us. I cant imagine how difficult the choice you had to make was. The important thing is that you made a decision and you're comfortable with it! Have a great ride out to sturgis and enjoy every minute of it. It is so good to hear that Don is doing well and recovering so well. As you know the surgery will kick your ****.

    Keep up the great attitude and keep on keeping on.

    Dave
  • mardigras
    mardigras Member Posts: 215 Member
    #28
    JReed said:

    Hi Marci
    Hi Marci:

    Thank you for replying and yes, of course, I would like to have the names and contact details if you won't mind sending them to me.

    We know that medical advances happen everyday and who knows when the thing you have been looking for all the sudden becomes available? We have no contacts in England at all - so yours would be most welcome and I thank you in advance.

    I work at Michigan State University in East Lansing, MI and ironically enough the project I am currently working on is the Facility for Rare Isotope Beams; a huge part of which will be nuclear medicine. Our facility will not be open until 2018 but I am so proud to be part of what will no doubt save the lives of many many people all over the world. This will be a worldwide facility in which scientists from all corners of the earth will come and perform their experiments, prove theories and produce medicines.

    If by any chance, any of you ever happen to be in the area - we would love to give you a tour of this future facility.

    Hugs and FEC,
    Judy

    Wow Judy!
    Thank you for your newsy post.
    I knew you would be something special and how I wish that I was young enough to work in a facility where life changing studies will take place. I envy you.
    Thank you for your very kind offer of a tour, and although I would love to come, it is unlikely that I will find myself in Michigan in the near future as finances and time probably won't permit it. In fact I am saving to take my little grandchildren to Disney. I took my Mum and Dad and my children on a two centre holiday thirtyfive years ago and also visited Clearwater. My dream is to take my grandchildren and my daughter and her husband there and I am praying that Rob will be well enough soon.

    The information that might be of interest to you is as follows:
    Mr Richard Hardwick MBBS, MD, FRCS (Head of the Upper GI Team)
    Research interests:
    Laparoscopic Oesophagectomy.
    Quality of life.
    Barretts Oesophagus.
    Current NHS and /or university posts:
    Consultant Upper Gastro-intestinal and Laparoscopic Surgeon, Addenbrooke's Hospital NHS Trust, Cambridge
    Year of first medical qualification:
    1986
    Current membership(s) of professional, national and regional bodies:
    Royal College of Surgeons of England
    Association of Upper G.I Surgeons (AUGIS)
    International Society for Diseases of the Esophagus (ISDE)
    International Gastric Cancer Association (IGCA)
    British Oesophagal Group (BOG)

    Contact Details
    Telephone number to make a private appointment:
    01223 719322
    Private secretary:
    Toni Race

    Mr Peter Safranek BSc, BM, MD, FRCS(Gen.Surg)
    Special clinical interests:

    Oesophageal and Gastric cancer Surgery, Laparoscopic Anti-Reflux Surgery, Laparoscopic Achalasia Surgery, Laparoscopic Cholecystectomy, Laparoscopic hernia Surgery, Upper Gastrointestinal Endoscopy
    Research interests:

    Minimally Invasive (Laparoscopic and Thoracoscopic) Oesophagectomy
    Current NHS and /or university posts:

    Addenbrooke’s Hospital NHS Trust, Cambridge
    Year of first medical qualification:
    1993
    Current membership(s) of professional, national and regional bodies:
    Royal College of Surgeons of England Association of Surgeons of Great Britain and Ireland(ASGBI) Association of Upper Gastrointestinal Surgeons(AUGIS) Association of Laparoscopic Surgeons(ALSGBI) International Society for Diseases of the Esophagus(ISDE)

    Contact Details
    Private secretary:
    Nicola Safranek
    Private secretary telephone number:
    07889 890788

    Consultant Upper GI Surgeons: Mr R Hardwick, Mr A Hindmarsh, Mr P Safranek, Mr V Sujendran
    These are the Upper GI Team. The only one that I don't know is Mr Sujendran who is new to the post. The other three are approachable and very kind. Mr Safranek is a wonderful surgeon. Confident and absolutely no B*** S*** type of guy.

    Specialist Nurse practitioners: Ben Smith, Nyarai Chinyama, Sarah Coles
    I note these because they have a wealth of experience and Ben especially would be able to help you navigate you way around the maze of Addenbrook's and point you in the right direction. He is an amazing chap, and you are welcome to mention Rob and I if you want to.
    Tel: 0044 1223 596383 - often on answer phone but any one of the three might answer.

    I wish you and Don so much luck and good health for the future Judy. Have a lovely holiday and may God bless and keep you.
    Hugs and prayers,
    Marci x
  • JReed
    JReed Member Posts: 428
    #29
    mardigras said:

    Wow Judy!
    Thank you for your newsy post.
    I knew you would be something special and how I wish that I was young enough to work in a facility where life changing studies will take place. I envy you.
    Thank you for your very kind offer of a tour, and although I would love to come, it is unlikely that I will find myself in Michigan in the near future as finances and time probably won't permit it. In fact I am saving to take my little grandchildren to Disney. I took my Mum and Dad and my children on a two centre holiday thirtyfive years ago and also visited Clearwater. My dream is to take my grandchildren and my daughter and her husband there and I am praying that Rob will be well enough soon.

    The information that might be of interest to you is as follows:
    Mr Richard Hardwick MBBS, MD, FRCS (Head of the Upper GI Team)
    Research interests:
    Laparoscopic Oesophagectomy.
    Quality of life.
    Barretts Oesophagus.
    Current NHS and /or university posts:
    Consultant Upper Gastro-intestinal and Laparoscopic Surgeon, Addenbrooke's Hospital NHS Trust, Cambridge
    Year of first medical qualification:
    1986
    Current membership(s) of professional, national and regional bodies:
    Royal College of Surgeons of England
    Association of Upper G.I Surgeons (AUGIS)
    International Society for Diseases of the Esophagus (ISDE)
    International Gastric Cancer Association (IGCA)
    British Oesophagal Group (BOG)

    Contact Details
    Telephone number to make a private appointment:
    01223 719322
    Private secretary:
    Toni Race

    Mr Peter Safranek BSc, BM, MD, FRCS(Gen.Surg)
    Special clinical interests:

    Oesophageal and Gastric cancer Surgery, Laparoscopic Anti-Reflux Surgery, Laparoscopic Achalasia Surgery, Laparoscopic Cholecystectomy, Laparoscopic hernia Surgery, Upper Gastrointestinal Endoscopy
    Research interests:

    Minimally Invasive (Laparoscopic and Thoracoscopic) Oesophagectomy
    Current NHS and /or university posts:

    Addenbrooke’s Hospital NHS Trust, Cambridge
    Year of first medical qualification:
    1993
    Current membership(s) of professional, national and regional bodies:
    Royal College of Surgeons of England Association of Surgeons of Great Britain and Ireland(ASGBI) Association of Upper Gastrointestinal Surgeons(AUGIS) Association of Laparoscopic Surgeons(ALSGBI) International Society for Diseases of the Esophagus(ISDE)

    Contact Details
    Private secretary:
    Nicola Safranek
    Private secretary telephone number:
    07889 890788

    Consultant Upper GI Surgeons: Mr R Hardwick, Mr A Hindmarsh, Mr P Safranek, Mr V Sujendran
    These are the Upper GI Team. The only one that I don't know is Mr Sujendran who is new to the post. The other three are approachable and very kind. Mr Safranek is a wonderful surgeon. Confident and absolutely no B*** S*** type of guy.

    Specialist Nurse practitioners: Ben Smith, Nyarai Chinyama, Sarah Coles
    I note these because they have a wealth of experience and Ben especially would be able to help you navigate you way around the maze of Addenbrook's and point you in the right direction. He is an amazing chap, and you are welcome to mention Rob and I if you want to.
    Tel: 0044 1223 596383 - often on answer phone but any one of the three might answer.

    I wish you and Don so much luck and good health for the future Judy. Have a lovely holiday and may God bless and keep you.
    Hugs and prayers,
    Marci x

    Thank you Marci!
    Wow! That is great information and detail - I appreciate it so much and intend to talk with Don further.

    Thank you so much,
    Judy

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