On countdown to surgery and HIPEC at Basingstoke on 21 October

Hi

I know we are a small band of warriors that are dealing with this freakishly rare cancer. I just wanted to say hello.

I got diagnosed after I developed an umbilical hernia and so far the disease has been judged to be low grade. My PMP baby bump makes me look like I am six months pregnant but I consider myself very lucky not to be in pain.

Generally can still enjoy life (although now self isolating) but am worried about loss of independence after the op as I live alone .... it's quite difficult to go from an independent little so and so to letting everyone in to help me!

Anyway ... happy to chat

Sending love and light to you all 

Heather

  • Hi Heather.  I went thru the same November last year and would love to share my experience and  support you.  I wish i had someone to talk with during my recovery especially during the difficult hospital post op time. Speak soon,  Steve

  • Hi Heather

    I had my surgery and HIPEC at Basingstoke 8 weeks ago. They are amazing and I am now home recovering quite well.  I have had previous ops but the recovery is tougher so get as much help as you can! 
    For me the most difficult thing was feeling so exhausted and tired as well as bowel problems ( I managed to escape a stoma thankfully) but I can now walk for about a mile with no pain. I am still avoiding driving and housework as my tummy muscles are still recovering. 
    Feel free to ask me any questions. I hope all goes well for you… you ll be in good hands! 
    Best Wishes

    Kaz x

  • Hi Stevieje still working out how this forum works but thanks for your offer to share your experience. Happy to do that, Heather

  • Hi Kaz, a mile without pain is really fantastic. Well done you! I'd be well happy with that after 8 weeks. 

    I know a stoma is in the hands of the surgeons, and there's nothing I can do to influence it one way or the other but I guess it's the first thing I'll check for once my brain is alert enough after the op.

    I tend to avoid housework at the best of times Slight smile so no change there for me. How tired is tired .... what did a typical day look like for you in your first week home, and how has it changed between week 1 and week 8?

    Thanks for reaching out 

    Heather x

  • Hi, I'm new to this forum. I've sent a message before but then I needed to sign in. So I'm writing it again. I am relieved to find people who like me are having this kind of operation. I feel a bit scared but brave at the same time. It's on Friday, 15th the day after tomorrow. However I am also worried that they would not have an ICU bed available like it happened in September and I had to go back home. This is in Birmingham. I feel disheartened in a way... my operation should have been a good month ago... I'm hoping it will go through this time....  I send love and best wishes to all who are in this same difficult time.  Malin

  • Hi Marlene

    I'm Steve and i had exactly the same CRS with HIPEC last November at Edgbaston Priory under Mr Youseff.

    The op was 10 hours and it was a big as it gets Mr Youseff describing what he found with my Pseudomyxoma Peritonei from the appendix.

    You are in excellent hands. Your recovery will be tough but worth every minute every hour because you will get better feel better and ready to live your life to full again after 4 - 6 months.  I have had a wonderful year and started to feel myself again around Christmas last year 6 weeks after my op. 

    Please keep in touch,  you will likely want someone to talk to that's been thru this whilst you are in hospital going thru recovery.

    What are your main worries, concerns ? Ask me anything. 

    Kind Regards

    Steve

  • Hi Kaz

    How are you feeling now ? I'm seeing Mr Moran at Basingstoke next week for a 2nd opinion. 

    How was your experience,  were you under Mr Moran ?

    Best Wishes, 

    Steve 

  • Hi Steve

    Thanks for your message. I am certainly feeling better 8 weeks after op although still dealing with some problems but I ll improve as time goes by. 
    I wasn't under Mr Moran but he did my discharge note and I met him a couple of times. Mr Tzivanakis was my consultant. Although they worked as a team on my op. The consultants visit every day but it varies who you see so I also met Mr Mohammad too. All are absolutely marvellous with such expertise, experience and reassurance. 
    I am sure if it’s a second opinion you are after, then Basingstoke will be ideal. 
    Good luck next week and let us know how you get on. If you need to ask about anything or just need to chat then feel free to contact me. 
    best wishes

    Kaz x

  • Hi Kaz.

    Great to hear from you,  it really helps to be able to talk this thru with someone. 

    Basingstoke seems to me the best place in Europe for PMP. I had a first meeting today with my Oncologist who is recommending Chemo if Mr Moran cannot intervene. I had my CRS and HIPEC almost a year ago and its come back quite aggressively altho not high volume at the moment which means it has a higher chance of being halted by Chemo. 

    Hoping your recovery continues to go well, ask me anything if you have concerns I've been thru that same recovery earlier this year. 

    Will let u know how it goes at x Basingstoke 

    Steve x

  • Hi Steve

    I am so sorry to hear that it has come back. That is my fear at the moment. It is good you are seeing someone at Basingstoke as they are excellent and world renowned, and things seem to be happening quickly for you now. Stay positive! I was reading the other day that treating PMP for a second time is quite effective. Wish I could remember the website for you but I ll try looking again. 
    Best wishes

    Karen