Gillain-Barre syndrome following chemoradiation

Hi dear friends,  I had the misfortune of getting Guillain-Barre syndrome (GBS) in August, an auto-immune disease that was triggered by a virus infection.  I had numbness and tingling in my hands and feet, spreading up my legs. I became paralysed from the waist down and had six weeks in hospital, including one night in intensive care at the peak of the risk (when lungs can become paralysed). I've done intensive physio and been lucky to recover quite quickly by GBS standards. I can walk again now and also climb the stairs, albeit with difficulty. I missed having my hip replacement surgery as I was in hospital. I'm hoping to get it rescheduled for early in the new year. So, I've still got debilitating hip pain.  Sadly, I still have numbness and tingling in my bottom and perineum through to my public bone. It seems likely that the damage to my nerves has been greater in the area where I had radiation treatment four years ago. I'm hoping it will improve with time but for now normal sensation is abscent upsetting bladder and bowel control and dashing sexual feelings and response yet further. (It's quite sensitive and uncomfortable to be touched. My husband hugs me and pats or squeezes me on the bum and it sets off a rush of pins and needles.) One benefit is that the drug I am on for the nerve pain, Pregabalin, improves my mood and stops low mood dips. So every cloud has a silver lining. Plus, dozens of friends all rallied round to visit me in hospital, send cards, feed me, massage my feet, etc etc when I was sick. It is a true blessing to have this love and comfort. My son flew over from Australia, too, just two months after we'd been there, despite having two young children. The sense of being loved trumps physical infirmity and limitations.

 

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I am so sorry you're having to go through this. It is always good to know we have people who love us. Sending hugs, love, and prayers
Mary likes this comment
Wow, so sorry to hear this! I’m glad your family and friends rallied around you - always a silver lining. I hope you can enjoy the holidays with some degree of comfort!
Thank you, Julie. This gang of friends means a huge deal to me, too. Those who know about all the pelvic trials and tribulations. x
I’m so sorry you’ve gone through all of this!!!! Thank you for sharing and bringing awareness. Much happiness and love to you this holiday season! ❤️
Mary likes this comment
Prayers for continued improvement 🙏 It is a blessing to have your family’s support. Anal cancer has so many more side effects from treatment. So sorry to hear of your struggles.
Mary likes this comment
I hope you continue to improve! The love of friends and family is the best medicine!
Mary likes this comment
I’m sorry to hear about all the pain and life changing illness. But I’m so glad to hear your feeling so loved!!!! 💙🥰
Mary likes this comment
You've been through a lot! I hope it eases up soon.

All you've been through, is a lot, so I hope you take your time to really heal.

Big hugs, E
Mary likes this comment
Hi Mary..thank you for sharing your story. I believe the chemo/radiation we underwent has more longterm effects than anyone else will ever realize. I'm sorry for your suffering but happy for u to be so loved. You must be a loving person yourself. Praying for your continued recovery.
Mary likes this comment
So sorry to hear about your issues. I hope you are headed in a new direction, leading you to recovery and good health.
Mary likes this comment
Thank you everyone for your lovely messages and comments. It means so much. Wishing everyone a happy Christmas. x
You have.been thru so very much yet I can hear gratefulness in your message. I'm only a year out from treatment and still suffering side effects that I never imagined.
Have a wonderful Christmas.
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Vital Info

Posts

April 16, 2018

London, United Kingdom SW14

January 2, 1959

Cancer Info

Anal Cancer

Squamous cell carcinoma

Stage 1

0.1 - 1.0 cm

Grade 1

No

Empathise, share experiences and practical tips. Share new reliable research knowledge

The Marsden, Sutton, England

August 22, 2015

No

originally: tiny amounts of bleeding, fecal incontinence, passing of clear mucous. Later itching at the site of the tumour.

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