Mary's Cancer Blog

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! ❤️
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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.
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I hope you continue to improve! The love of friends and family is the best medicine!
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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
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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.
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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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Hip replacement

Hi

 

I have been put on the operating list for a hip replacement on the NHS in 2-3 months time.  I wondered whether anyone else has relevant experiences to share?  The damage is not considered to be linked to my chemoradiation treatment four years ago (specialist says there is no sign of radiation-caused fissures in the bone). The is a lot of osteoarthritis in the family, my sister and my 40 year old son, have had hip replacements already. In terms of recovery or treatment, any tips would be much appreciated.  I am really fed up of the long-standing pain, exhaustion, lack of physical activity, low mood, that this causes, and taking paracetamol and ibruprofen long-term, so I am pleased to have been offered surgery and accepted gladly. 

I am also expecting to have an investigation of my bladder, as I have had months of unexplained pain that comes and goes and urine tests show leukocytes but urine samples show no other characteristics of infection. Again, any thoughts or related experiences would be of great interest to me. 

Mary

Lucky likes this post.
5 people sent you a hug.
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I have no advice to offer, but I send you positive wishes for a successful surgery!
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I have no suggestions, but do offer hugs, love, and prayers
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I’ve had my hip replaced because of the radiation damage. I also have bladder problems. I pee blood from time to time and also get frequent UTIs and cystitis. I had a scope and it is confirmed Radiation damage caused. They put me on bladder control medicine which at least helps with the frequency.
I’m happy you are getting a new hip!
Michele
Hi Michele, I have found that going on HRT has stopped major UTI flare-ups, but I do wonder whether this is an on-going low-grade infection. Urine tests come back negative. I must say, I'm pleased not to be taking antibiotics frequently. I feels almost impossible to wipe from front to back. I wouldn't be suprised if it was an infection. You're amazing. I love to read your posts, though I don't follow posts up very often. I get pretty tired, especially with this arthritic hip, and am continuing to work in paid freelance work on a part-time basis. Mary
I hear you sista...thanks for the note. Some days we thrive and other days we merely survive.
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If the hip replacement will give u relief then it's a good thing. I am only 9 months out from treatment so I don't have much to say on this. Prayers to u for uneventful surgery and back moving abouts soon.
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I have had the bladder spasm. I had bladder issues before radiation, and have to be careful; mostly stay hydrated always.
I'm thinking the bones are deteriorating in that radiation zone. Michele hopefully will share her experience, maybe if you write her direct.
Big Hug
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Sorry Mary—no experience with either. But I do have several friends who have had hips replaced and are very happy with them!
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That's really encouraging to hear. Our NHS is fantastic but sometimes its a bit sow to get into the specialist clinics as the system tries to keep people in the community with general practitioners, physios etc for as long as possible.
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I have no advice sorry. But I’m sending hugs and positive thoughts your way! 💙
Mary likes this comment
Hip replacements are miracle surgery! Everyone I know who has had one has marveled at how the pain is just gone. I'm pretty sure there are online support groups for that. Or ask your Dr. if they can give you a "buddy", another female that has had the surgery that you can contact. They did that for me back in 1992 when I had my huge spine surgery. It was very helpful. Inquire about Chlorhexidine, I recommend you shower with it for 3 days prior to surgery, from chin down only. I can share more as time gets closer.
Thank you for those great tips. My sister had hers done 18 months ago and my son (aged 40) had his done 12 months ago, so I feel fairly well genned up (plus other older relatives in earlier years). My brother in laws' life was transformed when he had both done at once. He'd put it off as an aunt had had a very bad surgical experience. Pain is such a strange beast. It may not be major on a pain scale, eg compared with weeing after radiation treatment if not in the bath, but when it is chronic - there all of the time - it is so wearing. I know lots of people here have chronic pain and keep each other going with all they can do and also looking after themselves, including knowing when to say 'no'. Thank you for writing. Mary
Good for you! I hope the new hip helps! I am 15 months post treatment and 11 1/2 months post sacral insufficiency fractures starting. I’ve seen too many different doctors to count and have only had minimal improvement. I finally saw a dr out of state at UC Davis who basically wants to continue to wait and see if my irradiated bones ever heal. It’s worse on the right side which is where my tumor was located so it got more radiation. The last MRI showed fracture lines throughout my sacrum and right ilium. So I am thankful I’m able to at least still enjoy gardening (with raised beds), short walks (no longer able to backpack or go very far) and we’ve found lots of places to camp within an hour and a half of home as that’s my limit siting in a car. I’m really hoping my bones start healing as I don’t see much hope for a Sacrum replacement! Best of luck with your surgery and I hope you are able to get back to a more active life!
Hi there! I had a hip replacement last fall, and it was nothing compared to all the other stuff my body has gone thru!!
Currently in immunotherapy as chemo quit working. Just had stent put in kidney due to radiation treatment 2 years ago. Sending prayers to you!!
Mary likes this comment
Sandy, how are you? Thank you for your reassuring message. How are you now, three months on? Wishing you a happy Christmas. x
Hi Mary!! I'm so sorry to hear that you had to postpone your hip replacement!! I'm glad you have your family and friends to rally around you. My hip is doing very well, I didn't get to really do my Physical Therapy because of neuropathy, but they have me on some medication that I hope will help. I'm on immunotherapy right now for my recurrent cancer, and it has helped some. It has slowed the growth in two of my lesions in my lungs, and the 3rd lesion didn't grow at all! So I'm happy with that for now. I hope you have wonderful holidays, and feel better soon. Thanks for checking in!! Sandy
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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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