Forum Discussion
Chemo and Guillain Barre Syndrome and r there any groups on Sunshine Coast, Coolum to Noosa Region?
Hi, I was only diagnosed with Breast cancer on 1 Aug and had a mastectomy plus 2 lymph nodes on 10 Aug with a further op on 16th to remove 15 more lymph nodes. Was diagnosed with Gr 3 multi focal DCIS, 5 tumours, largest 22mm in a cluster. total area 6 cm. Initially tested as triple negative but retesting shows 20% oestrogen dependent on one tumour and one lymph node. All that after having a negative breast screen exactly 12 months prior! It has been a frightening whirlwind of appointments, scans, biopsies, operations with the added fun of finding I was allergic to fentanyl and Cyclozine given during surgery. I am now facing the prospect of 6 mths chemotherapy starting on 13 October which I am not sure how my body is going to respond to as I had Guillain Barre Syndrome when I was 23 and it is a neurological shutdown of the nervous system in response to a virus in the body. Even having the flu shot can trigger it again. Has anyone else had Guillain Barre before chemotherapy or know of anyone who has? Am not sure if groups of people get together in certain regions? If so are there any groups or individuals who would like to link up on Sunshine Coast, especially Coolum to Noosa region? I would be grateful for any comments, Sirrah
47 Replies
- @Sirrah thanks. You’re so right about the little things in life. So very important!! Take care xx
- @Doodoo, yes, it must b a weird feeling, but I am sure once u get out of that chair for the last time u will feel euphoric! I was even a bit dizzy with happiness when I had my first "good" day on Saturday! Oh how the little things in life we took for granted matter so much and other things like whether I have makeup on when someone visits, don't matter at all! I'll b thinking of u next Tuesday. Xx
- @Sirrah I used a jug to measure my water. It’s a great idea. I drank coconut water as well as water to add some goodness. Hope you’re going ok. Thanks, can’t wait for last chemo. It’s kinda strange because I don’t want to do it, but I can’t wait. Weird hey!
- @Doodoo thanks so much for your advice. I did try to drink at least 2 litres for the first week, will try to keep it going for longer next time. Have decided to prepare some 1 litre containers so I know exactly how much I'm getting thru! Good luck with your last chemo, that must b an amazing feeling!
- @Sirrah it’s really important to try & drink more fluids to wash the toxins out if you can. I managed to drink 3 ltrs a day (which means I was up half the night peeing 😂), but worth it. Hope your next chemo goes better. I have my last chemo in 8 days. The time has gone really fast. Hang in there, & keep letting us know how you’re going. Take care xx
- @Josephine66 thanks, yes I guess it is all a steep learning curve. This is my third day of feeling a bit like my old self and we r going out for a picnic by the river. Hope u too r feeling better and your skin has healed. I am still looking forward to meeting up next month and will send u a text message towards the end of next week
- Thanks for letting me know @onemargie. I thought I might not have done it correctly. Was just trying to do something similar to private messaging on f/b. Perhaps someone can give me the right steps! Thanks for the support Margie and I have been lucky enough to b contacted by another member here on themSunshine Coast and we r hoping to meet up soon.
- Thanks @Kiwi Angel for your response. I think when I had a few good hours on some mornings I was expecting it to continue and my expectations let me down. Am much more prepared for the ups and downs next time. Have had 3 pretty good days and my husband even walked me across the road to have coffee with a neighbour yesterday. (Still a bit shaky when I walk). It was so nice to be in a different environment and yes, we r so lucky where we live, we watched a pod of whales jumping and waving their fins while we had a cuppa!
- Hi there @Sirrah. I just found your message but it wasn’t under my PMs but somewhere else! I’ll find it again and text you through the week to see how you are going. Margie x
- @Sirrah u poor thing. Every round of chemo is different too I didn’t have the same experience twice. I hope u feel better soon xo
