Hello,
I have an extreme form of Neuropathy in my surgery site (mastectomy), hands and feet.
I seem to be an anomaly and have yet to speak to anyone that has also suffered.
The medical community don't have the answers so I have decided to reach out to see if I can connect with someone that has.
I would also like to ask if others find the lack of support post chemotherapy regarding your neuropathy as totally lacking?
Where do you go for help? Who has given you the best advice? Were you aware that this could happen pre treatment?
Were you given any advice before you started, things that may help etc?
I feel I have had to navigate this alone. So I would love to hear from any fellow sufferer's on how you manage and to share some of your thoughts. Thank you.
Hi Jan24 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that you're suffering from peripheral neuropathy. It was the side effect I was most worried about but, fortunately, didn't get it.
As the online community is divided into different support groups I'm going to recommend that you join the breast cancer group which is a great place to find others who've suffered from peripheral neuropathy too.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
