Sacral insufficiency fractures

[Poir]

Thanks so much to everyone who replied to my previous post!

I feel encouraged by your good wishes and suggestions as to possible ways forward. I'm away from home at the moment but next week I'm definitely going to get back in contact with the specialist gynaecology nurses to see if there is any ongoing NHS support in my area of Devon. And to try and check that what exercise I'm doing is correct and not detrimental long term.

It's also sad to hear that so many of us are not getting the long term support we need and deserve.

I don't want to knock the NHS as I can't complain at all about my experience of cancer care. My endometrial cancer was picked up at a very early stage and dealt with successfully. It also turned out there was a genetic element to my cancer - Lynch Syndrome - which has now been thoroughly investigated. My children have been offered genetic testing and thankfully they have not inherited the gene!

So there is a lot to be thankful for, but also a need to try and keep highlighting the long term effects of cancer treatment. I hope by being a member of this group I can be a part of that process.

[Quercus16]

Oh my goodness, I didn’t know about the Lynch syndrome I will check this too , I had endometrial cancer but doesn’t mean I had that but for my family I will check. I also live in Devon. In East Devon and having my treatment at the RD&E, whereabouts are you please? To have someone else to speak to that has IF in my area would be amazing, I have found it quite isolating. Kathy

[Poir in reply to Quercus16]

I've made some progress in having my IF monitored! Contacted the local cancer support group linked to Torbay and my information is being passed to the Late Effects Radiographer (who knew there was such a thing until now!!) for a possible official appointment - if I meet the criteria.

Don't think I would've made that step without being linked to this group and reading about others experiences.

Happy to stay in contact 😊

[Quercus16 in reply to Poir]

Good luck. Yes a friend was also contacted by them. Unfortunately it seems Exeter doesn’t have the same source. I hope it goes well for you and look forward to hearing how you get on. Xx

[Blue_Hawaii in reply to Quercus16]

It’s was said by one of our members, it’s a very lonely condition

We are not alone with this community

Sending hugs to everyone 🤗🤗🤗🤗