Hello again.

Hello Tinalay, 

I am so sorry to read what you're going through but admire your strength and determination. I really hope the steroids keep things in check while your team work out the next steps. 

Much love to you

Fi x

Hi Tinalay it's nice to have you back , but I am so sorry to hear your news, I hope the benefits do outweigh the risks and it has the desired affect, everything crossed for you and everyone on this site.

Stay strong stay positive

xx

Dear Tinalay, 

Good luck with the catching up and the quiet couple of weeks before whatever you decide for your next steps. These rare complications are a so-and-so. 

Dear Salis we’re part of a growing population of people who are surviving longer with advanced metastatic cancer, so these rare side effects may become more common.

I think as long as I can engage with family & friends I’d like to try anything that’s offered. I’m lucky that the complications are in my peripheral nervous system rather than central nervous system (stroke/confusion/seizures...)

My GP has really stepped up today, he’s doubled the dose of zoromorph and told me to get in touch in 48 hours if I’m still getting breakthrough pain or haven’t heard from the Macmillan team. That clarity & support makes things so much easier and I know not everyone is so lucky.

Apologies for interfering with your message to Salis, I am so pleased there is more than a plan, there is an combined effort to help you and I am so glad you are going to give things a go.

I bet you have made your friends on here deliriously happy. I see good news and I expect your family and friends will  see the same. I do hope you feel much more settled.

Right, thats me and my waffle out of the way. Xxxxxxxxxx 

Hi, Tinalay you are right with what you said to Salis about a growing number of us lasting longer these days! In fact I think it has surprised even the medical professionals!

I hope with your GP on board, Tinalay, your pain medication will now be available when you need it! That's the least they can do! Pain is terrible to live with, mine is controlled partially now after years of no one knowing what to suggest! Trouble is, if I take ALL that's prescribed, I'd sleep all week, so If I am doing anything, like a Zoom call or whatever, then I "tweak" the meds, so that I am awake for longer. I'm not quite sure what I will do once the Lockdown is over and life goes back to even semi normal!

I hope they find a plan to suit you!

I'm glad that you are getting good support from your GP team, it makes such a difference when you feel that they can support you too.

It's good that you are clear about what you are happy to accept and what you want out of the help you are offered. I'm so glad that the current issues manageable with the support you are getting.

Best wishes Sal

Another emergency admission to hospital with worsening neurological function. I can get all the way through my history until the part where I wet myself, twice, and then wet the bed. I’ll get over it, and my OH has been so matter of fact and been out shopping for what’s needed. Waiting to hear if I’ll be transferred to Leeds for urgent radiotherapy. Personally I’d settle for more steroids, my mental clarity is better than it’s been in a couple of years!

xx

Hello Tinalay, you already know when you see my name that I am  not going to be useful to you.

But I can and will, send all my hopes and thoughts to you. Let the experts do a bit of head scratching and I am sure they will have some ideas. If you can take it easy instead of worrying about all of us on here,that may help.

Xxxxxxxxxxxxxx

I'm hoping that your hospital admission is short and your home soon thinking of you xxx