Hi Alexia 

The consent letter is one you keep.  Make a couple of copies, so if asked you can hand one over to go in your mums notes.  I found that most of the doctors like a copy, even the gp, so I got my mum to write and sign one, then made photo copies.  I did the same with my brother, it’s just so you can ask questions without the patient being present, as no one wants to upset the patient.   Please be prepared for things you might not like to hear though, as when I asked about my mum, I didn’t like what the oncologist said, but at the same time relieved that at last I was getting the truth, even though I was with mum at her drs/oncologist appointments.   

My mum was very ill on the steroids, so they stopped them, but it was too late for her to make any difference, my brother was always tired on steroids, but her would sleep for about 20 mins at a time, but I’d just let him sleep when he could.  Speak to your mums doctor about the was they are affecting your mum, the doctor is realistically the person who knows, as he is treating her.  I know it’s a hard thing to go through.

sending love and hugs to you and your mum 

Polly xx

Heya, 

Oh right okay, keeping it in her notes sounds like a good idea because anyone who needs to, will always have access to it. I'm so glad you told me about this, thank you so much you're such an angel! Thank you for telling me to be prepared too, I hadn't thought of that part (stupid me) so I'm glad you prepared me for it too. What kind of things do they tell you that aren't mentioned in appointments? Not specifically of course, just in general so I have an idea of the type of things I can ask etc. Again thank you for this, it will be so handy. 

I'm so sorry that your brother and Mum didn't get on with the steroids well either. It's not a problem I've seen mentioned much, most people find themselves happy and hyper with a large appetite, but it seems as though my mum's always tired on them, but her mind is far too active to go to sleep. She's having maybe a half hour nap some times, then sleeping for only around 3 hours a night. I'll definitely speak to her oncologist about it because for the next 3 rounds, the different type she's gotta have, she's got to have a 3 day course of them, starting the day before her chemo. So I don't want her going and having Chemo on only 3 hours sleep, I'm worried it will make her even more poorly. Luckily her next ontology appointment is on the 6th of February, and chemo on the 13th, so we will have time to tell her about the steroids. I'm so glad we have met, you've been such a huge help to me, thank you so so so so so much! 

Love and hugs, 

Alex xxxx

Hey!

Im not surprised you feel like this, It's natural. You're worried sick and it's hardly surprising given your family history. My dad just got diagnosed with stage 4 and he didn't want to tell me because he knew I'd be devastated but all I want to do is look after him and be there. I would tell your husband and daughter just how awful you are feeling, you're family, you're meant to be there for each other and just talking about your feelings will help. We are all here for you, you can chat to us anytime. When I was 20 after some dodgy blood tests results and finding a lump my doctor referred me and I was beside myself with absolute fear. Crying, panicking, imagining the worst etc... Luckily I was ok but the fear is natural. Please just talk and don't hide it. 

Take care. Let us know how it all goes. 

TJ