Hi there, I was on Palbociclib and Letrozole for 17 cycles for bone mets which was working great- had initial breast tumour removed as was doing so well. Then I noticed I was sore in various bone places and was having more blood transfusions and I read extensive bone marrow infiltration on one of my scans. It turns out my scan was read wrong and a stable scan was reported when it was not stable and I had apparently been on the wrong treatment for months, meaning the treatment had stopped and there has now been a spread to the tissues in my spine is how they’ve explained it to me- this causes me nerve pain now and extra pain in spine but is controlled with pain killers and Pregabalin. I’ve been switched to EC chemo- hair has just fallen out which I have found more difficult than I thought. I’m 39 and have wigs on standby but just don’t want to use them. I’ve just given up work and I’m beginning to struggle after being so strong. I’ve had to move back in with my dad and move countries to come home. I’ve been away working for 15 years so I’m finding being at home very difficult too. Just feel like everything is getting on top of me again and I need space!
Jo x
Hi Jo
It sounds like you've had an awful lot to deal with and I can understand why leaving your job and friends behind to move countries and move back in with your dad might contribute to you feeling that everything is getting on top of you.
Moving back in with a parent is never easy as we all have ways that we like to do things and you quickly realise how much has changed since you were a teenager living at home. I don't know if you're feeling that your dad being there all the time is a bit too much but, if so, perhaps you could have a chat with him about giving you some personal space. I'm sure he's very worried about you and trying his best to help but sometimes that can feel suffocating, can't it.
I noticed that you're a member of the secondary breast cancer group and I hope you don't mind me suggesting that you also post there as well as it's a more active group than this one and you're more likely to get someone who is having EC chemo replying to you.
It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. 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.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
