Awake and up all night

Yea it will only be a temporary thing and a wig is something I’m definitely having… it just really hit hard, it really didn’t help when the consultant bless her trying to be nice said you can get some really nice wigs from temu but I just snapped her head off… i said something like I don’t want a shit china synthetic wig I want my own hair to stay where it is!.. she later came to find me to apologise. I think the cns must of said something to her.. 

i really should of left feeling relieved and positive, but I almost feel like I’m grieving for my hair, it sounds so stupid when I say it out loud. 

Hi Chloe

I’d definitely take that as a positive appointment. Some of the other ladies in the cervical group have done that chemo combo prior to chemoradiation so you might want to make a post there and chat to them about how they felt going through it. I only had the Cisplatin chemo with my radio and that doesn’t make you lose your hair, so I didn’t have to experience it.

Doing that combo was only a trial when I was first diagnosed and I turned it down-a combination of not knowing enough about it and not wanting to make my treatment longer, but hindsight is a wonderful thing and I regret my decision now, although I try not to look back. The trial results were really good as I mentioned to you before so it should improve your chances of not having a recurrence.

It’s still quite a big tumour (bigger than mine was although my stage was marginally higher than yours) so I hope you’ll decide to go ahead with the neoadjuvant treatment to give yourself the best chance of overall success. I’ll never know if I would have avoided my recurrence if I’d done it. 

I’m sorry you’re feeling so down about losing your hair, but it is only temporary and it will grow back. I hope you’ll be able to come to terms with it-I appreciate it will be a shock to process today though.

Sarah xx

Hi all, am new here. Having a rough night - my mum is reaching the end after a devastatingly short battle with gallbladder cancer and I'm on a mattress next to her while we try to sleep. She's so agitated and doesnt stay still :(

Hi IBKM, I am so sorry you have found yourself in that situation but I think you are really privileged to be able to spend your mums last hours or days with her. Lots of people don’t get the chance to say goodbye.

Do you think it may be your mum’s nerves twitching that makes her look agitated? It could be that she doesn’t actually feel it and she is really asleep! If you think your mum is in any pain, do you have a nurse to call? That being the case I would call her.

Hang on in there, you are not alone!

Thank you Annette, I had never considered twitching nerves being a cause for movement. Unfortunately at the moment we are stuck in a cycle where Mum lies down on her side for 5-10 minutes then stirs and sits herself up. I've asked her if she's okay or in pain, or if theres anything I can do to make her comfortable and she doesn't reply to me. After a couple of minutes she lies back down. You are right though, it is a huge privilege to have had time with her, care for her and to fulfill her wishes of dying at home. I just wish I could see her a bit more peaceful tonight (and get some sleep myself!). I hope you are holding up okay yourself, thank you so much for replying to me. X

Hi, When your mum sits up but doesn’t speak or want anything, it could be because she is really still asleep! Especially if she just settles back down and falls asleep again!

Have you thought of having earbuds or a headset with gentle music playing to help get you some sleep! If your mum awakes, you will #hear it So it may be. Worth a try. Hope you can settle and get some sleep!

That's a comforting thought that she may just be in a kind of sleepwalking state. I will try putting on an audio book quietly. I hope you are okay tonight yourself Annette. 

Love Kate x

hi Kate, I hope the tape works and you get some sleep while your mum is asleep.

thanks but I’m ok. I’m awake most nights with nerve pain,  I’m going to switch off my iPad now & try to get some sleep too. Talk soon.

Hi 

Good news that you've had good news.

I lost my hair while having chemo and bought some turban style hats from Annabandana. I had my last treatment on 8th May and I now have a fairly good covering of hair but had a number 2 cut about 10 days ago to even it out, I'm now rocking the Sinead O'Connor look.  I have a great wig that my lovely friend bought for me as my daughter's getting married this coming Saturday and she was worried that my hair wouldn't be grown enough, which it isn't.

I chose not to use a cold cap as my oncologist told me that it probably wouldn't help much as my hair was quite short and fine to start with.

I can understand how you feel about losing your hair and I hope if you use the cold cap it helps.

Best wishes for your ongoing treatment. 

H

So sorry to hear about your Mum, best wishes to both of you.

H