Secondary breast cancer in brain, bones and lungs

So glad your treatments are done.

I’ve tapered the steroids off and today was my 3rd day without any. I’m managing OK, wobbly but OK. Yes, it will take time but my swollen face will recover now I’m off them.

i have nausea meds but I’ve been just about managing without them for the last week or so.

As promised, some hat links:

Bamboo or cotton and bamboo ones are the softest on tender skin.

I have loads of this style in different colours, and they are comfortable to sleep in too. You can wear them as a slouchy style, scrunch it up on the top of your head to give a bit more height or fold it for neater look  https://amzn.eu/d/9Dt2deI

This one is a bit more structured and the headband gives you a bit of height on top which I liked. It’s still really soft https://www.annabandana.co.uk/search?q=button&options%5Bprefix%5D=last

I don’t have any of these ones but they  have a range of patterned ones with contrasting headbands too if that’s more you

 https://www.annabandana.co.uk/collections/patterned-chemo-hat-sets

Hope that helps xx

Hi Fliberty,

Thanks very much for sending these links, really helpful and I like the look of the designs. They are pretty affordable too and maroon paisley has immediately leapt out at me

I’m glad you’re still managing okay and off the steroids now. Hopefully the side effects will continue to get easier though this is such a rollercoaster isn’t it. I’ve actually been surprised the side effects haven’t been as bad as I feared so far although of course that could still change. I’ve halved my steroids since yesterday and have still been able to do some gentle exercise although I haven’t exactly been exerting myself! I’m finding dealing with the psychological side of all this far more difficult..it’s as if in the absence of tough physical side effects, the psychological aspect shuffles in to take its place! I really resent how much time and space this horrible disease takes from life. 
With that in mind I’m going to try and do some nice things today, even if that just means listening to podcasts or something non cancer related.

I really hope your nausea will disappear soon and have a nice rest of the weekend. Xx

Hi, I was given the all clear from breast cancer in 2022 , 8 months later it came back in my brain . I literally went o pieces with that news after starting to rebuild my life .  I had a solitary tumour , ie the cancer was nowhere else in my body . I had a craniotomy a week later , then radiotherapy .  I’m on phesgo for life , great back to the itching again, and I’m on extamestane , an oestrogen blocker .  I get 3 monthly ct and mri and so far remaining stable .  Stage 4 metastatic breast cancer in the brain is the scariest sentence I will ever hear .  But I’m living everyday to the fullest, insurance for holidays is a problem but I managed it . This disease is horrific , but I have a lot of living to do and intend to do it as long as I can x

Glad you found the links useful  

I’m still doing OK, I was away for a long weekend with no WiFi. An enforced break and fresh air did me good.

Glad to hear you seem to be managing OK so far. The psychological stuff is hard to deal with, so frustrating when you just want to get back to normal life but cancer takes over everything.

I think you’re right, it’s important to find the opportunities to fit nice things in whenever you can xx

Hi Heldo,

Sorry to hear you’re part of the brain mets club  

I’m on Phesgo too, hopefully I can stay on it long term if the radiotherapy has worked on my brain mets 

I like your approach of living every day to the fullest. You’re right, we do have a lot of living to do!

Where did you manage go on holiday?

Which was the best place for medical insurance?

We’re thinking of trying to go abroad while I’m up to it, but I’ve not had much luck with getting quotes so far.

Fliberty xx 

Hello, I’m so glad you’re doing well so far, long may that continue. Being diagnosed with brain mets was an horrendous experience and the survival stats still terrify me but I’ve also heard some positive stories from people who’ve been living with brain mets for a while. At the moment my lung mets are actually slowing me down more physically which is very frustrating but I totally agree with living each day to the fullest and intend to for as long as possible. Xx

Glad you’re still doing okay. I hope you’ve had nice weather over the last few days like we have here. It’s given me more incentive to get out and about and I’ve managed some gentle gardening today although my lung mets do slow me down a fair bit. Booking time away is such a good idea and I’m looking forward to doing this myself soon xx

Hi, we went to the Dominican Republic . I could only get a single trip which cost as much as the holiday . However I found a company called All Clear who have gave me an annual policy as my mets are stable , I’m not terminal , if your terminal you only get a single trip insurance . So because I’m incurable but treatable I got an annual policy . So off to the canaries soon . Got my sons wedding in August and I do intend to be there x

I know what you mean about the lovely weather, seeing early signs of spring has made me feel much more optimistic. I’m glad you’ve been able to do some gardening, being outside does us good.

I’ve accepted that I need a walking stick for balance when I can’t hold on to my husband’s arm. I started trying one out yesterday. I might even be able to go out for a walk alone if I can get used to the stick. I hope things will improve as the brain swelling goes down but it gives me back a little bit of control right now.

Hope you’re feeling OK and don’t have too many symptoms xx

Wow, I’m surprised you were able to travel so far! The Dominican Republic sounds like an amazing trip (if incredibly expensive for insurance ).

Thanks for sharing the name of the insurance company, if the radiotherapy can keep my brain mets under control we might be able to do some of the trips we’d always planned to get around to

I’ve been to the Canaries a few times before cancer and always enjoyed it. There’s some amazing volcanic scenery there to be explored. A family wedding there will be lovely xx