Hi All,
I’m new here and to be honest have been avoiding going down the rabbit hole of joining a forum like this since my Husband (51) was diagnosed with his tumour in November last year but as our journey continues I feel like some days you just need someone to talk to who gets what you are dealing with, if you get my drift.
We live in Greater Manchester with our 5 year old, I’m 40, new to caring and normally work full time in a Corporate City role, and I’ve found navigating the whole health and support for my hubby and his illness really difficult!
In March they told me he had days to live after a seizure and DNRd him - then two days later discharged us home with palliative chemo and nothing more than come back in 6 weeks for a scan and loads of meds, since then we have been doing that every 6 weeks since, keeping hope and dealing with symptoms as much as we can!
The hospice were put support us but then discharged us as “he was stable” and I’ve not been able to return to work as I look after him 247 and we have a 5 year old. It has literally taken me having a total melt down and ringing 999 one day as he was so sick for us to get any support (ambulance referred us ) and so far that’s only been in the form of Adult Social Care ringing me and saying they are sending out someone to do an assessment and he needs to do a financial assessment and we are three weeks into that and progress is slow. They said they may be able to put a package together to enable me to go back to work but when they told me that would be a cost of £20.20 an hour on top of wrap around school care it doesn’t make returning to work viable!
it seems crazy there’s not more help out there, some days I struggle to leave the house to get to the shops for shopping.
anyway that’s my rant over, any advice from anyone in a similar situation would be appreciated, I’ve also contacted my local carers support group to see how they can help.
it’s been a really tough journey and we struggle daily with the symptoms and side affects and it can be hard to keep the mood positive but we have to keep hoping and praying for a miracle! Him being here today is a miracle after what they told me in March
Hi LeaB
a warm welcome to the online community. So sorry to hear about all that has been going on.
I supported my late husband through the 3 years of his glioblastoma journey. He was 50 when he was diagnosed so I can empathise with the journey you are on. You can read the gist of our story in my bio,
Our kids were older but I too work fulltime. I was fortunate enough to be able to work from home throughout. I hope you get something sorted out.
This is a safe and supportive space so please reach out here anytime. You might also want to explore (+) Glioblastoma multiforme brain tumour forum | Macmillan Online Community There's always someone about to listen who gets it, someone to hold your hand and someone to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
I don't mean to cross a boundary but when it came to finances there is a legal/tax loop hole regarding pensions for someone over 50 but under 55 in this situation that allows them to draw out their pension funds. You might want to seek independent financial advice if that feels appropriate.
Please take care of yourself here too. This journey takes its toll so please take time to recharge your own batteries where you can.
For now though I'm sending you a huge virtual hug and lots of strength.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
HI LeaB
I hear you. Rabbit warrens crop up now and again and that's absolutely fine so please don't be too hard on yourself here. You are doing a great job in circumstances that are beyond difficult. I often likened the whole carer side of it to like being flung onto the start line of an ultramarathon without a map, any training, any equipment, no idea how long the race is, you never entered it in the first place and knowing that above all else you simply need to keep going.
I've written a few community blogs for MacMillan over the past few years and thought I'd share two with you that might help here.
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
sending love and hugs and strength
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Am going thru this terrible situation my wife looks after me please ask for help it is out there god bless you Brian 
Brian Carroll
Hi am dealing with same as your husband I start radiotherapy in 2 weeks hopefully get some normalmality back in my life please ask for help it is out there God bless you regards brian
Brian Carroll
