My husband had a frontal lobe mass biopsied 3 weeks ago. He is 64 his neurosurgeon works out of a hospital 2 hrs away. There is a cancer treatment center within 30 minutes of our home but they are refusing to transfer him there for treatment. It is expensive and beyond stressful to make the 2 hr both way journey. how can I make his dr see reason
Hi Redkiki,
Welcome to the group and so sorry to hear your news. I cared for my wife who had a GBM.
It's really difficult to advise on your question especially as guessing from some of the phrasing in your post you might not be in the UK? Apologies if I go this wrong. Do you have the result of the biopsy to confirm it's a GBM? If so are they attempting a debulk? Maybe once he moves to radio or chemo therapy he could be transferred?
There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
Have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.
Wishing you all the best,
Chris
Hi Redkiki
I have family in the US and it appears your set up is entirely different to ours in the UK. I would suggest you ask for a full explanation as to why you can't transfer to the centre nearer home. There could be any number of reasons but I can only imagine how stressful and tiring it is driving 2 hrs each way.
When G was receiving treatment here we were an hour each way and that was exhausting.
Hold onto that sense of humour (the darker the better) as it will stand you in good stead. A GBM journey is an emotional rollercoaster ride for all involved.
Chris has already shared all the words of wisdom that I would add. Please remember that this is a safe and supportive space and that you can reach out anytime. There's always someone around here to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. Please also take time to care for your wee self here too. Don't underestimate the toll its taking on you. I'd encourage you to ask about counselling but also appreciate that that approach isn't for everyone.
For now, I'm sending you a huge virtual hug and lots of positive energy,
love n hugs
Wee Me xx
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