Brain Stem Glioma Grade 4

Where do I start?  Do I really need a support group?  Is this really happening or am I in a nightmare.

It was my husbands 50th birthday and I treated him to a once in a lifetime meal at Ynyshir.  We had an amazing few days in north Wales.  On our travels home we stopped at my parents overnight.  My Mum was worried about her blood pressure so we starting taking each other’s.  My husband’s was through the roof.  I said not surprising after our mini break.  

Upon returning my husband saw our GP who put him on various blood pressure tablets.  He started to feel quite dizzy and out of sorts.  He started to get a numb foot / pins and needles. After a couple of months the GP suggested that he went immediately to A&E for a CT scan.  They found something and sent him then for an MRI.  I was called into the hospital that evening to be told he had an inoperable brain lesion/tumour….  In all honesty we can’t really remember much else.  Whilst waiting to hear from the NHS we sought a second opinion and got somebody to explain what was on those scans.  Wow…. Even if we have treatment it is unlikely to change outcome. 

The shock of telling family and friends resulted in lots of “don’t know what to say”, “so sorry”.  Many messages of support …  but all I want to do is cry and turn my phone off.  But you can’t do that.  You just pull up your big girl pants and carry on.  I have to be strong for our kids.  My family and friends are amazing really.  Every time you tell someone for the first time it’s really hard, but after that I’m feeling a lot stronger.

Since that initial diagnosis on 13 July we have achieved so much.  Made a will / power of attorney / renamed bank accounts / critical illness / blue card etc.  None of it straight forward and very frustrating.

My husband had a biopsy and came out of it the same way he went in.  I was so worried that they would disturb his brain and give us other issues.  The neurosurgeon phoned yesterday to confirm the diagnosis.  

Last month my husband could play a round of golf on his own ..  we could go out for long walks/coffee/lunch.  Today he can’t wash, dress himself.  Struggles to swallow, so we are now on soft foods.  Last night he really struggled to get upstairs,  in the middle of the night he felt he couldn’t breath  and was trying to sit up in bed and ended up falling out.

I’ve organised a wheelchair which I am collecting on Monday. I’ve asked our GP surgery to look into occupational therapy/services as I want to ensure I get the right equipment to make his well-being more bearable.  

Next week we have a meeting with the oncology department to see what treatment is available.  I feel a rougher road is heading our way,

Thank you for giving me an opportunity to offload / vent.