Reality

Oh Sulubee, I'm so sorry to hear that.  Life's cruel.

Take it all one step at a time. We had a similar situation last Oct/Nov when my husband's situation began to change. In our case, they did another scan 6 weeks later to monitor rate of change and offered  more TMZ cycles.  He declined them choosing quality of life rather than longevity. He's still with us although things aren't great.

Is he taking any steroids at present? My husband was prescribed Dexamethasone to combat the swelling around the tumour at the end of Feb. He was hesitant about taking them - who am I kidding- he was downright awkward about it but our daughter talked him round about 2 weeks later. They made a huge initial difference to his headaches, speech and mobility. 

Please remember you can reach out here anytime or reach out through the helpline (the number is below). We're here for you. You're not alone,

Sending you a huge virtual hug and lots of positive energy. Hope the appointment goes well.

love n hugs

Wee Me xxx

We have increased his dose from 0.5mg which he has been on long term to 1.5mg which has helped a bit but obviously we can increase it more if we need to.

Tomorrow will be tough. 

Hey Sulubee,

That sounds rough, I hope you are doing OK.

I don't have anything much to say.  Just wanted to express solidarity.

I'll be thinking of you as you go into the consultant appointment today.  As ever, focus on getting through today.  We'll get to tomorrow tomorrow.

Bug hug,

Pete

So the tumour has spread rapidly to the brain stem. He could hardly stand today and for the first time had to use a wheelchair. We made it to the clinic appointment and discussed all options - there are none. 2nd line chemo is ruled out as he does not want it so tomorrow we are under the hospice team and concentrating on symptom control.

We have a DNAR form.

I am devastated.  My husband said that he thought he would die last May and we have almost had another year together  and will have a bit more time yet. He is tired now and just wants to let nature take its course.

Today was tough.

Oh Sulubee, I am so sorry. I have no words to make this any easier. We're in a very similar position although George's symptoms are still more cognitive than physical.

We were given his DNR five weeks ago tomorrow. Accepting that physical piece of paper from the community nurse was so surreal. It's in the scary box of drugs that are lurking on top of my fridge "just in case". Being moved under the care of our local palliative community team and hospice felt "final" at the time but they have been great at just keeping in touch and its been reassuring to know they are only a phone call away 24/7.

Take your time to process this. Allow all the emotions to flow. We're here for you.

Sending you a huge virtual hug and much love

Wee Me xx

Hey Sulubee,

I'm really sorry to hear that.  Sounds like Mr Sulubee is being very practical about things.  Well done to you both for getting through today.  

Each transition is really hard.  The transition to palliative care is one of the worst to wrap your head round.  But the more I think about it, the more I think we live in the best country in the world for palliative care.  Our hospice team were brilliant and really looked after us all.  They are there for you and the family as much as your husband.

If he is struggling with balance, then it would be worth thinking about modifications to the house to make it easier for him to get around (grab rails, bannister, etc.) - ask the hopsice if it is possible for them to arrange a rapid visit from the community OT team.  Even dumb things like buying a shower stool might help as a short term measure (they are a few tens of quid on Amazon).

I recall that when I was standing where you are, things were moving very quickly and it was a struggle to stay ahead of them. Every day it seemed like something new was happening.  If you haven't already done so, now is the time to call in the reinforcements.  Please make sure that you have friends and family primed.  Don't be afraid to tell them what you need (do some shopping for us or or make us a meal, come and sit with him for a couple of hours so I can get some sleep or go for a walk, ...).  People really want to help but they don't know what to do - and now is the time to tell them / let them. 

If you have any questions or things you are struggling with, please post them on here.  In the meantime know that we care.  You've done brilliantly to get through today.  Next thing is to get through tomorrow.  Keep going.

Big hug...

Pete

Thanks for all your messages. I always knew this time was coming but of course like all of us I just got on with things.I guess it is the speed of his deterioration that has shocked me. We have increased his steroids again so hopefully that will provide some relief.