Yesterday we went to the Royal Marsden Hospital for the last time. As I had suspected, my wonderful husband of 48 years was told his GBM4 brain tumour had grown and further chemo treatment of lomustine would not be beneficial.
He is being referred to the outreach palliative care team at our local hospice. His decline has been subtle - lots of little things but they all added up. The tumour affects his ability to hold things in his left hand, he walks more slowly, struggles with buttons, is more reserved and sometimes is confused about time. He is however able to remember all sorts of incredible information about architecture, history, music, geography, books etc- what a trouper!
Throughout this entire nightmare journey, he has never spoken about his tumour or how he feels emotionally or physically, he is always 'fine'. I understand this is his way of coping.
His medical team have been brilliant, so helpful, professional and good humoured we can't praise them enough. I firmly believe his recommendation for a craniotomy and subsequent chemo and radiotherapy has given him an extra year of relatively normal life which we have lived to the full but now at 70 years of age the tumour is definitely on the march and we are looking at less than 6 months. He wants to see one more springtime- here's hoping he gets his wish.
Sending lots of warm wishes and virtual hugs to all of you out there either with a grade 4 brain tumour or caring for someone with one, I've found out so much reading other people's posts which has been very helpful in trying to understand this cruel and complicated cancer.
Support is everything- we're all in a club no one wants to belong to.
RubyTuesday xx
HI RubyTuesday
sending you both a huge hug. This is such a cruel journey for all it touches.
We're in a similar situation with my husband. HIs latest scan revealed two new areas of active tumour growth separate from the original tumour site that have doubled in size in 6 weeks. The latest scan also had 2/3 very white spots that may prove to be additional tumours. After a week of deliberation my husband declined the offer of further chemo (TMZ) as the risks outweighed the benefits. All he wants to do is be able to run. It's the only piece of his old life that's left and he's clinging onto it. I get it.
Memory is a bizarre thing with these evil tumours. He can remember things from years ago, can remember how to do DIY tasks but ask him what he watched on TV this afternoon or ask him to go into the kitchen to make a tea and a coffee or even ask him to read this message and he wouldn't be able to do it.
I'm not sure how long we're looking at. The oncologist was vague when he commented on timescales and only mentioned what he thought we would have if he took the TMZ. Without it...we have as long as we have.
This community has been a huge support to me and I just hope by sharing our experiences that we help others here get through this emotional roller coaster ride.
Stay strong. Remember to take care of your wee self too here. This is all so exhausting both mentally and physically.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
