Hi all,
I've not updated much on where we are at these days because I feel the honest answer is "I don't know." When folk ask me how things are my standard reply has become "I am. He is. We are." People with no experience of these tumours just don't get it. Thank goodness for you guys!
Tomorrow is the London Marathon and I guess that's proving to be a reminder of how much has changed in the 6 months since that race was last run. The 2022 race was at the start of October last year and was my other half's last big race. I mentioned it at the time but he was raging with his time. He was 18 minutes outside where he wanted to be to get a PB and a "good for age" classification. He ran the race, with 2 new GBMs growing plus the inactive remains of the original tumour, in 3:33:34. Incredible time! Incredible feat! He has no recollection of the race from about mile 14.... scary...very scary... He doesn't remember running down The Mall and crossing the line.
That night he entered the 2023 Manchester Marathon, with the goal of that PB set in his sights... That race was last week and his race number went into the trash the other day. Neither of us have mentioned it.
Reading everyone's tales on here does make me realise that to an extent we've "got off lightly" so far with the devastating effects that GBM has brought. Physically he's still in great shape. Mentally is an entirely different story and that's as hard to face, perhaps harder in some respects. I sometimes wonder if in some ways this journey might have been easier if the impact had been physical rather than cognitive ... then I count our blessings that it wasn't.
I do wonder more and more these days about how often I need to lose him before this finds its natural end. He's not the same person he was. He's not the person I married all those years ago. He's not been the same person since a seizure two days before his surgery. That left a "new" person in its wake that we got to know and love, then the GBM began to make its presence felt and that person changed too. That person has changed several times over the past 32 months. When he agreed to take the prescribed steroids a few weeks ago after the final call with the oncologist which saw us passed into the care of the local palliative nurses, a previous version of him was restored but now the benefits of the drugs are waning and we're losing him all over again. If the Dr suggests upping the dose it might improve things...but then we'll just need to go through losing him another time....and maybe another after that..... It's beyond cruel
At the end of February we were told to prepare for the worst because of the way his tumours have merged and grown. The oncologist suggested if it grew into the brain stem (its touching it) then we would have days but if it continued to move backwards and across to the other hemisphere then we would have a few weeks or 2-3 months at best....the just in case drugs continue to sit quietly on top of the fridge. Come Monday, we're 8 weeks into that timeline.
As I mentioned, physically he's still in incredible shape - he ran about 4 miles today and has walked another 7 or 8. His eyesight is all but gone in the right eye and seems to be diminishing in the left. He moves about the house holding onto the furniture. He has limited use of his right hand. He really struggles to go up and down the stairs but refuses all help. He's walking like a Thunderbirds puppet in slow motion in the house yet outdoors he's striding it out. Go figure! There's no reasoning with him. When he goes out he wont tell me where he's planning to go. When he comes back most of the time he doesn't know where he's been...or can't tell us where he's been. He misunderstands everything we say. He takes things totally the wrong way and sulks like a child. He can't read. He cant write. He can't follow anything other than a simple conversation. He struggles to follow the storyline in films and TV shows. His short term memory is gone. He's very restless. He's nippy and quite nasty a lot of the time...
I've long since lost the person I married.... I just wonder how much longer before I lose this version of him too.
I'm sorry if this all sounds doom and gloom as that's not really like me. I'm a realist though. I've long since accepted that this won't have a happy ending but this life he's trapped in is cruel and there's not a thing anyone can do about it. That tears me apart. Watching my kids see their dad go through this tears me apart...it's tearing them apart too.
I guess what I'm trying to say here is stay strong. This rollercoaster ride takes its toll.... Take care of yourselves as well as your loved ones.
Thanks for being there for me. I do appreciate it.
love n hugs to you all
Wee Me xx
