So after a week of waiting for a follow up call, we eventually had to give them a nudge and I spoke to my consultant yesterday
It does appear that my GBM is back, but in a different place.
It appears it’s in a place that’s difficult to get to.
So this is a surprise, I’ve always been told to look at the physical evidence. I’ve just started a new job at Red Willow, I’m still physically active and I try and walk about 5k a day and write and cover my tumour thoughts for brain tumour research., Right now, it’s 3.00 in the morning and whilst Jen will check this before I send it. I can at least still do it.
So shock and fear, is what I feel at the moment. Now I know that over the last few years some people have found my blogs / tweets helpful or not, because of my myopic optimism but actually, compared to most of the youngsters, that’s wrong, and in our community they’re definitely the ones to admire
But this morning I’m scared, and still without the full picture which will happen on Friday, tomorrow in fact as my days are all off kilter after so much waiting
I feel like I have let my children down, regardless of how cool they try and be for me . I know this is going to be tough. Joe is 20 and in his 3rd year at uni. Caitlin is 18 and A levels this year Esme is 16 with GCSE’s this year, what mess will be left?
I think of what I’m going to miss. All my childrens landmarks. But with losing Lewi, that’s something we already experience as a family.
But then Jen as a bereaved Mum. She brilliantly fell into my world 10 years ago and now after an intense love, I’m going to fall out, which isn’t fair on her.
So I’ve now met with the Prof yesterday and whilst it’s a bad outcome, it’s the least worst of a the bad outcomes. I think the clue was always in terminal diagnosis
We are given a new form of chemotherapy, I reacted well to chemo last time, so we can hope. But this isn’t a cure and it’s a holding position. The best case is that it shrinks but I’d be one of 5%.
So we move on…I took the first dose last night. I’ve rang round all my family and closest of friends and explained where we are at.
So I’m setting some targets. Firstly there is the cricket tour at the end of March to Spain. Then I’d like to do one more thing to raise awareness which I can combine with spending time with friends and meeting up with people who have been so supportive to me as I have ridden this ride, hopefully whilst visiting as many county cricket grounds as possible as the new season approaches
People often ask me why I tweet and blog, well firstly if it helps just one person diagnosed then it’s been worthwhile. Secondly, this doesn’t yet have to be the end of a life, just an adjustment to the time we have left. Yesterday, in the hospital, there was a woman who had just been diagnosed. A little older then I. We were chatting and just me being there surviving after diagnosis made a difference to her and her daughter. The words cancer and brain tumour hit you like a brick. There can be no future surely? Well, nearly 3 years on with my precious family and friends, l have proved the initial prognosis wrong.
So I’ve done a lot, but there is a lot more to do. The other reason I write it all down is for the little community that has joined me and supported me along the way. You are all a real support and your support in this world is immense so I thank you all
Here we go again, started chemo yesterday managed to get out for 5k your way today, it helps me physically but most importantly it helps me mentally too.
So…this is def the last time I update before I get Jen to edit. But all the children are coming for Sunday lunch with Dad and their good friend Annie, So from knutsford to Manchester they come. It’s like herding cats. I say to them all to carry on like nothing is happening, and it’s become very literal 😀
One thought on “The road may have got shorter”
Well done Liam. You really are a champion