Thursday 22 November Ramble
November 22, 2012 — Headless“In its early stages, insomnia is almost an oasis in which those who have to think or suffer darkly take refuge.” – Sidonie Gabrielle Colette
You know the story – didn’t get to sleep until about 1:30. Got plenty of reading done though. Wake at 6:30 take meds then back to bed to doze as to sore to get up that early. Up at 7 then and make a cuppa, then get ready to face the day. Head off to work via St. Thomas’s as Lachie has his entry assessment exams today. Leave them both there and head off to work via the Vampires, sorry blood test lab. Then stop at the Coffee House and have coffee and a chat about what we need to ask the Doc at Monday’s appointment. Make sure we have all our questions down ready to roll. I know it is still 4 days away but that will come around far to quickly, and while they are fresh in our minds.
I’ve been reading about Radio Gamma knife surgery. But unfortunately it turns out that this won’t be an option for me as the tumor type is so complicated around it that they risk doing more harm than good. I found a posting from a person though that has the eact same type of tumors too – the first one I’ve found. Got quite excited, but the posting is from mid last year and I can’t find anything else on the web from him so only can presume that he lost his fight. Still I am going to do some more research about this surgery.
Also I’ve been thinking about facing this last round of Chemo. I guess to be blunt I am worried/scared that when it stops these MoFo’s are going to light up straight away and continue on their merry growth. Reality is they could do that, or they could wait for several months before anything happens. But when it does happen, I will have to find a new strenght and fight as it is going to be so much more harder to do without the assistance of the Chemo. This could be where the stubborn attitude will come to the fore. I will be needing all the support possible as well as I can only imagine how bad the mental fight will be as well as holding on emotionally to all I have. If they can get my pain managed better then I will be able to stay focussed on the task at hand. I will have top also work hard to stay out of the dark places that you go to sometimes. So the fight will be a constant 24/7 battle that is going to test the endurance of me.
I read a letter a wife had written about what it is like from the Caregivers perspective, and there was a paragraph which I thought was very good describing how looking at the patient (her Husband) from the outside and imagining what it was like for him. This is that paragraph. ‘I try to imagine what having that reminder in my skull might be like. And while I did live with fear, closely, for a long time , I’m sure that my imagining doesn’t even come close to the reality of what it was like for him. Dave looked death in the face every day. He carried it around in his head. What must that be like? And then I think about what a crab I am when I have a headache or a cold. And then I’d think about what Dave was dealing with . Wow. Humbling’ This is the best possible description I have read of what it is like living with this bloody life stealing illness. Every time you look in the mirror you are reminded of the reality that there is 3 bombs in my skull, 1 the size of a golf ball with only one mission – invade and destroy for no purpose expect that biology and genetics has allowed to happen. That is the real bugger with it all there is no physical purpose for biological need for the human body to grow tumors but it can and it does and it is random, and truly does not discriminate in anyway. Also while I say that it is our journey, and everyone whom cares for me or aids me is involved at some level – yes even you reading this is becoming involved, it is in an unselfish way (please understand what I am saying here), only my journey because when I die I will stop, but you will all continue on your own journeys and they will be yours, and only yours. While it will involve so many others it won’t be their journey. You will learn from it though.
Head off to the office then. Have a great day, everyone is in a good mood and having a laugh so it makes the day go quickly. Head off about 2pm, home and have a quiet time as feeling very tired and drawn out. Others arrive back home about 6:15 in time for dinner, no big meal, just nibble on a couple of things – bloody nausea. Start blog early as a few things to say and fading on and off. My head has being giving me hell today. Watch some TV and then M&D time. Figured if I go to bed earlier then by the time my brain and the pain winds down a bit, I will be drifting off before midnight. But tried this before and it doesn’t work. Hope you have had a good day. Take care.
Kia Kaha.