Hats aren't really an issue to me though I have a whole set of beautiful silk scarves and no idea how to tie them so they look cool like other cancer people. My hair is growing back after two surgeries and I have got rid of the awful 80s mullet effect left after the front half of my hair had been shaved.
I am forced to wear a crash helmet, like a rugby helmet, everytime I walk anywhere to protect the bit of my head where the skull is gone. I think it is hideous and it squeaks when I talk or eat but I am stuck with it until at least April since that is when I finish the warfarin and the surgeon won't operate on me again while my clotting status is so compromised by drugs.
I only have my body to blame cos I got not one but two deep vein thromboses post operatively, but fortunately they were so huge they didn't cause any trouble apart from pain (in the arm one). I see the haematology doctors on Wednesday and I may be left permanently on the warfarin.
Start radiotherapy shortly, I hope. That is having been brow-beaten into it, I just want it to start happening. Today they took a cast to make me a perspex face mould, and I am back there again tomorrow for a planning and simulation appointment.
Auckland City Hospital haven't been able to do enough for me. I was a resident for two and a half months in the neurosurgery ward. Everything seems to happen too quickly for me to sit back and think about it, so may I shouldn't have gone in there in the first place. As soon as anyone finds a lump etc. the medical profession feels obliged to "do something " about it. Mine was very obvious and huge on the MRI and I was keen to find out exactly what sort it was: Oligiodendritic glioma, AKA the "Ollie" grade 3 and big as a goodsize grapefruit taking up all of my right frontal lobe and a little on my left. Surgery removed about 30% of it and since then I have been dealing with surgery complications like infection and DVTs which have delayed the radiotherapy. I am determined that the radiotherapy is going to get rid of the tumour altogether and I am certain that this disease is not going to "get me".
FormerMember
Hi Road girl,
What a great positive attiude you have. Love the squeaky helmet - it's coming up to Christmas so maybe you should decorate it with a bit of holly and a few baubles etc. Or mistletoe - might as well get a few snogs while you're at it.
My real name is Janet and I am not that positive... just keep sending myself up. I don't really have an emotional response to any of my cancer stuff: I think because my right frontal lobe of my brain is almost entirely occupied by "the ollie" and that is the bit where all the emotional/creative stuff originates. I tell my adult children every day that if anybody is entitled to be upset then it is me, but somehow I can't manage it. I am sure it would be good for me to have a bawl but I don't know how anymore.
I am anxious that the radiation will destroy my intellectual mojo... which afterall is all I really have to offer anyone.
My daughter was bringing some stuff to decorate my helmet so I look a little less like an all black scrum forward but that hasn't materialised in her 15 second visits yet. I wouldn't want mistletoe because I am not interested in any snog from a man... in fact I would be appalled... I have only had women for many many years now and the last ten years or so haven't even allowed men into my house (except my sons who are not really men at all).
