I'm feeling better tonight after getting lots of sleep from Friday to this morning - even started to dream again! (funny ones, too :-)
My neutrophils up from 0.1 last Wednesday to 0.2 today, so I qualified for a GCSF injection to boost them, as they've been down for so long, even though I haven't been taking my Temodal since Thursday.
I'm very proud that I haven't developed an infection with almost no white blood cells, but I suppose that staying in bed, at home, has been a good strategy. I really didn't have the energy to do much else, and felt quite pathetic. It was humbling and surprising to see how lacking physical energy affected my ability to stay optimistic - I admire anyone who manages to continue on with a chronic illness or chronic pain. It is so debilitating to feel like you have no energy left, and to fear that you won't regain it. I confess I've been a terrible scaredy-cat at times over the last few days, I was worried that my lack of energy might mean I was going to die, so it's really good to have rallied and to feel my energy building again.
Strangely enough, just like after my surgery, I have an overwhelming urge to do further decluttering in our house - the excess of papers and other unimportant things upsets me. I want my environment to be simple and to only have the necessary things, nothing that's being kept just in case it comes in handy one day.
My hair is going to come off very soon, it is looking ridiculous (the spirals have gone, and there are just tufts of hair left). I'm kind of glad that it might never grow back evenly, I don't think I could cope with fluffy curly hair.
Thanks to everyone who has sent messages and emails. I might not be up and about much, but it's nice to be in your thoughts.
xxx
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
