The holidays are over. I feel sad that I spent half of the time in hospital, but glad that I'm feeling better today. I slept really well last night, had a deep nap this afternoon, and managed to eat a full main meal at Mud (restaurant) tonight. Sadly, the evening was spoilt a little by having to wait until 730 for a table, and David being in a happy, jiggly, chatty mood - he just wouldn't stop tapping his feet and being silly. I love it when the boys are happy, I remember being happy, silly and irritating like that myself as a child, so it's obviously karmic payback to have to put up with it when I'm tired and irritable. Ben never had a childhood, or was perfectly behaved throughout, so his tolerance for such shenanigans is close to zero, and he quickly became more irritated than I was. I think we need to get out more and mix with other families, so that he can see our children are not abnormal. None of us need to be irritable with each other, and it upsets me a lot when Ben and the kids get upset with each other, it always has, it's just worse now that I have had a life-threatening illness.
I was feeling a bit despondent this morning. I realised it's because no-one has given me a clear plan of what to do next. I have a couple of appointments with specialists lined up, I know I'll need to have repeat brain scans at regular intervals, but apart from a vague plan to get fitter and to master the ketogenic diet for cancer, I really feel a bit adrift, after 12 months of having treatments lined up for me. I'll have a talk to some people about it this coming week, it would be good to get a sense of direction.
As far as I know, the surgery, chemo, and radiation for my brain tumours has been successful, based on the last MRI scan. Brain tumours don't usually send off secondary tumours to other parts of the body, they cause enough trouble in the limited space provided by the skull. Breast secondaries can pop up in several other organs, so fingers crossed that the CT and RT for that was effective. I had a bone scan during my last admission (to investigate lingering and unexplained pain in a rib), and my bones look clear, so that's reassuring.
I'm going to presume that I'm cancer-free, and engage in every activity I can to stay that way. Light to moderate exercise, the ketogenic anticancer diet, meditation, socialisation, and pleasant activities scheduling to stop me going mad from being home alone. I love our house, but begin to feel a little trapped being here all the time. I will ring up the builder who was going to paint it for us - maybe getting a project going will help me gain some energy, and distract me from my fatigue.
954pm, time to turn of the lights and sleep. Love and best wishes to you all.
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.
