I had the mammogram and ultrasound on the morning of Thursday the 17th - the mammogram was so bloody uncomfortable (again), especially since she took 4 scans of my very dense left breast. I went straight to the ultrasound, and, curses, dosed off while she was imaging the left breast after I saw the first two cysts that were there last year. I woke up and joked about the large cyst on my left that I'd called Alfred - he's about 9cm long, and looked the same to me as last year - long and squishy.
The ultrasound seemed to go quicker than the previous year - different sonographer, I thought. Then I noticed that she seemed a little less chatty than she had been at the start of the scan (maybe because I'd rudely gone to sleep?) and I asked her if the scans showed anything. She said it was a little more dense than it was last year... so I trotted off to my surgeon's office to make an appointment for a review. Was told the first available was February 5th, and that the increased density was "probably nothing." Nonetheless, the surgeon would call me the next day if there was anything to worry about.
The 18th was the day of a funeral for the wonderful father of two friends of mine. I'd arranged to take my boys to a friend's place for a play in the morning, my mobile phone was set to silent, and the friend's place had poor mobile coverage. My husband managed to get through to me just as I was leaving, saying that the surgeon had been trying to call me, and to call her back immediately. Didn't sound good. Rang the surgeon - ultrasound showed an abnormality, and possibly a lymph node - she'd scheduled me for a biopsy on the 24th and followup with her the next day. So I drove to collect my husband and went to the funeral, in shock and disbelief - I'd convinced myself I was just a neurotic, hypochondriacal woman with lumpy boobs. There wasn't supposed to be anything pathological - and I'd slept through the ultrasound.
Of course, the funeral was difficult. It was a beautiful funeral for a delightful man, and the fourth one I'd attended in less than 12 months. First was my father's in Feburary last year (he died in a nursing home after a long struggle with normal pressure hydrocephalus), second was a cousins (died in the same NH with progressive supranuclear palsy), third was another cousins (I was close to this one, she had a long and courageous struggle with cervical cancer), then my friends' dad (renal and liver failure - he'd managed his diabetes well, but didn't realise that coeliac disease can cause cirrhosis of the liver). So I was sitting behind my friends, wondering if funerals were like weddings, thinking I could take the best from all of them, thinking about the beautiful cemetery in my home town where I'd like to take my final rest - I choked up after singing the first line of 'The Lord's my Shepherd', and tried not to succumb to my fears.
I'm not very good at asking people for help, so it was kind of a blessing to have received the surgeon's news one hour before the funeral. In the gathering afterwards, I blurted it out to a number of old school friends, and got myself an immediate support group. It would have been harder to call or text them if I'd found out on any other day. But in sharing the news and the tip of my fears in that setting, I felt supported and accepted and that has helped so much.
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.
