I saw my breast surgeon today at 4pm, she was running late for my 215 appointment. Three people were ahead of me. It must be hard being a surgeon or oncologist, having to give people bad news. They don't show it when they come to the waiting room, pull a file, and call a name. (My hospital file is an inch thick now. I'm hoping I don't graduate to two folders, I'm hoping to keep things simple from now on.
I still haven't heard about the breast MRI appointment that I've been trying to arrange in Hobart. I've called 3 times, waited on hold 15-20 minutes each time, been cut off twice, and they still can't tell me if I have the appointment they talked about for next Wednesday. They keep saying they'll call me with a time. Maybe next week.
My surgeon seemed surprised when I said I had a copy of the mammogram/ultrasound report - I think she was ready to do the whole viewing scans and discussion thing. I hope I saved her 15 minutes and helped reduce the wait time for the people outside.
The report recommended a core biopsy to investigate the increased micro calcifications in the upper outer quadrant. II told her I'd be prepared to have the breast off without a biopsy, as we were thinking about doing a prophylactic mastectomy around now anyway, before we found the brain tumours.
She said it would be better to do a biopsy first, that there is little risk of seeding from breast cancers (as opposed to pancreatic and other cancers), and that a biopsy would tell us what we're dealing with, which would determine how quickly we need to act. Her explanation seemed to make sense, though I have vague memories of the last biopsy hurting like hell, tears running down my face, and the radiologist holding my hand. I'll try not to remember any more, lest it raise my stress levels, which won't help when they do they biopsy next Thursday afternoon.
There was book in the waiting room today, called Coping with the emotional impact of cancer. Browsing through it, it seems I've been using some good strategies (some of the time). It also gives lots of other strategies and advice that seemed helpful - I'm going to order a copy.
http://www.neilfiore.com/becomeactive.shtml
So how do I feel about this latest development? Acceptance that there's something that needs to be investigated, that something might need to be done. Resignation to a bit more pain (the biopsy), and getting that prophylactic mastectomy sooner than expected. Frustrated that my dramas aren't over yet, hope that everything will be okay. Determination to beat this, to continue to get healthy - I've been walking a bit further each day, and feeling stronger and more energised for it.
I'm more distressed by the effects of the ongoing stress on our family unit. Everyone's tired and irritable, resulting in frayed tempers, and the boys illustrating increasing skills in winding each other up. I've been doing so well in staying calm and diffusing arguments for the last few months, but I lost my temper badly yesterday, in response to everyone else losing their own. I felt like a hypocrite, and very guilty, but I'm not a saint with unlimited patience, and I can't bear to have the boys yelling at each other. I'm also frustrated because I can't find the iPad after hiding it somewhere sneaky in the middle of the night - this was several days ago. I'm pretty sure it's in the walk-in robe, but I may have to clean it out completely to find the iPad. I think we'll survive, though the boys mightn't agree. (they like to watch gaming videos on youtube while sitting on the toilet - the iPad hasn't fallen in yet. (touch wood)
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.
