Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Seeing in colour

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.

Saturday, 2 February 2013

Seeing in colour

after much discussion with my friends, I'm going to share some images with you, in the hope that they may be of educational value.

I took some pictures of my doomed breast on Wednesday night, as it's suggested to be helpful for the grieving process, and when time comes for reconstruction.

The special effect feature of the Camera+ app allowed a better view of the contour change in my now defunct left breast, visible when taken from below, with arm above head. I've included screen shots of the various special colour effects from the app, as they show contours not easily visible to the naked eye.

I hope that a colourful pastiche of part of a cancerous breast will be viewed as educational, rather than offensive or titillating (pardon the pun ;)

The nipple was permanantly perky, or retracted, for the last 8 months, and increasingly so before the surgery. It was more retracted in the lower half, and the contour changes evident in these images wasn't visible when my arm was at my side. They also weren't so clear when I looked in the mirror.

Nipple retraction is considered a warning sign for breast cancer. It was like the nipple was attached to the underlying tissue, so when I raised my arm, as I did for this shot, the lower part of the nipple moved up with the beast tissue. This doesn't happen on my normal side.

You can see similar contour changes in a painting by Reubens, though her arm is by her side. There has been dispute over whether or not the changes he painted were due to breast cancer. In my case, it's not disputed. The tumours were not palpable from above, the tissue just felt lumpy. My surgeon said she could feel them from underneath the breast tissue during the operation.

So if you have dense, lumpy breasts, please don't give up asking about them, and don't give up examining them regularly. If you notice any changes, particularly in the skin or nipple, please see your doctor, and if your ultrasound and mammogram are normal but you're still concerned, think about paying for a breast MRI, which may have detected my tumours earlier.

PS I accidentally posted one of these to Facebook when I was trying to text it to my cousin (the horror!). I managed to delete it before anyone saw it (I hope)!. I don't want to get banned from Facebook just now, it's a source of welcome support and distraction:) and I don't know why they're opposed to breasts, but allow all sorts of obscene and offensive language.