Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Radiation photos

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.

Friday, 30 August 2013

Radiation photos

30/8/13

In case you're interested, I'm goiong to share some images of the effects of the radiation on my supraclavicular area and underarm. Radiotherapy affects the basal skin layers, so I was encouraged to keep my skin moist during treatment by using thick sorbolene cream at least twice a day, at least 2hours before treatment, and immediately after. Over time, the lower layers of skin cells rise to the top, so the skin can continue to show changes for 2-4weeks after treatment. The area on my collarbone started to become itchy in the last week of treatment, so I was given some steroidal cream, and adhesive dressings called Mepilex, that gently stick to the skin and protect it. The skin started to appear a little broken last week, so I was told to keep on with sorbolene, avoid using the steroid cream on the broken area, and continue with the Mepilex. Skin started peeling off when I removed the Mepilex last weekend, but the nurses said it would probably peel off anyway, and I had to keep applying sorbolene. My collarbone area has become more itchy over the last couple of days, and I'd run out of mepileagain, so I went back to the lovely nurses at the Holman Clinic, and they gave me some Flamizene to put on thickly, once a day.

It looks worse than it feels - I still have a large numb area under the mastectomy scar, so I can't feel the underarm area at all. Lucky in one way, but I worry that the lack of pain removes a means of feedback in case I get an infection. Although I'm told that infections are uncommon, I've experienced enough uncommon side effects in the last 7 months to be wary. Alert but not alarmed ;)

These photos show the way my skin has changed over the last couple of weeks. The first two were taken in the final week of radiotherapy (last week). The second pair were taken at the beginning of this week, and the last two were taken today. I may add more over the coming weeks.

The black dots in the hair follicles are just increased pigmentation, I'm told. There are some wrinkles in my skin from the support singlet I wear (bras are too uncomfortable), and there is a build up of sorbolene in the wrinkled skin under my scar.