Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: My-my-my-my-seroma

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.

Sunday, 10 February 2013

My-my-my-my-seroma

Seroma definition: a collection of fluid under the skin

In reality: squishy, growing, looks just like a boob. A common side effect after mastectomy.

Drains are inserted at the end of surgery to remove the fluid. When the output decreases to a certain amount, the drains are removed. I had one removed on day 3, and the other removed in day 4 after surgery. Some women go home with drains in, but the risk of infection increases the longer the drains stay in, my surgeon drained 60 ml with a syringe on day 5, and said she'd prefer not to drain less than 100-150ml because of the risk of infection with draining too often.

I took the first picture on Friday, when i wondered if i should get it drained again. By yesterday, the amount of fluid had increased to the point that my skin was stretched and getting uncomfortable. When I lay flat, all the fluid went to my armpit, which started to ache at the edge of the surgical area. I guess the fluid was pressing on skin and underlying tissue that hadn't been separated during surgery. The second shot was taken this morning, when it was very uncomfortable. So it was a relief to have over 400 ml drained today, though the second black and white shot shows that it was hard for her to get all the fluid out. The final shot, taken tonight, probably doesn't show the further growth clearly, but it's grown from in cup size from AA to A again today. Like a bizarre, accelerated unilateral puberty, though without the hormonal flucutations and peer pressure;)

Biggest nuisance is the increased pain from this. My left armpit has been feeling numb (good not to feel the needle going in to drain it), but now the area behind the armpit is sore, and under where the breast was.

I've been keeping track of my pain meds on the fridge, and though I wanted to have 2 panadol and 2 endone before bed, that would have put me 2 over my daily panadol limit. So I had one of each and expect to repeat that during the night. I hope the pain goes away soon, I'm surprised at how tired I feel. Very comfy sleeping on my back, though.