Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: In appreciation of nurses

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.

Tuesday, 27 May 2014

In appreciation of nurses

The nurses I've encountered in my time as a patient are the most remarkable people. They deal with countless difficult tasks and situations - from gently washing malodorous bodies and pressure wounds, accepting stool samples, reassuring confused, agitated and paranoid patients, in a calm and compassionate manner that is not judgemental of the patients and has to help patients feel accepted and cared for.

I feel sad that I never appreciated how well they do their work until I've had the chance to see it first-hand, as a patient. They're unsung heroes of the health system, who get less appreciation than the doctors, perhaps because people don't understand how much they do every day, behind the scenes.

I am so grateful for the wonderful care I've received over the last 14 months, from everyone who has looked after me, but especially from the nurses. Their kindness and acceptance has helped me suppress feelings of guilt and anxiety at needing others to help me, and has helped me to focus on getting better, rather than feeling bad for being unwell and a burden to others.

I am eternally grateful to nurses for the care they've given me, and I will staunchly defend them if I ever hear people criticise their justified and reasonable claims for better wages or working conditions. Without them,our hospitals wouldn't function, our ill would not be cared for.

Feel free to share with a nurse you know, so they know that at least one other health professional holds them in awe and respect. It's crazy that there is often competition for funding allocation between nursing, medicine and allied health services. We need them all in order to provide the best possible care and outcomes. Big hugs to all the nurses I know. And thanks.