I'm feeling much better after receiving 2 units of blood today. I'm warm for the first time in weeks, not so tired, not dizzy, and don't feel unwell. It's lovely.
I had a good long chat with one of the nurses today, including about the challenges of being a patient when one is used to being a healthcare professional, and on how doctors' family members can get treated differently from other patients. I found this interesting, though somewhat wordy, article, about the issue of dealing with "physician-patients" or the family members of physicians.
http://jama.jamanetwork.com/article.aspx?articleid=188281
It fails to mention findings from the clinical judgement literature on a tendency of clinicians to not want to come up with potentially bad diagnoses in patients with whom they identify, such as other clinicians, or the partners of their colleagues. This is particularly difficult in small communities, when many health professionals know each other.
A suggested solution to this impediment to clinical judgement is for the clinician to recognise when they identify with the patient or the patient's partner, and to evaluate if it may cause them to be not as vigilant as usual to clinical symptoms or signs; to always go through the same diagnostic procedures for every patient, no matter who they are; to consider all diagnostic options and rule them out methodically, particularly the worst case scenarios; or to pass the patient on to another colleague.
An interesting thing from the article, for me, was the comment that physicians often minimise, downplay, or misdiagnose their symptoms. I know I've been guilty of that, and I'm just a neuropsychologist with a dangerous amount of half-knowledge. I can talk the talk, but I don't have the knowledge to back it up. It's very hard to stop talking the talk when I see a doctor and treating them like a colleague, and ask them instead to pretend that I know nothing, that I'm just an ordinary patient, and that my husband knows nothing as well.
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.
