It's been strange being a neuropsychologist undergoing treatment for cancer. As an allied health practitioner, I'm used to multidisciplinary models of coordinated care for people with chronic disease, or needing rehabilitation. With cancer, from diagnosis to the end of treatment, it felt like I was in a well-organised production line - tests, diagnosis, treatments all flowed in a logical sequence. Once the treatment was over, I felt like I'd fallen off the conveyor belt and onto the floor - there was no sense of coordinated care - we have to book the regular reviews with the oncologists, the blood tests, the port flushes (every 6-8 weeks). Everything was left to us to ask about - nothing was written down - it would be reassuring to have something in writing about how often I should see the various oncologists and have scans. My memory isn't too bad, but there are so many things to remember, it would be handy if something was provided to patients and their carers to make sure that nothing is missed out.
I was very happy to find this page in a google search today survivorshipcareplans
Rather than reinventing the wheel, I'm going to try out the three plans listed for myself, and recommend that they start using something similar at our local hospital. It would help provide a practical anchor for people after treatment is over, and lessen the sense of being cast adrift - this is not a reflection on the quality of care I've received, just the strangeness of moving from daily radiotherapy over several weeks to no appointments at all for weeks at a time. While I can make up my own care plan, it would be great if guidance was provided to all cancer patients, starting after diagnosis. Perhaps if patients were given information about the dangers of infection during chemotherapy, there would be fewer deaths due to febrile neutropenia - I've heard of people who didn't seek attention until it was too late.
The http://www.livestrongcareplan.org site gets you to do a questionnaire, which then gives an individualised plan, based on the type of cancer and treatments received. It allowed me to complete two plans for my two types of cancer, and both plans gave reassuring information. Well, mostly. Thinking about long-term side-effects of treatment isn't reassuring, but it's important to know they exist, and when to seek help.
PS - the second video about surviving cancer is worth watching.
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.
