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, 12 November 2013

Dexamethasone, side effects, and fighting on when you feel utterly drained and like crap.

I've been on Dexamthasone since my dramatic MRI scan on September 4th. It stopped me from sleeping for the first month, the dose was tapered down from 4mg 3 times a day (tds) to 2mg in the morning, and 1mg at lunch until I had the seizure, then I was back on 4mg tds. I'm back on 2 and 1 mg again now, which is possibly why I'm sleeping better, but I seem to be getting an awful lot of the side effects listed on the mayo clinic website.

I'm going to select the symptoms I've experienced, just because I'm obsessional and like lists. I'm also on a lot of other medications, which can produce similar side effects, so the side effects are  probably not all due to the Dex, which I need to take. It helps to avoid cerebral oedema and raised intracranial pressure, which can, in the tenth Doctor's words, be "extremely very not good." Signs of raised ICP include nausea, vomiting, and double vision. If I get them, I need to tell my rad onc, and he'll probably increase my dex dose again.

Side Effects

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:

More common
  • Agitation
  • Anxiety
  • Blurred vision
  • Dizziness
  • Headache
  • Irritability
  • Mood changes
  • Nervousness
  • Numbness or tingling in the arms or legs
  • Swelling of the fingers, hands, feet, or lower legs
  • Trouble thinking, speaking, or walking (mixing up words in my case)
Incidence not known
  • Decreased vision
  • Dry mouth
  • Facial hair growth in females (light hair on sides of face)
  • Fatigue
  • Full or round face
  • Heartburn and/or indigestion 
  • Increased hunger
  • Increased thirst
  • Increased urination
  • Muscle pain or tenderness
  • Muscle wasting or weakness
  • Nausea
  • Pain in back, ribs, arms, or legs
  • Sleeplessness
  • Trouble sleeping
  • Unusual tiredness or weakness
  • Vision changes
Incidence not known
  • Thinning of the scalp hair
Yippee! So many fun experiences! I'm so glad to be relatively healthy, and young. The list sound awful, but I don't experience all of them all the time.

 I do, however, finally understand something that used to mystify me: why some family members with cancer didn't  report new symptoms to their oncologists (symptoms which always signalled problems, otherwise I wouldn't have learned of them).I suspect it's because they just didn't  want to have to undergo more testing, or more hospital admissions, or have more bad news. Denial is a great defence mechanism, unless your health is on the line. But how do you help someone who has been fighting a chronic or life-threatening illness to be keep on identifying and confronting potential threats? I'm so exhausted, and feel so unwell today, it was hard to text my oncologist for advice, but it's not just about me. I need to keep well for David and Nathaniel, which means being vigilant about my health, risking looking neurotic at times, and getting a balance of rest and exercise, and time with family and friends. Something I've been neglecting lately, not that I've wanted to.

PS. My oncologist responded to my test by saying that my neutrophils are down to 1.2, so I need to check my temp every 6 hours, stop taking the Temodal, and follow the same precautions as before. So it's not just in my mind :)

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