3am on the oncology ward. I'm in pain and feeling mightily peeved.
Woke up feeling hot and sweaty, and my sinus pain back with a concentrated vengeance. Pain 7-8/10 (vs 1-2/10 yesterday), and concentrated behind my right eye. A deep, sharp pain that lessens slightly when I clear my post-nasal congestion (resulting in revoting sound and equally revolting postnasal drip). Although the pain isn't spread across my forehead like it was yesterday, it's concentrated on a single spot and seems to extend to the back of my head. Or maybe my neck is just stiff from holding my head funny?
The bones above and below my eyes aren't sore to touch, unless I press very hard, so I've had doctors asking me all week how I know it's sinus pain. I just know, I say, I've been having recurrent sinusitis since 1994, when my allergic rhinitis decided to stop displaying itself as a nose-abrading display of sneezing and running, and to retreat to my sinuses. I've learnt to avoid it with a daily antihistamine. If I forget to take my antihistamine, I get symptoms in a day or two, and try to suppress them by nasal irrigation (fess make a sachet that gives a solution of buffered saline with xylitol), and sudofed. If the symptoms don't resolve, I need to take antibiotics. Otherwise I end up lying in bed with the blinds drawn, not wanting to move my head, feeling fatigued and easily irritated. I've wasted weeks of my life with this bloody condition. I know my own body.
So I'm peeved because I wasn't assertive enough when I saw my doctor last week. He seemed dubious about my prediction that I was getting sinusitis, and said that taking an antibiotic for it might mask a more serious infection. I left with a script for amoxicillin, promising only to take it if I developed a full-blown sinus headache. Not remembering that the playing field has changed, that I was neutropenic. I'm not annoyed with my doctor, I'm annoyed with myself for not being assertive about what I know about my own body.
My fatigue and need for sleep on the weekend were associated with the tell-tale buildup of congestion in my sinuses. I was taking Sudafed to reduce the symptoms. The first symptoms after the fever and shaking in DEM were rapid onset of sinus headache, earache, and sore throat. The seroma inflammation and redness might have been a red herring. The seroma fluid didn't grow a culture, and my surgeon thought it was probably a sympathetic reaction to the underlying infection. The sinus headache has been bothering me all week. It only started to resolve properly yesterday when they let me take Sudafed. I haven't been able to provide a sample of the postnasal discharge because it's postnasal. No runny nose, no sneezing. It hurts my head to cough, and there's not enough postnasal discharge to cough up anyway.
So I'm going to ask the lovely, thorough, registrar who suggested a sinus CT and ENT referral to arrange them for me. I've been doing my reading (e.g. http://allergies.about.com/od/noseandsinusallergies/a/sinusitis.htm), and while I don't want to undergo surgery to improve drainage while I'm having chemo, I would be willing to try steroidal and non steroidal sprays to reduce inflammation and discharge. I'll also ask if I could have some amoxicillin, or something, for the current infection. I know they've been hitting me with heavy-duty antibiotics targeted at the cultures that came back, but my sinusitis usually dissipates a day or two after starting antibiotics. And this thing is so frigging painful, I get stabs of pain that go up to a 9/10. Must turn light off, take my 0.5 mg of lorazepam, and get some sleep. Grrrr.
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.
