919pm, Saturday 11th May
A quiet night in the emergency department. Back here because my temperature went over 38 again. I'm in cubicle 28, waiting for a nice hot milo, feeling like an regular customer. I'd rather not be getting frequent flyer points here, but at least they've always had a bed for me, and they treat me well.
I'm getting so used to the drill, I asked if I could keep my clothes on rather than put on the undignified gown. I walked to the Xray department and was almost able to position myself for the obligatory chest Xray. I made sure Ben and the boys left before they needled my port (thank goodness, the nurse from the oncology ward doesn't like my infusaport, and had to take the needle out after the first try). I cracked jokes with the nurse, who was mortified that she didn't needle my port correctly the first time. None of the other nurses from 5D wanted to come down, apparently. I told her to tell them I'd seek my revenge...
This is not where I wanted to be the night before mother's day. When I realised my temperature was up, I drank cold water, took a few readings over 30 minutes, and even rang my oncologist, hoping he'd say I could stay home. But no, if your temperature goes over 38, it's straight to emergency. Do not pass go, do not collect $200. I'll be getting IV antibiotics (again), and will be in overnight. At the moment I'm getting IV fluids, while they wait for my neutrophil count, which will influence what antibiotics they give me. It's unlikely that I'm neutropenic, I only had chemo 4 days ago...
Symptom-wise, I have a sore neck, aching calves, tingling in my feet that comes and goes (hello, peripheral neuropathy!), a tender tummy (might need an ultrasound tomorrow, some pain above the gall bladder), constipation (never found out if I had clostridium difficile - no news is good news), and nonspecific aches and pains. It's almost as if someone has been sticking pins into a voodoo doll. I'm not happy.
It's getting boring having side effects. I'm sick of it. I thought I'd had enough in the last 15 weeks - there should be some quota on the number of side effects a person can have.
I've booked a massage for Monday at 1230. I want to have it, to treat my aching body to an hour of gentle bliss.
Ben and I walked down the street this afternoon, scuffing the autumn leaves, fussing over Rosie (my surrogate puppy). An elderly couple who live in the area walked towards us, him with his walking stick, her arm through his. My gait was as halting and awkward as theirs, but they didn't notice, or at least had the grace not to comment. He joked that we could rake up the leaves on the way home. We laughed. I had to ask Ben not to dawdle, the pins and needles in my feet were painful.
I dozed for an hour or so before dinner, a pillow under my legs. I started to feel hot and clammy, but it was a warm day. I had some ibuprofen at 6, ate a couple of fried eggs, still felt hot, and took my temperature. 38.3.
So here I am, annoyed and incredulous that I'm back here again. I'm so sick of coming here, but I daren't ignore a fever. I don't want a oneway ticket through ICU like the woman who waited too long to get help.
Taking a "better safe than sorry" approach has its costs. I hope it's an investment that pays off in the end.
For all of you who are going through, or have been through, worse than me, I'm so sorry. You're much braver than me, and stronger. My purpose in writing this is to keep family and friends informed - it's better than having to repeat the same stories, which was getting me down when I was first diagnosed. It can be therapeutic to write out my thoughts and experiences (there seems to be quite a bit of evidence supporting the benefits of journalling during treatment). I don't mind people knowing I am being treated for cancer. It's nothing to be ashamed of. I'd prefer people know the truth, than half truths like "Fiona has problems" (sounds like I've lost the plot!), or wondering if my hats are a fashion statement or a necessity.
I wish I didn't have this damned thing, but if wishes were dollars, we'd all be rich.
Sending love and healing energy to all of you.
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.
