4am by the Post Office clock. Have just swallowed my third Clindamycin with some custard (having transitioned from peaches/cream, peaches/yoghurt, raspberries/yoghurt).
I was supposed to take the dreaded antibiotic at 11 last night, but fell asleep around 9 and didn't wake until 230. I was having such a good sleep, I didn't want to wake up and take the tablets, but as they only last in the system for 6 hours, I didn't want to give any lurking bacteria the chance to breed for 12 hours, not when my white cells are probably diminishing in number.
This cycle hasn't been too bad. I had awful motion sickness on the first night, but I've got some stemetil now, so I'll be able to avoid that feeling the next time. I spent the second day back in the Holman Clinic, sleeping and getting IV fluids in the morning, then sleeping until my G-CSF injection later in the afternoon. The nurses didn't have a problem with me staying another couple of hours, I would have had to come back anyway, and they had another room in case anyone else needed to come in.
The worst thing this cycle has been the fatigue, and irritability. The latter might have been compounded by the 5-day break over Easter. Having the kids home is lovely, but they can be so demanding, and my usual school-day routine of relaxing on the couch doesn't work when the boys are around. I also find it hard not to potter around in the kitchen, but it wears me out.
I took the boys to school yesterday morning, and collected them in the afternoon after a nice long nap. I was very careful with my driving, it seems to take a lot of effort to concentrate on the road, and I think I won't drive again until I feel better. When we got home, I had to lie down, and I couldn't bear to talk to anyone - the energy required was too much, and I found it very irritating. Mum brought Hannah back from a CWA function, and Hannah was brimming with happy stories her day. I couldn't bear to listen, I had to ask her to sit down and watch Grand Designs with me and to stop talking. I felt incredibly rude, and I still feel bad about it, but I just couldn't cope with having to listen actively, it just took too much energy. I'll need to manage my fatigue better, so that I'm not grumpy with the people I love, which makes me even grumpier out of guilt and shame.
A final note before I go back to sleep - at school today, I saw a mum who I haven't seen since before I was diagnosed. She was rushing to collect her son, and I called out to her because I was so happy to see her again. She did a double-take when she saw me (standing bald-headed because it was too hot in the sun for my beanie). I thought I'd told her about the diagnosis by text message, but she apparently didn't know, though she said she'd heard rumours and didn't want to ask. It was a weird interaction - I feel the same person as before, I was happy to see her, I forgot that I was bald... She seemed embarrassed, shocked, awkward... I felt bad for her discomfort, and I wished I had the time to talk to her properly, but she was obviously in a hurry.
It's the first awkward interaction I've had with anyone since I was diagnosed. Not bad for 2 months, I guess, though it gives rise to unfamiliar feelings - the sense that someone may think that I've changed because my appearance has changed; the concern that someone might avoid seeing me because of my diagnosis or the fears and feelings they might have about cancer; the sense that I am still me, even though I'm having some rather revolting treatment right now; the realization that, yes, this is a serious illness, and that I've been guilty in the past of avoiding people because I've been worried about them or couldn't bear to see them unwell. Which makes me feel bad for my cowardice, my avoiding seeing people I love because of the pain it caused me to see them suffer. They were still the same people, with the same need for contact from others, an even greater need because of their suffering. How bloody selfish of me to avoid seeing them because they were sick and it upset me! They were living with it, they would have liked to see me, but I ran and hid because I didn't want to see them suffer, because it made me feel bad. They were still the same people, despite the illnesses, with the same need for contact with other people. I hope there's a heaven, so I can apologize when I see them again. But for this life, no more running away from people I care about because of fear of feeling sad or angry about what they're going through. The fear, sadness, and anger are my baggage. The interaction with them will be good, and a manifestation of love, the most powerful force in the universe.
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.
