4am, Tuesday morning. One hour late for my 3am Clindamycin, despite setting an alarm on my phone (helps to have the sound turned on!). I'll be finished taking them with this afternoon's dose, then my surgeon said to start taking the Cephlexin again, for ten days. Tomorrow is the second try at my second chemo cycle. I feel ready.
Yesterday was a great day. By the end of it, I was feeling healthy, for the first time in a month, though it seems like ages.
I wore my new wig to school, and three people commented on my hair. I felt a bit of a fake. I only wore the wig because it was cold, and I wanted the warmth over my ears and neck. The synthetic wig provides that, but it's a style that my own hair would never keep. My hair is too fine and independent.
I've been enjoying being virtually bald. I went to the Celtic Barber on Friday and had the remaining hairs gently cut back with a No.1 clipper, so that it would look more even all over. The process took about 20 minutes, even though the hair is now very thin. It feels lovely to run my hands over the short hair, and I feel liberated in being rid of the stuff that has never properly submitted to my attempts to control it. I'm even contemplating staying bald after all this is over. I would save on haircuts, and I could always have manageable and fashionable hair through the magic of wigs. Though I don't like getting compliments on something that's fake. And I was slightly irritated by the wig hair brushing my face. But even though there are websites that say bald women look hot, I also worry about choosing baldness as a long-term style. Despite what you may suspect from this blog (which is written for friends and family), I don't like drawing attention to myself. My four years in a girls' boarding school ingrained in me a strong sense of the importance of dressing well but not too conspicuously. Choosing to remain bald after my hair starts to grow back would break that rule, as would changing wigs each day. I'm not currently leaving the house without some headcovering on. I need to protect my skin from the sun, and it's been cold. Oh well, I don't get to choose for the next few months. The remaining hairs will probably hit the dust in two weeks time, and the second agent, Taxotere, is said to be even more brutal, with some people losing their eyelashes and eyebrow hair, and the regrowth taking a long time, or the hair never regaining its former glory. Wigs and hats would then become long-term options.
440am. Damn, that second Clindamycin is hurting. I'm glad I'll be off them today, I hope!
David went off for his year 5 camp today, a bit anxious about leaving, and with the option of coming back on the second day if he gets too homesick. I hope he's having a ball, and that the prospect of spending four days with his friends is more attractive than two days at home where he'll have to do homework. Nathaniel wanted to stay home for a "mummy day" yesterday, so I kept him busy with drawing, reading, and playing games in the morning. I slept in the afternoon, and he left me alone - lucky Ben was home on a sick day and they kept each other occupied. I felt good after the sleep, I needed it after doing this early morning antibiotic shift for the last few days. Three people came by with an assortment of food, which was fantastic. It gave me some social contact with dear people, and also fresh pasta for two lunches, risotto, baked potatoes, and salad to go with our meatballs for dinner, and several meals worth for our freezer. As well as some fruit and some berry muffins. I had to move some excess berries and frozen meat to the old fridge in the laundry. (I really need to start eating those berries, I have quite a stockpile. Berry smoothies coming up).
457am. God, I'm tired. One more Clindamycin to go, then back to sleep from 530 until 7. Then take Nathaniel to school, go past the post office, pick up some more Cephlexin, see the oncologist at 1030, return home, and probably collapse on the couch.
I need to start writing thank you letters to all the people who have sent me cards. I just haven't had the energy lately, but I'll see if I can do a couple a day. While Hannah's here, I'll sit with her each day and ask her about her life, so that I can fill in a book I bought for her for Christmas. It allows a grandparent to record memories about their parents, siblings, and memories. She'll be 89 in April. It's nice to write down her recollections, and I think she enjoys the chance to talk about them.
Fourteen years ago, I intended to interview all my uncles and aunts about their lives, and to record it on video. Never got around to it, especially after the kids came along. Now there are only two left on Dad's side, and all those wonderful stories are gone, or diluted in the memories of my cousins. It makes me so sad. My father doted on his family, he always used to take us around the local uncles and aunts at Easter and Christmas, and we'd always visit the cousins in Hobart, Devonport, or other places when we travelled around the state. It was so nice to have that sense of connection with family, even though we childishly resented being dragged along to old people's homes. The love that greeted us was wonderful, though it takes hindsight to realise it. I wish I could see all my aunts and uncles again, tell them how wonderful they were, how good it was to have them bring out the cordial, cakes, and biscuits when we came to visit. How unfair it is that they had to get old and die. I remember them all as gentle and loving souls, some irascible, some teasing, all fond of my dear father. I miss him so much. Part of me wants to curl up on his lap and feel safe and loved again, to go back to a time when he could do anything, solve any problem, carry me on his back and make me so tall. It was so unfair, the way he declined. And I wish I'd had the courage to visit him more, instead of avoiding visiting because it broke my heart every time.
Deep breath.
I have to live my life to the best of my abilities, out of respect and gratitude to my families who gave me life and love, and to pass their legacy to my children. I need to separate the love from the grief, and use their gift of love to strengthen me for the months ahead. I know that it's not going to be easy, and that getting through this will probably result in transformations that I can't predict.
I need to explore why I get so, so, irritated when Hannah tells me that she knows it's all going to be all right. Is it because I worry that it's not? Is it because her cheerful affirmations of a good outcome seem so blithely ignorant of what I've been through so far, of what lies ahead? Is it because it feels wrong to tempt fate by predicting the outcome? Is it because she was wrong for so many years when she told her husband he needed to eat and get strong so that he could come home from the nursing home? I feel afraid when she says it, even though I know she's trying to reassure me. I'm fine when people wish me all the best with my treatment, when they ask how I am. I just want to run a mile when I'm faced with sympathy (don't look at me with pity written all over your face! I don't need pity, I'm lucky, it could be much worse!), and I want to spin around and whizz off to another place when faced with cheerful, blithe predictions of a good outcome. I'm afraid of what could go wrong. I know it's not going to be easy, though I hope it will be better from now on. I don't know how life will be at the end of my treatment. I just need people to be with me here and now, to keep me grounded in the present moment, to distract, stimulate, encourage me. If I concentrate on the present moment, the future will look after itself.
542am. Time for sleep. Peace and love to you all. X
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.
