For the first time in ages, I woke up feeling refreshed today after a good night's sleep. The last few weeks had been really rough going, with nausea, no appetite, fatigue, and pain in my ribs from the GCSF injections. I was spending most days lying down, sleeping, and hoping it would all go away. And worrying that I was losing weight because I had no desire to eat anything, which was affecting my energy levels. If I did eat something, I usually had to force myself to eat it, as nearly everything tasted too strong to deal with. My weight dropped to 73kg at one stage, just 2kg more than I weighed when I married Ben in 1998, and my two pairs of jeans are hanging off me like sacks. Sadly, most of the weight has gone from my muscles, my legs look nothing like Elle Macpherson's. Never have, never will. I had a good session with the dietician yesterday, she wrote down some strategies to keep up a healthy nutritional intake, and gave me some handouts that are still sitting in my bag, waiting to be read.
My haematologist was delighted to hear that my ribs have been aching after the GCSF shots, apparently that means that the marrow is being produced properly in my large and long bones, so the small bones are trying to do their bit. She said to stop the injections, do a blood test on Monday (7 days after the last shot), and see how my bloods are looking. It would be nice if my body could start working properly again, it's been so long, I've nearly forgotten what it's like.
I had my final session from the Commonwealth Respite cleaner service today, I was getting one hour twice a week, and it made a big difference just to have someone to vacuum, make the beds, and fold the clothes. We'll have to look for a private cleaner now, I'm still not on top of the decluttering, but the dining room table is starting to look more organised. I'm also going to see if I can find someone to provide assistance with meals at least 4 nights a week. I just don't have the energy or inspiration to stand up and cook, and it would help so much to have a regular person to do it. I can't ask Mum, she's getting old and tired and wouldn't want to give up her busy schedule of activities, my sister lives in Europe, and although I have a few friends who helped with food in the early days, it would be better to have someone regular so that they can get used to our routines. If anyone knows a nursing student in Launceston who would like free room and board in exchange for 10 hours a week of assistance with meals and school pick-ups, please let me know.
It's 430 and I'm getting very sleepy, I haven't napped today. Before I go, I want to tell you about my morning, which I spent buying a present for a friend's daughter's Bat Mitzvah (to be held on my birthday, the 3rd of August), pyjamas for the boys, and a dressing gown for Ben. The cleaner kindly dropped me off in Margaret St, at the foot of the hill from our house, and I walked all the way up Brisbane St to Pierre's (still only open for breakfast on weekends, bother it!), and then around some of the shops in that area. I couldn't finish the large and delicious serving of bircher muesli at Inside Cafe, and made it home by 1130. I'm not quite sure how the last 5 hours have passed, I did throw out some old receipts and paperwork, and had two mugs of minestrone plus some tinned salmon on toast for lunch, but it's been a good day.
Must sleep now, I feel utterly drained. The boys are having their half-hour turns on the computer upstairs, so I'll be able to rest until Ben comes home about 530.
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.
