I'm gradually feeling better - my tummy is less painful, my cold is finally going away, and I didn't feel like spending all day in bed like I had for the last two weeks (the combination of hacking cough, runny nose, nausea, tummy pain, headache, and freezing weather made bed a desirable location).
I've decided to be a good psychologist and practice my own medicine, i.e. activity scheduling. So I rang a friend and had a great talk this morning, then I took Ginny for a walk down the road, stopping by at a new neighbour's on a whim. They're a lovely couple with a 9month-old daughter and a sweet little highland terrier. They're doing beautiful things to my old piano teacher's house, and it's nice to see the old place coming to life.
In the afternoon, I rang a builder who has been good at following up on quotes in the past, and he'll come by next week. Ben's started complaining about our house again, and says if we lived in a new house, we wouldn't have to worry about all the things he thinks is wrong with this one. I've done some research, and stamp duty on a similar house would be in the range of $20-30K, plus removal and agents fees, and the stress of finding a new place, and relocating. Selling our house would not bring us a profit in its current state, it needs new gutters, fascia, external painting, bathrooms, and a kitchen makeover. I'd rather stay put and spend $50-60 on fixing what we have, so that we can enjoy it, and so it can be ready for sale if we happen to see something that we like.
Practically, physically, and emotionally, moving is the last thing we should be considering. I need to get fit before my mastectomy in August. I think we can manage with an external laundry and not enough storage for a little longer, especially when decluttering would give us more storage space. Problem is, when Ben decides he wants to move, he keeps on and on about it until I finally give in - he nagged me to move back here to Tassie from 1998 until 2009. I've tried to talk to him about the benefit of practicing gratitude and eliminating negative thinking, but to no avail. He's too stressed to listen.
I have my next MRI scan tomorrow at noon (I mistook the time of the last appointment and missed it). I hope there are no unpleasant surprises on it. I haven't had any new neurological symptoms, there's no headache, and I don't have any nausea to speak of, other than this funny taste in my mouth and lack of appetite that makes it very hard to find anything I want to eat, and to eat well. The dietician at the hospital has prescribed Fortisip, a nutritional supplement, for me to take twice a day, but I'd rather be eating real food. Raw carrots, apples, bananas, weetbix, and yoghurt don't make a balanced diet, but they're the kind of thing that appeals to me. I don't like eating meat any more, and the appearance of raw meat repulses me - I will probably be able to cook some tomorrow, but I don't know if I'll be able to eat even something bland like butter chicken. I ate two eggs for breakfast nearly every day from the beginning of last year, so I'm sick of them as well. I'm going to call the dietician again, because I think I need some help. While it's good to be down to 76kg from my starting weight of 94.5kg in January last year, I know that it's very important that I get adequate nutrition. I have about 20 supplements that I used to take regularly, but I'm sick of taking capsules and pills.
After my conversation and social visit this morning, I collapsed on the couch in the sun and had a brief cry about how darned tired I am, and how much effort it takes to keep on a happy face, though I genuinely do feel happy when I talk to people. I need to do it more often, I'm a bit out of condition.
I'm trying to work out how to make people aware of Valcyte in Australia, it doesn't seem to be widely known in the brain tumour community here, and it disturbs me to think that drug that can significantly improve outcomes for high-grade gliomas isn't being used more widely in Australia. I'm so grateful that my oncologist was happy to prescribe it and to apply for us to get it on compassionate grounds. I've heard of another oncologist who "doesn't believe in it", and of another who was dismissive of the NEJM study because it wasn't a phase III trial. It really annoys me when clinicians get all anal-retentive about wanting randomised control trials to prove the efficacy of safe treatments for incurable diseases. Surely a good phase II trial with dramatically improved survival times is better than the current treatment?
I'd better try and get some sleep. The ends of all my ribs were aching last night because I accidentally took my gCSF injection a day early - it doesn't seem to make my pelvis or thigh bones ache so much any more. Having the sensation of aching rib-ends was unpleasant. I've taken some panadol tonight as a precaution.
Thank God it's not so cold today, it was making me miserable.
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.
