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.


Sunday, 6 October 2013

Fatigue and food


I'm getting fatigue now that  my Dex dose is down to 2mg in the morning and 1mg in the afternoon (meaning less time and energy to blog). It started last Wednesday night, when I yawned for the first time in a month, and slept for more than 2x2 hours. One whole month of not sleeping through the night, my body tired, but my mind awake almost all the time. It was strange to yawn - I didn't realise I hadn't been yawning until I did it.

Thursday was spent seeing the Outpatient Rehab (OPR) physio, and a home visit from the OPR Occupational Therapist (OT). The physio said the aim is to keep me safe for the next 7 weeks of combined CT/RT, because it will make me tired, and then we'll look at rehab after that. So I spent 45 minutes learning how to roll over and sit up, and sit to stand safely and effectively. I also learnt how to walk with a forearm crutch in my right hand, moving it at the same time as my left leg. I was advised to use it at all times, as I'm a bit wobbly on my legs. I discovered on the weekend that I also have to be careful not to kick the crutch with my right foot (tripping hazard), and that I can't hold anyone's hand when I'm walking with the crutch. I need to concentrate.

On Thursday afternoon, the OT brought a bath board for me to sit on when I shower, as it's tiring to stand in our shower over bathtub, and there's also a seat for me to sit on in the bathroom for getting dressed, or if I want to cleanse my face. I need to sit to get dressed - trying to stand and put on my undies is as awkward as it was when I was heavily pregnant, only this time I have no power.

I slept well on Thursday night too, so of course I overdid it on Friday. I spent the morning sitting up at the dining table yetrying to work out what had happened to my Vodafone account. It took all morning to work that out and type it up, but I should have done it lying on my bed. Sitting out of bed for prolonged periods after brain surgery is tired, and I do have a month of sleep deprivation behind me. It's just so frustrating to want to do so many things, and to have so little physical energy. I feel a little like the character in Little Women who was laid up in bed for months (was it Jo March?) - I remember reading that book and thinking how awful it would be to have to be in that situation, though I can see how nurturing myself is so important. I'm going to teach Ben how to pay our bills online and delegate other tasks to him. For the first time in my life, I have to accept I can't and shouldn't try to do everything.

 This was brought home to me yesterday at 1130. I'd slept well the night before, woken up feeling refreshed with the birds, and had been tidying up in my room, hanging up clothes, and overdoing it again. We were all ready to go out, when I was hit by a tsunami of fatigue. I just had to lay down, I felt utterly drained of energy. I think I slept for 30 minutes, woke slowly, and gradually started to feel better enough to go out by 1pm - which was really only midday as we started daylight savings yesterday. 

 We had lunch at Holy Guacamole in the Quadrant Mall, a "Californian tex-mex' cafe. It's the first time we've eaten there, and it was fantastic - I had the ensalata with chicken and fish and fajitas - fresh and filling and only $13. The kids shared a chicken wrap, and Ben couldn't finish the taste plate. The boys wanted to go back yesterday, but we ate at Mud, where I had some delicious polenta with pancetta and salad - I'm really enjoying my food at the moment. It all tastes so good. And I'm being careful to eat according to what I need, rather than what the Dex encourages me to eat (everything). We had atlantic salmon cooked with garlic and tumeric last night, on a salad of rocket and baby cos, with cherry tomatoes, avocado, shaved parmesan and balsalmic vinegar, it was great - both in taste, and because I managed to prepare it without getting too tired. I just need to lean against the bench in the kitchen - or get the chair over from the computer so that I can sit down to prepare the food    

Friday evening was spent arranging for my cousin and some close friends to come and be my "personal companion" for the final weeks of my CT/RT. My beloved cousin/heart sister Caroline will be here for the last 3 weeks, preceded by Farah, Libby and Liz. Libby was coming over on the 25th anyway, so she's extended it to the 30th, and Liz (who formed our Melrose Place foursome with Libby's sister Anne) is coming on the 31st to the 3rd of November. Libby squealed and said she felt it was like being asked to be a bridesmaid, so when I rang Liz, I said "I'm going to ask you something which Libby said was like being asked to be a bridesmaid" to which LIz exclaimed "Oh, do I get to wear a dress?".  Anne will come after schoolies in December, and a former workmate and a former student have also offered to come over for a few days and help - that will probably be in December, and I hope to be feeling fine by then, but it will be lovely to see them, and to have some company and help around the house if I need it. As for the next 3 weeks of treatment, Ben will be able to take me to and from the clinic, and I have two friends and two neighbours lined up to help with the evening meals, most of which just need to be heated from food being provided by a group of colleagues calling themselves the CCC. Thanks so much, whoever you are, the food is great, as is a fresh bunch of flowers each week.

Sadly, I have discovered that blueberries and raspberries (my favourites) are high in fructose (blueberries 14g/cup, raspberries 8g/cup). So I've been enjoying them in my nutty bircher muesli when I shouldn't be touching them. Damn! It looks like I'll be having a lemon as my daily fruit (they're low in fructose) - making a tea infusion of the skin and pith is pleasant, and then I drink the juice with aloe vera juice and warm water.


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