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.


Friday, 9 May 2014

Going home tomorrow, I hope

I'm feeling great right now. It's a rainy day in launceston, my favourite kind for staying indoors. I've just walked for at least 10 minutes up and down the hallways, and felt strong and confident. I even used the Physio stairs in the hallway to practice. I stopped at 4 rounds because they were a little noisy, and I didn't want to add to the racket at this end of the hallway.

The surgeon came and saw me this morning and said my abdomen was noticeably less distended than on Thursday, and that I can go home tomorrow if my bowels are moving. I had tomato soup for lunch, and it seemed like the most perfect food I've ever had: not sweet, not too salty, warm, but not too hot. I loved that soup! I hope I get it again tonight.

Ben and the boys came in with some massive, healthy burgers from a local shop- wholegrain bread, lots of vegetables, including beetroot, which I finished off. It's a pity that veggie burgers often have an unpleasant patty, this one seemed fried, so I didn't eat it. I'm still feeling tentative about eating, despite the magical powers of tomato soup, and I don't want my bowel to obstruct again. If I take things easy and slowly, it should be ok, I hope (no one has told me any different)

I didn't sleep well last night, had a pesky headache that didn't respond to Panadol. The nurses keep saying "don't be a matyr to pain", but it seemed a bit excessive to take morphine for a persistent headache. I relented this morning and found myself pleasantly drowsy and pain free, but woken every half hour or so by people coming to take blood, give medications, do obs, bring breakfast, take the tray away, ask if I wanted a drink, bring the paper, and then Ben and mum called. I ended up turning off my phone. 

I managed to have three or four naps where I dreamt I was tucked warmly in a bed on a boat, or a sleeper carriage in a train, with the rain pouring down outside. Bliss! I'll try to go there again this afternoon. 

Four more glasses of water to drink before I sleep- my BP was 90/68, low again, and rather than accepting that some people tend to have BP in the lower ranges, they tell us to drink more water. I'd prefer to sleep, but I'll be good and drink up, it will have to be beneficial to my bowels.

I can't believe that in one year I've gone from being independent, healthy, and the delusion of being bulletproof to being so familiar with hospitals, cannulas, surgery, bloods, infusions, and how to try to get decent food off a hospital menu. I'd rather not have had 14 admissions to the Lgh, I'd rather not have experienced any of this, but what choice do I have? I can't give up trying to get better, I gave birth to my beautiful boys in 2002 and 2004, I want to be there for them as they traverse through adolescence and enter adulthood. I want to be around for Ben, who is trying so hard to support all of us.

I asked mum if she could come and stay a few days when I get out of hospital. She said she might be able to, but she's very busy at home, trying to tidy up the 46 years of odds and ends collected by our family. She said she doesn't know if she has 2 or 17 years left (she's 83 in June), but she doesn't want to leave it for  my sister and me to clear up. It's the first time I've heard her talk like that, and it makes me sad that she's spending time and energy on worrying and decluttering rather than enjoying life. 

I understand where the desire to tidy up is coming from: when grandma died in 1993, it took over a month for mum and aunty Betty to go through her things and distribute them amongst the family, and Mum said she didn't want to put Eluzabeth and I through that. I still regret not taking the large box of letters that Pa had written to grandma when they were courting. Caroline, Elizabeth and I never knew him, and it would have been one way of getting to do that. My aunt insisted on throwing them all in the bin, she wouldn't even let me read more than one of them, it only spoke of daily activities  and family news. I'd never seen such steely determination in her before.

I had planned to spend a day each week at mum's place after my breast cancer treatment was over, but events got in the way. She's always relied on us girls to help with sorting and decluttering, but with me sick, Elizabeth in Budapest, and Caroline in Queensland, she's on her own. I'll see if I can hire someone to help her, and help me with my place too. I just haven't had the energy to sort things and put them away since September, when recovering, managing my fatigue, and keeping well has been my priority. 

Like mum, I feel a desire to have my things in order, to not leave a mess for others to clean up. I'd like to keep the meaningful relics of my life, identify and sort the photos so they're not lost in a digital void.  But I don't want to devote all my time to doing it, there are far more important things to do, like sharing pleasant events with family and friends, accumulating experiences and memories, not possessions.

 If we didn't accumulate so much, hold on to so much, it wouldn't be a problem. Another example of attachment causing suffering!

 If we could just let it all go, there'd be no need to worry about all those unseen slides of our childhood, those  photos of my aunt and mother as beautiful young women exploring the world. I want to have them all collated and printed, to share with my family, because seeing them reminds me of all the hope and potential in each life, and helps suppress memories of arguments and silly things that obscure memories of the love and goodness in our families.

I've found at least one person who offers the services I need in launceston, I'll  call her next week.

Mum has been looking very tired lately, I hope she's ok. I'll encourage her to get her health checked, even though she doesn't like me doing that. She's very independent, doesn't like asking for help, doesn't like being encouraged to seek help.  I'm probably a bit like her. I find it hard to ask people for specific help, and feel ashamed to admit to difficulties.

Four glasses of water and an hour later: BP 120/96. Headache is back, but I'll put on my Calm.com app (thanks so much, Dionne!), and get some rest before dinner. 

I wish you all love, happiness, and pleasant memories to take with you every day of your lives


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