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.


Monday, 15 April 2013

Ready for round three

My third round of chemo is scheduled for Wednesday at 1030. I feel cautiously optimistic that it will go okay this time, I have Stemetil in the fridge to prevent the feeling of motion sickness, and the G-CSF seemed to help prevent infection. In three weeks I'll be half-way through my chemo, with the final round due to start on June 12th.

I went in to have my pre-chemo bloods done yesterday morning after school drop off, thinking that I might go to the pathology department and see if my vein would hold up (poor thing collapsed last time). Then I noticed that they'd booked me to have my bloods done in the Holman clinic, followed by "VAD care," whatever that was. So I dutifully went to the clinic and had a needle put into my infusaport so they could draw blood. VAD stands for venous access device (nothing to do with VD, thankfully).

I felt quite anxious waiting for the nurse as she prepared the multiple syringes of saline (to flush my port), putting everything out on a sterile cloth, scrubbing her hands and fingernails, donning gloves. I practiced my breathing and relaxation techniques, and wished I'd thought to have some lorazepam. There seems to be an increase in anxiety as I become more familiar with the process, not a decrease from habituation. Damn.

The nurse didn't seem as experienced as some of the others, and I'm glad I asked for a local anesthetic - she had two attempts at putting the needle in, and was having trouble drawing blood, until she realised she needed to remove something from the needle. The whole process tok about an hour, including time wasted because they sent me to the wrong waiting room. It's a nice small white needle that's been left in, compared to my previous blue ones, and at least I won't need to have it done again tomorrow.

I've been very tired the last few days, thanks to an attempt to regain some fitness by using the treadmill. I've done it three days in a row now, 36minutes at 5pm/h on a variable incline (alternating 1 or 5 degrees every three minutes). I used to be able to do more than that at 6.5km/h prior to surgery, so I've lost quite a bit of condition. I just need to maintain what I have, even though it makes me feel very tired and I absolutely need to sleep in the afternoon,

Exercise helps with mood and recovery, and will hopefully prevent too much weight gain (the majority of people gain 5-15 kg during chemo for breast cancer). I'd lost 14kg between June 2011 and February 2012 through exercise and the Dukan diet, but I put the weight back on after Dad died and I started eating food with sugar and wheat again, I know I shouldn't try to lose weight during treatment, but I don't want to gain it. It's depressing to look for clothes that fit. I tried on 8 pairs of jeans last week, and couldn't pull 6 of them up. Women don't have thighs this season, apparently.

The boys are sleeping in my bed tonight, both wanted to stay home yesterday. David was distraught last night, saying he can't sleep and couldn't concentrate at school because he's worried about me. It doesn't help that he has a term's worth of homework to finish in the last week of school, but I'm annoyed that his teacher hasn't been checking on his progress over the term, as promised on the homework sheet that gives year 5 kids a minimum of six projects to do at their own pace over the term. He's completed two, in the last two weeks, with much complaining and many tears. I haven't had the energy to help him do it this term. Will talk to the school tomorrow, we don't need another stressor - we have more than enough already, have had for the past 11 years. I only hope our family's run of health issues ends soon, with good outcomes for everyone.

I was looking for advice on how to help children cope with having a parent with cancer, and found instead an article that summarizes well-intentioned things that people say. You can see it here. It helped me to understand why these things irritate me so much sometimes. I'm probably guilty of saying similar things to people in the past - it's so hard to know what to say, it's good to know what not to say.

There are a number of similar articles on the web, if you want to look. This last one is from a blog written by a woman with stage 4 breast cancer. It is simultaneously funny and sobering - a view of the trials for those with metastatic breast cancer. It is comprehensive and tackles the "brave" comments, but also gives practical advice on what to say or do. Read it here.

I hope my cancer never recurs, and that I get through my treatment ok. I'm doing nearly everything I can to maximize my chances of a good recovery, though giving up sugar is proving difficult when working out what to eat is a daily puzzle. I don't feel brave. I'm just doing what I can to survive, because I want to see my boys grow up, I want to be there for them every step of the way.



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