Friday March 15th. My fifth night in hospital. I'm feeling better physically, worse emotionally.
The boys have been crying for me in their sleep. I hugged them properly for the first time today, after avoiding body contact all week for fear of getting a new infection. I just needed to cuddle them, bugs be damned. My neutrophils were up to 1.2 today, so I'm getting better at resisting infection, I hope. Getting worse at distracting myself from the totally crapful situation I'm in.
That's always been the problem with spending too much time alone and idle. Too much time for thinking about all the things I wanted to do this year, all the things I would be doing if my blasted milk ducts hadn't turned feral. I'm feeling guilty that I had to drop my role as national and state chair of our college on other people, without giving a proper handover. I wanted to achieve so much this year. I only had until our October conference left as national chair, and I haven't had the energy to share those ideas with my deputy or the rest of the committee. I know, I know, I can call them up and let them know, and I will, but I feel like I've abandoned them, as I do with work.
Okay, all my CBT - oriented friends, and others, will be seeing how irrational and self-defeating it is to feel guilty over having to step down from professional responsibilities when faced with my diagnosis and treatment needs. I see it too. But it doesn't stop the tears from rolling down my face and it doesn't make me feel any better to know it's irrational and self-punitive. I just feel like I've let people down who were depending on me, and I hate doing that. And I'd far rather be in a reality where there had been no cancer, where I'd be continuing on with what I was doing, which was trying to get a balance between my family and professional life.
Is this meant to be a wake-up call that I was neglecting my family and focussing too much on neuropsychology? I don't think so. I love my family so much, we've been through so many difficult times the past 11years, I needed to take some time out to focus on something different. The stress of caring for aging parents, fathers dying slowly in nursing homes, while trying to bring up two beautiful boys... I had to escape from it some times, neuropsychology was a way of trying to help other people, because I couldn't stop my father, or Ben's father, from declining. Then Dad died last year and I found it hard to write my reports. It felt futile, knowing that I couldn't save anyone. Irrational again, I know. I enjoyed seeing patients, but the reports were just so hard to finish.
And I feel like I've failed my children, they've had a lousy childhood, with their parents preoccupied with work and unwell grandparents. I've often taken the path of least resistance with them because I haven't had the energy to argue with them, and then Ben and I have argued about their behavior. They're great kids, I love them so much, and I feel so bad that I'm not at home with them. But I don't feel well enough to go home yet. I'm still so tired during the day, I don't know if I could prepare meals for them, or cope with their demands.
Well, now I've told you how I feel. I think this is the lowest I've felt since I was diagnosed. Afraid, stupid, scared about my future treatments. I'm not posting this to get sympathy. Please, God, not sympathy. Love, prayers, kindness. For me and for everyone else who is going through difficult times, some much, much worse than mine. That's what I want from you. Universal love and kindness. That would be worth it.
I think I'll just go to sleep now to the ache of my hair follicles dying, a slow, dull pain across the top of my head as my cells give up their hair. There will be another two handfuls of hair in the shower in the morning.
Tonight, I'll think about all the things that make me happy, all the things to look forward to, all the things to appreciate and be grateful for. There are so many.
I will pack my guilt and fears and regrets into balloons and watch them fly into the sunset, only to be hit by rockets and explode into fireworks.
Tomorrow is a new day, and it will be wonderful.
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.
