I miss my friends from Melbourne, where I went to study in 1986, and didn't come home until 2010. Even though everyone was spread widely over Melbourne, and we never caught up as often as I'd have liked, I did make friends with some lovely people over there. I'm missing the variety and quality of food available in Melbourne as well. Launceston has some excellent, some good, places to eat, but not many. It's been a year since I've been back to Melbourne, time for another trip soon.
I've generally been feeling much better, not needing to sleep so long during the day. People say my eyes are sparkling, and that I'm looking well. I knew I was unwell in December-January, I didn't realise I looked unwell too!
The GCSF injections are making my hips and thigh bones ache, which disturbs my sleep at night. It makes my hip joints very uncomfortable, and lying on either side or my back is uncomfortable, despite taking panadol before bed and in the middle of the night. At least the nights are getting chilly now, good for snuggling in bed.
I woke up this morning thinking that I will adopt a new motto: "Cancer? What cancer?" I am healthy now, and intend to stay that way. Some people devote all their time to researching treatments for cancer, modifying their diets, exercising, and making other changes - all valuable pursuits, but if they take over every waking hour, that's not much of a life. I'm trying to achieve a sensible balance of healthy diet, exercise, meditation, personal development, and reading to prevent the cancer from recurring, in addition to trying to be a better wife and mother - I can't undo my past mistakes, but I can try not to repeat them.
One thing I've been grappling with is the loss of my career. I feel like I've been retrenched and forced into early retirement, without having mapped out a retirement plan. I loved being a neuropsychologist, and devoted so much time to it, it was a huge part of my identity, it still is. But I don't know if I'll ever be able to go back to practicing. I find it hard to concentrate for long periods, I get distracted easily, I sometimes forget things that people have told me, and ask the same question at least twice before I register the answer. I feel mentally slowed, muddle-headed at times, and sad stories upset me - I'd be hopeless at taking a history right now. I get so frustrated when I hear of medical mismanagement (e.g., misdiagnosis or lack of follow-up care), I don't know that I would be able to maintain the necessary objective distance when seeing patients. Of course it's only 5 months since I had the tumours removed, and 3 months since radiation was completed, so it's only early days yet. There's always room for more recovery (my scintillating scotoma is barely there), and I shouldn't be put off by the insurance claim forms where my doctor writes that I "used to be" a high-functioning neuropsychologist and have suffered a loss of function. He's telling the truth, saying exactly what I've observed in myself, it just feels more raw to hear it from someone else.
A friend offered to run me through the WAIS-IV and WMS-IV again as a post-test to compare with my 2009 assessment. I'd suggested that we do a presentation at this year's CCN conference on something to do with cancer, or on the difficulty of interpreting the neuropsych assessment of a neuropsych who knows all the test items, but the thought of being retested is rather unpleasant. I do, and don't, want to know if there's been an objective decline, and I don't think I'd want to share the results with anyone, whatever they were. Also, retesting will be contaminated by my familiarity with the tests - I might score just as well, or better, than before because I have given the tests many times since I was tested. If I score more poorly than before (scary thought), then that might suggest a significant loss of function, something I don't want to know about, and certainly wouldn't go sharing at our national conference. I'm not sure about pursuing my idea of a presentation - I'd like to share my experiences and the insights they've given me, but I'd need to feel comfortable with doing it. I might try writing something before I submit anything - I'm not sure what angle I want to take, though I would like to talk about the huge unmet need for neuropsych involvement in cancer care. Maybe it could be on what it's like to have a brain tumour? No, that brings tears to my eyes. It's something I can write about, or talk 1:1 with people, but not as a conference presentation. Not yet.
Other developments this past week:
1. my surgeon spoke with her colleagues, and they agreed not to do a stereotactic core biopsy on my remaining breast, but to wait and see. I still need to talk to her about that prophylactic mastectomy - though I want to get fitter before I have it. Maybe after Easter.
2. my rad onc gave me copies of the MRI reports from 30/12/13 and 6/2/14 when I saw him on Friday. I read them in the car on the way home, and was shocked to see that the December scan was reported as showing an area of increased signal intensity in the right temporal lobe, involving the choroid plexus/right hippocampus, "?metastatic in nature." It was reported as not being present on previous scans. The report from February made no mention of the area of increased intensity in the right temporal lobe, even though it was still there. I looked at the February scans with my rad onc on Friday, and it is a discrete area of increased signal in the right mesial temporal lobe, not connected to the previous tumour site. My neuroradiology friend in Melbourne had thought that the hippocampal enhancement might be scarring as a result of seizure activity, but I've only had two seizures, both consistent with a right temporal lobe focus, and I can't recall ever seeing scarring to that extent in TLE patients when I worked at St Vincent's. I'm going to call my friend tomorrow and ask if he can compare the scans for me (I hope it's not stretching the friendship). It gave my such a fright to see the report when I'd been told everything was looking better. If I've got another tumour growing my brain, it hast to come out, and quickly. I don't know if I can have radiation to a new site, but the old sites can't be irradiated again, and my bone marrow won't cope with chemo again. So I'll have to put my faith in complementary and alternative medicines, prayer, meditation, positive thinking, exercise, and whatever else we can find to combat it, if it's something to worry about, and to stay recurrence-free, if it's not.
Reading those reports was the first time that I've been confronted with the very real possibility that I might, one day, have a recurrence of my gliomas. It made me feel scared, and very angry at the thought that my kids might have to face growing up without me. They are my reason for going on, for fighting, even when I've felt utterly exhausted and drained of all motivation - David and Nathaniel are my reason for living (sadly, that doesn't translate into perfectly behaved children - a fantasy).
We have a referral to see a neuro-oncologist in Melbourne for advice on treatment options if there is a recurrence, given that I can't have the Temodal again. I hope we'll be able to see him in the next few weeks, which will give us our trip to Melbourne and a chance to catch up with friends, family, and food.
Time for sleep now, and to focus on myself as whole and healthy, and cancer-free. I had cancer in 2013. I don't have it any more. The future looks exciting and full of possibilities.
