Saw my medical oncologist this morning. He seems nice, but I can't say it was the best hour I've spent recently. I felt really cranky and anxious this morning - seeing him was the next phase in this journey, and makes it seem more real, not some bad dream that I can somehow wake up from.
The list of possible side effects that he listed is daunting: fatigue, aches, nausea, hair loss, nail changes, neutropenia, drop in platelet numbers, liver dysfunction, allergic reactions, cardiotoxic reactions, later risk of haematological cancer (leukemia), need to go to emergency immediately if I get a temperature over 38 degrees.... All things I've read and heard about before, things I know don't happen to everyone, but part of me just wanted to get up and run away. From him, from it, from everything, find a cave somewhere on a hill and pretend it's not happening, that everything is going to be okay. Of course I sat there, I just want to get the treatment started and over with. He could see I was upset and offered me the tissues, saying he could see I was taking it badly. What total crap! It's just the first time the tears have been flowing freely, the first time I've felt this is inescapable, that it's real. I know that sounds strange, coming from someone who has just had their left breast removed and a body that keeps producing fluid to fill the vacant spot. But I could see the tumour on the scans, I could feel the lumpiness and growing tenderness, I knew it had to come out. Chemotherapy is to kill off any micrometasteses, and to protect the remaining breast. I understand and accept the rationale, it just seems a bit more abstract, and I do not want to be sick. I don't like being fatigued. I don't want to be bald like the people I saw this morning, There's too much to do! I would rather have a year off without pay than go through this. It's so bloody unfair, but fairness has nothing to do with it.
Chemo will start next Tuesday morning. Ben has to be in Hobart for a meeting on Monday and Tuesday, so mum will need go take me. The cheerful nurse said it will take about two and a half hours. At least Ben will be home on Tuesday night, and we'll see how I respond. Can't wait. (laughs ironically and decides to sleep for an hour, dreaming about the 6 hats I've ordered).
If you're interested, here's a link to info about FEC-T http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/FEC-T.aspx
Sounds like fun, fec-ing fun.
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.
