I can't believe how tired I feel.
I knew having a mastectomy was major surgery, but so was the emergency caesarean I had with David 11 years ago in April. I bounced back from that okay - was driving within a week, no major pain issues a week after hospital. I thought this operation would be the same. I guess I didn't count on my greater age, the fact that it was done under general anaesthesia, rather than an epidural, the fact that I was under for nearly 4 hours, and the possible cumulative effect of it being my second GA in 4 months.
Anyway, I'm exhausted.
And yes, I should be turning off the iPad and going to sleep, but I'm not feeling a sleep window open just now. So I thought I'd write some text to counteract the recent pictorial posts regarding my left breast.
My radiation oncologist is happy with how my wound it healing, and said we should start chemo in 2 weeks - so that means the week beginning the 24th of February. I asked him which day of the week is best, having heard that it can take a few days for the side effects of chemo to kick in. He said it varies between people, so I guess I just need to choose a day and hope for limited side effects.
I asked him if there was anything we could have done last year to pick up this cancer before it got to this stage, like doing a core biopsy in a couple of areas of tissue. He said that core biopsies damage the tissue and affect subsequent imaging studies through scarring. Last year, despite my left breast being lumpier than the right, there weren't any changes visible on ultrasound. And MRI, even this year, didn't pick up the full extent of the tumour. The MRI suggested three masses, but on pathology it was one large mass, with some areas of ductal carcinoma in situ. He reminded us how hindsight makes us imagine that things we know now should have been known then, or makes us forget that technology available now may not have been available then.
I feel incredibly lucky that there were no necrotic (dead) areas in the tumour, and no evidence of vascular or lymphatic infiltration of the cancer cells, and all of my lymph nodes were negative (clear) on routine histopathology. So while it's frustrating that it wasn't detected last year, when in was worried about it, we have a very good outcome, given the tumour size. With chemo and radiotherapy, and a prophylactic mastectomy on the other side next year, I should get through this and have no recurrence.
February 12th marks the anniversary of Dad's death. Today marks the anniversary of the last time I saw him alive. I told him I'd go and see him again the next day, but I chickened out. I didn't believe he would die, I thought that not seeing him would make him live longer. He passed away around 530 in the morning, a nurse was with him, and I was able to sit with him from 6am until Mum arrived. Our last hour together, one year ago today, was lovely. I held his hand, stroked his head, sang songs to him, and told him how much I loved him, how he was the best father in the world, and how glad I was to have him as my father. I told him not to fear the transition ahead, because he would be met with love and joy by all his wonderful family who had gone before him. Gwen, Merle, Monty, Hilton, Adye, Frank, Jack, Deseree, their spouses, his parents, Aunties May, Olive, & Eileen, Uncle Roy and uncle Huon, his cousin Louis, Mum's mother and father, and all her side of the family. So many loving souls waiting to greet him on the other side, Harvey Donald, the "favourite uncle" to all his nieces and nephews, some of whom have already passed on.
I sensed Dad in our kitchen the other night, when I was home from hospital and worried about what lies ahead. It was probably my imagination, but I could sense him and my cousin Marita, and dear old Roger raising a toast to me and Dad said "don't worry, girl, it's not your time to come over here yet."
I'm glad I've had a year to mourn Dad, and to grow stronger with the other losses and challenges that last year brought. I feel that I can face this year with greater energy and strength than I would have had if I'd been diagnosed last year. I'm feeling more grounded and centered in myself than I ever have before, and despite dreams where I tearfully engage orcs and goblins in mortal combat, I feel a sense of calmness most of the time. The love from others is helping so much, I'm getting emotionally stronger each day.
Now to sleep, and to start getting physically fitter before chemo starts.
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.
