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.


Sunday, 11 August 2013

21/28 radiations

I had my 21st radiotherapy session today, and I'm feeling wrecked. So I'm celebrating this milestone with a quiet day at home. I've walked Ginny down the road and back, fussed over Rosie twice, and met a three-month-old ball of fluff that wasn't put off by Ginny's size. I've had sardines on toast for lunch, and now I'm in bed, preparing for a long nap before I collect the boys from school. We have to see the GP at 5, as we've all had a cold that's been going on for over two weeks now, and I don't like the way David is coughing. Antibiotics haven't helped, it's probably just a lingering virus, but I'd rather get us checked out. 

My skin is only just starting to get irritated by the radiation. It's quite red under my arm, and there are a number of spots over my collarbone. They're not sore, but a nurse at the clinic has given me a foam-like patch to put over them to protect the skin. I'll be seeing my rad onc on Wednesday, so I'll be able to ask him about the rather odd symptoms I've developed - the old childhood scars on my knees have become red and itchy, and I'm producing an excess of saliva, which is rather embarrassing when I talk, because I have to swallow repeatedly, or sound like my mouth is full of slobber. I'm not having any swallowing problems, my salivary glands just seem to be overactive. Ben wonders if my oesophagus is being affected by the chemo, but it shouldn't be, darn well had better not be affected, and I'm not having trouble swallowing food or water. Overall though, radiation isn't as bad as chemo, and while it won't be pleasant if my skin starts to feel sunburnt, I can live with it.

I've been doing some reading about recovery after cancer, and one source said that recovery takes about one month for every month of treatment. That will take me to march next year. I'm feeling quite withdrawn, in a centered kind of way, and don't feel any great desire to get back to work quickly. I still need to recovery my strength and deal with the fatigue. I miss the people from work, but felt shaken after talking to one of the OTs who I saw in the hallway this morning. It was confronting to talk to someone who was concerned about my welfare on a personal level. Blogging has helped remove me from needing to talk about it. I know that people won't be in my face about it when I do go back to work, but sensing other people's concern for me makes it all feel more real, somehow, and it makes me feel vulnerable and upset. I'm not sure why, and don't feel like exploring it right now. In addition, I found it slightly distressing to hear other patients chatting about their diagnoses and progress in the waiting room last week, so I don't know how I'd cope with taking histories from  patients. 

It's too early to think about work just now, I know. It's one of those things I need to leave for later, along with the thought of having a prophylactic mastectomy and a reconstruction. I need to focus on my immediate needs, for sleep, nutrition, and loving contact with my beautiful children. 

One thing that I'm very grateful for is the opportunity to have cast aside all the distractions that kept me from fully appreciating my children. I can't get back the time I've lost, but I can make the most of every day from now on.

A sleep window has opened, time to slip through it and dream.