Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Next steps

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.

Thursday, 12 September 2013

Next steps

Aah! The pleasure of a nice hot shower! It was so good to have one tonight, after spending two days linked up to a halter monitor. My skin was getting itchy, it was good to take the ECG dots off and soak under the water, though it would have been a greater treat to wet my hair. Not allowed to do that for some time yet. The dressing on my jugular vein, where they had a line during surgery, also has to stay on - until it starts to come off by itself. I don't mind that, it's still tender, and it feels like a very vulnerable place. After my second surgery, I'll probably have two scars on my neck - like puncture wounds from a vampire. Pity I'm not into Halloween or the Twilight series (Anne Rice turned me off vampires in the early 1990's, and Tom Cruise was a hideous vampire Lestat).

The CT angiogram took place this morning. I had to lay down, feet first into the machine, ECG leads attached. They gave me a small amount of iodine as a contrast, and checked my ECG, then a couple of pumps of nitro lingual spray, and a big, fast bolus of iodine, which made the centre of my chest hot, gave a metallic taste in my mouth, and produced an intense heat in my bladder. They apologized that it was a large cannula and for possibly stinging me, but I hardly felt it go in. I've become adept at going to a happy place in my head whenever a needle is nearby, and I hardly feel a thing, lying on my hammock on that white sandy beach, palm trees swaying overhead, green-blue water lapping at the shore, green jungle framing the scene.

The cardiologist said my heart looks fine, so he doesn't need to see me again. All my bloods have been good, and we know that my chest, abdomen, and pelvis are clear from the CT last week. (I wonder if I need a bone scan again? I don't want to tempt fate...)

My neurosurgeon came this evening, and was able to sit and talk with Ben and me while Uncle Alex took the boys out for a walk around. The tumour was a grade IV glioma, aka Glioblastoma multiforme, or GBM. He said it is dishonest to say that this kind of tumour is curable, because they often come back, but this kind of brain tumour is manageable. Outcomes have improved in recent years with a combination of surgery (remove as much as possible, without overdoing it - taking out too much surrounding tissue just in case does not improve outcomes), chemotherapy, and contoured radiotherapy. This could take place a the Epworth in Melbourne. Then there will be regular MRI scans to check for recurrence, and treatment as appropriate.

The plan is for me to be discharged tomorrow morning, spend a relaxing weekend in Hobart, and return in Tuesday for surgery on Wednesday. I will then go home to Launceston to rest, let my sutures heal, and then start chemotherapy. I'm not sure about the timeframe for that, am happy to wait and see.

They will discuss my case and treatment at a teleconference tomorrow morning.

I've been feeling calm writing this, but now I have that stabbing pain in my chest and panicky feeling again. It's obviously taking a toll on my body, dealing with this.

I've called the nurse, so it's time for some obs, and maybe a good cry. I've always had a tendency to somatise (express anxiety through tummy troubles), but this is scary and painful.

The pain was 8/10, they gave me oxygen, did an ECG, and checked my obs. All was okay. Anxiety can present with chest pain. A good lesson to me to stop being so damned smart, and to let myself cry. I'm afraid to lose control. Now The pain starts up again, my body knows the tiger is about to catch me, and is telling me to wake up and acknowledge the situation. Time to cry.

Then I'll be okay..