I am exhausted.

Exhausted and sad and a bit scared. But still, OK… and… philosophical.

After my Grandma’s MRI results came back, we were given the news: she had 2 large tumours in her right parietal lobe. They found a “lesion” on her pancreas and a small “lesion” on her lung. Everything that looks dodgy on a scan is referred to as a “lesion” until otherwise proven… so … we don’t really know much.

This is about as far as we got into a proper diagnosis, because she decided to refuse a biopsy and any treatment. When the Neurosurgeon told Grandma the news, he said that surgical removal of the tumours, whilst *possible*, would result in permanent paralysis of her left side and quite a lot of loss of function. He also suggested full brain radiation, but he said that ultimately, all it would do is buy an extra 2 months.

So, there is still a big question mark as to whether the tumour is a primary tumour or a metastasis from elsewhere in the body… and without a biopsy, we won’t know. Given that there are what look like tumours in the pancreas and lungs, it looks metastatic, but Doctors are generally non-committal about these sorts of things.

After the Neurosurgeon delivered the grim news to my Grandma, I asked to speak to him alone and asked about the prognosis of the two possible diagnoses and any treatments. He then told me that, with the size of the tumours, the difference was only a couple of months because both options were aggressive. He then said that the best case scenario is a few months. Worst case scenario was any minute.

The hospital suggested a nursing home — I offered for her to come home with us. They had promised us a lot of support and really? It’s not really that big a deal to look after the woman who raised me, and was the single biggest female influence in my life. But the second I said that — HOLY SHIT — the hospital were keen to discharge her to my care. The paperwork for nursing support had not even been completed; she arrived in a wheelchair, with her suitcase and some discharge papers. Noone visited the home, and we are still waiting for a nurse to visit 3 days later. I am absolutely exhausted doing the equivalent of 4 nurses jobs, plus my own, plus my kids, plus my Uni and Medical school prep (which is proving impossible!).

It’s kind of lonely in some ways, and if not for my wonderful man, I don’t know where I would be. My sister has been great too. But you know… I have a special interest in the brain, and am a bit of a brain tumour geek. I know what end stage brain cancer is supposed to look like, and my Grandmother resembles it. I think she has a few weeks maximum. I think this because:

• she’s refusing food. Not out of stubbornness, but loss of appetite.
• she’s confused between night & day, plus generally confused
• her bowel is not working without assistance
• she’s “at peace” with dying
• she’s constantly trying to organise things & worry about her affairs
• she can’t walk without assistance
• the “tea coloured urine” that shows kidney shutdown
• pre-occupation/fixation on specific issues
• wanting me around to hold her hand all the time
• sleeping for most of the day
• every morning at 4am, she wakes up saying she thinks she is dying
• no interest in “outside world”
• staring into space a lot.

A lot of these sorts of symptoms are associated with the “beginning of the end” for brain tumour sufferers. The Neurosurgeon was much less optimistic about her prognosis than the General Medicine team — but that’s because brain cancer is very different from other cancers — vital signs are generally good up until just before the end, and organ failure that is associated with other cancers isn’t there. So, I have a feeling that we’ll be looking at hospice care pretty soon.

But, I am tired. Because every hour, sometimes more often, I am woken by “Téa! Téa! My feet are cold.””Téa! Téa! I am too hot.””Téa! Téa! I need some water.” “Téa! Téa! I think I am going to die now.”… where I say “It’s OK, you’re just having a panic attack”, tuck her in, hold and stroke her hand for 2 hours at 4am still my arms are numb… and she goes back to sleep.

It’s hard work. And there is not a minute any day where I don’t wonder if I did the right thing bringing her home because I am so tired, after only 3 days, and I know it’s just going to get harder and harder to deal with. And the “support” I was promised by the hospital is not exactly… umm… supportive. So all I can do is my best, and hope that, with hindsight, I feel I did the right thing.