Archive for May, 2010

Nothing worth doing was ever easy.

by tealou on May 16, 2010 in Uncategorized with 5 Comments

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.

We are all stronger than we realise.

by tealou on May 2, 2010 in Cancer, Death with 3 Comments

I always knew it was coming, and I frequently worried how I would cope when I got that call. My Grandma Chris is 79 years old in December… and as much as I hoped she’d live forever, I knew that every year she was getting just that little bit more frail and that it would come eventually.

But not like this.

My Grandma Chris is the single greatest influence in my life. She is the woman who raised me in my formative years; the woman who laughed with me when there wasn’t much to laugh about; the woman who filled my school lunch box with so much food I was able to feed half of my class. The woman who was there for me when my mother wasn’t. Who bought me my first sanitary pads, bought, washed & ironed my clothes, lent me money, screamed at me, sometimes quite mercilessly tortured me. She was always that one constant in my pretty tumultuous upbringing. She is the source of my world view – that person who keeps me humble and who I am more like than I care to admit.

So when I say “my Grandma is sick and I need to be at the hospital every day”, I get this look, like… “it’s not your Mum“. She’s just my Grandma and Grandmas are old and Grandmas die. But to me, this is not just a Grandma. She is my rock.

She is the toughest, most hard working and kindest person I have ever met. And honestly, while I knew in the back of my mind that she was getting old, and Jason and I had often had discussions about how I will deal with her death… now that I am facing it’s inevitability, I am a little bit mad at the world.

Grandma was born in Tipperary the week before Christmas in 1931. Her mother was unmarried. In Catholic Ireland. In the THIRTIES. She had 2 older brothers and a younger sister, Josephine, who died from a tonsillectomy when she was 7. Around the same time, her mother died in childbirth. Her father didn’t give a shit, so her uncle paid for her education at a convent in Cork.

My Grandma grew up in an Irish Catholic Convent during the Second World War. She worked her whole life. She worked 2 jobs, often cleaning offices. Never smoked, never drank. Never did anything but work and raise her 2 sons. She doesn’t talk much about her childhood – her memories are always positive and usually avoid nun-dodging.

She is the toughest, proudest, most stubborn old bird you could ever, ever meet. She can be ferocious – and it would be a disservice AND a lie to not acknowledge that I was often afraid of her. But holy fuck, is she funny. She has that Irish “oddness” about her, and noone can make me laugh like my Grandma. Even now as she lays in her hospital bed, we laugh.

But the thing that makes me angry is that despite all of the shit-on-a-plate that she has been handed in her life, her faith in God is unerring. God and Mary and Jesus and rosary beads and Catholic ritual are all so important to her, she is so genuinely hurt and afraid for my mortal soul. Because I don’t believe in God. I believe in God so much less now, if that’s possible, than I did a week ago.

Because now, this woman, who has led one of the most virtuous lives I can think of, is faced with either pancreatic cancer that has metastasised to her brain and lungs; a primary brain tumour that is inoperable and advanced; or a benign brain tumour that will still only give her a year tops. The woman who worked hard; never smoke, never drank, saved every single cent beyond what was necessary – lived a very humble and faithful life – is being rewarded with a painful and potentially undignified end. So FUCK God and his plan. But I don’t say that to her.

We have been waiting 8 days to get an MRI so we can find out the prognosis. The only thing that keeps her lucid is the dexamethasone, but she is on a downward spiral. How fast it’ll happen remains to be seen, but if she can she’ll come home with us. I feel that it is the least I can do. She looked after me when she didn’t have to. She never lets her guard down with anyone but me – and for that I feel privileged. I know that she is embarrassed but she lets me help her. And it is not an obligation, it’s an honour.

And I am dealing with it much better than I thought I could. I visit the hospital every day for a minimum of about 4 hours, I do her washing, make sure she’s eating, chat to her, fuss over her, remind her again that we have taken care of everything… and in a weird way I am enjoying the time I get alone with her. And now, facing her death is not so scary. Through trying to be positive for her, I end up holding it together.