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Freddie and me

Today is the sixth anniversary of the day my life changed forever. That too was a Monday morning, following on from a normal weekend - but it didn’t actually start there.

Back in February 2012, I went to the doctor as I was feeling quite listless. I no longer had the energy to do my walking, something I loved to do, or go to the gym - both these things I had been doing for a several years.  My doctor said that is was depression, and put me on anti-depressants. Two months or so later I went back being unable to sleep. He prescribed me sleeping tablets.

Yet another couple of months later I was back with bad headaches - stronger painkillers prescribed. Finally still a couple of months later I went back as when I tipped my head back it felt like I had a hard spot at the base of my skull, and I would feel dizzy. I nearly fallen over pegging out washing. This time he said it was stress and I needed massages to relieve this. Never before had I been to the doctors so much in one year.

So back to Monday, 15th October 2012. I got up at my usual time, drove to work, had my usual morning tea break coffee from the coffee van that came every morning. Just after 11, I went out to the workshop to update the whiteboard with the jobs for the week for the teams, and tipping my head back to do this, went all dizzy.

This time though it got worse, and I stumbled back to my desk holding onto walls etc, before sitting down with my left side numb and my left leg twitching really fast. I remember thinking “Oh no, this is bad”. I’m not sure how long it lasted, probably less than two minutes, but it felt like forever. When it stopped I just sat there, before, feeling ill. I managed to make It to the restroom in case I needed it. When I didn’t, I returned to my desk via the kitchen to grab a cup of water as I had a raging headache.

I calmed down and then decided to ring my doctors. Of course a machine answers and after selecting the nurses option, I left a message briefly telling them what had just happened to me. Two and a half hours later they rang me back and asked me questions before saying I was to come straight in to see my doctor - but not to drive myself.

By now I was feeling my usual self, but I rang a friend who I knew didn’t work on a Monday, and she took me to the doctor’s surgery. He spoke to me briefly asking the same questions as the nurse before ringing the hospital to tell them he was sending me up.

Back into my friends car, and I was so blase about it by this time, I actually had her drop me off on the opposite side of the road to the A&E entrance - telling her a big thank you, and to go home. That I would ring my son to come and pick me up when he finished work at 5pm.

In I walked, only to be told at the reception to go straight up the lift to the first floor where they were expecting me. I was immediately taken into a consultancy room, where a young registrar came into see me. We talked, I rang my son and told him where to find me, and some bloods were taken.

When my son arrived, the registrar was just in the middle of telling me nothing was showing up, so if it happened again I was to come straight back in.

This was when I listened to my inner voice. You see my mum had died of a brain tumor in 1992, and I told the registrar that and asked for a CATscan for reassurance that this wasn’t happening to me. He said there was not point as it would come back negative, but as my son told him I am one stubborn lady, so he finally agreed, saying I would have to stay in for the night.

Early evening I was wheeled down for the CATscan; and the same registrar a couple of hours later then had to tell me that there were shadows in my brain. I felt sorry for him, but me being me, when he told me not to worry that they would get me back to normal, my response was “good luck with that, no-one has ever called me normal” which made him laugh.

I then had to break the news to my son, who was turning 19 the next month. When he came in the next morning I told him, and just to show he is my son his first response was to say “you mean they found a brain in there”. Ha ha ha. But his next question was “you are going to fight this aren’t you?”.  I had always said after watching family members going through cancer treatments I wouldn’t, but having him ask me this, what else could I say but “of course I am”. Just this year he admitted to me he asked this to make me fight.

I needed to let work know what was happening, so I asked the doctor when he came around when I could return to work, and he calmly told me “never”. Wow! And he continued that I would never drive again.

An MRI the next day showed that I had three smaller tumors around the inside of my skull, but one huge one in the middle. So the next move was a Biopsy to determine the type of cancer and treatment needed.  This was done days before my sons birthday, with the result just days after.

I had a Grade 4 Geoblastomer Multiforma - a particularly nasty cancer that had the nickname of The Terminator. I specifically stated that I did not want to be told how long they thought I had to live.

Due to the Christmas/New Years break, the genetic testing of my sample wouldn’t be ready until late January, but my Oncologist was a very experienced guy who selected the right treatment.  This started beginning of December with Chemotherapy being a tablet every morning for five days, and then a 23 day break before doing it again. However radiation started on New Years Eve for six weeks with every weekday also meant taking the Chemo tablet. This was then followed by five more months of chemo. I was also on high doses of steroids during this period.

When the test results did come back, it confirmed that I had been put onto the right treatment for the genetics of it - thank God.

By March, the smaller tumors had all gone and the big one had reduced in size.  By August, one month after my last round of chemo, the MRI showed that my tumor had “gone to sleep” as the specialist put it. It stayed this way for the next four and a half years, time when I lived with a time bomb in my head, doing three/four monthly MRI’s to keep an eye on it.

It was also at this time that my specialist told me that when he first saw me, he predicted I had four to five months to live, and he was telling me that then to encourage me as I had proved him wrong. My son proudly said I was too stubborn to die.

During this time I then had a fight with the side effects from the treatment. Due to the high dosage of steroids I had Type 2 Diabetes, Lymphodema, loss of muscle function, and huge weight gain to deal with - all that with time and treatment was temporary side effects.

But the worst was osteoporosis, one thing that can never be reversed. Because of this and a previous back injury lead to me having a diagnosis of seven spinal compression fractures, which meant I had to go into a nursing home at the age of 50. I lived in there for 15 months before getting enough mobility to get my own little place with caring people watching out for me.

It has also meant that as of tomorrow (Tuesday, 16th), I will have none of my teeth left, just dentures top and bottom.  This will be my fourth time in for oral surgery so it’s not a sudden thing.

I was fortunate though as it was a pet friendly home, and the manager at the time encouraged me to get a pet, so I adopted my little dog, a Bishon-Shtitzu X boy who became my angel and my reason to get up and moving through the pain. I ended up over the next couple of years having over 20 in total of these fractures, and as a result as about 6cm shorter than I was at the start. I no longer have a clear waist line, but my little Freddie has kept me mobile.

Waipuna Hospice (Tauranga) during this time were fantastic. They provided me with a mobility scooter, and an electric lazy boy. I also had fortnightly massages and lots of support from them. Can’t recommend them enough.

These were later gifted to me by Hospice as the costs of maintaining the mobility scooters had become too high for them to cope with, and the Lazy boy was an older model that was due for replacement. I still need to sit with my legs up to keep comfortable and reduce the ongoing pain in my back.

Finally after four years from when the treatment ended, late in 2017 I lost appetite and lost a fair amount of weight dropping over 20kg. My doctor put me on a supplement drink to get my weight back up by 10kg where I stabilized.

Then my next MRI showed no tumor there anymore, but they asked me to keep it quiet until it could be confirmed with the next MRI.. They did another MRI six months later which confirmed it had just gone, only scar tissue in the spot where it had been. Thank you God, a true miracle given to me.

I still have yearly MRI’s and specialists appointments and will until five years have passed, but so far these have been clear.

This has left me with a great gratitude to God, to life, to my son, and dear friends and family members who stuck by me. Nothing I enjoy more than a good laugh (best medicine ever), which over rides the slight (some days a little more than that) pain. I have learnt how to manage things so that the only help I need is weekly housekeeping provided through my local hospital.

It has also left me with the determination to fight for the right to choose how much we should be forced to take. I have firmly believed since my mother’s death back in 1992 in voluntary euthanasia, even having what was then called a living will drawn up - the first one my lawyer had ever done. These are now called Advance Directives, and need to resigned every five years to confirm you still want them in effect.

I know what it is like now to look death in the face and laugh at it. I know what it feels like to plan my own funeral, and to say goodbye to friends who I may not see again. I was also blessed that these friends gave me their “aulogies” which boosted my self-confidence and gave me the will to fight. At the start of all of this my specialist asked me what my goal was, and I said to see my son graduate university. He responded that that might be expecting a bit much, but I saw it, and have seen him get a job in a medium sized accountancy firm, and he is now going through the final stages of qualifying as a Charted Accountant.

I fight for this bill, even though at no point during my journey would I have eligible for it, as initially I was going through treatment, then because there was no expected end of life time frame while it was “asleep”, and now of course because I am in remission. One thing I know for certain is, should my tumor return then I would want to apply for it. I am done fighting, and more treatment would only make my long term side effects worse, therefore life unbearable.

My story

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