04/11/2021
I just wanted to give an update as I’m getting lots of concerned followers sending me messages.
I am blessed to be home after 3 weeks in hospital a d ICU and have an oxygen machine which is my most favourite thing ever.
Between my mom, sister, husband and mom-in-law, things are still organised at home and I’m not left alone. I am so weak, I’ve never felt this exhausted before.
I think I hit a perfect storm to be so ill as I had brain surgery, got COVID, had full brain radiation, tumors grew and progressed, changed chemo all the while trying to rest and move and not noticing the deterioration of my body…
I have never been this thin and I don’t like it, high school me would’ve been thrilled to weigh48kgs, but as an adult who is over 1.7m tall it is just unhealthy - especially the way I lost the weight. My legs look like giraffe bones with knobbly knees and I have a lot of physio to do which I am hopeful will get me to build some muscle so I can get up from a seated position by myself. In my healing space we have a chair that actually lifts and pushes you to a standing position which I love, if I have my walking frame in front of me I can get up, it just takes a while - so much going on and I am asleep through most of it…
The just of things is I have a pneumonia that typically only HIV patients get and they recover quite well with their ARV’s. For those of us that don’t have HIV the odds are pretty bleak: 5% survival rate.
FIVE %
Plus I have cancer all over the show…
Don’t count me out just yet I reckon,!my body has a mind and will of it’s own.
The near suffocation and death this time around was my worst and one where I was truly petrified of dying because it was so painful and scary suffocating in front of your family and not being able to do anything - so now I’ve also developed panic attacks (breathing helps a lot with those issues so I’m keeping it under control)
Thank goodness Justin’s mom had an extra oxygen tank and he ran to her house in the middle of the night to get it for me, without that I would never have made it through the night. Paramedics arrived and it was my first trip in an ambulance - wow is there a lot of equipment in those vehicles! We decided to call paramedics as I was unable to breathe without oxygen and the machine I had was fixed and needed electricity. There is no way I would’ve gotten to the hospital conscious or even alive if we decided to drive ourselves- it was a nightmare of 24hrs
In addition, all my other death experiences were painless and under heavy sedation and pain meds so was quite blissful, but being awake and suffering a drawn out and protracted potential end was exceptionally scary - calling for help and no one can help you even though you’re in the hospital 😱 I must thank the doctors and staff at Glynwood Hospital as they did a fantastic job stabilising me so I could be transferred to the Donald Gordon. They constantly checked on me, I felt very safe in their emergency room and as always my team at the DG who continue with extraordinary measures to keep me going 🙏🏻 plus I think I’m a pretty interesting case study and research participant that they need to keep me around longer as no one know how I can still be alive after all I’ve been through - I think I’m just plain stubborn, from young if someone said I couldn’t do something I would work so hard to prove them wrong…
And I so want to prove them wrong but there is always reality that comes knocking, I feel the pains and twinges, dips in energy, weakness and just looking at photos over the years…
The worst thing is it sneaks up on you, both cancer and this pneumonia never did I imagine this happening plus I still have other bacterial infections at the moment so my tummy is just full of tablets.
I honestly didn’t even think of pneumonia as a possibility as my lungs were clear and I didn’t feel any fullness in my lungs, I wasn’t coughing apart from having occasional spasms in my chest. Those did get quite intense sometimes and I couldn’t breathe but I still attributed it to my cancer around my bronchus…
Managing my pain is hard as I don’t want for over do it but I realise I need stay ahead of the wave, I can’t manage with the levels of pain I experience.
The scariest part of being so weak is I am completely dependent on those around me. All the muscle in my legs and especially around my knees has just vanished. So I’m doing at home physio, started yesterday and it seems so easy but today I am exhausted 🥱
I can walk but I stumble a lot so have a frame to help me however I need an actual person to help get me up - it’s absolutely too bizarre and being bed ridden and reliant on others is driving me slightly dilly.
Right now I’m on no chemo and purely trying to build strength and fight off the remaining infections I have, I think it would kill me if I was on chemo so I don’t know what the next steps are. When the fog clears I am sure I am going to whack this with all the alternative medicine and things I wasn’t allowed because of chemo, build my strength and make memories…I have no idea what will work and more importantly how much it’ll cost…I am dreading the slew of invoices I know are coming from all the doctors and alternative and palliative care, physio, portable oxygen etc…
I hit a very low point yesterday evening and unfortunately it is a side effect of my medication to prevent seizures - I never want Laurie to see me have a seizure. Sweet lord I will remember the look on her face as I was suffocating at the kitchen table and screamed I was purple, before this stint in hospital and it haunts me. I think the reason I fought so hard to pull through is because I knew she could not have that image as the last time she saw her mom…
Doctors have said I was literally two minutes away from death. This was extremely serious and they wanted me to be intubated me but warned Justin I likely wouldn’t survive. So he said no to intubation, they did a blood gas and just one reading gave them pause to not intubate and rather use other machines.
I didn’t realise how long I’d been in hospital until Laurie asked me about Halloween. In hindsight I feel a lot of this is related to COVID as my deterioration started when I got it as well as radiation. I may have been battling this since March!!! No wonder I have been so out of it and exhausted, having blood transfusions and all sorts. Trying my hardest to be involved in things and it actually just did more harm than good.
I can not get up off a chair or any surface, so need to have someone around constantly if I have to go to the bathroom or do anything essentially which I hate so I’m really going to give physio a proper go of things- I need to be able to walk, sit and stand. Being isolated and dependent is horrible, as said before I’m going through a bit of a dark patch and feeling quite depressed- I guess it’s hard not to, I had all these plans for this year and next and they’ve been wiped out along with my poor knees.
Time is such a precious commodity, use it wisely, spend it with people you love, if you need the time to heal and regroup there is nothing wrong with that either. You can only give of yourself with what you have, so build the best you…
I finally slept like 6hrs last night so I feel a bit more energised (as in I could have a 20minute conversation with someone before falling asleep).
The constant yo-yo of emotions is exhausting, I’m ready for things to be done: miracle or get better and stronger because I don’t recognise myself at the moment and quite frankly I’ve had enough of cancer!
