This image is such a true depiction of the last 3 years of my life - and living with this Complex Venous Malformation medical journey …x😂❤💯🙌 * It honestly feels like I am running some kind of 'Ultra Desert Medical Marathon' that crosses countries/time & space with no end in sight…EVER ! 😂😥❤ * Like Im training for some kind of endurance, military combat 🤷♀️🏃♂️🏃♀️ I have only just woken up from this Round of surgery in Sydney and my surgeon is already scheduling the next Round for June…😮🙏🏽!! * A never ending infinity loop through my soul to keep these Complex VMs from taking over my head, neck, cervical spine, larynx, chest … And I accept that this beautiful life has been blessed to me x ❤🙏🏽🙏🏽 Written just for me… ❤🙏🏽🙏🏽 So I will LOVE it with my entirety x 😊 Even all the moments of beautiful hardship x 'In Him I AM' x 🙏🏽🙏🏽😇 * I just love this image…it made myself and my family laugh so hard this morning x And laughter is truly wonderful x 😂❤❤
P.S Shelley Hamersley is at the back coz #ShesAlwaysGotMyBack x 😂😂🙌🏃♀️🏃♀️
* * { Day 786 } Post Surgery Update * Just an update for everyone back home who have messaged and sent their love x thank you for this x I have loved your words x ❤ * I did a thing yesterday.😂❤ Well actually my surgeon did an incredible thing….😂🙌🙌❤ But my eccentric, witty and kind Anaesthetist (who I get every time thank God 🙏🏽) said Im one of his 'fav patients' with little side effects, so I kinda reckon I did a thing too x ❤😂 My Interventional Radiologist surgeon is so pleased with the outcome…. And by all accounts the surgery was a success🙌🙌🙌🤞❤ * Under GA with CT guidance he was able to access the multiple VMs deep in the spaces of my cervical spine through the back of my left skull base with fine needle catheters - while also navigating through all my nerves, arteries, muscles and all the bits that help me function.
He then injected Chemotherapy Bleomycin directly into the bulk of the lesions and with the help of 4 x people turned me over on to my left side allowing the Bleomycin to filter and flow through the river system of VMs that are taking over my head and left neck. This was all closely monitored with CT. This technique is innovative and effective with lesions that are deeply embedded, cant be cut out or shrunk with oral chemo. Once this was done he then protected the toxic Bleomycin with a large buffer of anaesthetic to stop it leaching and flowing into my good nerves, tissue, muscle, arteries x Im truly, utterly amazed and so very thankful x * After a little hiccup of an 'unusual' non working left arm - Stroke Protocol was initiated with emergency CT imaging and being closely observed on the Stroke Ward. A two hour, post surgery MRI the next morning has confirmed NO permanent nerve damage to my cervical nerves - and there is NO indication of #Stroke 🙌🙌❤❤ Rather, the MRI shows inflammation and pressure from all the Bleomycin/Anaesthetic pushing on my cervical nerves and Brachial Plexus which = my left arm doing weird things!This will resolve and get better as each day passes x ❤❤
I am looking forward to seeing the MRI results in 3 months to see just how much has sclerosed/died and how much more needs to be done. He believes he may have partially sclerosed 20-40% this time which the next MRI will confirm x
Today has been a blessed day and I just feel so thankful to be surrounded by such an amazing Medical Team, Caregivers and Doctors x Hanna Joy x * This evening my head feels like it is back in my body from the Ketamine, Anaesthetic and Fentanyl haze. My head pain is controlled and my body feels stronger each day. I've even gone for a little stroll around the ward with my Sister Shelley Hamersley which makes me feel so happy x ❤❤ But not as happy as talking to my beautiful Sons this avo. Life really is bloody beautiful x
I wish you all my love on this sleepy Wednesday evening from Sydney x ❤❤
