I’m alive, well and toasty warm on Day 5. It’s Sunday morning and after some good but broken sleep I’ve made my bed, washed my *smalls* and await the culinary delights that will be breakfast.
A good day yesterday and I didn’t cry once!
The treatment process is underway and started with a cannula placed in my left wrist. My veins haven’t been playing nicely and the cannula will stay in for the next 4 days to stream a daily dose of steroids administered about 10:30ish.
It’s more comfortable than I thought it would be, but I can’t get it wet and I haven’t figured out the logistics of washing my hair (while I still have it) and no I won’t shave it until absolutely necessary. Update it’s been taken out. Neckline put in tomorrow. Ugh.
So yesterday I relaxed and rested and chatted in the 3rd floor patient lounge with Tash about everything and nothing.
She got her neckline out and is heading home in a few days. I’ve made friends with 2 girls from Norway who are in the same phase of treatment as me. Eirin (how pretty is that) and Christel.
A few others too at various stages Linn from Norway too, Peter from Denmark and I also met Vaughn from the Blue Mountains, Australia. I swear the Scandinavian contingent speak better English than me, and although they are from different regions it’s all same same.
As I sat down to dinner last night I received a message that the girls were going out! My walking isn’t much chop but they offered to arrange a taxi and a wheelchair could be borrowed from the hospital. While great in theory, I declined. I’m just not comfortable going out at night, with snow and ice etc… I was quickly dubbed the Party Pooper, but I said I was happy to go out during the day.
Note: At this point in treatment I’m allowed to go out and eat whatever as my immune system hasn’t been compromised. Yet.
Then after a video chat between 4 of us and between 2 floors, a Domino’s pizza delivery would be arranged and we’d meed on the second floor. WOOT! That I could do. I quickly moved away from the meal in front of me and made my way to the Level 2 Patient Lounge. 🙂
Splitting the cost of the pizza, my portion? 250 Rubles. AUD$5.60. Done.
I met more patients again mostly Scandinavian, I find it amazing how good their English is and how similar it is. They explained they learn from primary school and their kids are now learning so it’s almost second nature to them. We’re half a world apart but we all have families, friends, homes, jobs and MS.
We’re in this together.
I’m trying to restrain my stories of “back in the day” 2014, but if they’re interested I’ll chat away. Doing that actually only reconfirms that this place is the right place for me right now.
Um yeah, so since my last blog I officially got accepted for treatment.
I’m healthy said from this damn MS.
Considered, thoughtful and kind Dr Fedorenko reviewed my results and most interestingly compared my MRI from 2014 to now. I now have several more lesions, particularly on my spine with correlate to the deterioration of my walk and another new lesion on my lower cerebral thingy (my word, not his).
My bespoke procedure will be roughly…
4 days steroids / stimulation injections at 11:00pm + 3:00am
1-2 days stem cell collection
1 day Spinal / CSF infusion (TBC)
3 days chemotherapy (Cyclophosphamide)
8 days isolation
1 day Spinal / CSF infusion (TBC)
1 day Rituximab
29 December = HOME!
Dr Fedorenko is going to write down the name of the spinal infusion and dose for me, it was difficult with accent to understand.
I suffer with some anxiety and am obviously nervous about the spinal infusion and he’s confirmed that I’ll can and will be sedated and anaesthetic used etc. Thank GAWD.
He describes it as a 3 pronged attack with the addition of the spinal infusion to the Cyclophosphamide and Rituximab.
Seems to be closer to a Myleo regime, I’ll get that clarified too.
*CSF: CerebroSpinal Fluid ~ A method routinely done for certain cancers.
Back to the Norwegian girls – we’re going out to the mall today!!
1:00pm for a couple of hours for some shopping, errands and lunch, it may be my only outing outside the hospital grounds so I’ll make the most of it.
See you on the flip side.