Wow can’t believe it I have manages to do 21 days in isolation!
Most of it incredibly sick on high dose Chemo – SLEEPING, vomiting & more sleeping.
During the last 2 weeks I have had my Dad here to visit.
While he was here I didn’t see much of my sister – now I know why! Thank you Febs you are amazing!
The last 36 hours have been a reminder of how rough this treatment is. It was expected this would be the hard part for Becks, but it’s still a fight to stay calm when it becomes a reality. The staff and nurses at the hospital however are pretty amazing, and we are confident with Becks in their care.
To recap and expand on where we are in the treatment: Becks is currently in isolation for the second part of the process (the actual transplant), followed by a recovery period. With transplant day labelled as ‘Day 0’, here’s the outline of this stay:
Day -6: Admission, line inserted ready for chemotherapy
Day -5: to Day -2: Four days of chemo to wipe out the immune system
Day -1: Rest Day
Day 0: Transplant day to insert new stem cells (and Dad arrived, woo!)
Day 0-10/12: High risk period due to having a low blood count and no immune system, all precautions taken to avoid risk of infection. Expected that side effects hit from day 3 or 4. Body expected to strengthen from second week
Day 7-14: One in ten chance of an MS flare up for a week
Day 14-21: Discharge expected within this time depending on recovery
We have just started Day 7.
Becks has had the expected side effects – intermittent fever, nausea, vomiting, diarrhea, and mouth sores. This has meant a lot of lying with a few ice packs on her body and a paper bag always by her side. She has been given lots of medication to help subside the effects, and sedatives also. For a couple of days she couldn’t hold any food or liquid down, so would suck ice cubes when she could. She has started back on soft, bland foods since though.
The unexpected bumps – two nights ago she was running a fever and as part of this experienced convulsions. Then yesterday she was given a platelet transfusion (because her bloods were too low), but unfortunately had a reaction and experienced shortness of breath. From what we understand Becks had also contracted an infection of some sort (we’re still waiting for clarification around this), but they caught it early and put her on antibiotics and oxygen straight away. As I mentioned before, she’s being well looked after and closely monitored.
So, all in all, a predicted storm. However, we know that we’re supported by so many family and friends back home and around the world, as well as friends and the church we are connected to here in Singapore. Most of all we know we are in the hands of an almighty God, and he will not fail us.
Thank you for your continued love and support, it means so much to us!
The special vessel vessel that contained my stemmies.
Me sedated on a very emotional day.
ITS MY NEW BIRTHDAY!
A gorgeous cake from ‘Awfully Chocolate’, even though I didn’t get to partake it was great seeing my dad, sister, friends & staff gratefully enjoying it.
My honorary guests; dad, sister Febs, Gracie & Kelly in party mode,
I cannot explain what a relief it was to see the ‘purple bag’ removed after 4 days of high dose chemo.
The side effects were absolutely horrible but I knew I had to persevere to rid myself of the old ‘ms attacking’ immune system and prepare the way for my transplant.
I take my hat off to everyone else that has also had to undergo this treatment!
Today I was admitted back into hospital this time for the Transplant Phase but this time into my room for 21 days!
A line was inserted into a main vein under my collar bone.
On the way to & from the operating theatre I couldn’t help but enjoy the heat, smells & noises; this is it for 21 days Becks!
9th May. Me in my bed receiving the first of four days of chemo (triple the dose this time plus another one) with all my entertainment around me – thank the Lord for wifi!
And of course LOADS of anti nausea meds!!!
i was delighted by my meeting with the nutritionist today, yay I only have to be on a nutrapenic diet for 3 months starting from the Transplant this Thursday! Bring on the 14th of August…
To be honest as hard as this is; physically & emotionally I am putting on my hat of DETERMINATION
10th May; ok this is getting brutal!!! Violent vomiting, hardly any sleep but yay I just finished day 2 of full on chemo. Half way there until transplant on Thursday – thank you Lord!!!
And I take comfort in the above scripture amount others.
“But the very hairs of your head are all numbered”. Matthew 10 v 30
Status Quo – I look like a Tabby cat going bald! Thank goodness I got it shaved off first, makes the experience a little less terrifying however not so when you find it everywhere including in your food!
After harvesting 18 Million Stemmies and them going to the lab it turns out two thirds were BAD stemmas with a memory of MS. Yay they have been destroyed!!!
When I have conditioning (4 straight days of chemo) on the 9th, 10th, 11th & 12th this will completely elimanite all the left over ones (good & bad).
This means we have 6 million very healthy blank stemmies to be reintroduced on the 14th of May as the transplant. The body will then engraft & multiply the new ones as I sleepover the next 7-10 days.
The last 15 days as an inpatient at SGH has brought a mixture of experiences & feelings; FATIGUE, pain, discomfort, anxiety, NAUSEA, NAUSEA, NAUSEA, hospital food, hard physio sessions, laughter, joy, MILO’S, Whittekers chocolate, suprises, visitors from NZ & OZ and wonderful new friends.
‘KOI’ iced white honey tea brought to me by my one of my wonderful nurses Penny!
And most of all despite having a fever I harvested 18 MILLION STEM CELLS!!!
The last few days in hospital brought a significant improvement of the spacicity in my legs aswell as an increase in strength – as my Nuerologist Professor Pavanni says is a good sign of the improvement that I will experience from the transplant.
Really encouraged that I just spent 15 days in hospital, the next hospital stint will be for 21 days; in isolation, 4x The amount of chemo & will become nutropenic but it’s time to deal with this wretched disease – whatever that takes!
During the next 2 weeks I’m enjoying staying at our apartment to rest, rejuvenate & enjoy some more time exploring.
On Thursday the 7th of May it’s my Birthday! Turning 35 I looked up the biblical meaning of the number and it is ‘HOPE’!!!
THE PLAN:
8th May Admission into Isolation (21 days) for the insertition of another line in my neck for taking of bloods
9th, 10th, 11th & 12th – Chemo
14th Transplant – also described as my new birthday
29th May – DISCHARGE
Return to Apartment
Friday 5th June fly to Auckland
Saturday 6th June FLY HOME TO NELSON
*NB this is a plan, things could change
