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
Once again I had to have another line entered, this time for the heart scan I had on Monday. You guessed it after two more failed attempts in my arm the foot once again saved the day!
On Tuesday I awoke to the suprising yet wonderful news that they were going to Harvest!!! The bone pain from the injections had become intense so this was a relief to hear.
5 hours later after being attached to this very cool machine in a FREEZING cold room, they had collected 10 MILLION BEAUTIFUL STEMMIES!
THE FEVER!!!
On returning to my room I quickley developed a temperature of 38.2!
Lesson learnt – even if it’s cold don’t stop drinking water
TOLD OFF BY NURSES!!!
3.5+ Litres drunk VERY quickley!
Night of NO SLEEP, IV antibiotics, bloods taken, temp fluctuating between 37.8 & 38.4 = SCARY TIMES!
Be Reassured since then I have been drinking 4+ litres a day!
On Wednesday I harvested again; 8 Million Stemmies in just 2 hours!!!
This was a back up incase there bad bacteria from in the once previously harvested.
To be honest the last 5 days have been really rough! Horrible nausea (luckily helped a bit by regular Iv shots), major issues with the body regulating its own Temperature – welcome to the world of hot flushes Becks:( And worst of all uncontrollable amounts of sleep. Quickly learnt I had to just got to go with it.
Throughout this time when awake I listened to music (yay for the new iPod!), while enjoying these two pieces made for me on the wall at the end of my bed. The wings by my good friend Claire Mitchell and the painting done by Corena Harris for me a couple of years ago. Thank you guys!!!
I couldn’t have done this last week without the support of the incredible nurses here & most of all my lil sister Pheobe! She has been the most incredible support emotionally as well as practically doing things like taking me done to the garden some days for ice blocks & some fresh air. Buying snacks for me & loads more. I feel so blessed to have her walking this journey with me. Thanks so much Febs!!!
And my white blood counts have increased again – as the doc says ‘we are on target’.
Yesterday they started giving me these two morning jabs. This is of the medication nuprogen which helps move my beloved stemmies from my bond marrow to my blood to prepare for harvest.
In 5 days (22nd of April), all going fine my stemmies will be harvested to then be conditioned for transplant. Eek it really is all happening, Thank you Lord!!!
INTO THE OPERATING THEATRE I GO …
2 familiar procedures later; firstly to have a contrast dye put through my Portacath to check that’s it’s working – TICK ALL CLEAR and ready to go.
Secondly to have a second line put in, this time through my right jugular. This will be used to harvest my stem cells & yay take bloods (no more Iv line issues or massive BRUISES)
During the procedure the spascity & painful cramps I’ve been experiencing increased so yay they sedated me & put me on oxygen. They are also going to increase my morning dose of the muscle relaxing meds I’m on which will hopefully make life easier.
AND THE CHEMO FOR HARVESTING BEGINS!
Bizarre how the all get gowned up (even my sis had to leave the room) yet they put it in me?!?!?!
22 hours of chemo drip to come – this is it folks!
,
Think my my face says it all; been a long hard day (starting at 4am for breakfast which consisted of 3 crackers & a milo). Dinner was really yum though, chicken tikka with rice & cooked veggies – much appreciated after a day of mostly fasting;)
WHATS NEXT?
So over the next few days my white blood count & platelets will drop, they will then start me on 2 days of injections to get the stem cells to move out of my bone marrow to my blood and then it will be STEMMIES HARVEST DAY!!!
In the meantime I rest/sleep & let the chemo do its thing:D
10th April: 9am Admission, room ready at 4.30pm & it all begins!
I had my portacath accessed then after an hour of my amazing nurse trying to get a line into a vein she went for the foot! With great success however it was flowing very slowly so took 30 mins to get enough blood. I now have a line inserted until Monday morning. In the meantime Im on a drip of fluids to hydrate me/keep the blood pumping.
This morning after a surprisingly good night sleep, despite the air conditioning being turned off for 5 hours (for maintenance) in 29deg heat. I woke early to nurses visits to take obs, do an echocardiogram & to my surprise a chest X-ray while still in bed! This place is so technically advanced including the hospital band which needs to be scanned for everything (see photo above). Good news delivered this morning that all my blood tests taken for nearly everything you can imagine have come back normal.
Unfortunately due to some concerns about my existing portacath (as it won’t give blood back anymore (this isn’t new as its still used for iv meds back home) so they now won’t begin the Chemo until Monday once my new line has been put in to my chest. Better to be safe then sorry. This means that we have been put back a few days as after I receive the chemo they will need to start the harvesting process which includes a few days of injections first. But hey any medical process involves being flexible;) Ive waited three years to get this far so whats 2 more days!
“Set your goals high, and don’t stop till you get there”- Bo Jackson
6.35am and the plane lands in this wonderful country; Singapore . Where my sister & I will call home for the next 9-12 weeks. 9 – 12 weeks of working at my new job: kicking the MS in the butt, recovery & rehab; MY GOALS which I know I can do! It was another great 11hour flight, this time on a newly refitted plane on which I slept most of it, thank you Lord! Once we settled into our hotel room, had sleeps and sorted out our next few days we ventured out to ‘din tai phung’ for the best feast of dumplings.
As of my admission into hospital this Friday (10th April) & first dose of chemo on Saturday I will be on a Neutropenic diet for the next 6-12 months. It was such a treat to indulge in this yummy food before then:).
Philippians 4:13 13 “I can do all things through Him who strengthens me”.
