Carrying on from message #5065....
Ok, today is Day 0......
My final cycle of chemotherapy concluded on
Day -41. Pain levels are now manageable but still always there.
Over the following 3 weeks or so, I was examined at the VCCC (Peter Mac) with the most comprehensive set of nuclear medicine tests, blood tests, pulmonary function tests, ultrasounds, full mouth dental radiographs, etc. that I've ever had.
These tests all showed that I was in perfect health, apart from having multiple myeloma but its specific protein which should be <27mg and was 214mg on admission is now <5mg. Yeah! The upshot of all these tests was that a stem cell trnsplant was offered as the best chance of prolonged quality and quantity of life with a high likelihood of success.
Day -25: Now I'm needle-phobic and after 18 weeks of once/twice weekly IV chemo, I hadn't conquered my fear of needles, in fact I was getting worse. The Peter Mac solution was the insertion of a Permacath: a double-lumen indwelling catheter that is inserted under the skin on my bright side upper chest and thence into my right jugular vein and passed down to the vena cava near the base of my heart. Trepidation when they inserted it but Midazolam/Fentanyl ensured that my attitude was "Whee, who cares??? Happy Juice yeah!!!"
Ok. look away now - this is what it looks like.
Sorry, no more graphic photos, I promise.
But this device is wonderful - no more phobia: they can access my circulatory system very easily and with what is to be ahead of me, my arms and my emotional state would not have taken any more repeated cannulation.
Day -22: Admission for IV chemo at 3x previous dosages to stimulate bone marrow production of stem cells. This took all day but was totally painfree/terrorfree due to the Permacath.
Hmm... "why are you giving me this box of injections?"
"Starting 24 hours after chemo you need to inject yourself with three of these injections every evening for at least the next 10 days."
Insert sound of jaw hitting floor.
"These G-CSF hormone injections will stimulate the production and release of stem cells: you may experience some bone pain in a few days but that is good - indicates that stem cells are being produced."
Went home feeling well, interesting that my back pain has completely disappeared.
Day -21: I spent over 60 minutes with the first injection pointing at my abdomen, perspiration pouring down my face, shaking uncontrollably, my fitbit telling me my heart rate was up to 120. I finally was able to give myself the three injections but was an emotional mess. Mrs C arrived home from work, took one look at me and decided that she'll do the injections in spite of her own trepidation and other issues we've been having. So she took over the task - so proud of her rising to the occasion: the chemo on day -22 and the injections have resulted in a huge shift in the relationship dynamic and it's better than at any time in the last 6 months (albeit starting from a very low level).
Day -19: Well I spoke too soon - back pain is back, but I feel like I've got the worst case of jetlag coupled with a hangover (minus only the headache). Lethargy, no appetite (and I normally will eat anything that doesn't bite me first <g!>) and total emotional withdrawal from the family. Oh well they did mention something about pain.....
Day -17: Still feeling off-colour, but at least the hangover/jetlag feeling is gone and my appetite is back. Suddenly at about 7pm every beat of my heart is agony - every vertebrae, shoulder blade, pelvis, femur feels like it's going to explode 75-80 times a minute. Pain level is now WAY up, breakthrough pain control Fentanyl and morphine do little to alleviate the pain and I find I can't sit still or lie down for more than a few minutes without the pain levels becoming intolerable. Walking seems to reduce the pain so I walked around the house, around the block all night. Finally rummaging through the bathroom drawers at 5:30am I found a box of Panadeine Extra - 2 tablets and I was asleep within a few minutes. Bliss.
Day -16: a call to Peter Mac when the pain woke me: - "oh the pain is good, you're producing and releasing stem cells" - and scripts were promptly faxed (people still use faxes?) to my pharmacist for some anti-nflammatory and pain relief meds and the pain substantially subsided over the next few hours. Whew!!
Day -15/-14: Back to Peter Mac for stem cell harvesting. Now this stuff is really interesting so I'm going to inflict a non-confronting photo on you. The process I guess is a little like dialysis: blood is drawn out of my body and into a sophisticated machine that spins the blood separating it into red blood cells, buffy coat layer (white blood cells) and plasma. The stem cells live in about the middle of the buffy coat and are extracted by the machine being identified by a laser beam that selects the stem cells by their unique size/density. Some other white blood cells are caught up in the process so there's about 20% stem cells in the catch. You can see the collection bag to the right of the aphoresis machine (as the harvester is correctly known) with cells and some plasma that had been collected before the harvesting commenced:
The blood is then returned to me via the second lumen in the Permacath. Harvesting took about 6 hours until they felt they had a good collection. The amount? Imagine about 2x 500ml IV fluid bags full. I went home a little tired but otherwise comfortable. Harvesting continued the next day but only for about 4 hours: they tested as they needed a minimum of six million cells (they felt they got about 4.5 on day 1) and rang me to tell me of their bumper crop - nine million+ cells - their highest harvest this year.
Day -11: Lethargy was back, back pain as normal (moderate) but appetite was still there - dieticians said carbo load and eat frequently so Mrs C cooked up a storm of my favourite pastas. She's fantastic, now totally supportive and comes with me to all my visits to Peter Mac.
By
day -7 I was feeling well again, no lethargy, appetite back, happy that I felt almost normal. Friends from uni arrived and took me out to lunch, wanting to see me before the transplant. Fantastic to see who your real friends are. The word seems to be getting out both among my practice clients and the cohort of our graduating year with lots of emails of support - made me tear up quite a lot.
In the evening, the optimist in me went online and secured two SQ J class flights to DBV for May 2020 (right on release even though I have no status with SQ: tried QF but only whY class available as far as LHR, no EK or QR at all even though we're both WP). Go figure.
Day -1: At Peter Mac for a high dose of chemo - this is the one that's designed to completely destroy my bone marrow. Lots of IV fluid therapy both before and after the chemo, lots of pain relief and anti-nausea drugs as well. About an eight hour day. In order to minimise mouth ulceration, I have to keep a mouthful of ice cubes during the whole chemo administration: about four and half hours. Mrs C was kept busy refilling my ice jug from the ice maker machine. Following the chemo, I was admitted as an in-patient for close monitoring and here's my "office" for the next two weeks:
With all the meds I'm on, I'm feeling quite comfortable and pain levels are low / manageable - and that's the way I'll be for a few days until the effects of the destroyed bone marrow manifest themselves.
Day 0: a 3:00am start as the nurse woke me to take blood - apparently this ensures that the results are back from pathology by 8:30am. A few delays for one reason or another meant that the frozen stem cells were not brought to the ward till 5:30pm. The harvest had been divided into a number of small bags and my transplant would be 3.66 million stem cells in two fluid bags.
The stem cells were gently thawed in a warm water bath and then run into me via my Permacath over just 4-5 minutes. Then hydration IV fluids for 4 hours. From now till next week I'm on 4-hourly obs and blood tests every morning at some ungodly hour as they watch for my white cell count and platelets to plummet to zero.
This should occur by Saturday -
day +3 - and last for about 5 days until my bone marrow starts producing again. It is at this period that I may be quite ill, weak, lethargic, but I'm hoping I'm going to suffer less than the bleak picture the doctors are painting - I guess they have to over mention the possible side effects even though a percentage of people don't have that bad a time. We shall see.
At the nadir of my treatment I need to look for SQ flights home from ATH-MEL; at least I'll be awake at 2.00am or so when the flights become available.
Thanks for correcting my mis-information 
). She doesn’t agree with PMR as I have improved so much in the last couple of months and she says PMR just doesn’t improve without treatment. I now have full range of movement in my knees and strength in my legs, with only a little stiffness with inactivity. Shoulders are more of a problem - she says I effectively now have the equivalent of two frozen shoulders. 
