It’s basically two years since I first noticed the lump on the left side of my neck. A CT scan in early January 2020 confirmed the return of my Follicular Lymphoma that I had first experienced and been treated for in 2016. It’s been one hell of a roller-coaster ride since, and I thought I would try and work out a few of the numbers.
Since that day in 2020, when I had the CT scan confirming the return of my Lymphoma, almost 700 days have passed. Or looking at it another way, 100 weeks or nearly one million minutes, but who’s counting. I could also count from the day of the first diagnosis back in 2016, which works out at just over 1600 days or 2.3 million minutes. For the purposes of this blog, though, I am just going to count what happened over the last two years.
Starting with six rounds of R-Bendamustine, which involves two visits to the hospital per round. Then ICE chemotherapy of three rounds over three days. Then six days of BEAM before my stem cell transplant. Followed by three treatments of GDP and so far 11 treatments for the Glofitamab trial I am on. So that means I have spent forty-two days at the hospital having various sorts of treatment infusions this year.
Talking about the hospital, there’s the essential visit with the Haematologist before each infusion, so that works out to another twenty-three days. Not to mention being admitted into hospital on three occasions, including the stem cell transplant adding another twenty-five days to the tally.
So far, I have managed to spend ninety days at the hospital, and that’s before counting the multiple visits earlier this year for twice-weekly blood tests and infusions of both platelets and red blood as my counts had fallen through the floor. That counts for at least another ten days back in the ward.
One thing that’s too hard to count or properly remember is the number of times I have had a lure inserted into my arm. Things got especially bad during chemotherapy when on one occasion it took seven different attempts and four nurses to find a useable vein. Even with treatment this week it took three goes and two nurses just to take a blood test out of my right arm. I really know how a pin-cushion feels now
Then you can start adding together all the incidentals such as biopsy(three), CT/PET scans (nine), insertion of PICC and Apaparisis line (three), and finally, the clinical psychologist (three). All this brings my number of days when I have been at Auckland hospital to one hundred and eighteen. So if you just counted working days, that means I have been at the hospital once every four days for the last two years.
So has it all been worth it? I have to say that I almost gave up hope along the way, but the hospital Psychiatrist managed to put me back in the right frame of mind. After participating in the clinical trial for Glofitamab, I have made it to the complete response stage, so yes, it has been worth it. The only problem is that this is Lymphoma, and there is an excellent chance that I will suffer a relapse. If that happens, the fact that I am refractory to chemotherapy will mean it’s either straight to a clinical trial, maybe using Glofitamab for a second time. Or let the disease run its course, which obviously isn’t the preferred option.
During 2020/1, Auckland has suffered three different lockdowns thanks to Covid 19 while I have been treated. During that time, the conditions for the nursing staff at the hospital have been even more stressful than they usually are. I owe them all a huge thank you. Roll on 22nd December for my final infusion and then another PET scan (my eighth) a month or so later.
With Auckland’s, lockdown finally coming to an end, and my health improving. Sarah and I hope to be able to start using our motorhome again. If you are interested in looking at some of our journeys, take a look at my other blog here.
3 thoughts on “A Whole Bunch Of Numbers”
Those numbers are overwhelming John.
Fuel up the camper an and take off. Best wishes
Keep on keeping on. It’s a long journey, and there were times when Les felt like he’d had enough when he had ulcers from his mouth right through his digestive system due to graft vs host. The staff had never seen so many! Primary Myelofibrosis isn’t treated very often with a stem cell transplant. Anyway, fingers crossed that you and your wife get to use your motorhome. We have contemplated buying another one; we shall see.
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WOW thanks for breaking that down John. What a climb!