It’s:-
· 189 days since first ultrasound
· 117 days since inguinal nodes lump was apparent
· 50 days since my Dr started the process, I.e. the day I first raised it with him.
· 43 days since bone marrow biopsy.
· 28 days since my diagnosis, Mantle Cell Lymphoma
· 22 days since 1st Chemo - R maxi CHOP.
· 2 days since my Bard Power Line was fitted.
This is the first post that’s kind of live. These words are typed while I’m in the Centre for Shite Hair. otherwise known as the North Sydney Cancer Centre.
I’m in my bay having anti- spew drugs via IV In prep for the Ju-ju that I’m about to receive. In fact, it’s literally just been brought to my bay.
I can’t believe I actually snarled at it; the nurse laughed. That familiar feeling that, ‘that shite’s going to make me feel bad’ descends and I’m now a bit anxious.
The day started with a wee flurry. Actually, it didn’t. it started with me being on time for an 08:30 appointment and not being ‘taken’ until 09:25, FFS I’m kind of in a fucking hurry to get stuff back on track here, let’s get a jildy on!
So, a Nurse starts to read a manual. And read it audibly. I’m watching and, to be quite honest, a bit crotchety. I’m thinking to myself, ’a manual, fucking manual, surely not. FFS, what’s going on? Surely, she doesn’t need a fucking manual?’ To be fair, my protocol is more complicated than I’ve been able to get my head around; and that’s after having read about it at least 17 times per day since diagnosis.
Then there is a strange ½ hour that goes like this…
ah, you also need a dressing change?
no, was told yesterday this dressing is on for a week
oh, looks infected
what?
looks infected.
how could it be, it only went in on Monday and I'm on more antibiotics than anyone can imagine.
we need the Dr to review it.
awwww, ffs!
Dr comes and asked for the dressing to be removed to she can look.
A wee bit 'heeing and hawing' and it’s agreed it’s bruised not infected. Told the nurse to re-dress it and off we go.
I am CERTAIN it’s a scam to make you alarmed that, after the days of mental prep that, if it’s delayed, one will be disappointed. So that, you actually are appreciative of being hooked up to the bad ju-ju.
I'm still undecided if it is bad or good ju-ju. bad because makes me feel shite or good because it makes me better in the long run? One of a Cancer fighter's big conundrums.
The day is uneventful really, boring as all buggery really.
I'm hooked up to a drug called Rituximab. It's been infusing for about 4hrs, slowly at first them ramped up in ½- hour intervals to a 350ml/h rate. Actually, as I type, It's done, I have a warning that I have an upstream occlusion, and I immediately work out that the bag is all empty. See the engineer in me worked that out, clever huh?
I get 'flushed' and then I get connected to a 'pump'. I'm instructed on its use. It will pump Cytarabine for 3 hours tonight and for 3 hrs in the morning. I express concern about more shit being connected to me and get scathing looks from Nurses; 'you’ll be fine'.
Off I choof into the rain, taxi home. Soup and a sandwich for dinner, fresh fruit, drink and off to bed after TV.
Back to the hospital tomorrow for another treatment in the afternoon.
Brilliant, fucking brilliant.