86. "The Phone Call"

At 4.18pm today my phone rang and it said ‘No Caller ID’.  I knew that meant the hospital.  Remember what I said that the good thing about bad news is that your doctor calls you quicker?  Yeah, that CT scan I had on Friday came back showing some thickening of the bone in the clavicle and a few other things my doctors didn’t like.  Next step is a PET scan ‘semi urgently’ is what the nurse said on the call.  She had a bit of a pause and then said “Mainly so we can have the results back before your appointment on the 21st”.  Riiiiiiiiiight.  She was writing the referral through to St George Hospital imagining department and they will call me with an appointment time.  I’m guessing they will call tomorrow morning sometime because of the semi urgent nature of the scan.  I’ve had a PET scan before so I am well prepared for what goes on.  The good thing is I don’t have a drain tube and bag hanging out of my side this time around so it won’t be so super uncomfortable having my arms up over my head for 45 minutes.  I asked the nurse what would happen if more of the undesirables show up and she said probably would be a bone biopsy.  That doesn’t sound pleasant at all.  

Yesterday I had my second appointment with the exercise physiologist, Brent.  He was really happy that I had the CT scan cos he said no matter if nothing shows up, a fracture shows up or the big bad is found again he would treat my pain the same.  That being lying on my back on the long foam roller down my spine, dropping my elbows down (stabilising on a pillow if on the full round roller) with my hands pointed to the ceiling, palms facing each other.  Using a yellow theraband drop my hands out to the side and back.  He’d gotten me to put my left hand on my right shoulder and then lift my elbow up toward the ceiling when I was sitting in the chair.  It was painful to put my hand on my shoulder and also to lift it, it hurt in my left shoulder.  I also have had an increasingly sore area on my lower shin near my ankle.  Yesterday a darker red spot appeared.  I’d taken photos each day. He said that was a good idea and drew a circle right at the edge of the darker red.  He said to keep an eye on it.  Probably my immune system gone wild from a tiny little injury or scrape.  Basically the cancer and treatments can put people into what is essentially an autoimmune disease state and instead of going into healing mode like normal is can go into HEALING MODE X2000 which means all sorts of crap.  So I’ll keep an eye on it and if it gets worse or other signs of a blood clot I’ll of course let my care team know.  I’ll see him again on the 24th.  

So funny thing about that red spot.  Today at my exercise class I put one of the bands around my ankles to do Monster Walks.  First step forward on the left OUCH!!!! Right where that spot is.  Hmmm, I did Monster Walks last Wednesday.  Perhaps this is a very plausible explanation to the offending soreness and red mark.  I’ll still keep documenting it and watching what it does as body going into HEALING MODE X2000 could make it do anything stupid.  (Insert screaming goat video here - if you know you know).  

I have sort of gone a bit out of whack with the timeline and keeping track of what I have written for my blog but I’m pretty sure I didn’t mentioned the MASSIVE large avocado sized bruise I got from the Zoladex #12 injection a couple of weeks ago.  It bled a little bit and then stopped and the GP put one of those little round bandaids on the hole.  I got off the bed/couch thing and sat back on the chair to make my next appointment. When I got up to go I thought “why am I am wet on my right arm?” And then looked down and said out loud “Oh crap, I’m bleeding all over the place”.  And yes, through 3 layers of clothes (undies, shorts, top) and down my leg, onto my foot and even drops on the floor.  The GP grabs a bunch of dressing pads and whacks it onto the offending hole and then I hold it there for a good 3 or 4 minutes while the GP goes around cleaning up all the blood splatters everywhere.  She is extremely apologetic about my clothes.  I wasn’t worried about the bottom half but the top was my nice new purple and gold top I had made about a month ago.  No need to worry as they were soaked as soon as I got home and the blood came out.  Before I’d left the doctors office I was already getting a bruise and yeah, that thing got BIG!.  It didn’t hurt and it didn’t get hard, but now 2 weeks later it is itchy….inside!  So not nice.  It’s gone through all the fun colours that bruises do and is now a sort of dull mustard with brown/maroon splotches.  

One of the things we did talk about was to see if melatonin would help me sleep. She made a script for a 2mg tablet and said to see how I went and if I felt like I needed a bit more oomph them to take 2 tablets about an hour before going to bed.  Not to go higher than that without talking with her about it.  I tried it out and actually did get quite a decent sleep that night. YAY.  The second night BAD diarrhoea, not yay.  The third night I realised I was feeling a bit iffy in the tummy, 4th and 5th nights I was nauseous for a few hours after taking it and also was getting headaches.  So I stopped taking it and yeah, those can be side effects and when I didn’t take them the nausea and headaches went away.  I figured I slept so well the first night not because of the melatonin but because I’d had an hour and a half massage that day.  I didn’t really want to add more tablets to what I take so I’m a bit glad they didn’t work.  But it would be nice to have some good sleep a bit more consistently than a few times a year.  

Talking about tablets.  Abemaciclib has gone onto the PBS, Pharmaceutical Benefits Scheme here in Australia.  That means I don’t get them sent to me in the post for free and I need a script.  It’s specialised so only my oncologist can write it.  I was going to run out two days before my appointment last week so contacted the breast nurse and she organised the script for me.  I went to the chemist and the box has to be ordered in, comes the next day. I knew it was expensive but it is full cost of $4,249.98 for 4 weeks.  I pay $7.70 for the box so thank goodness for a really good health system!!!  I am a bit sorry to know that the chemist has to fork out the full cost and then it takes weeks for Medicare to pay them back the difference.  Sorry guys!!    I know someone in Florida was saying their co-pay for the medication is over $500 a month.  Eeeeeekkkkk!  

This afternoon I had a really nice time fondling fabrics.  There was a purpose behind said fondling.  I get fabric scraps from off cuts from projects people do at the local sewing shop.  I had been putting them into a BIG, no HUUUGE, box under my desk for a few months and decided instead of digging through it all the time to find something I would put them into colours.  This I did and there was a surprising amount that were in strips.  Well, fabric twine bowls here you come!  I am really excited about what some of them will look like.  I’ll get some portable projects organised so that I have stuff I can do when I am waiting for appointments.  Though the PET scan you have to basically just breathe and do nothing when you are waiting the first hour and drinking the sweet stuff and the injecting of the tracer dye.  Cos if you move a lot it’ll just settle in your muscles and you’ll look like you have become riddled with cancer and inflammation.  Maybe I’ll be able to nap!  Hmm, sleep, yes I am quite tired. I think I’ll get into bed and watch the Wonky Wednesday video that K3nclothtales will have uploaded for tonight. I wonder what she has done this week.  (oh look, here is the link https://youtu.be/dcKbzDtGDx0?si=pLvxs4DjePgqEna5)

Oh, guess I’l better wade through all the boxes of coloured fabric that is strewn all over my room and then clear off my bed from more piles of fabrics before I can relax a bit and then I WILL have a good nights sleep.  Positive thinking goes a long way right?