85. Unexpected CT scan

The thought that the zoledronic acid infusion was a it better than the first one was probably a bit premature. I gradually went downhill through Thursday and Friday. Fatigue, bone aches and pains, muscle aches and pain, headache, stiff and sore fingers with less strength.  They were all the expected side effects and they were less than the first infusion. What I wasn’t prepared for was how my GI tract was affected. My diarrhoea took itself to another level entirely and by the Sunday I was getting cramps in my feet and hands and Monday the gastro stop tablets weren’t doing their thing. By the time I got to tablet 6 (8 allowed in 24hrs) I was seriously considering the hospital because I was getting dehydrated a lot. I went to the pharmacy and got some hydralyte tablets that you dissolve in water and on the pharmacists advise sipped a litre of this concoction in an hour. She said if I was still having diarrhoea and the tablets weren’t working by the 8th to go to emergency.  Thankfully the tablets started to work and I was able to keep fluids down. I started to feel slowly better. I kept up with the hydralyte for the next couple of weeks by having 200ml in the morning and evening. That definitely helped. 

The weekend of the 18th and 19th May my choir performed at the Blacktown Medieval Fayre. We sounded good and it was very fun. Many many people were there and more than 90% were in costume. Even the dogs. The Sunday I really wasn’t doing too well and even though I didn’t need an emergency run to the toilet (port-a-loos conveniently located just a few metres stage left) I got a bad cramp in my foot halfway through and then the 2nd last song my right thumb cramped up. It really wasn’t nice as I was playing the recorder at the time.  I always enjoy our time together as a choir and on July 9th we are doing a free mini concert for an older people’s social club at Bundeena. 

I saw Brent the exercise physiologist and he read the details on the sozo scan that Renee at Restore had printed out for me. It had 5 readings for 10 months and he said it was a really great thing to have and it gives him a good background. He started looking through all the graphs and numbers. “Well hydrated, that’s good that (whatever it was - most of it I had not idea about) that is going down, and that’s going up, BMI is always bullshit and you would always be in the obese score cos you have a very high muscle mass to fat free mass. You have lost muscle mass but the last month or so that has plateaued so your personal trainer is doing a good job. Your score is still considered in the “normal range” for women but I don’t go by the constraints of gender. If you were up here before I can get you back there and better.”  

So, skip forward a bit. I was writing this whilst waiting for the OT this morning to measure my arm and then I had my oncologist appointment. My OT was happy, Sozo machine says -1 for my score which is further into the green than the -0.9 it was in May when Renee took a reading. She also got the tape measure and measured my right arm from hand up to top of bicep. I have lost quite a bit off my arm, 9.6 cms circumstances since 8th Dec last year. She was very happy with how things are going and she’ll see me in Dec of this year again.  

I had about a half hour wait before my oncologist. I did some hexagon sewing this time. I saw the nurse first and she had a run down on how things are going. There was a medical student in the room too.  My blood test came back perfect. “We don’t often say that but everything looks great, neutrophils slightly lower than 2 months ago but still well ok”. I mentioned my collarbone that has popped out and aches and makes sleeping on my left side uncomfortable  she said she’d see if Dr Julia wanted to do any imaging. I told her about the crazy diarrhoea but how I handled it and she says good job.  Dr Julia came in and had a feel on my collarbone. “I feel a lump” (she said the L word!!!!) and she got that “look”.  Other people I know who have cancer all know that look.  Not really something to describe but it’s like a blank look but you can tell their brains are firing at a higher rate.   She said “I’d like an ultrasound, no, a CT scan would be better”. So the nurse wrote the script and said I could book in at the hospital (it’s upstairs) and made an appointment for 2 weeks to see Dr Julia again. 

I walked up the stairs and down the long corridor to the medical imaging section. I asked if I could book in sometime. I then said “is there anything today?”  The lady looked at the computer and said “there is one at 2pm but I’ll have to check and see if you need contrast. Oh wait, have you had a blood test recently”. Yep, yesterday and my oncologist said it was perfect. “Oh good” she said. She came back and said I could have the 2pm appointment and be back at 1pm for the contrast dye. It was 11.45am so I have gone to have some lunch and then will head back. 

There is a thing for people living with cancer called ‘scanxiety’. Anxious when you have scans and the wait for the results. It also can happen whilst waiting the days before the scan. I’m sure that for other chronic illnesses people can get the same thing. So I’m very glad that there was a spot for a CT scan today. It being Friday and a long weekend I probably would’ve had to wait until next week sometime. I still have to wait for the results but the good thing about bad news is that you get a call before your scheduled appointment so you don’t have to wait. No news is good news in this instance. 

I went to the cafe just down the corridor and had some roasted chicken and steamed vegetables for lunch. I’m trying to be mindful of how I am feeling. I can tell my jaw has gotten really tight again and I’m having a bit of an adrenaline hit. Stress response of another scan, another cannula, more waiting, the not knowing. The roller coaster of cancer. Even though you can mentally strategise the reasoning behind the emotions the body takes over. PTSD responses to ongoing stressors and triggers.

It’s an unconscious thing, the body going haywire. It’s what Brent had been saying when I saw him. After he looked at the sozo results and had a bit of a chat about my history he said he isn’t a psychiatrist so he can’t diagnose PTSD but many people with cancer live with it and he is sure that’s why I’ve been having a hard time. Adrenaline overload.  My body is so used to having adrenaline and cortisol expressed because of all the physical, mental and emotional stress that it’s used to high levels so keeps making it cos it’s now normal to be flooded with them. They are good to have when you are being chased by a lion but not for 18 months every day, all day. Got to retrain the brain. The limbo system has gone into overdrive!!!  

I’m finishing this off at home now.  The CT scan went fine.  The cannula went into my left hand as the nurse said the vein on my elbow felt a bit hard.  I said it had a cannula in it 3 weeks ago and a blood test yesterday. She was good cos I barely felt a thing with the cannula going in.  I had to sit around for about half an hour or so but there was a lady next to me (the same one that was there when I was having my infusion a few weeks ago) so we chatted.  She’d forgotten to refill her anti nausea tablets in her bag and was worried she was going to throw up in her scan.  I had some in my bag (sometimes I feel like I’m a walking pharmacy and snack bar with all I carry around) and it turned out they were the same ones she took so I gave her one.  I cut out some more hexagon templates as I’d run out in the morning while we chatted.  A bit awkward cutting with the cannula in but probably it was easier using scissors than it would’ve been sewing.  

The CT scan was over my chest, clavicle (that’s what medical people call the collarbone) and up my neck and head.  I had to take my earrings out.  I lay on my back and had my hands up over my head for the first part.  They took a couple of scans without the contrast dye and then a couple more with.  The hot feeling through my chest and arms and then the “GOTTA PEE” feeling.  The nurse quickly unhooked the tube into the cannula and told me to put my arms by my sides and then a few more runs through the machine for more pictures.  I had to hold my breath each time but the machine tells me when to breath and when to hold it.  The nurse flushed the cannula at the end.  After the scan was over I went out to the waiting room to sit for 15 minutes to make sure there was no side effects.  After about 10 mins the nurse came around and asked me if it had been 15 minutes yet and I said probably 10.  She asked if I’d had the contrast dye before and if yes any effects.  I said yes and no.  “How many times have I had the dye?”  I count back and this was my 5th time.  “Oh you should be fine then, I’ll take the cannula out for you”.  

I drove home, thankfully the rain had cleared up as it was very very heavy when I was waiting for my oncologist appointment.  I stopped and got some fruit and a few other small grocery items on the way home.  It was about 3.15pm when I got home and I realised that it was almost 3 hours since I’d eaten anything so I had a snack.  I got a wave of exhaustion come over me and I had to go and lie down.  I started reading a book but I couldn’t really concentrate well on it.  I put on YouTube to watch some sewing videos but I must’ve fallen asleep as I was woken up by my tablet alarm at 6.30pm.  

I got up and had some dinner and then a friend who I have met through the cancer community called me to ask how I was.  People who have gone through the same thing really can help to chat and debrief about things.  She has a medical background so said that if I didn’t get a call this afternoon and they didn’t tell me to wait until the doctor had seen the scans then there probably wasn’t anything major found.  Not that that is a given but it’s more likely that is the reason.  After talking for about half an hour I felt calmer even though I didn’t know I was still amped up.  I’m hoping I’ll sleep ok tonight, seeing as part of the reason I haven’t been sleeping well recently is the aching of the clavicle. Now I might be ok as I know I’ve done all I can at the moment to investigate it and I’ve told my medical team.  The waiting is still there but it’s less weighted.  

I had planned on other things for this post but they can be in the next one.  Living with cancer can upend your life instantly at any time and I have started to be able to live a bit better with those ups and downs.  I don’t want to say that it has become the new normal as it is ever changing and what is normal anyway!  I know who my support people are, I know what I can and can’t do and when it’s appropriate to push a bit more or rest a bit more.  I still get surprised either for how much I can actually achieve or by how tired I suddenly get and I can’t do what I was expecting.  I had a friend visiting from interstate for the last two weeks and we did some beautiful bush walks and a number of other things.  I did a lot more than I thought I could.  I was really happy to have them visit but also happy when they had to go home as I was exhausted, in a good way.  On the Sunday they left I stayed in bed most of the day reading and on the Monday I took it very easy too.  Being kind to yourself can be harder than you think.  It’s actually quite a lot of work but practice makes perfect right?