*Disclaimer; I’m not a medical professional or counselor. Opinions expressed in this blog are my own based on what I’ve found helps me. Always consult a professional first*
Well, I had an adventure of sorts this past weekend. An unexpected journey in many ways I guess you could say.
Those who know I’m an ex-pat New Zealander and who are fans of The Hobbit and LOTR movies will maybe get the joke there. If not, I need to get better at writing jokes! What’s a punchline again?)
So on Friday I was having a great day off between treatments and looking forward to a relaxing weekend with the intention of catching up with a friend who is visiting for a week from Kiwiland.
At 12 am or shortly after it dawned on me that it was now Saturday morning and given my current state of health it behooves one to get to bed before midnight and have a full night’s sleep especially when steroids tend to wake one frequently in the middle of the night.
I had been comfortably blogging away and facebooking for a few hours on my laptop and not realized I had any pain.
As soon as I got up I had pain in my lower left abdomen in what felt like my left ovary. At this point I need to mention out that yes I was on that wondrous time of the month which now starts on the first week of the first cycle of chemo each month. Slightly bad syncing there body, adding pain to side effects and hormone overload. Do not get me started on the PMS the week before! Well, I never do things by halves, do I?
Anyway, I went to the bathroom in preparation for bed but got one hell of a fright when my upper back and abdomen were in intense pain so much so that couldn’t use the bathroom let alone sit upright. The pain was a level 10.
I considered side effects from the chemo at this point as I recall similar pain when I was blocked up for lack of a better word (it’s embarrassing but common so if you are on chemo, do not underestimate the importance of prunes!!), also my old lower back injury and period pain although I was on day 4 so it shouldn’t be getting worse unless the low platelet anemia was back.
I had just stopped getting the flu-like symptoms from Zometa (see the previous post) and back pain is something I’ve dealt with since childhood. I kid you not! I have a very strong pain threshold, skipping pain relief for mind over matter, meditation, yoga, and acupuncture wherever possible.
I was raised this way and it’s better on my already damaged kidneys and liver not to mention avoiding animal-tested pain relief.
I was in agony so I had to take something though. I opted for two panadol rapid as I’ve been advised by specialist against anti-inflammatory pain relief such as ibuprofen due to the possible interactions with some of my chemo medications. Can’t say I find that fair as I now temporarily can’t take Naprogesic which is fantastic on period pain. Damn.
I did have pandeine forte with me but that has to be taken with Metamucil and I did not like the idea of adding more to the side effects besides in my experience pain this bad was going to need more help! I also checked my temperature as I was almost sweating and having hot flushes. Temp was within normal range.
Heated a wheatbag and tried that but the problem was if I tried to lie down my upper back was good but my lower back was painful. If I sat up the lower back was ok but the upper back was killing me. tried side on, rocking back and forth. I tried to go to the bathroom after taking prunes. Hey, I considered everything as you do when monitoring a million possible side effects and on period too! I was in tears to and from the bathroom, nausea kicked in, I couldn’t stand up straight or sit or lie down, I almost threw up. It was agony. I continued this process, surprised I didn’t wake my flatmate and her boyfriend up for almost two hours, finally giving up and calling the free 24-hour nurse helpline running through all my symptoms which now included upper chest pain and no the painkillers had not kicked in.
The nurse asked alot of specific questions and said she recommended I go to the hospital. Now at 2 am ish in the morning and before ordering an ambulance, I attempted to wake my flatmate who I know is a deep sleeper but would have been happy to drive me to RPA immediately. Nope she was asleep or I was too quiet. I should mention I had a sore throat and was very thirsty, had almost a litre of water in 2 hours and still so so thirsty. Ambulance ordered, arrived within 10 minutes. Two friendly helpful staff, more questions, morphine in the ambulance for the pain so I could lie down comfortably.
The benefits of ordering the ambulance is that you get to the emergency department faster, are with trained professionals and can get pain relief immediately and the best benefit, no waiting time in the ED room! So maybe just as well my flatmate was asleep! There is one disadvantage for me though. That would be the bill of $160-$200 which will arrive in the mail at some point. I don’t have private health cover, only medicare and there is no free ambulance here. It is somewhat worth the cost and if they don’t let me pay off the bill then I have some savings or can fundraise. Hahahaha. Honestly, it’s not so bad, I’ve never had to take an ambulance to hospital or morphine for that matter but in saying that I put up with alot of pain, sometimes chronic. I’ve been like that at work and gigs. I modify my social life to deal with physical pain and I used to medicate with alcohol and prior to that pain relief, it was an issue (a phase) in my 20’s … so Friday night I had to say to myself for god’s sake you are in severe pain in the middle of the night with no help so just accept the morphine. I just wanted to sleep at that point, I was so exhausted as you can imagine. Ambo’s noticed how dehydrated I was and had the saline at the ready.
Within a few minutes of arriving at Royal Prince Alfred Hospital Emergency Department (RPA) I was in a bed in acute and hooked up to an IV of saline, given more morphine and poked, prodded and asked questions by nurses. I was scared, alone and in shock. I know 2nd and subsequent cycles of chemo can cause more side effects but I was better during the day so this was too much for me.
More morphine and I attempted to sleep between messaging my friend in Melbourne with Multiple Myeloma who has insomnia due to steroids and also a friend who was in the same hospital after having a non cancerous but huge tumour removed earlier that week and couldn’t sleep. The nurses kept me entertained and I saw a Doctor, had an abdomen x ray. At this point, I dreamt of sleep. They had pumped alot of morphine into me weighed me and the fact that this was my first time having morphine so monitoring for possible allergies. I took it well. Sleep!
Finally at around 5 or 6 am I can’t remember when, I wanted sleep and had just started to dose off when a woman who I could only assume was a drug addict was admitted and screaming at the top of her lungs for about 30 minutes although it felt much longer than that! She sounded possessed and the nurses and doctors were telling her to shut up. They are used to it. I had a lovely chat with a nurse originally from New Zeland and a fellow patient also originally from New Zealand about crazy patient number #50 who was then moved to a free bed 3 beds away from me. Oh goodie my new friend! At this time, a close friend of mine who had seen my facebook status update earlier and was up uncharacteristically early on a Saturday morning had asked if I wanted a visitor and I said yes so she had been on her way during this time that I had a new ”buddy”.
Crazy #50 as she will forever be known, had stopped screaming before being moved to a bed but was now swearing going on about the police raiding her partner’s house, her not being crazy and swearing saying she didn’t want to be here and wanted to go look after her son. She was clearly pregnant and coming down off drugs. It was sad. I felt for her kid, and didn’t want her here but it’s acute and until you are discharged, you are stuck here. She paced alot, screaming and going mad and my friend was witness to alot of this. we exchanged the usual ”are you serious”, ”wish you would go”, ”shut up girl people want to sleep too and none of us want to be here either! geez” looks and talked in breathy voices to the nurses who have seen it all before and have a sense of humour.
They managed to eventually calm Crazy #50 down and she seemed accepting of her current predicament so peace was restored but I didn’t want to sleep as I was catching up with my friend who was fine with me sleeping, she insisted but I’m an entertainer and besides I missed her!
Saw another doctor few times and spoke with Mum and also my flatmate who apologized profusely for not being awake in the middle of the night but was happy to pick me up when I was discharged hopefully later in the day. all good.
In the end I had less than 1-hour sleep and no answer as to why I was in pain. the dehydration had given me severe cotton mouth and had 2 bags of saline and only helped a little. My throat was killing me.
I was given sachets of powder for constipation although I had not presented to the ED with this but just under haematologist orders (sigh) and a script for Endone which is morphine in tablet form, even stronger in some regards, and reluctantly discharged by the doctor who said if I did not improve or worsened please come back tomorrow or this evening. He was really lovely.
Went to a cafe and was grateful to grab a salad to eat with my mate who had made the last few hours more bearable and waiting for my flatmate to pick me up. Wasn’t too long until I was home again, and the morphine wearing off. I felt tired and cranky and needing to fill the Endone script. I read the script and it said hospital only and realized this after I got home so we came back to the hospital since my flatmate is awesome and we thought we read the script right.
Well turns out the pharmacy was closed and we could fill it anywhere but if any issues we would need to have the pharmacist phone the hospital to confirm with the prescribing doctor. I was now a little more than pissed off to put it mildly and we got home, I filled the script no issue at local pharmacy. Originally I thought I could fill anywhere, the only issue I had was when I read the script and in my seriously sleep deprived state I didn’t think to try to fill it, I just went home and said omg it’s hospital only pharmacy we have to go back to RPA to flatmate!. Arrgh. Lucky we live in Waterloo so very close to the hospital!
Took a couple of Endone, slept a few hours, ate a lovely dinner with flatmate and her boyfriend (mmm home made Japanese Curry!) another one Endone and slept most of the night. Vivid dreams man. Last time I had that was when I took a Valium when I was having a panic attack on weed years ago. Trippy.
Sunday was not so great, weak, lack of appetite, hot flushes, achy. My flatmate helped by making me a yummy fruit smoothie and checking I was comfortable in the much cooler lounge. I slept awhile and also a friend swung by with some fruit salad which I slowly ate during the day. He was good company when flatmate was out as I was scared I would need to go back to hospital. I don’t recall taking more than panadol rapid.
I was more tired than anything. I went back to sleep. I think I slept 90% of the day on Sunday! Must have needed it!.
Monday was hard in terms of getting up, and I needed to do a load of washing! I had a shortage of clean clothes and I’m practical plus I have no maid! A hot shower and attempt at eating 2% of my breakfast helped some. I couldn’t sleep due to the noise from the attached crèche and it was steroid day so that woke me up.
I had a GP catch up in the morning and a friend had offered a lift but hadn’t confirmed so bus into the city it was but it was fine in terms of getting a seat and getting to the city promptly. I was very concerned as the upper back and chest pain was bad again and I was slightly hunched over in an effort to be comfortable.
Had a couple errands to run, rent was due and GP was on time and very helpful suggesting chest and back x ray to be arranged in maybe two weeks or so. He said I should see him more often and that I can complain more, I’m a good patient handling a tough diagnosis well. I’m impressed with how he has been since December, better than usual. In the past with the MGUS he was dismissive as he didn’t understand it and I was left undiagnosed with the progressed cancerous version for a couple of years due to my GP’s lack of knowledge on the subject. Well it is a rare bone cancer but still.
But I digress, back to Monday, after GP, my friend txt saying his phone was on silent, never heard the earlier txts and promptly came into the city.
I chilled for ten at a cafe next store and was relieved I didn’t have to bus back as still in poor form. Thank god for good friends huh?
Treatment day. First blood tests and then I spoke with Myeloma Nurse, ran through my symptoms and hospital visit, and she made an arrangement for the doc to review me at treatment time.
Usual delay of an hour and a half but I had great company and my OB’s were good, quick review and the doctor actually picked up on something that ED Doc’s are too busy to notice or look for. That’s right, side effects but you won’t guess what from, no not the new drug but possibly the steroids! Yipee! Note the sarcasm. It could be gastro problems from the sheer dose I’m on but apparently, it’s a common side effect along with sleep disturbances, weight gain, and many other side effects. The joys of steroids.
I have prescribed a medicine called Somac for gastro upsets and told they would not do a chest or back scan until my 3rd cycle of treatment due to the radiation. I had my treatment, took the new medication for the side effect and my lovely flatmate got me some complimentary Hydrolyte tablets through a pharmacist friend to dissolve in water for the dehydration which I still had.
Finally some relief and a decent sleep bar the two hours from 3-5 am ish that I woke up which is standard on steroids. Geez.
This morning I felt human, had support groups and therapy and apart from a little annoying upper back pain which I’m monitoring I do feel good. Did get a hell of a fright though several hours after a quick manicure where I took off my expensive rings my Mother got me (which I never take off) when I realized I did not have my rings on my fingers and I did not get them back as they were on the table at the beauticians! The girl never handed them back, we both forgot but surely they could have called! It was midnight when I realized so I’ll pop in when they open. I’ve never lost expensive sentimental jewellery before now so they go on the fingers and stay on ! I’m sure the girls put them in safe keeping and didn’t ”nick off with them” hahaa. They are nice, I’m a regular, I’m just suffering from chemo brain plus I was born blonde. You can’t change that easily.
So healthy ish again for now. Seriously why so many ish’s in this post. I must get some sleep as I’m catching up with my mate over from New Zealand tomorrow the day before she flys out and I will try to sleep without nightmares of my rings (precious, they took my precious! omg more LOTR references but this time yeah it makes more sense huh?) sold on the black market to keep the local beautician in business…preccccciouuuuuuuusssssssssssssssssssssssss!