Friday 29th was a bitch of a day. No joke, I felt the sickness.
One of the requirements of cancer treatment is the need to drink lots of water. I have been vigilant in making sure that I consume at least 3 litres of water each day. This is not an easy feat when everything liquid other than chocolate milk tastes salty but I persevere because I want a speedy recovery post treatment.
Now for every litre that you drink, I am sure that you urinate 1.1 litres because I feel I am always standing in front of the dunny draining my bladder.
Friday morning was no different - except - it happened way too frickin early. I have no real idea what time I was woken with that pressing need to go an pee. As soon as I got out of bed and opened my mouth the PAIN (note the capitals) hit. OMFG it was like someone had tipped hot molten steel in my mouth. The ulcers must have stuck to the side of my tongue and as they came apart it really was searing pain.
Now I am supplied with pain relief - soluble panadol, and it normally does the trick. The effervescence goes directly to the open ulcer sites and although it hurts like shit at the time, the relief is almost immediate. The first mouthful really starts to take the pain away and by the end of the 250ml I am usually cool for the next 4 - 5 hours.
The pain did subside (which was a great relief) but by this point I was wide awake. There was no return to sleep. I tried, but could not. I spent the next wee hours of the morning trying in vain to doze and feeling ever so slowly my joints starting to ache.
It seemed like there was nothing I could do to stretch out and relax enough to fall asleep. I paced around, lay on the floor, curled up, everything I could think of without any success or relief.
I tried to distract myself from the increasing discomfort of the aches in my joints by working, but that was such a waste of effort. Each email possibly took me two to three times longer to draft than normally would and I was becoming increasingly concerned that I was gonna be in for a bad day.
Pain relief with panadol can only be provided 4 times per day (in order to safeguard your kidneys apparently) and so I find that it is a matter of timing. Take away 6 hours of sleep and you have 18 hours left against which you manage your pain relief. Now it is important that the last pain relief if taken just before you go to bed otherwise it is a bit hard to get to sleep.
My dilemma was how to juggle two more doses of pain relief between 10:00 am and 9:00pm (which also included a trip to Peter Mac for RT treatment at 7:00pm. Now I can tell you that in hindsight I got it way wrong. When the pain started to come back at 9:00am (some 6+ hours later) I decided to dig deep and endure. BIG MISTAKE. The pain in my mouth, combined with the aches and general fatigue just started to spiral, making me feel really dreadful. I mean REALLY dreadful.
At 11:30am I realised that I needed to think carefully about how to manage this. I needed to make sure that my chosen course of action would provide me with the greatest length of relief. A hot shower and half of my panadol dose and THANKFULLY, 2 hours of deep sleep came shortly after midday and lasted until nearly 2:30pm. When I woke I was far better and was extremely relieved that I now had a way to get through the rest of the day.
I was happy to know that this day would bring me dose 20 of 35. 15 more to go. Three short weeks. My journey was well past half way and this keeps me focused.
The drive to treatment takes an hour each way. Allow 45 minutes for treatment and the round trip is just under three hours. It is amazing how quickly you can go from feeling fine, to feeling knackered but by the time we get home I am totally buggered again.
BUT THIS IS WHERE IT GETS GREAT - I climb in to bed, take my last panadol dose for the day and sleep deeply and soundly from 9:15pm to 7:30am this morning. It is now 1:35pm. I have had no pain relief at all today and feel fantastic. Yes the throat and mouth are not without some discomfort (about 2/10) but I am comfortably positioned before the TV nice and relaxed watching a refresher on GOT (Game of Thrones) so that I can watch the current episodes and be up to date tomorrow.
I have learnt that listening to my body is a great way to manage how you feel on this journey, and despite the nurses telling me to ask for stronger pain relief next week (which I will do) I am happy that I have the ability to exercise some control over how I will handle the pain of my challenge. I am not stupid enough to believe for one minute that I will get through the entire journey without some additional help, but it feels good to be able to make my decisions, for me.
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