Monday 22nd April 2019
“You can’t cross the sea merely by standing and staring at the water” — Rabindranath Tagore
So we’re just over 6 weeks past now, and it’s safe to say I’m back to normal bar a few lingering issues. I’ve had some tests done too, and it looks like the chemo has affected me but nothing too drastic, although I won’t get the proper results until early May. There are a few things of note to talk about.
Starting with day to day though. My main issue is that my fingers still hurt when I do things like opening a can of coke, tightening a screw with my fingers etc. This is now routinely a pain in the behind, and I often ask Jayne to do things. This seemed to be going away then it came back. I’m wondering if the more I try to do, the more it comes back and hurts. This is one I’ll have to discuss with the Dr when I go back in May. I really hope it goes away.
Hair ! It’s coming back a bit quicker, I still have baby hair across my head but my whole beard growing region, which also started out as baby hair, is pretty much back now. I look “normal” with a baseball cap on. Hopefully it won’t be long before the head hair takes hold too. I feel better now just having a “shadow” of hair and not a shining reflective beacon of a head. It’s been sunny the last few days so I’ve been in a cap to make sure I don’t burn it and end up with a red flashing beacon of a head.
I went for my hearing test last week too. Basically you sit on a chair in a soundproof room, and put some headphones on that do well to block out sound. They play you sounds at varying pitches, some very high pitched and some quite deep. Each sound firstly comes on quite loudly, then another 3 times getting quieter each time. You press a button when you hear it each time. Pre-Chemo, I’m pretty sure I aced it and got every sound.
This time, straight away by sitting in silence, I noticed I have a constant high pitched beeping in my ears. I hadn’t noticed this before. I started well, hearing the deeper noises, but some of the high pitched sounds almost matched the frequency of the constant beeping I can hear, thus when this sound got quieter, I couldn’t hear it. The lady did say she saw me struggling on some, but that I got all of the sounds that are aligned with the frequencies of human voices. Day to day it doesn’t seem to effect me, and the pre-chemo info does say your hearing of high pitched frequencies may be affected. It would seem mine has been. Again like the lung test, the Dr will give me the proper results next week.
I talked about the lung function test last time, since going for the test and hearing there may have been slight deterioration I haven’t noticed anything different whilst exercising. My heart rate is back down to a normal rate when on the bike.
Talking about the bike, I had mentioned a 41 miler I did a few weeks back and I had been commuting to work and back since then, getting a little faster each week and seeing my heart rate drop down further signalling continued improvement. This Easter weekend was gorgeous sunshine, so I wanted to get out early one morning and do a few hours riding. I decided (maybe foolishly) that I’d try a 100 miler. No other reason than I really wanted “it”, with “it” being that sense of being like I was before. I had given myself until September to be that fit again, with the 100 mile (hilly) sportive I signed up to as a comeback ride. I didn’t expect to be doing it within 6 weeks, but it felt within reach, so why not try and grab it.
I planned my route, incidentally pretty much the same ride I did on 28th April last year. Pretty flat, no real hills, 50 miles up to Lytham St Annes, and 50 miles home again. I set off at 5.05am on Easter Saturday, and off I went. Around 31 miles in, around Chorley, I could feel my legs tiring a little and honestly considered turning back and just doing a 100km ride (62 miles,) which would still have been 50% further than my longest ride this year. The problem with an “out and back” route, is that you are always getting further away from your start point, so if you bonk, you’ve still gotta get home (or get the train.) But no, sod it I thought, I’d got up early to do it and got it in my head I’d do it, I’d just manage my legs well and be sensible with no big efforts. Mind over matter.
It worked ! I stopped at 56 miles for a sandwich, milkshake, mint Magnum ice cream, and to fill my water bottles, then pedalled home fuelled with some spearmint Polo’s. From about 78 miles, my legs had nearly had enough and it gave me a mental wobble. I stopped for 10 minutes, got going again, and from 90 miles onwards the expectation of and desire for success carried me home. 5 hours 55 minutes of riding, 100.45 miles. Take that Cancer and Chemo and everything else ! It felt bloody fabulous when the screen ticked over to 100 miles, that was one major fist pump I let out…
I should probably run though. It’s 4 weeks until the Manchester 10km and I still haven’t run a mile without stopping. I must run more the next few weeks, but it remains a struggle. Whatever happens, I’ll get to the end of that thing, I just want to know I gave it my best shot. I’m really looking forward to it. I’ll know my results by then, and something tells me that either way, getting to that finish line on the day is going to be an emotional achievement.
On Thursday evening at 6pm it’s the big one, I have my CT scan. I haven’t been to The Christie for a good few weeks now, but it’s time to go back. I know the routine now. Arrive at 6pm, spend an hour sitting drinking an awful tasting drink to make my insides glow up for their pictures. Then normally, put a gown on, have a cannula put in, and wait my turn. They pump Iodine into your blood through the cannula as you are going through the CT machine. The whole process has over an hours preparation with the drinks etc, then only takes about 2 minutes in the machine.
Now last time, they pumped the Iodine into my cannula to make my insides glow, and then held me back for 15 minutes to make sure I hadn’t had a reaction (as is standard for everyone.) They leave the cannula in so that if you have a reaction, they can give you medication intravenously. I didn’t, so they took out the cannula and I went to get dressed. Then I noticed in the mirror my back and chest were covered in itchy lumps and I’d not noticed them. I had one of those moments; do I a) Just leave so I can beat the traffic (it was getting towards 5pm), or b) Tell them just in case it’s serious. I chose b) and they had to put another cannula in to give me some anti histamines. I waited half an hour and the lumps had pretty much gone, so they let me go home. The important part though was that they know now that I react to Iodine.
I’m a little worried that if they can’t pump me full of Iodine this time, then the scan won’t be as effective and it might not work / they might miss something etc. I told my Dr weeks ago, and he said not to worry as they’d probably use something else instead. I’ll mention it as soon as I get there and see what they decide. That’s been bothering me for a while but I’m sure I’m not the first to react to the Iodine.
Either way I trust them, and then it’s just a countdown until the big big day on the 3rd May, results day. Still hoping for that “all clear” but not worrying about anything until there’s something to worry about.
I still really want to raise £4,000 for The Christie too, and this week an anonymous donor gave me a phenomenal donation, which ticked me over to the half way mark on £2,000.01p. I’m doing the Manchester 10km in May, the 100 mile hilly sportive in September, and I’ll have to get creative about some other things too rather than just asking for sponsorship. So many have donated already, thanks again for that !
Donations are welcome here. If you work somewhere where they do dress down donations, or similar and you get to suggest a charity, then please think about my page… #TeamChemoPhil https://www.justgiving.com/fundraising/chemophil
11 days until results day…
Phil's BEP Chemo Journey 