Thursday 25th April 2019
“All I can control is myself and just keep having a positive attitude” —  Rose Namajunas

I only started blogging when my chemo started, so I never recorded on here what the 1st CT Scan was like back in Nov/Dec last year. In my last post, I mentioned a few details and how I had an allergic reaction to the Iodine they pumped in me.

Today I had my appointment at 6pm, and it’s a 2 hour affair so I considered it would take up most of my evening. I left work a little early so I could grab a bite to eat before braving the rush hour traffic across Greater Manchester to get to The Christie. My leaving work early coincided with one heck of a thunderstorm, which was all the more enjoyable as I was commuting on my bike. I left work almost in sunshine, but half way home it got dark, then it rained, then it poured, then it got very cold, and then it decided to hail stone some little bullets of ice onto my freezing arms and legs. Hey ho. I needed a quick shower anyway. Yesterday I missed a similar storm by about 2 minutes, but you can’t win them all.

I got there about 5.40pm and checked in, then got seen within 5 minutes. You have to fill in a questionnaire in advance, question 2 is “Are you allergic to Iodine,” which I found out last time that I am. I wondered how this time would differ from the last one. One brilliant consequence of being allergic to the Iodine meant I didn’t need a cannula putting in because they wouldn’t be injecting me with anything as part of the scan. Just the awful drink before hand. I really don’t miss being cannulated !

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Firstly I got a different type of drink that didn’t contain Iodine. Last time it didn’t taste too bad as it had blackcurrant flavouring in to mask the nastiness. This time with the alternative drink, no flavouring was available. It was quite thick like a milkshake and had a slight immediate aniseed taste, followed by an aftertaste of what I imagine dirty dishwater would taste like. It’s 2 cups straight away, then another cup every 15 minutes. You get called after about an hour to go for the scan, when the drink has made it around your body and you’ve drunk the lot.

I’d planned ahead, and here’s my top tip. I bought a mint aero and had a block of it after every cup to quickly get rid of the yucky after taste. I got some jealous looks from others sat with their bottles and yucky drinks ! The last cup was the worst because it was a bit thicker at the bottom and I’d eaten all of my aero. But at least it was the last one.

Then you get called for your scan. I should have thought ahead and wore a pair of joggers, rather than the chino’s I wore. If clothing has any metal on it (zip etc) you have to take them off and wear a hospital gown. It’s a bit weird being in a gown with your t-shirt on, and trainers/socks and underwear. I would have gotten away with it if it wasn’t for those pesky chino’s (and I’d worn joggers instead.) Then you sit in a tiny waiting area to be called for the scan, realising how you might look in a skirt whilst trying to maintain a little dignity.

It was only a few minutes before I got called in, so I wandered over in my blue dress. You get straight into the CT machine, and it’s over in a few minutes. You have to hold your breath and hold completely still while you are moving through the machine and it is scanning you. Apparently I went through a bit slower today because of not having the Iodine going through my body, but that means more radiation exposure each time. I will no doubt have numerous CT Scan’s going forward, I guess I should ask whether it’s a bit too much radiation and if there’s any safer alternatives. I’d hate to get cancer as a result of being treated for cancer.

All done for about 6.50pm, which was half the time I was there last time. Another bonus of having the allergy to Iodine, no cannula removal or the 15 minute wait to see if you react to the Iodine. All in all a good efficient trip, and home in time to see the kids before bedtime. Having drunk a lot again, the number of toilet trips was reminiscent of being on the 3 days of chemo, just without having to take my wheeled friend Bob along with me each time. I’m pretty sure I’ll be up a few more times in the night.

That’s the last test now, it’s just a wait until next Friday to see the Dr and hear the results. So that’s the overall cancer (has it been defeated?), my hearing test results, and my lung test results. I’m genuinely not worrying about it. What is there to worry about? It’s either worked or it hasn’t and I can’t control anything between now and then, other than to keep positive as usual and continue to move on from it all. If I don’t get the outcome I wanted, then we’ll readjust and tackle whatever comes up.

I’ve booked the Friday morning off work too, so I can do something enjoyable (read: bike ride) in the morning so I’m chilled out before I go in. Treat it like somewhat of a “normal” day. I’ve had a bottle of champagne in the fridge since Xmas, which has been sat waiting for the sole purpose of celebrating the “All Clear” whenever that may be. I’m hoping to drink it next Friday…

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.

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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…

Tuesday 9th April 2019
“I didn’t get there by wishing for it or hoping for it, but by working for it” —  Estee Lauder

It’s been a couple of weeks since I last blogged, mainly because I haven’t really had much to blog about still. But I guess those following for a taste of how recovery from BEP goes, it’s still important to talk about how uneventful things are.

I’ve been back at work now since a few days after chemo finished, back to working normal hours and commuting the 15 mile round trip to the office on my bicycle the 3 days a week I go in, the other 2 days working from home. Routine is completely normal, no tiredness, I don’t recall when my last daytime nap was ! Day to day, for a few weeks now it’s almost been as if the chemo never happened.

I say almost, every time I catch a glimpse of my reflection I’m reminded I’m still bald. This, I continue to be the most gutted about. I want my hair back ! That said, I have certainly regained the ability to grow a moustache. Eyebrows, armpit hair, also on the way back now. Head hair though, I shaved my head and face 9 days ago. Moustache area has needed to be shaved since. Goatee area is soon catching up. Cheeks and neck, I have reasonably long hair now but it’s very fine and light so you don’t notice it unless you’re up close. Head, just some very short, fine and light hairs, really taking it’s time to get going much to my annoyance. I don’t want to be limited to going Heisenberg forever…

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Day to day is certainly back to pre-chemo. Exercise is still lagging, but improving. Early post-chemo, any form of exercise would max out my heart rate. After a week, that started to subside. Right now, my heart rate is back to normal-ish, still a bit high but from lack of fitness. The 15 mile round trips to work were tiring to start with, but I have persevered and over the weekend I went out for a few hours and managed a 41 mile ride at a decent pace, so the short blasts to work and back have been doing the job. My legs were sore after that where they usually wouldn’t be but, that’s just part of regaining my old legs. I did however meet with my cycling coach for the first time, at the velodrome in Manchester. Just a bike setup, but some useful adjustments made and more to make and I should be a little more efficient out there. Marginal gains…

I’m not a runner, but in my chemo induced state in cycle 1 I seem to recall, I signed up for the Great Manchester Run (10km) on 19th May as a short term comeback goal. Running has not gone well at all. I still haven’t run a mile continuously without stopping. Because I’ve been unfit, I’ve been running slow. Running slow means shorter strides. My calves are tight from having not done a lot, and the shorter strides are causing mayhem, intense calf pain. Again, unlikely chemo related, but related to growing unfit over the chemo period. I need to just get out and get fitter so I can run a bit faster and the pain goes away. Its happened to me before. I just want to run the whole 10km without stopping, that’s my goal. 5 1/2 weeks to go, lots of work to do here.

In terms of symptoms, I’ll talk about the usual suspects. Some have gone, some linger. I don’t get dry lips any more, but my hands are still quite dry. I’ve discovered “O’Keefes Working Hands” which is doing a good job at the moment. The pain in my hands (peripheral neuropathy) has eased a little, but my fingers still hurt when doing intricate things like turning a key in a lock etc. It’s real slow progress on this side of things. I still get occasions of ringing in my ears, the tinnitus, but it’s not so frequent. I notice less that my hearing seems a little different, again I’m not sure if this is because I’ve got used to it or it’s gone away. Other than the hearing and hand issues, I’m fairly back to normal.

It’s been good to spend some quality time with the family, rather than as a zombie on the sofa merely in their presence, which is how chemo felt a lot of the time. Going out on the bikes, doing some gardening with the boys etc, I’m an outdoor / doing type of dad and I’d missed that. In the age of tablets and screens, the boys need a kick up the bum a lot of the time to get outside and do things.

As for me and Jayne, I said we needed more time together, date nights etc. My work family picked up on this and got us a joint present, a meal and a cinema trip which was awesome, an excuse to get out. We’d also booked some days off work, Fri, Mon Tues (today) to have some family time. On Fri & Sat, we had a friend look after the boys so we went to Go Ape in Delamere forest, then came back to Media City for a few drinks, a bit of shopping, a nice meal, and a hotel stay for some peace and quiet. We love the Salford Quays area, having got married at the Lowry Theatre so it was nice to spend some “us time” there.

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In terms of next steps, my tests have begun. Yesterday I was at Wythenshawe Hospital for my post-chemo Lung Function test. At 5pm on a Monday, I was the last patient of the day. The chap who did the test said I’ve got some of the biggest lungs (volume) he’s seen, and from what I could make out it looks like I’m still in the “normal” range for the tests, but perhaps down a little on pre-chemo results. I’ll find out properly when I see my Dr in May. It’s a funny old test, wearing a nose clip and having to do some quite specific breathing routines.

On Friday morning I have my hearing test, which again will be interesting to see the results of, and to have a chat with the audiologist about my “fuzzy” hearing sensations and what they may be. Then the big one on the 25th April, the CT Scan. A 6pm appointment lasting 2 hours will take an evening from me but it’s for the greater good. Results day is on the 3rd May when I get to hear the results of all 3. Fingers remain well and truly crossed.

It would be easy to moan about adjusting back over the last few weeks, but you know I prefer to focus on the positives, and I stress again it’s not been all that bad. I’ve adjusted back incredibly quickly, probably pushed the boundaries a little early in some cases, such is my drive to plough on. It’s not always been easy, it’s been hard work at times, but the hard work and perseverance pays off.

There are definitely some positives, like having saved maybe £2 to £3 on shampoo so far. There’s a time saving too, I’ve probably saved an hour in total not having to shampoo my non existent hair over the last few weeks, and towel drying is also a lot quicker. I’d buy a £50 bottle of shampoo right now though, if it meant my hair would come back quicker. Patience has never been my strong point…

Edit – chemo-brain, although I mostly denied having it at the time, seems to have gone too. The tiredness particularly made it hard to concentrate on things. Even after proof reading some of my posts 2 or 3 times during chemo, I still sent them out there with quite a few spelling or nonsense errors, so some nights I got Jayne to check them too and she found lots of errors. Tonight, she didn’t find any at all. Maybe there is such thing as chemo-brain…