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…