Wednesday 13th March 2019
“Perseverance is the hard work you do after you get tired of doing the hard work you already did” —  Newt Gingrich

So, the blog will become less frequent now there’s not much going on treatment wise, but a lot of the forums I’ve seen have people asking how quickly you recover from the treatment, so I’ll do a post or two a week maybe, explaining progress. I might “feel” more normal now and be able to do normal things like work, but I’m far from recovered.

We had more of a chilled out Sunday compared to the Saturday with all the birthday festivities. I had an unrelated hospital appointment in the morning, we made vegetable soup for lunch (when I say we, the boys peeled a load of the veg, teaching them young), then I tinkered in the garage again for a while. My buddy Jim came to see me and brought his new shiny bike for me to see, then we had a roast dinner in the evening. All fairly straight forward stuff.

I can get about the house now with no issues, my heart rate still jumps more than usual if I go up the stairs quickly for example but then this was only 2 days post-chemo. No more dizziness, extreme fatigue/tiredness to report. More importantly, I was surviving without naps at the weekend, and that told me I could cope with work.

However, I didn’t fancy 5 days work as a comeback. I haven’t worked 5 days in a row since pre-Xmas. When I was working during chemo, I did 4 day weeks because of the Friday appointments and chemo. Work would accommodate whatever was appropriate in terms of phase back, but there was something massively appealing about having a couple of days holiday so I could be both not in work, and not ill, at the same time. For 9 weeks, I was ill to some degree. When you’re off work, you can’t help having that irrational guilt of going out somewhere when you are ill, even if it’s to the supermarket to get vital supplies. Not quite “wearing a disguise in case somebody spots you” type guilt, but you feel mindful of what you do and don’t do. 2 days holiday, 3 days in work. Perfect ! Agreed 🙂

If you know me well, you’ll know exactly what I did on Monday. Yes, let’s see how I cope on a bike ride. So I wrapped up warm, and went on a fairly slow ride to Hollingworth Lake and back, which was 21 miles. A best I rode about 2/3rds of the pace I usually do, much slower particularly at any form of incline.

Weirdly, for those interested in the effects of exercise, my heart rate was high a lot of the time. My max HR is about 193. Usually kicking about at a pace with little effort, I’d average about 130 – 145. At a faster pace, between 145 and 160. Normally, if I hit the 180’s, and it’s rare I go above 185, I’m absolutely gasping for breath and it signifies a pretty big effort, like full pelt up a hill. On Monday’s ride, I was regularly between 175 and 185, however I wasn’t out of breath at all. Once or twice it went past 185, and still I wasn’t really out of breath. Now I know that my blood will still be light on red blood cells because Monday was still only chemo +3 days. But I got the baseline I wanted, and I can see now how quickly (or slowly) things improve as my blood and lungs recover. Long way to go based on this, but ok as long as I go steady.

Either way, when I got back I felt fine. I did a 10 mile ride at a similar pace in cycle 2 and it hit a lot harder. Luke hadn’t had chance to go out on his birthday road bike as the weather had been crappy since his birthday, but Monday was forecast clear so I said I’d take him out after school. Just a mile and a half down to the park, but he seemed to enjoy it, they both did. Despite the efforts, I made it to bedtime without really feeling tired or like I needed a nap.

Tuesday was a washout weather wise. I just did some stuff around the house, watched some TV. I found a stack of old DVD’s, Xbox Games, even an old Xbox so I took them and traded them in while they’re still worth something. Still no feelings like I needed to nap, so I definitely felt ready for work on Wednesday. I got my things ready, packed my bag and got the mountain bike ready for the commute. I felt up to it after Monday’s foray out, its roughly 7.5 miles each way. I chose the MTB because I’d be cycling through Storm Gareth, and I got the MTB for exceptionally bad weather days.

Off I went to work, through the rain this morning. The wind wasn’t too bad as it was crossing me most of the way, but at points it took my breath away and nearly stopped me dead. The MTB requires a bit more effort but it was all good. I got changed at work and headed up, worked from 7.45am until 4pm with no problems, lots of catching up to do but it was nice being around familiar faces.

The way home was a different story, it’s more uphill on the way back and the extra weight of the MTB was really noticeable. It really took a lot of effort, just to ride slow, but I made it. I was knackered and starving when I got home but felt ok. I’ve got everything ready for tomorrow, except it’s my winter road bike that has been readied for an easier journey.

Symptoms wise, I still have fuzzy hearing. My hearing still feels “different” in certain situations. Being in the shower is one, the sound doesn’t seem to be the same and it’s more noticeable being in an enclosed space. My fingers are still a little sore, not as bad as when they were at their worst but sore. I still struggled to open a tin of beans with a ring pull earlier, and it hurt putting the garage key in the lock. Other than that I’m ok. The high heart rate on the bike continued, and I’ll watch for that starting to subside. Some hair on my head is growing extremely slowly, but I hear it kicks in properly after about 4 weeks. I’m tired of seeing Uncle Fester in the mirror.

For the last few days, Parker has had an iffy tummy and has had the runs. We’ve all had it since then to a lesser and not so problematic degree, but Jayne has just been sick a few times before bed. Funnily enough, I had to scoff my tea down really quickly to get out and pick Parker up from Otters, but I’ve also felt a little sick this evening. Perhaps unrelated, but wouldn’t it be ironic that I managed 9 weeks of chemo without even thinking about being sick, and then it gets me the week after it finishes. Hoping it’s just because I ate too much too quickly…

Saturday 9th March 2019
“Chaos was the law of nature; Order was the dream of man” —  Henry Adams

Late night last night, I was still up at 11.30pm. I woke needing a pee at 7.30am and then I was awake, we were getting up at 8am anyway to go out for a breakfast, Luke’s continuing birthday celebrations. We had a cracking breakfast at Slattery’s, followed by lots of chocolate which they are famous for.

We went home and chilled out before Luke’s driving lesson. Jayne very kindly offered to leave me at home so I could have a nap, so I stayed home with Parker. Funnily enough, despite just the 8 hours sleep, I was tired but not quite tired enough to nap. I instead decided to go into the garage and do some more tinkering with the reclaimed wood projects I’ve been trying to develop. It’s made slightly harder at present because of my sore hands.

I spent an hour doing that, and then it was time to pick up Luke’s friends and take them bowling. They had a good time, then it was off to Pizza Hut for his birthday meal. Again they had a good time, and Jayne and I enjoyed some pizza. After that we went back to ours, filled them all with cake and then drove them home mid-sugar rush to their unsuspecting parents. If anything, I think the noise of 7 kids in confined spaces for a number of hours has done more damage to my hearing than the chemo ever will. It felt like there was nothing wrong with my hearing today. Most of the time it was pure chaos.

Randomly I have a Urology appointment tomorrow at North Manchester Hospital, where I was going before I got diagnosed with cancer and moved to the care of The Christie. 10.40am on a Sunday ? I think this is unrelated to the cancer but it was October when I was last there so I’ll turn up tomorrow and see what they want me for.

Other than that we have no plans tomorrow so I plan to spend an hour or two in the garage again and then settle down to watch the football. I have some reclaimed wood and I can make stuff like this, I’d like to get some going and sell them perhaps with a % going towards my charity fundraising. These “prototypes” already stoked some interest from facebook friends.

That’s the majority of the day gone, and now it’s early to bed to write my blog then think about falling asleep. Sitting here at 9pm still reasonably “with it” having only had 8 hours sleep, no nap, and quite an active day is a positive sign. My fingers have gone a little sorer again, but have been worse. I struggled to do the button on my pants, and the buttons on my shirt earlier today due to the pain, I think yesterday’s chemo had a small impact. No other symptoms this time, no phlegmy cough from yesterday’s bleomycin shot like I usually get. Positive progress. Another enjoyable day.

Friday 8th March 2019
“Now we celebrate this milestone and re-focus on what’s next. We start to make plans and prepare to ‘un-pause’” —  Jayne Evans

What a great day ! I was looking forward to today and it didn’t disappoint. Although I wasn’t too pleased at the 6.30am alarm going off, having gone to sleep around 11.40pm. That’s the least amount of sleep I’ve had for a while and I was knackered when I woke up. Luke and Parker came in our room, and Jayne handed Luke his birthday cards to open, but she handed me one too…

Such a lovely start to the day 🙂 I was genuinely touched. We don’t speak about these things on a normal day, we just get on with things. She’s been great too, my rock.

So I got ready, Dad arrived at 7am and we got to the hospital about 7.55am, he came in with me this time to see what a typical Friday chemo day looks like. I took my ticket and waited for my blood to be taken, then was pretty quick, we had a quick chat with my other chemo buddy then went off for breakfast before seeing the Dr. I have enjoyed passing time between appointments around the hospital eating some nice and basic cooked food. Last breakfast for a little while, never disappoints (apart from the sausages, see cycle 2 day 19.)

Off we went to see the Dr, and got in straight away. Lots of news and good news. White blood count fine, bloods ok in general, happy to proceed with today’s chemo. A likely date for my CT Scan is 22nd April, with the results following on 3rd May. I love having dates to focus on so I was happy to hear some dates. I’ll also have the hearing and lung tests before then too, appointments to follow. Hopefully I won’t have fuzzy hearing, tinnitus and dodgy lungs forever, but more importantly, I’ll be cancer free. I’m not gonna worry between now and then, I can’t control the outcomes. But I sure can focus on the positive task getting back to my normal self and doing more and more of the things I enjoy.

Then we went off to get a brew and wait for my chemo appointment. We got in at 10.50am about 50 mins late, and we sat down. Today I got a trainee nurse supported by a senior nurse who looked after me one Friday in Cycle 2. Things were a bit slower, as she was checking things as she went, which is fine. We all have to learn sometime.

When it came to my favourite bit, the cannula, I offered up my left arm for the first time ever, because my right arm is sore in lots of places having always been used for needles and cannula’s. She had 2 painful attempts, and didn’t manage to get one working. The senior nurse hit a valve in my vein with the 3rd attempt, and then they had to switch back to my right arm in the end, went in 1st time. I looked a bit like a pin cushion.

Anyhow, I was hooked up and the final Bleomycin shot was going in. The nurses mentioned a few times about it being my final treatment. As exciting as that was for me, they seemed genuinely excited too, hence mentioning it a few times. Once you finish your last treatment, there is a bell at the entrance to the Chemo Treatment Centre that you ring on the way out to signify the end of your treatment. For context, I’ve been there 6 times now and never heard that bell ring. Most people in there will be having repeat treatments, so you can see why they get excited to be seeing you go for the last time. When it was time to go, the senior nurse escorted me to the bell, and I rung it out with a smile on my face.

There’s something about ringing a loud bell in a hospital full of people people getting chemo, some ill and some sleeping through it. I rang it pretty conservatively but with a bit of encouragement I rang it a bit louder. A couple of random people popped their heads out and shouted well done 🙂

While in the chemo chair, I was wiped out from only having 7 and a half hours sleep. By the time we got in the car I was ready to nod off, so I decided that when I got home I’d celebrate this milestone by going for a nap, which I did and woke up at 3pm just in time to wrap Luke’s new bike to go with his other presents that Jayne had mostly organised. I picked the kids up from school and Jayne got home as we did. The bike was hidden, so he opened all his other awesome presents and then we let Parker show him to the other big present. Something else I can look forward to other than just getting out on mine, is taking him out for some rides too, and some more family rides with all of us. I got it 2nd hand and replaced most of the running gear on it, so it’s as good as new. This is what I needed to do when I wasn’t feeling so good and with mega sore fingers, but it feels good to have done it, and I can teach him too going forward.

Then we went and met up with my family for a birthday meal, and a mini celebration of finishing my chemo. I ate like a trooper as expected (thanks steroids,) even after walloping 4 sausage rolls about 4pm because I couldn’t wait. Luke got a cake with a candle and we sang happy birthday. I had a celebratory beer, and it tasted great. I haven’t had one for ages, you just don’t feel like it normally. My sister got me a card and some chocolates too 🙂

Jayne and Luke have gone to the cinema, Parker and I are chilling out at home. I’ll probably be out cold by 10.30pm, my eyes are sore from tiredness again. It’s too early to tell if today’s final chemo will upset me again, it doesn’t normally but did last week. Hopefully it won’t make the tiredness and finger tingles/soreness any worse, which is what it did last week. I’ll figure that out tomorrow, it’s gonna be a long day. Birthday breakfast for Luke, another (Young Driver) driving lesson for him at the Trafford Centre after midday, then off to bowling and pizza hut with a few of his mates for pizza. I’m not sure I’ll get a nap so I need all the sleep I can get tonight.

Like I said, today the chemo chapter closes. The recovery chapter opens, and we’ll count down the run in towards getting my results. I honestly have no anxiety around it, because I have other things to occupy me, and there’s genuinely nothing I can do at this point to influence the results. My recovery is in my hands, and I need to be careful not to take things too quickly. My nurse stressed that earlier on, and said some people can take 6 months to get back to “normal.” Saying that, I’m a stubborn bugger and I’ve defied most of the expectations so far, I’ll go as quick as my body allows and no quicker. I promise.

I’ll be back at The Christie in April but while I’m away I’ve got these two smiley faces to watch over me. The big one to sit around the house as a reminder of this journey. The little one to serve as my mascot on my run’s and bike rides for charity.

Until then my first goal, get back to work when I’m ready, I crave routine. Then pick up the fitness again. I was 14 stone 10 pounds today, I weighed around 14 stone when I started chemo. I’ve noticeably lost some muscle (ahem, and gained fat), so that’s about 1 stone I need to lose, and build up what I’ve lost muscle wise. No rush, but that’s another goal. Then it’s the Great Manchester run in Mid May, I aim simply to finish it and raise some more charity money. Most importantly, we can un-pause as a family, Jayne and I need some Date Nights, and I’ve missed doing Dad things with the boys.

Thursday 7th March 2019
“What appears to be the end of the road may simply be a bend in the road” —  Robert H. Schuller

Twas the night before tomorrow, when all through the house, not a creature was stirring, not even a mouse. It certainly has that tinge of Christmas Eve to it this evening. 2 reasons, it’s my last chemo tomorrow, and I for one am pretty excited by that. Secondly, it’s Luke’s 11th birthday tomorrow too, so he’s gone to bed with anticipation while Jayne and I are excited to see him receive his gifts tomorrow.

Going back to today, I had another good sleep but only about 8 1/2 hours. From the word go, my eyes felt tired and I struggled to keep them open for the first few hours of the day. I took the kids to school again, had some toasted bagels for breakfast, then had some visitors about 10.30am, had a brew and chatted til past midday. After that I had planned to do some stuff in the garage, but I simply couldn’t be bothered because I was so tired. I sat around not doing a lot. Just after 2pm I went up for a nap, and slept for over an hour. The tiredness really got me again today, but I think an extra hour in bed might have made a difference. I think I still need 9+ hours at night or else it’s nap time after lunch.

After that, the kids got dropped off here, and we just sat around watching TV. Luke seems to have a cold, Parker seemed quite tired too so we got them to bed much earlier tonight. Jayne wrapped Luke’s presents and then we watched some TV. I’ve got my bag ready for tomorrow and it’s a 6.40am get up to get to the hospital on time. If I wrap this blog up quick, I’ll get 8 hours sleep.

Just the tiredness again today, I’m getting about a bit more without my heart racing. My fingers are now more tingly and itchy, less sore. They are still sensitive to heat though, as I found out picking the freshly toasted bagels out of the toaster. I haven’t felt like eating a lot today either, just the 2 meals, appetite is still very much up and down.

So tomorrow I need to be at hospital for 8am. Normally on a Friday Jayne drops me off there and then Dad picks me up. This time Dad is going to pick me up early doors to take me, and experience a chemo day with me. Tomorrow is the best set of appointments I’ve had. 8am for Blood, 9am to see the Dr, 10am for Chemo. If anything, I’ll be more worried about hitting them all on time than the waiting around. Things don’t always run on time. We need breakfast in-between of course, another NHS canteen Full English 🙂

I’ll miss the awesome Birthday breakfast that Jayne has got for the boys, but it can’t be helped. He’ll also have to wait until after school to get most of his presents, but again it can’t be helped. He understands. Then in the evening, we’re out with my family for a meal for his birthday, he picked the Toby Carvery because he likes the desserts. I’m not complaining, I’ll have the steroid munchies again so I’ll fill my plate as high as it will go. If I feel like it, I’ll have a celebratory beer. I’ll need to drink a few litres of water after the chemo though, otherwise I’ll shrivel up like a dry sponge after a beer. Chemo really does dry you out.

What a mental lift tomorrow will be 🙂 Then I just need the physical side of things to catch up. On the longer journey of having cancer, this is of course a bend in the road, not the end. After tomorrow I’ll need a hearing test to see if it’s been temporarily/permanently damaged, same for my lungs, then the all important CT scan to see if the chemo has worked, and whether I get the all clear or not, I’ll be a regular customer at The Christie for years to come. But boy will I be glad when this chapter is over. Enjoying time with Jayne and the boys and not feeling useless, getting back to work properly, getting back on the bike, growing my hair back ! The next chapter starts tomorrow once this one ends, and it should be a great day all around.

Wednesday 6th March 2019
“Patience pays off” —  Mayte Garcia

Again, I didn’t blog yesterday as there wasn’t much to say. Ate, slept, rested, felt marginally better. I managed a bit of tinkering time in the garage, finalising the work on that bike which is needed at the end of the week for a birthday present, I’d felt under a bit of pressure . Later we each had our version of a pancake each, whether English or American, Syrup or Lemon, and thoroughly enjoyed them.

Last night, I had probably the best nights sleep for a while. I don’t remember waking up more than once in the night, and I felt pretty refreshed when I got up. There’s definitely a decent improvement today. I’m getting less out of breath when I do things, and I haven’t had a nap, although I am really tired watching the football and am looking forward to my bed. Good signs though, I just hope that Friday doesn’t derail the recovery.

My hands are less sore, but still sore. At times they are tingly, almost itchy, which is new. Again I’d liken it to when your hands are absolutely freezing, like when you have been building snowmen or making snowballs. Then when you go inside and warm them up, there’s a tingling sensation in them. Hopefully it’s the nerves coming back to life and repairing ? I don’t really understand it but I hope so.

If I feel even better tomorrow, I might be a bit more active and see how I hold up. I’m not counting my chickens just yet but I’m optimistic.

Monday 4th March 2019
“Always nap when you can. It is cheap medicine” —  Lord Byron

Well today marks the start of the last week, week 9 of 9 ! In my 36 and a half years of being, I don’t ever recall having two naps in a day. I would guess I was a little toddler the last time that happened. Until today…

I went to sleep about 11pm last night, and was woken around 7.30am with the usual getting ready for school/work routine going on in the house. I could have slept longer, I felt pretty tired but I’d have all day for that. It didn’t help that I woke at 4.20am prior to that, with back pain again, that really painful back spasming I’ve had twice now during the chemo. I’m pretty convinced it’s from bad posture and lots of sofa time, both of which I’ve been guilty of for a good number of days now. I tried to sleep but it got worse, so I took the paracetamol/codeine mix I have, and waited for it to kick in. I reckon I was back to sleep about 5am.

I dragged my butt out of bed at 8.30am, and drove the kids to school. That was an effort, and the weather was pretty unattractive this morning. The fresh air didn’t have a positive effect today. I went straight home, and went to lie on the bed because I was wasted. I messed on my laptop, reading news, looking at stuff to buy etc. Then at 10.30am, I was done, although I never really got going in the first place. It was nap time. I don’t recall a pre-lunchtime nap recently either.

My approach to work this week is simpler. Rather then hope I’m fit to go back every day, and take a mental hit when I’m not, I’ve assumed I won’t make it in all week. Things are still moving slowly, and if I feel well enough to work one day then thats a bonus. Saves a little day to day disappointment if I feel no better. Being ready for a nap at 10.30am suggests it was a good call today.

I slept until about 12.20pm, one of my longer naps. They are finally tarmacking our road after 2 and a half years of living here, so this involved sleeping through pneumatic drills while they repair the kerbs, which was no problem. From there, I sat in bed until about 1.15pm, then went for some lunch.

I hadn’t felt like breakfast, and didn’t have any, so I was now hungry. I did look up ordering some food in because I’m so tired, but I thought better and threw some easy food in the oven. I then watched TV until 3.20pm, and drove to school to pick the kids up. Again it was cold and windy, and it was an effort.

Back infront of the TV until about 5.15pm with the boys, by which time I’d run out of steam for a 2nd point in the day, lay down on the sofa and dozed off for 30 – 45 mins on and off again. When I woke up at 6pm, I still felt knackered, it took a coffee and about 30 mins to properly wake up.

I still wasn’t hungry until about 8.30pm, so I had some weetabix again because my appetite is still dodgy and I can stomach it easily, a bit of a backwards day.

Symptom wise, it’s still a relatively short list. I haven’t done a lot with my hands today, but they are still sore albeit a little less sore than yesterday. Turning a key or doing a zip up are still quite uncomfortable. Tinnitus is still regular, the fuzzy hearing still around also but becoming less frequently noticeable. Tiredness is still the main one by far, and getting out of breath way way way too easily. I only had to have 3 days of Filgrastim injections this time, Fri / Sat / Sun, so I hope that I’ll get a bit more energy back not having to deal with those.

I guess the only slight downside to having naps is that I don’t feel so tired at night. Its 10pm now and usually I’d be struggling badly to keep awake. Not so tonight though, although it’s starting. I’ll watch some youtube while Jayne works and that should send me a little sleepy.

I really despise day’s like today, but fully appreciate they are necessary, sleep is indeed a prescribed medication right now. By that I mean a full day lost to illness, where you do and accomplish virtually nothing. I’m usually all systems go and it feels very wasteful. I said to Jayne earlier today, I want to accomplish something tomorrow. We need milk and bread so I’ll see if I can get out briefly to get some. I feel like making a cake or a nice evening meal, something easy that will make me feel mentally a step above useless, without bowling me over physically.

Plus it’s pancake day tomorrow, so I’ll have to eat tactically to make sure I’m hungry at the right time in the evening. The kids load them with nutella, squirty cream, maple syrup, chocolate sauce, basically anything they can lay their hands on that is 50% sugar or more. For me it’s a simple pancake with sugar and lemon juice. Mmmmmmm. Something to look forward to 🙂

Sunday 3rd March 2019
“Time brings all things to pass” — Aeschylus

It sure does, but sometimes quickly and sometimes not so quickly. Cycle 3 has been a different kettle of fish. Today, from a point of view of how tired I have been for hardly doing anything again, I actually feel I’ve gone backwards slightly.

9 hours sleep, and I had to drag my butt out of bed again. Had breakfast, went out to a shop briefly and came home, and as usual by lunchtime I was tired enough to sleep. I didn’t, I watched TV with the boys and passed the afternoon away. By 4pm, I couldn’t keep my eyes open so I had an hour’s nap on the sofa. When I woke up, it didn’t feel like enough and I’ve been tired ever since. 9pm, and I’m struggling somewhat to stay awake.

Jayne has been a star today, cooking and making sure I don’t have to do much around the house. Fry up for breakfast, fajita night again for tea, all yummy and enjoyed by all.

I really haven’t done anything much today in terms of physical activity, but I’m exhausted again. Today I’ve been getting dizzy each time I get up again. I wonder if the Filgrastim just takes that little bit more out of you and has sent me backwards a little.

My fingers are still playing up, tingly, painful. The cold packs I got do provide some temporary relief but it comes back. Stupid things like turning a key in a lock, holding cutlery, unscrewing a bottle lid, doing up a zip, are all difficult still.

I’m still hoping this will get it’s hurry on and I’ll start to feel better, but I’m resigned to another week being written off. Rest, rest, rest, what else can I do?

Saturday 2nd March 2019
“The greatest evil is physical pain” — Saint Augustine

I nearly slacked off blogging because there hasn’t been a lot going on today, but I thought better of it. I got the usual 9 hours sleep last night and was up just before 8am. I’d drunk a lot to flush the chemo so I was up a few times to pee as expected.

Normally, the Friday bleo shots don’t do anything but maybe give me a little phlegmy cough or a slight feeling of tightness in my chest. I’d complained over the last few weeks of mild tingling and pain in my fingers, and some sensitivity to heat. Peripheral Neuropathy.

Unfortunately today my fingers, particularly index fingers and thumbs, are really quite sore. This is making menial tasks (such as typing this right now) quite painful/uncomfortable. Things I’ve struggled with today have been pulling the ring pull on a can of beans, pressing buttons on the TV remote, stirring a cup of coffee. All more intricate actions. Holding something like a hoover, or toilet brush when doing some cleaning was fine as it’s a full hand grip. It’s ramped up literally overnight, so I’ve ordered some cold packs from Amazon, and with the magic of Prime they arrived same day and are chilling in the freezer. Hopefully they will provide relief because painkillers haven’t worked. This is my least favourite thing so far, by far. You don’t appreciate how valuable a fully working, pain free hand is, until it’s not any more. Hopefully they’ll recover quickly.

After a fry up this morning, I managed some tidying. Hoovering and hanging some washing up, although it was knackering as usual and I did it in stages with rests in-between. I’ve literally sat on my backside for the rest of the day since then. I watched a few football games, then some TV and will do similar until bedtime. Again I wanted a nap today but haven’t really had the opportunity to do so with a house full. I’m already yawning a lot at 8pm, but I can lie-in again tomorrow.

I still feel massively run down. Appetite has been ok for most of the day, but so far I haven’t felt hungry since lunch. It might end up being a few weetabix before bed type day again. Tomorrow we have no plans so it’ll be another sofa day for me I’m guessing.

Yesterday I had a shave (with a razor) for the first time in many many years, I’d guess about 6 or 7 years. I always have stubble, always. I decided to shave my face because I just had random thinly spread hairs on my cheeks and neck, probably 20% of what was there before. Now I’ve shaved and have a baby smooth face, I can gauge when it starts to grow back. 24 hours on and not even a hint of any roughness that would suggest any regrowth.

Weirdly I’ve always kept some fluffy “baby” hair on top of my head and at the sides in places, but it’s not appeared to be growing. At some point I mean to get the razor on my head and shave these 2mm long hairs too, so I can also get a sense of when it starts to grow back, which I expect is at least 3 to 4 weeks away yet. I’d have done it today but for my hands hurting. Maybe tomorrow.

All in all not a bad day but I still haven’t shaken this tiredness yet, it still doesn’t look like going anywhere quickly, just marginal improvements each day. Right now I just want this pain in my fingers to go away, and quickly. All I can do is continue to rest and give things the best chance.

Friday 1st March 2019
“I’m nearing the end of the road and still learning” — Mike Wallace

As always, it’s an early start to get to the hospital for around 8am. I needed to be there for my bloods at 8.40am today, but Jayne gets me there on the way to work and it was a good job. They just moved the Outpatients Department on Tuesday, to the newly refurbished one elsewhere in the hospital. I think there’s teething problems, but it’ll be worth the pain in the long run.

I wandered to the new place, checked in on the screen and it kindly told me I was too early and to go to the cafe !! The blood tests are still being done at the old place, so I went back and they had no blood forms so there were a lot of people waiting. Mostly doing the under the breath moaning to their partners, “oooh George, this isn’t any good is it,” “piss up and brewery Margaret, piss up and brewery.” It’s never dull doing some people watching. The good old British way of expressing dissatisfaction, quietly.

Eventually I got a ticket and had bloods done at about 8.45am, 5 mins late despite arriving 40mins early. Hey ho, it’s not like I didn’t have the time to waste. The nurse who took my blood clocked that I was born in ’82, and said her daughter was born the same year. I apparently look like I’m in my 20’s, and I have a baby faced thing going on 😉 I think the lack of hair makes me look like an oversized toddler, slight difference of opinion there but I took the compliment. “You’re the same age as Prince William and he looks miles older. I’ve never understood why he doesn’t just shave his hair off.” It was a fun conversation 🙂

I’d had 3 weetabix for breakfast, but I was hungry at this point. I went to the new outpatient waiting area. It’s very modern, new, quite swish, and it’s not right next to a main entrance like the last place so you don’t need a winter coat despite the rest of the hospital feeling like an Australian summer. I got there about 9am for a 9.40am appt. I got called about 10.30am, which would usually kill me waiting so long, but today I knew chemo was at 1pm so if I wasn’t sat there, I’d be sat elsewhere. Other than I was getting unusually hungry compared to recent days. Just the thought of steroids !

Nothing much to report. Last Wednesday I got discharged with 3x days of Filgrastim Injections to keep my Neutrophil count (immune system) up. The time prior, 5 days worth had pushed my numbers from I think 0.3 to over 40, when you’re looking for between 2 and 7.5. I got 3 days worth last week as 40+ was too high, but today they were 0.3 again. I’ve got another 3 days to take. A count of 0.3 puts me in the territory of absolutely not wanting to catch a bug because there’s nothing there to kill it off. I explained to the Dr and a Nurse that I’ve been wiped out this last week, and they consider it normal. Cycle 3 is an accumulation, so it’s nothing to worry about. I forgot to ask about my red blood count, I was suitably reassured.

Now very hungry, I went to to the pharmacy to order my injections, it’s always about an hour’s wait so I get in nice and early and pick them up after chemo. I was hoping I’d get called early today, so I got some lunch and a pack of mini eggs and sat in one of the many waiting areas waiting for the chemo team to call and say it was my turn. The waiting area for ‘day chemo’ was hammered today, so I didn’t expect an early call. I video called my friend Nick for a good 20 mins, it was great to catch up. Then about 12.45pm I got the call and up I went.

The nurse was a nice chap, we chatted about running and biking whilst he was setting up and putting the cannula in my arm. He asked me if I had medication to order, so I said I had ordered the injections to pick up from the pharmacy already. He asked if I inject myself, which I do, and then said you know what to do with them don’t you. Me – Yes. And to take them out of the fridge 20 minutes before you use them, he said.

Now, have you ever had one of those moments where you do an incredible amount of thinking in about 1 second flat without trying to show hesitation… this is how it went…

• Fridge ?
• 20 minutes?
• No-one’s ever mentioned that before…
• That makes sense because it’s bloody cold when it goes in…
• He’s gonna think I’m a moron if I’ve been injecting it cold…
• Need to save face here…
• Say “Yes” like you knew all along…
• Say it convincingly…
• Smile… 🙂

“Yeah yeah” I mumbled with a confident if not hesitant smile. “Cool” he said accepting my response, “unless you’re some kind of sadist who likes the extra pain of the cold.” I think I got away with that one.

So my chemo finished at 2pm, and as usual I’d done a best guess and asked Dad to pick me up at 2.15pm. I went for a pre-emptive pee so I wouldn’t get caught on the way home then raced to the pharmacy. The pharmacist got my order, but all 3 booths were full so she came out in the corridor to pass them to me. As always they ask your address, and guess what she asked…

• Have you had these before…
• (me) Yes
• Do you know how to use them…
• (me) Yes
• And you know to bleh bleh bleh… (she gets tongue-tied)
• (me, like a pro that didn’t learn this half an hour ago) Take them out of the fridge 20 minutes before? Yes 🙂
• Great !

I had about 10 minutes to kill, so I thought I’d go the charity shop which is right near the main entrance where I get picked up, and buy a teddy or a dog as a mascot of sorts for my fundraising. Just as I was about 5 metres away, someone shouted me. I’ve mentioned before I’ve bumped into another chap several times who has been on the exact same schedule to me, but has struggled really badly, and he’s always with his relative, that’s who shouted me. No sooner had we started talking, and I got a tap on the shoulder from Dave, my friend in the opposite bed from last week. He was looking much better, it was nice to see. I had a brief chat with both, then my lift arrived and I went home.

Typical chemo afternoon, drank lots of fluids and didn’t do a lot. Naomi (you’re famous again) kindly dropped the boys off for me, then we waited for Jayne to get home and had a nice meal while we watched a movie. After that, a funny half hour watching “fail army” on you tube, half the fun is seeing Luke absolutely wet his pants at some of the videos. I did a 20 minute warmed up injection, and to be honest it wasn’t really much different.

10pm bed to write my blog, and then off to sleep. It’s been a better day, I’ve not been as tired as I have been but still quite tired. I would have napped late afternoon but didn’t get the chance so I’m pretty whacked again now and looking forward to a pee-interrupted sleep.

Unfortunately, today a brother of a friend of Jayne’s has found out he has testicular cancer too, and is being sent in for the Op pretty quickly as I was. Again, only around 2000 men in the UK are unlucky enough to get the diagnosis each year, so it’s a fairly exclusive but not exactly a pleasant club to join. It’s highly curable though, and the chemo isn’t as terrifying as it sounds if you have to have it. To all those in the same boat, I hope the blog has been insightful and useful to what may lie ahead. And remember, if you get Filgrastim injections, take them out of the fridge 20 minutes before you use them 🙂

Thursday 28th February 2019
“Even rats can only be kicked around for so long before they’ve had enough” — Joe Cowley

People say I have coped with this journey really well, and that’s a nice compliment that I take a lot from. I’ve dealt with it well by thinking positively, but more importantly, I cope well when I have a goal or date/times/schedules to look to, or when I am prepared for the way ahead. I like to have a good idea of what will happen, and when, then I feel in control.

I came into Cycle 3 partly cocky that I knew what was going to happen on a day by day basis, because I’ve done it 2 times already of course, and partly expecting it to be a degree worse than the last two cycles. I’d mentally prepared for it to be just a degree worse, but in reality the hit has gone up a number of levels, and it’s more prolonged. So back to my theory of coping. I feel far worse than I expecting, and it’s not gone to plan in terms of duration. That’s been a massive sucker punch this last week.

The last 2 days have continued to be physically difficult. It’s eased off a little, but I’m still getting tired too easily, mores than previous cycles. I spent nearly all day yesterday on the sofa with the exception of spending half an hour or so tinkering with a bike I’ve picked up as a gift for someone. Same today, I’ve just been sat most of the day, except for going into the shopping centre for half an hour and getting a few things done. I was too tired last night to blog again, I genuinely couldn’t be bothered picking up the laptop. I felt the same tonight but just got on with it.

Mentally it’s taken it’s toll for a range of reasons. I’ve said all along work has helped keep me busy and engaged, but I’ve not been able to get back this week despite expecting to do so at some point. It’s frustrating and annoying getting out of breath for menial things, but when it goes on 3 (possibly more yet) days longer than you were prepared for and it’s not going away, it’s depressing. Worst of all I don’t feel like I’m accomplishing anything, and whilst this isn’t about accomplishing things each day other than getting through it, it helps keep positive. Up to now I’d been doing bits and bobs along the way. My appetite is still playing up too. Food has been a source of enjoyment when my taste has been all there, but again this week it’s been the opposite to an extent.

I’m still acutely aware that others who have gone through this journey have faced far worse, full on nausea and needing to sleep more hours in the day than they are awake for example. But relative to my journey, this last 7 days has been the hardest so far and I’m a bit down about it. It’s temporary, but as I keep saying, the great thing here is that once it passes, that should be it given I’m 8 days from my last treatment. Each day it continues though, it just grinds you down a little.

I’ve not had many whinges but consider that a good old whine, including today’s quote. I’ve had enough now, but I’ll still go to bed hoping I wake up with the spring back in my step 🙂 and remember how close to the finishing line I am.

I’m off to hospital for the day tomorrow again for the penultimate chemo, 8.40am bloods, 9.40am Dr appt, 1.30pm chemo for an hour. I hope I’m lucky again and get in a few hours early for the chemo as a 4 hour wait isn’t particularly appealing, and the way I’ve been feeling this last week I’ll be sleepy about lunchtime. Usually I’d spend a good portion of that time eating or thinking where to eat !

On tomorrow’s visit I’m particularly interested to see how my bloods are, red/haemoglobin this time to see if it explains the tiring easily. Also, to ask if it was deliberate or an oversight that I didn’t get any steroids when I was discharged last week, and if that will have added to the fun this time around. In my head, there must be a reason it’s hit harder this time. It won’t help, but I’m a curious kitty.