Saturday 26th January 2019
“I pick my favourite quotations and store them in my mind as ready armour, offensive or defensive, amid the struggle of this turbulent existence.” — Robert Burns

I am acutely aware that this blog is talking a lot about sleep recently, but sleep seems to be dominating things now and has done for a lot of week 3. I’d resisted the daytime naps until recently, although yesterday I had a much needed 2 and a half hour nap. Even so, I still managed about 9 and a half hours sleep last night.

My hair is weirdly sore. Where it’s shaved short, it hurts when I rest my head on something like the sofa, kinda like little needles in my scalp. Where it’s long and I run my fingers through it, it’s sore too. Must be something to do with it dying off. Anyhow, the mohawk remains, but a fair bit of it had fallen out at the back overnight so it was time to shave it off this morning. I mostly did it myself and Jayne tidied it up for me, it’s just a bit patchy now. Still clinging on to the rest…

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My just giving page topped £1,000 today, which I am utterly thrilled about. Thanks again to everyone that’s contributed.

We had a fairly quiet day, went to Ikea about midday for a wander around. 20 meatballs and chips to fuel the trip around ! Although, by the time we got to the marketplace but where all the interesting junk is, I was knackered and the trolley was basically propping me up until we got back the car. Jayne wanted to get some things to build Parker a sweet shop, I helped her build it when we got back and he’s looking good with it although it’s not finished.

Other than having a headache and being generally tired and lacking energy again, I’ve felt fine today. The cough lingers on again but nothing too troubling.

After sitting at the table to eat as a family, we decided to watch a movie, but for me it was nap time. I’d been fighting it again most of the afternoon, but from 7pm until about 8.30pm I was wiped out on the sofa while they watched the movie. Not much else to share on a fairly (deliberately) quiet day.

Trip to Chester for pancakes and company tomorrow with the kids, then off to watch some cycling at the velodrome. Then it’s a case of getting a bag packed for Monday and having an early night.

Friday 25th January 2019
“As long as there are games to play it is not over.” — Sir Alex Ferguson

Today marks the last treatment for Cycle 1, I’ve now had one third of the chemo I am due to have. There are two more 3 week cycles to go, with Cycle 2 starting on Monday. 2 days of rest remain of Cycle 1.

There was an unwelcome 6.30am alarm today, to get to the hospital on time. I needed to be there for 9.20am but Jayne dropped me before work so I was there about 8.25am. I didn’t have to take a ticket and give a blood sample today, given they were there taken on Wednesday and all fine. One less bruise today.

On that note, my right arm is full of bruises. You’d be forgiven for seeing an arm full of bruises & needle marks and the bad boy haircut and mistaking me for a junkie.

Same Friday drill, see the Dr to get the ok for chemo, have a chat about how I’ve been. No real issues today, we already knew bloods were fine. I know I’ve been feeling crappy because of Monday and the Filgrastim injections. I actually felt a bit more spritely this morning compared to the rest of the week. All good for chemo.

Having forgotten to ask on Wednesday, I asked what the infection turned out to be and whether the chest X-Ray was ok. The X-Ray was fine, they spotted my 2-piece healed collarbone on there from 2 years ago. There was evidence of Rotavirus on my swabs, that’s a sickness/diahorrea type virus. Maybe it was that in week 2 causing my toilet trips. Otherwise, it was likely a combination of factors. The main thing we’re interested in is not what it was so much, but that it was dealt with and is no longer a threat. I also gave the obligatory explanation around my haircut and it got a giggle and a well done.

Next order of business, full English breakfast in the hospital restaurant. Tick. Off to the chemo ward for my 10.30am session, waiting for the phone call to go and take my chair, which was also reasonably timely compared to last week. I tried to describe the chemo suite last week, it was fairly quiet this week so I didn’t mind taking a picture.

You get a comfy leather electric recliner, there’s free wifi in most places in the hospital including here so you can use your electronics. Brews on offer, food if you are there at the right time, music playing. Yeah it’s a bit depressing knowing why people are there and being lined up together, but they do a great job of making a comfortable and relaxing environment for you. For it’s purpose, it’s a great facility.

There were only 2 others nearby hooked up, both there a lot longer than me. Only one more arrived while I was there. The drill here is becoming more familiar too. Get the cannula in, first put some steroids in, flush it through with a little saline. Put the chemo through, it was about 15 mins late today so a brief wait. Bob the pump takes half an hour to put the Bleomycin through, and then another 10 minutes to flush some saline through. It’s then a case of having the cannula taken out, and then off home. All in all about an hour with no delays.

Dad picked me up again, I bought us fish and chips on the way home for lunch to say thank you, I indulged too. My sister came around with baby Xander, we all chatted until about 2.30pm which was nice.

I’d been struggling for a few hours feeling tired again, surprise surprise. I crawled into my bed about 2.45pm intending to sleep until 3.40pm when the boys would be dropped off. I slept through the 3.40pm alarm and the doorbell woke me up. I was absolutely dead to the world, mouth open, dribble, the works. I managed to get up, go downstairs, and I was that tired I struggled to keep conversation at the door.

I asked the boys very nicely to find something quiet to do quietly, and let me sleep, Jayne wouldn’t be back until around 5.30pm. They were great and grabbed their tablets and went in their rooms. I was out cold again, dribbling, and was fast asleep up until 5pm. I really needed that. I woke feeling pretty groggy, came round after about 10 minutes and then took them downstairs to begin our Friday evening. Jayne cooked their tea, I ordered Chinese food (have you been counting the calories) again through sheer lack of energy to get off the sofa. Now it’s Arsenal vs Man U while Jayne is out with her buddies for a meal, and then lots of rest.

It’s the third time I’ve had Bleomycin now. Days 2, 12 and 19. Each time, I’ve got a bit of a phlegmy cough reasonably quickly afterwards, and a little bit of a tight chest. No difference tonight, it usually passes fairly quickly. I’ll drink as much as I can again, to flush the system again and stay hydrated. Antibiotics finish today so I’ll also be medication free for the weekend. I still feel like I’ll sleep well tonight. Then the job this weekend is to recuperate as much as possible before Monday’s 3 day visit.

Thursday 24th January 2019
“Think what a better world it would be if we all, the whole world, had cookies and milk about three o’clock every afternoon and then lay down on our blankets for a nap.” — Barbara Jordan

All day today I have felt like having a nap. I woke up about 7.50am with the rest of the house, and I felt like a nap. Jayne and I drove the kids the half mile round trip to school, and when I got back I felt like a nap. I lazed around for a while, had some breakfast, and felt like a nap. You probably get the gist of it by now.

I drove the 0.1 mile trip to my dad’s house to pick some things up, and then home again. Tired. I had some lunch a while after midday, and then I decided it was nap time. I nodded off after 3pm, and maybe got 30 mins before the kids arrived home, then 2 delivery men ringing the doorbell. The noise made it impossible to sleep any more.

I came down and milled around with the kids for a while, made some glow in the dark gloop with Parker which he’s been dying to do, then made some tea for us while Jayne and Luke went out. Guess what, 6.30pm, curled up on the sofa with my eyes closed for 45 mins. Woke up, felt like a nap. And so on. Early night tonight ahead of chemo day tomorrow. I’ve got to be at The Christie for 9am so it’ll be a fairly early get up.

It was my last Filgrastim injection today, which I believe is still the source of me feeling so run down, so hopefully I’ll perk up. My appetite is still quite low, but I’m doing my best to eat regardless. Other than this tiredness, I feel pretty normal.

I forgot to share my blood results yesterday. Last Friday, my Neutrophil level was 0.1 and the Dr said they want to see a minimum of 1. This left me dangerously vulnerable to infections. The daily injections have been making my bone marrow do it’s job and produce more (and making my bones ache.) Yesterday, my blood results were looking for a Neutrophil count of between 2 and 7.5 as normal. My count was 31.7 !! I’m not sure how quickly that will decline with no more injections due and more chemo, but thats good news for now.

I continue to be blown away by the generosity I’ve seen on my JustGiving page, thanks again to everyone that has contributed. A special thanks to my old colleagues in the Fraud team. It’s about 4 and a half years since I worked there but they put in a sizeable donation as a collective which caught me massively and pleasantly by surprise. It’s at over £900 now, not bad considering I sold my hair off at £100 originally !

Final thing on the hair, I seriously considered dyeing it pink to add to the ridicule and further entertain you all, but this morning it was coming out at a faster rate of knots. I think if I try to dye it, it’ll just come out and I’ll end up with a thin and patchy mess in need of a full shave. I scratch my face, and my beard hair falls out !

I’ll keep it as is for now and happily tell the story of my awesome network of friends and family who have given so generously for a worthy cause. I’ll be massively proud to tell that story to any of the Dr’s or Nurses I come across tomorrow that are happy to listen.

I’m in tomorrow for a chat with the Dr and a shot of Bleomycin, then I need to get as much rest as possible until Monday when cycle 2 begins. I started Cycle 1 at 100% fitness/health. I won’t be starting cycle 2 at 100%, but I can try to get as close to 100% between now and Monday as is possible.

https://www.justgiving.com/fundraising/chemophil

Wednesday 23rd January 2019
“When you have a lot of success you don’t need vanity anymore” — Amelie Nothomb

I really didn’t do much yesterday in terms of physical activity, but my word was I tired by 9pm. I was ready to throw in the towel about 8pm, but managed to stay awake a few hours longer. Great sleep, I slept right through. I obviously wasn’t drinking enough because I didn’t need a night time pee !

With about 8 and a half hours sleep, I still woke feeling pretty groggy. I feel achey still, generally lacking energy and run down, and today I’ve not even felt like eating which is unusual. I didn’t do a lot in the morning, then headed off to the hospital for my check-in following Monday’s admission.

I got to the hospital sat in a chair in a small room with a few others and waited. A nurse came to take another blood sample to compare to those from the early hours of Monday morning, and then I had an hour or so wait until the results were available. I was a bit bored because it had been an hour and a half, and guess what – I needed to pee. So I wandered to the toilet, but half way, I bumped into the person coming to speak to me, a nurse I’d spoken to on Monday morning who seemed to be a right hand person to the Dr that assessed me.

We chatted in the corridor going back to my chair. She told me my bloods were now off the chart (very high) and were looking great. That meant I’m fine for my chemo on Friday, and also far less vulnerable right now to infections. She asked how I felt and I said achey and crappy, apparently that is as a result of the Filgrastim injections (belly jabs) that have helped my neutrophil levels to rise. They work the bone marrow quite hard and that is quite draining it would be seem. She asked if the aching was in my bones, and yeah it is. All makes sense now.

That was it, and off I went. I totally forgot to ask what the infection was that caused my fever on Monday, I’ll have to ask my Dr on Friday when I go in. As I’ve had my bloods done today, I don’t need to have them done on Friday so that cuts an hour off my visit. Plus, I’m starting to look like a junkie with all the bruises and needle marks on my right arm. One less needle on Friday.

I’ve felt tired, achey and crappy since I got home, again not feeling like I wanted to eat but I have made a point of doing. I just want my bed ! I doubt I’ll feel like working tomorrow, but if I feel up to it I’ll catch up on emails from home. Given I’m in on Friday, and then Mon/Tues/Weds for chemo again, I’m not going to risk anything tomorrow if I don’t feel like it.

Regarding haircuts. Firstly, it’s certainly not the weather for a Mohawk. I’ve never shaved my head before, and it was zero degrees celsius today, not a fantastic combination. Thankfully I have a collection of about 8 hats now, although I forgot to take one with me to the hospital.

Secondly, I’ve felt the need to explain to people why I currently look like a yob everywhere I go. I explained to the nurse why I looked different to Monday, and how much I’d raised for the hospital charity, she seemed impressed and suggested (as some others have) that I should go one step further and ask for more donations to dye it pink. Maybe pink looks less yobbish ? She also said she hadn’t even thought about my hair because it just looks like a “young persons haircut.” 🙂 Loving the compliment, but then as I’ve said before, in terms of age I’m certainly one of the odd ones out in that place.

Later when dropping Parker off at Otters at the church, I had to rearrange him getting invested for a week ahead as it was due for next Wednesday and I’ll be in hospital. I don’t want to miss that. I again felt the need to explain my appearance, except this time upon mentioning I raised £500 so far, the leader passed me £10 and said now its £510. Awesome !

No major hair fallout today, although it remains fragile and I need to stop accidentally (on purpose says Jayne) picking bits out. I’m still blown away from the generosity I’ve seen on my just giving page. £515 in a little over 24 hours for getting a daft haircut is amazing, and as a good friend said earlier, it shows just how much people think of me. I am truly and genuinely humbled. Who needs hair ?

Tuesday 22nd January 2019
“I don’t think there’s a public in the world who respond like the British to a call for charity” — Terry Wogan

I slept like a log last night thanks to resisting having a nap when I got home from hospital. Yes I had to get up twice to pee in the night, that goes without saying. I’m still drinking lots to flush the system. That said, it’s the codeine keeping the back pain at bay. I had some before bed, and needed it again when I woke up, although the pain is improving. The Solpadeine packet tells me I could be addicted after just 3 days. Today is day 2. I will be mindful of that !

I also woke about 2am in a bit of a sweaty state, clearly my body is still up to something, fighting off this infection. I thought it best to sleep on a towel and in a t-shirt in case it continued. Lovely.

The first order of business each day now is remembering to take a multitude of medications. Antibiotic 1, Antibiotic 2, painkillers, along with the vitamin c and multivitamins I’m proactively taking, and then the needle into my belly. Still 3 of them to go after today.

Today was all about rest. I’m still fighting the infection, I’m still tired from it and the less I do, the quicker it will pass. No work today, pure rest. I planned to just sit and do nothing most of the day, with a quick trip to the supermarket to pick up some necessary supplies like milk and bread. On the whole, that’s what I’ve done, and I haven’t felt up to much more at all. Roll on bed time…

I’m back at the hospital tomorrow to find out the results of all of yesterday’s tests, see what drugs I need to take ongoing, and hopefully get the OK for chemo on Friday.

However, in other news, this morning I looked like this, as chipper as ever…

You may recall I joked yesterday about going for a Mohawk before all my hair falls out. (Incidentally I pulled at some hair above my ear this morning and ended up with a small bald spot. It’s really happening. I am also one of the chemo patients putting on weight, they weigh you a lot and I notice it’s a consistent upward trajectory, note the 2nd chin appearing.)

Well, I woke up to a good friend having posted on my facebook timeline suggesting a £20 donation for charity if I do the mohawk, already sporting comments from others also willing to donate. In hindsight, I sold myself out a bit too cheaply, agreeing to get it done tomorrow if I got £100. I setup a justgiving page, which I was due to do at some point to raise money for The Christie through my September bike ride. I then posted it to facebook, and it was less than an hour before we hit £100 !

Given I’d pulled a big chunk of hair out already, I thought to be fair I’d wander to the hairdressers today. It’s not hard sitting in a chair for 20 minutes for a good cause, I could always nap afterwards 🙂 I wasn’t sure if there would be enough hair left tomorrow, and now there was charity money on the line ! So here I am…

I have no idea how long it will last before it falls out. I was actually bricking it in the hairdressers chair, I can’t tell you how much I’ve been dreading parting with my hair. Quite trivial in the context of other things that could go wrong. It’s not really “Job Appropriate” either but I’m currently sidelined from work with the infection, at best I’ll work from home and with 4 days of chemo coming up, the mohawk will never see the office.

The best thing by far though is that Sue’s initial £20 pledge has already morphed into £335 for a fantastic cause. That’s one third of what I was hoping to raise in the whole of 2019. I’ve done a lot of fundraising over the years, but this was one of the simplest things I’ve ever done. Sue, I raise a Peroni to you !

A huge thanks to those who have donated so far, you are all amazing. A huge thanks in advance if you decide to contribute too, you are also amazing. And not forgetting those of you who would like to contribute but for one reason or another you can’t, or you already donate elsewhere. That’s great too ! (Maybe don a mohawk instead.)

The Christie is an amazing place, and as I’ve said on my fundraising page, bluntly, it’s keeping me alive. This feels like the least I can do… and it’s far easier than lugging my fat ass and 2nd chin around 100 miles of hills is going to be in September…

https://www.justgiving.com/fundraising/chemophil

Monday 21st January 2019
“I love to smile, even through pain.” — Victoria Arlen

Well this will be one of the more eventful days to write about ! 10.30pm last night, I went to bed, temperature was 37.1 and normal. My back was hurting a bit, I thought that was from doing a little outdoor DIY yesterday. I’d sat watching TV with the back massager pillow Jayne got me in my care package a few weeks back but it didn’t help the pain.

We went to bed around 11pm, and I struggled to get comfortable because of my back but I managed to drop off because I was absolutely knackered. At about 2am, I woke up tossing and turning in real pain. I can only describe it as if somebody had put an electrode in my back and was electrocuting me every 2 or 3 seconds. Whether on my side, back, sitting up, curled up, spread out, it wasn’t going away and was actually getting worse.

As is habit now, I thought I’d take my temperature as I felt a little warm and it was 37.8, above the 37.5 where you need to seek advice. Over about a half hour period, during which time Jayne woke and joined in the fun, it went up to 38.8 and peaked at 39. That’s serious stuff. By this time I can’t even stand without my back jolting me all over the place, and I’m uttering regular semi-uncontrolled expletives because the pain is so intense, whilst getting a sweat on from the fever. No other real symptoms though. At this point I’m still assuming the back pain and fever are separate, but the fever is the more concerning in the context of the chemo.

Jayne called the chemo hotline, and they said straight away I was to go into hospital. They called back to confirm they had a bed. I tried to call my Dad to take me there, but to start with I got no answer, so Jayne had to call 999 to ask for an ambulance to take me there. One was ordered but they said it would be some time because they were busy. I tried Dad again and he answered (yes it’s 2.45am at this point) so we cancelled the ambulance and Dad came to take me to The Christie.

We got there about 3.45am and I went straight to bed 18, Dad went home. Within 10 minutes I had a cannula in and was given a large syringe full of antibiotics, metronidazole. This is “protocol.” Not long after, a Dr came to see me, really nice chap. The nurses already surmised it could be a kidney infection, and had taken swabs for viruses, MRSA (they always do this,) a good few vials of blood, and a urine sample as they usually would. The Dr agreed it could be, but that we would need to wait for the blood test results in the morning. I got paracetamol and codeine to stop the back pain, which at this point has calmed and I can sit in one place jerking about rather than having to be on the move. He said the antibiotic was the strongest on offer, and that under the circumstances I’d be in for 48 hours minimum.

The painkillers kicked in relatively quickly having gone in via IV, and I could finally lie pain free. However I was wide awake, and now on a 1 litre in 1 hour drip of saline, so the usual regular trips to the bathroom kicked in. After that, a 1 litre over 8 hour drip. Chris in the bed opposite was chatty too for 4am in the morning, chatting about Manchester United’s recent resurgence, how long he’s been there and how he’s stage 4 terminal with only a glimmer of hope from a clinical trial. Tough chat, that grim reminder again it’s a potential killer we’re dealing with.

I was starving, so I asked if I was ok to walk to the vending machine, but the nurse offered to make toast instead. I ate it and stayed up until about 6.30am until my drip was changed, then got some shut eye until about 8.15am when I smelt breakfast. The nurse did my observations, my temperature was back to about 37.1 in the morning, so something had worked. I ate my weetabix and the consultant came to see me just as I’d buttered my toast.

Much to my surprise, after we chatted through my version of events, he told me what he knew so far and said that they would send me home about lunchtime with 2 lots of antibiotics in tablet form, send me for a chest x-ray before I left, then call me back on Wednesday to look at the vast array of results they will have by then. He was unsure what the infection was, but was happy I could rest at home. The antibiotic approach may change on Wednesday when more is known. He again was really nice, great bedside manner. He said I’d done exactly the right thing, calling in, being admitted etc. I liked that, as when ambulances and urgent admissions are involved, you want to be sure it’s warranted and you’re not wasting anyone’s time.

Shortly after, he returned with my oncologist, and he seemed happy at this point I’ll be ok for the Bleomycin on Friday, and the next 3 day chemo a week today. I slept for an hour or so, then around midday my drugs were ready, the cannula came out and I was free to go. Lunch arrived just before I was due to leave, another 3 course meal.

So Dad picked me up again, and I’m home now to rest. I had paracetamol and (less) codeine this morning again, but I can feel the back pain returning. A painful ache now, not a constant stabbing pain. I’ve got some sleep to catch up on although I’d rather save it for night time in case my back hurts again, I’m more likely to sleep then.

Aside from all that, I did the obligatory tug at my hair today, and for the first time, it’s starting to give. Not in huge chunks yet, but there’s 3 or 4 hairs coming out with each pull. Weirdly but not unexpected, it’s not just the hair on my head. I blew my nose and noticed nose hairs coming out easily. Either way, its started 😦 I’ll hold onto it as long as I can (I’m still in denial) then I’ll have to set about it with the clippers. Should I sport a mohawk for a day ? Not a style I’d ever go for under normal circumstances but I’ll never have the cause to do it again… Suggestions on a postcard…

6.30pm – My back pain returned to being a bit jolty about 5pm so I nipped to the pharmacy and got some codeine / paracetamol mix, that’s took the edge off it again. I find sitting with good posture helps too, I suspect so much time recently on the sofa with my feet on the footstool may be a contributor. I keep accidentally pulling some hair out, it already seems to come out a little easier than it did earlier this morning. Finally, I’ve managed to avoid napping and should do up until bedtime, so hopefully I’ll get a good nights sleep. I sure need it, followed by a pure day of rest tomorrow.

Sunday 20th January 2019
“I think being busy is a healthy thing.” — Taron Egerton

Thankfully I woke up this morning feeling a fair bit better than I did when I was last night when I went to bed, still a little achy but reasonably well rested.

Jayne keeps throwing my litre bottle of juice at me and reminding me to drink it, good on her as I’m falling out of the habit of staying hydrated. Another needle jab to the stomach this morning was easily administered, I have got the hang of that now. 4 left to go.

I felt well enough to do some DIY, and spent a good chunk of the day outside and up and down a ladder installing some CCTV to the house, better to be safe than sorry. Parker was a great helper and great company.

My family came around to see me today, I’d said randomly that I’d cook pancakes for everyone. After a few hours outside, it didn’t take much standing at the cooker flipping pancakes before my legs were shouting at me to sit down and have a rest. 5 pancakes in and I was absolutely knackered, I honestly felt similar feelings to when I get home from a 100 mile bike ride. The difference being, the aches and pains go away relatively quickly with a bit of rest.

We sat and chatted for a while, then after they left I carried on outside for a little bit and did as much as I had parts for. I’ve been sat down for a few hours now, and other than a bit of back ache, I feel ok again. I think I can stay relatively active like today as long as I have frequent rests in-between.

Earlyish night tonight, and then work from home tomorrow, same pattern as last week. A reminder that it’s 4 days of work as long as I’m well, then another Bleomycin blast on Friday. That will be cycle 1 complete, and a week today I’ll be sat packing my bags for another full on 3 days in hospital to start cycle 2.

I know you shouldn’t wish time away, but I am wishing these 9 weeks to move on as quickly as possible, so I can get back to “normal,” just in the same way you do when you have flu and you want it to bugger off. Being busy helps it along. Week 1 was all new territory, and passed reasonably quickly. Week 2 was still finding my feet, but working through has helped keep up the pace. This weekend has flown by, what with spending time with Jayne and the kids yesterday, and doing some jobs and seeing my family today. Two weeks have gone really quite quickly. I hope the next 2 do, then then next 2…

I still have a full head of hair too. Every day at various points, I can’t help give little bits of hair on my head a quick tug. So far, no sign of it going anywhere although I think I’m right in the danger zone now where if it’s going to happen, it will be any day.

Saturday 19th January 2019
“Even nice things don’t make you happy when you are tired.” — Jo Brand

Just a short one today. I struggled to sleep last night, by bedtime I was feeling a little run down and tired, a little bit achey like the onset of flu. The day after I found out I needed Chemo, I went to the pharmacy and got the flu jab to try to avoid picking it up at a time it could be dangerous, it should have just kicked in when I started treatment. It left me feeling a bit achey and crappy for 36 hours. That’s how I felt last night.

I didn’t sleep well, I developed a headache through the night and finally gave in at 4am to get some paracetamol, then sat up waiting for it to kick in. I”d been drinking a bit more water to wash the chemo through, so I was up peeing a few times too. Slept in until 8.30am, felt a little bit run down again. I went out to the supermarket with Luke, then in the afternoon we took Luke for a driving lesson we got him for Xmas.

We were stood out in the cold for an hour. I got brave and chased Parker around the car park we were observing from, the first jogging I’ve done since pre-treatment. Maybe that contributed. But, now we’re back home, and all the way into this evening, my whole body aches and I feel a little short of energy. It’s the worst I’ve felt so far in 13 days, unlucky day 13. I have read this can be a side effect of the Bleomycin so I hope it passes after a good sleep tonight, it’s got worse as the day has gone on. My temperature is normal so for now I’ll see if it passes, but if it doesn’t then I’ll call the hospital for advice.

On the plus side, this morning whilst Jayne was out shopping with Parker, I sat with Luke and got him to (willingly) watch me do my first belly injection. Forward thinking on my part, a dad has to look manly in front of his 10 year old son, so I put myself right under some pressure there. Out the needle came, and in it went straight away. Easy peasy, didn’t hurt a bit. Relief !

Friday 18th January 2019
“The future rewards those who press on. I don’t have time to feel sorry for myself. I don’t have time to complain. I’m going to press on.” — Barack Obama

I didn’t post yesterday, there wasn’t much to say and finding a relevant quote on an uneventful day is tricky too. I worked from home during the day, felt particularly excellent again under the circumstances. I did however look incredibly pale, which was noted by some folks, and also by me when trying to get Jayne to get a suitable mugshot of me for the structure chart at work. I blended in to the white wall, even with her phones beautifying filters. I’ll be trying that again another day.

Back to The Christie today, a schedule including a lot of waiting around. In theory, 10am giving blood for a test, 11am see the Dr and hear I’m fit for today’s chemo, 12.30pm have a shot of Bleomycin, then call Dad to pick me up and go home. I chose not to ask Dad to stay with me the whole day as was the initial plan, saves him spending 4 to 6 hours waiting around too, and I have enough tech and blogs and work emails to keep me focussed while I’m here.

I actually got here about 9am, did bloods early, setup office in a very office-like and very quiet part of the hospital for a work video call before my 11am appt, which worked quite well. I look a bit better today 🙂 Now I’m blogging and will throughout the day to save me catching up a full day later.

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I saw the registrar about 11.15am, told him how relatively uneventful things have been, and he seemed pleased and didn’t seem to bother I’d been working etc, but then he told me the bloods had shown something. Neutrophils are apparently a sub section of your white blood cells, the bits that would jump on an infection if I were to get one. He said my levels should be above 1 as a minimum and they were at 0.1, very low but not uncommon. That leaves me particularly vulnerable to catching an illness right now.  No impact on this afternoon’s chemo, but it does mean I need to daily Filgrastim injections for a week to stimulate my bone marrow into action, and bring those levels up within a few days.

I also told him about the cough, no concern but some proactive antibiotics have been prescribed too. As much as the posters in the GP’s office tell you about the dangers of over prescribing anti-biotics for simple colds etc, I get the feeling they just don’t mess around when you’re on chemo. Rightly so I guess.

I went to the pharmacy before lunch to order my prescription, then picked it up just before I headed for chemo. I got 7 needles and some antibiotic tablets, with the added bonus that I have to inject the needles into my own belly fat daily. Now I’m fine with needles, you kinda have to be during all this or you’re gonna get upset, but the thought of jabbing one into my own belly. Hmm, I’m not too pleased. I’ve got these for a week, and I believe I will again each time my count is too low. Later the nurse will show me what to do with them.

So off to the chemo day treatment area, unusually you sit in the waiting room and they call your mobile when you’re ready. So you can go and get a coffee, or wait outside on a sunny day, I like that. I got my call from today’s treatment nurse Ann who told me where I was heading, and I went upstairs to the treatment chair.

Now this on first impressions is really quite a depressing sight to be met with.  Imagine 10 leather reclining chairs, all in a row in an outward shaped semi circle, each one with somebody sat hooked up to a drip doing chemo. Most folks are 65 plus, the rest 50 plus, and me. Some look really ill, some quite healthy. I didn’t spot any young’ns today.  Some asleep, some with family, some reading, but it’s deadly quiet.

• 

• 

Ann came over and talked me through it all, popped a cannula in my hand, pumped some hydrocortisone in and then setup the 30 minute Bleomycin blast.  I don’t think I’ll ever get used to the feeling of cold (lower then body temperature) liquid going into one spot in your vein, it’s a really weird sensation ! Time passed pretty quickly, I’d tipped Dad off to set off to pick me up, and then when done I asked Ann to kindly show me how to administer my first Filgrastim injection.

Now in theory, grab a bit of belly fat, push the needle in and press the plunger. Simple. Oh no ! Despite being prodded more then a pin cushion in recent months, including earlier today to give blood and for the cannula in my hand, I winced like a child when that needle went in. The thought of having to do it myself was firmly in my mind, and, well that’s tomorrow’s problem.  It has to go in about half an inch. I’m sure once I’ve done one I’ll be fine, just man up and jab it in Jack Bauer style like he’s injecting himself with some wacky nerve gas antidote.

No issues with the chemo, all fine now I’m home, although I’m tired from getting up early. Celebratory Chinese takeaway for tea, probably 3000 calories I didn’t need. I do need to cut down on this excess to an extent, I have now signed onto the 100 mile cycle sportive on the 29th September. While 100 miles isn’t unusual for me, to do it after all this will be a decent comeback so I think I’ll do that for charity and raise money for The Christie. Although for now I guess there’ll be more belly fat to jab the needle into, 😉

When I was in with the Dr, the guy next-door was telling his Dr how he couldn’t stomach any food and wasn’t eating well. Sounded like nausea has hit him hard, again affirming how lucky I’ve been. The Dr stressed how it was important to eat anyway, and the exact advice he gave was “if one day you fancy a KFC at 11am, fill your boots while you feel like it, just do it.”  Why do they only stress the bad things that can happen before you start your chemo ?  Fast Food on Dr’s orders ?

And upon returning home, I had a wonderful card from the folks at my new workplace. A lovely surprise after a day like today, that left me with a big smile. Since my diagnosis and operation, I’ve changed jobs, so the chemo was awkward timing in that respect. My old colleagues were fantastically supportive (& still are), and in my short time since moving over, my new colleagues have been too.

Wednesday 16th January 2019
“Normal is in the eye of the beholder” — Whoopi Goldberg

If it carries on like this then I may have to rethink the concept of this being a “daily” blog or I’ll bore you all. Today felt very much like a “normal” day.

The alarm clock went off at 6.40am, I woke up very easily and felt refreshed after about 8 hours sleep. Got to work about 7.45am and logged on. Desk work in the morning, a few hours of back to back meetings in the afternoon. I had an afternoon low about 1pm after lunch, but nothing worse than a normal workday. Otherwise I was fully alert all day, a complete contrast to Monday where I was fighting to stay awake all day until I could nap.

After work, I have no feeling that I need to nap. I notice I am still out of breath from relatively menial tasks, although that seems to have improved slightly too. I am trying my best to listen to my body and work within it’s new limits now I’m getting used to what they are. Taking care to get the right amount of sleep, limiting working hours, hydrating and fuelling properly, and simply resting. I would like to think this is contributing to how well I feel.

My digestive system is back to normal, although my appetite remains really quite high. I need to keep an eye on this or I could end up putting a stone or two on. I’d rather not spend my first 3 months back on the bike simply shifting weight, I’d rather be getting my fitness back.

There’s a 100 mile cycling sportive in the Forest of Bowland in September, it’s absolutely beautiful up there. I had the pleasure of twice cycling up Lythe Fell Road to the Cross of Greet on the RBS 500 mile London to Edinburgh Cycle Challenge in 2015 and 2016. I think it’s time to sign up for that, get an early goal in the calendar to work towards. Motivation. Already dreaming of getting back out there…

That’s your lot for today. Work from home tomorrow, pretty full schedule so the day should fly by. Then in for the first bleomycin top-up on Friday.