Friday 26 February 2016

Week 6 of Treatment
“You can check out anytime you like, but you can never leave……..”  

Monday 23nd February – Dishing out the booze & finishing early. 

A pretty poor night, up at 1.30am & again at 4am. Meds needed both times, that’s the first time I’ve used Morphine during the night for quite some time. Poor old Max was in the wars this morning, couldn’t hear out of his left ear, he claims it isn’t mud in there from yesterday, but I’m not convinced! Dr’s reckon it’s just a build up of wax, session of drops followed by a good old syringing in a couple of weeks should solve it.

My appointment with Scary Spice went ok(ish). She’s concerned that my kidney function isn’t perfect & a final session of Chemo would have a further adverse effect on it. We discussed in detail the pro’s & con’s on having the final session or calling it quits now. Her advice, which I of course follow, is to bin the final session scheduled for tomorrow. She admitted that she didn’t expect me to get through all 6 sessions anyway & was surprised I’d made it to 5. As Cookster reminded me later, it was just like tours of old, he’d crash by 5 on the Friday, I’d be out by 3 on the Saturday J 

So tomorrow will just be RT, but I’ll drop into the Chemo ward with cakes & Moet for Frances. The dietician was with Scary again today. She seemed quite impressed that I ate most of a roast last night, & that I’m trying to vary the diet away from just soup as exercising the muscles in the jaw is important apparently. I’ve lost a bit more weight, despite eating like a front row forward for the last week. I’m not concerned, I can’t stick any more calories inside me at the moment than I already am & I’m still heavier than when I was originally diagnosed in December so there is sod all I can do about it at this late stage of treatment.

My throat feels pretty raw today, the voice is as croaky & weak as it’s been so far. Scary asked what I’d been up to at the weekend. When I mentioned I’d spent most of it at OBR watching rugby her eyebrows lifted in that “You are a twat at times” look J I think I placated her & Jo somewhat with the bottles of fizz. We discussed what I’d be doing once treatment packs in on Friday, her idea is pure rest for 14 days, do sod all! I did say that I was planning on tiling the ensuite bathroom floor, she reckoned that wasn’t the brightest idea as dust will be a problem, I’ve asked her to put it in writing that I shouldn’t be involved in any DIY projects for the next 2 years or so. One thing I am promising myself that I’ll do whilst I’ve some time & the energy returns is to get out into nature with the camera. We’ve some lovely places in Berkshire & I’ve become quite lazy with my photography, concentrating almost entirely on rugby. A mate of mine is off on a Rugby / Gastro tour to Rome at the weekend, lucky sod! I’m lending him my old EOS20d. When I upgraded to the 7d I bought a 50mm f1.1:8 II lens to go with the old body in the hope that one of the kids may get interested in the art. Whilst charging up the batteries for the weekend I played about with the lens, god it’s sharp & I love the speed. Roll on some bright sunny days & the beginning of spring to bring out the colours.
I decided against asking for photos of Scary, Jo & the Nurses for a couple of reasons. Firstly it probably sounds a bit pervy! “Hello, can I take your photo to stick up on a web based blog please?” & secondly most of the names I’ve used in the blog for people I’ve met at the hospital have been made up as if this ever gets further than just a blog I wouldn’t want folk to be identified. Sticking their mugshot up for all to see wouldn’t have been a clever idea.

Tuesday 23rd – This is now getting painful.

Well I may be close to the end of the treatment, but that was probably the worst night’s sleep I’ve had since being diagnosed. Woke at 12.50am & didn’t really get back to sleep. I have my own rule, if the time begins with a 5 I may as well get up as I know I won’t sleep any further. I seemed to have lots on my mind last night. Treatment, recovery, family, work & other inane rubbish that meant sleep just couldn’t arrive. I was also aware that the skin around my neck was feeling very tight & sore. Looking in the mirror this morning I could see that the skin is beginning to crack around the treatment area. I was warned that this could happen, but has hoped to have got away with it. Oh well, massive amounts of e45 cream & polo necked sweaters for a while.

It was quite a strange morning as despite my Chemo being cancelled I still went in early to St Edwards ward as I had a large tray cake to give to the nurses, I didn’t think they’d want to wait until 4pm when my RT is scheduled. I also dropped off the bottle for Frances. I’ll admit I took the easy way out, I left the gifts at the ward reception rather than going to the nurse’s station. I’ve had enough damp eyes this week, it’s only Tuesday.

Things Not to Do When You’re Tired, Emotional & Full of Morphine :
·         Use Heavy Machinery.
·         Drive.
·         Make life changing decisions.
·         Go to the barbers & ask them to shave all your hair off!


My scalp has been getting quite itchy & irritable for a while, so in typical Clark fashion I thought “Sod it” shave it all off!! I think it looks ok, & at least it’ll grow back. I’ve been going to the same barbers on & off now for about 20 years, it’s next to Sweeney Todd’s Pie Shop too. The same bloke has being doing the honours for a few years if he’s in. The usual welcome & he mentioned I sounded a bit croaky, so I explained the situation. Turns out he was at RBH Cancer Centre on Monday with his wife who’s undergoing treatment. The more people I meet & talk about cancer to, the more I find are directly impacted by the horrible little bastard. A few hours at home watching Breaking Bad & then back up to RBH for RT. I feel really rough today, Chemo would have been a real struggle to cope with. A mail from CNS Jo confirms she’ll be calling next week to discuss how I’m getting on, she also warns that things will get tough from now on in, I reckon my body is now reading the script that they’ve written for me. I’ve managed to get through 27 of the 30 scheduled RT treatments, if there were many more I’d really struggle. Today has been as tough a day since I started. Eating is almost impossible, as is drinking fluids. My throat is beginning to have a say in how my day will be. Morphine & I are on intimate terms, meeting every 4 hours for a quick chat. Hopefully the advice that you fall asleep before you OD is correct.
This song was about drugs - He Knows You Know

Wednesday 24th –  “Nothing to see here folks, move along now.”
Ok, I can confirm that you fall asleep before OD’ing J
Early RT this morning with the 8am kick off session. The RT Nurses are pretty clued up, they knew as soon as they saw me today that I wasn’t in a great place. I really am counting down the days until this first set of treatment is over. It’s almost a case of do whatever I need to do, whenever I need to do it & however I need to do it just to get through to Fridays final session. That may sound a bit dramatic, but I’m feeling so low at the moment. I was watching an episode of Breaking Bad this morning, at one point the main character was discussing his cancer treatment & he came out with a cracking quote – “Too tired to eat, too tired to work, too tired to like, too tired to make love”. That line was written by someone who’s been through treatment.

The “Man that can” came round to mend the dent I’d put into Octi whilst high as a kite a couple of weeks ago. He’s done a great job on it, you can’t tell I smacked it at all. Max’s ear seems to have improved so we’ll be off to rugby this evening, I need to see Big Pete about something & could really do with getting out of the house for even a little while which doesn’t involve a visit to RBH (Probably contradicts all I’ve just written above, but I did say I was a bit screwed up at the moment).
I’ve never been a “hairy” person, never been able to do Movember or anything like that, but it seems that the RT has put paid to any hairs growing around the top end of the right side of my neck now, that’ll save me micro-seconds each morning shaving, every cloud………….

It was bloody freezing up at OBR this evening. The Colts played a controlled match against the U16s. When I left the Colts were being shown up big time by their younger brothers. If they play with that attitude on Sunday it’ll be a cricket score to Bracknell in the League fixture.

I’m afraid that I really broke down this evening.  I tried to have some scrambled eggs & just couldn’t get it down. Floods of tears of frustration, pain & “Because I can” fell. I feel so sorry for Carol having to put up with this crap at the moment. It’s even becoming a challenge to get the protein shakes down without a lot of pain being incurred. I guess it’s been building up for a couple of days now. Knowing that things are going to go downhill over the next 10 days is beginning to really tell on me. I won’t have the comfort & distraction of taking myself off to RBH daily. And as a mate mentioned today, I won’t have the chance to chat to the folks I’ve been treated with over the past 6 weeks. Albeit there seemed to be a new bunch of scared faces on RT this morning.

Thursday 25th –  On a scale of 1 > 10, today was a crap!

Thursday merges out of Wednesday as one. I’d been up every two hours, unable to sleep & in a lot of pain. I couldn’t swallow, even water is a problem. I certainly couldn’t eat. I gave up on bed at around 5.30am & just started writing, writing, writing.

A fairly long & at times emotional meeting with Kate for RT today. She’s concerned about my weight, now under 80kg’s for the first time since treatment started, that’s over the 5% loss threshold, however she acknowledges that at this late stage there is little that can be done. She’s made me promise to do a minimum of 6 protein drinks a day & to top up with some real food as & when I feel up to it. She even suggested eating in the middle of the night if my throat feels ok at that point. I’m increasing my Meds now too. 5ml of Morphine every 4 hours, & then every two hours between 10mls paracetamol, hopefully the combined effect of the two will create a plateau rather than the current peaks & troughs of pain.

I get the feeling that today could be the pattern going forward for the next couple of weeks. Lying on the sofa watching TV & dozing. If that is the case then this blog will become even more boring, it’s unlikely I’ll continue in the present format of daily updates posted weekly. I think I’ll probably just write down how I’m feeling about things, & any major updates. I’ll probably go slightly “off piste” too on other subjects.

Carol is out for the evening with friends from work, going to Zizzi’s in Reading, hope it’s better than the last time we went there, service was appalling. Max’s ear is playing up again, but I suspect that won’t stop him eating the stuffed pasta, ribeye & mushroom sauce I’ve made for him. That’s about the most creative I’ve been today, opening the fridge door & seeing what is close to its sell by date. An evening dozing on the sofa, early to bed to avoid sleep again. Today hasn’t been good. Not enough fuel taken on board & perhaps too many drugs taken. Tomorrow will be better.
Friday 26th –  Dream On

I’m finishing the first part of this blog with a link to my favourite song of all time, Aerosmith’s “Dream On”, this goes back over 20 + years when a very good friend of mine was killed in a car crash, this was the song we used to play when driving around together. The lyrics perhaps aren’t ideal for someone who’s planning on being around for a good while longer yet, but ho di hum!
30 days, 30 RT's, 5 Chemo's, 46 cups of cappuccino, 25 bacon rolls, 4 almond croissants, 7 cups of tea, numerous bottles of water, loads of shuffled music, about 6 books, a few tears, loads of laughs, quite a lot of pain, a tattoo, shed loads of drugs, new friends made, a couple of friends lost along the way. That’s the planned treatment now completed. It wasn’t quite as emotional as I thought it would be. I was in early, the girls kindly took some shots of the treatment for me 

 & then before I knew it they were unclipping the mask for the final time. They did ask if I wanted to put it in a bag, no way!!! I’m proud of getting this far, so I walked out with my mask under my arms & a smile on my face. I didn’t get to see Julia I’m afraid, I’m not sure what treatment she was on today, but I’m sure I’ll catch up with her at Scary’s clinic at some point.
I’ve managed to get some scrambled eggs down my throat today, so that’s a good sign. I really want to try and have a normal day if I can. The weekend is going to be a good one. No match for Rams this weekend, shame as momentum is a good thing, but I guess the guys need a rest. Also no games at OBR tomorrow as Bracknell pulled out of the league fixture last night. The Six Nations being back after a week’s break, England need to perform against Ireland better than they have in their two previous matches. We’ve friends round for dinner on Saturday night, then the Rams Colts are playing Bracknell in the league at OBR on Sunday. I’m not going to overdo things this weekend, I promise. J

Reflections – 6 weeks ago when I started the treatment I didn’t really know what to expect. I’m pretty sure I didn’t realise just how tough it was going to be, both physically & mentally. From reading through the blog it’s easy to see just how tough the last couple of weeks have been, but I’ve got through them & I’m going to pat myself on the back for doing that. I hope that the last few weeks have taught me to be a less judgemental person, to be more tolerant, to be a bit more understanding of others. I’ve managed to “do” just about everything I would normally have done over the last 6 weeks. I’ve pushed myself too far on only a couple of days. I’ve not become tied to the house, nor addicted to NetFlix. I’ve realised that Carol, Anna & Max are pretty darn good to have as your family. Finally, the 100’s of messages I’ve had via either this blog or Facebook / Twitter have made me realise that I’m lucky to have such a great group of mates.


 To be continued………………………

#shouldertoshoulder

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