Week 5 of Treatment

“The darkest hour is just before the dawn………….”

I normally publish this blog without adding any sort of preamble to what the days contain. This week is slightly different. As this week has progressed I’ve been feeling lower & lower, as you’ll probably notice from the beat of the daily posts. I’m having to take more Meds on a daily basis, my mood swings are shoite, There are not as many “Ups” as in previous weeks. 5 more days of treatment will see an end to the first phase of recovery. I will get through those 5 days with a good kicking from Carol, Anna, Max, Scary Surgeon, CNS Jo, SN Frances, Head of RT Kate & hopefully Breakfast Club Tony. Anyone else who fancies giving me a kick past the first lap marker then feel free to step in (a cuddle, smile, hug & shoulder would also be appreciated). The same goes for Carol, Anna & Max, but if you see them, give them a hug not a kick!

Having read through the below before hitting “Publish” I realise it’s becoming a bit repetitive, but that’s the way life is for me at the moment. RBH, Treatment, Home, TV, Food, Sleep & repeat………………… At some point way down the line I’m going to try & convert this into some sort of Self Published book, along with “Diary of a Rugby Dad” if I ever get that finished. This one will need a lot of work, so it’s as well I’m keeping side notes alongside the blog to pad it out a bit.

But here’s the picture of the lovely Alison giving me my Chemo bag, so life isn’t all crap! 

Monday 15^th February 2016 – All Quiet on the Western Front

A pretty run of the mill day to start the penultimate week of my scheduled treatment. I’d had a poor night again on Sunday having to get up at midnight & again at 2am, so was glad to lie in bed until 9.30am today to recover at bit. Reading yesterday’s postings I realise I’d overdone things at the weekend, & perhaps my vitriol at Henley RFC was a bit OTT. Rugby clubs each have their own identity & their own ethos. Guess the Rams family ethos fits in better with me. I’m lucky today in that I’ve been able to call on the experience of folk from Rams to provide some advice. Firstly, I managed to scratch the side of my car last week whilst OD’d on morphine. A guy I’ve known for a number of years & in a different life now brings his son to OBR, & he was able to recommend someone who could probably repair the scratch without costing an arm & a leg. Secondly we need to replace the sink in the en-suite as I stupidly poured boiling water into it a few months back & cracked it. So on the phone to the son of the club El Presidento who’s happy to replace for us, again at a decent price. I swear if I needed a Heart Transplant there is probably someone at the club who’d know someone who could help! I only hope I’m folk’s lists if I’m able to help them with anything at any time.

RT went well today, other than being subjected to Simply Red, or as I know them “Amply Fed”, & then Chris De Burgh (forgot my CD again!). Scary Consultant was away today so Carol & I met with her Senior Registrar & Jo the CNS Nurse. A much more positive meeting than last week, I’ve maintained weight nicely & other than a few visual effects of the Chemo they appear happy with my progress. Weight is apparently key to aiding long term recovery. It’s a case of eat away even if you don’t feel hungry. I am trying & I think I may have overcome the “Can’t taste, can’t be bothered” syndrome. Scrambled eggs with mushrooms for breakfast were bland & tasteless, but full of the stuff I need. I can’t remember the last piece of red meat I ate, or other than chicken soup, white meat either. Maybe fish & veg is the way forward? Or will Carol’s evil twin convert me to a full blown veggie 

(Evil twin is actually quite lovely, other than she’s a veggie). Lunch of a protein shake & then afternoon snack of mushroom soup when I got home. She’s happy that I’m still able to get some sort of food down as well as the protein drinks, & wants me to promise I’ll drink more milk than water. It helped having Carol there with me, whilst she’s an eminently qualified nurse in her area, but it’s useful for her to know how the cancer experts are going about my treatment. Another new bunch of Meds prescribed today, including a couple of magic tricks to hopefully cure the constipation puzzle. Luckily I’ve a nurse at home with rubber gloves J Finally the Registrar reiterated again that I’ve got to remain positive, the treatment I’m being given is pretty heavy duty stuff, hence being seen twice a week by the Heads of Dept.

Over the last few weeks I’ve become more & more aware of people I know who have been through, or are still going through the pain of cancer. A fair few are having it much tougher than I am. Each of us are trying to cope in the best manner we can. Me? I rely on my family & my friends (near & far), if I’m becoming a morose bastard then they’ll tell me. If I can sit down with someone & share my experiences I’ll do it, so long as someone wants to listen. A problem shared…………..

It was a pretty quiet evening, Thai Salmon with Noodles for the family. Plain trout with spinach & mushrooms for me. L Another early night ahead of Chemo tomorrow. Looking at my Kindle I need to download a few new books to keep myself going through to the end of the treatment. Averaging just over two books a week at the moment. I’d forgotten how enjoyable it is to just get yourself lost in the plot of a decent book, even if I’ve read it dozens of time before. 

This is the first Neville Shute book I read when I was about 12 I think. I’ve lost count of the times I’ve reread it, one of those books that you can pick up time & time again. 

Tuesday 16^th – “Have we taken our dentures out?”

A flat sort of Tuesday today compared to others over the treatment period. I was extremely tired this morning after having some “Movement” in the night ;) I struggled to concentrate on reading so settled down with the iPod. Fleetwood Mac, Supertramp & Eagles seemed to fit my melancholy mood quite well, so they were stuck on shuffle. I don’t often listen to Supertramp these days, but Crime of the Century is a really cracking album if you’re in the mood for it. https://www.youtube.com/watch?v=Fyt_oEtxUJk  

There were quite a few new inmates in today, all looked pretty apprehensive as to what lay ahead, as was I of course 5 weeks ago. The lady with 3 visitors around her chair all bloody day became a bit annoying, every time I needed to go to the loo they failed to realise that I needed to take my drip line with me & just continued to gossip away with each other. I think they eventually got the picture. I also just want to relax & not get involved in their conversations regarding things which have no interest to me, I think they thought I was rude when I just kept sticking the ear phones in again. I seemed to be in quite a lot of pain today, so took the Meds on a regular basis, it feels quite liberating to whip out a bottle of Morphine, stick the syringe in & draw out 5ml of pure heaven. I wonder if I could get away with doing that in Costa? Maybe a challenge for tomorrow. There’s a lovely orderly on the ward called Sue who comes round every hour or so offering tea & coffee. She never writes down the orders, but always seems to get it right. She must have spent a good 20 minutes today just sitting next to an old boy who was on his first session, just having a chat with him & making him feel at home. You can’t put a price on that sort of care. Carol had driven me in this morning as I’m finding driving after Chemo a tad stressful, so she did a full day at work, whilst providing me with mushroom soup for lunch. Carol mentioned when she came in for lunch that Max had suffered a bout of D&V at home and was worried about passing on any infection to me. We had a long chat with Frances who looks after me at Chemo & decided the best course of action would be for Max to live in the shed for the next week or so. We’ll chuck meat bones at him every couple of days, so he should be ok.

A timely finish to Chemo led to a wait of over an hour again for RT. At least they advised me they were running late. At this point Julia (Sports Direct Mum) walked in, she hadn’t been to Chemo today & I was a bit concerned as she’s on exactly the same treatment as me. The poor girl is really struggling to eat & has lost too much weight for Chemo to be an option for her at the moment. I felt really sorry for her & when she went down for treatment I had a long chat with her daughter who is really worried. Long & short is she will make her mum eat, whether she wants to or not! It’s the only solution.

A bit of advice that I’ll give to the new RT guys who saw me this afternoon. If a patient has been on Chemo for 8 hours & then you’re running over an hour late for the appointed RT treatment saying things like “Have we taken our dentures out yet” is likely receive an acerbic response of “I really don’t give a toss if you’ve taken yours out, I didn’t put mine in today!”

It turns out that a friend of mine from the old days at Security Pacific & more lately from Abbey RFC is also in RBH at the moment, having broken her ankle whilst skiing I believe. I was going to visit her, but she quite rightly pointed out that going onto a hospital ward whilst I’m undergoing treatment probably wouldn’t be a good idea, so I’ll wait until I’ve finished in 10 days or so. She has won the prize for the most impressive broken foot photo I’ve ever seen!! Black, blue & all colours in between.

UPDATE – Breakfast Club Tony has had a cold, so his treatment was suspended for a couple of days. He should be back later this week if all goes well J

Wednesday 17^th – An apple a day does not a genius make!

A 5am wake up today, not great. If 5am beckons me it could at least have the grace to wear some make up & put on a decent outfit. An early 8.15 appointment, following a quick coffee with Breakfast Club Tony, I probably won’t see much more of him as his treatment schedule is changing as of tomorrow. Shame, as I’ve enjoyed his company & he’s got some fantastic stories to tell of his days as a Recording Engineer for some of the biggest rock bands in the 60’s & 70’s. I get the feeling that one of the reasons Tony always seems so cheerful, despite what he’s facing, is that he knows he’s had a pretty darn good time so far. I love the way his wife smiles upwardly with her eyes when he starts one of his stories. She’ll have heard it 1,000’s of times, but to me its pure gold.

I had an appointment with the “Genius” bar in the Apple store to try & sort out the issue with my iPod not being recognised by iTunes. Despite making an online appointment they were running 20 minutes late due to “Half Term” surely they knew that when I booked the appointment? The Genius with the nose piercing didn’t seem that clever to me. He asked the same questions over again & then decided that as I don’t use a Mac there was little he could do to help me? Not great service really. I can’t remember the advertising for iPod’s but I’m pretty sure it didn’t say if you buy a PC / Desktop or non Apple product we’ll just get a spotty teenager to sneer at you if you have a problem. The back up to these sort of problems is usually a “Help” request on Facebook & as per usual a suspect came up with the correct solution, big thanks to Andy Oram for pointing me in the right direction, a beer next time we meet.

My first decent NetFlix film watched this afternoon, The Wolf of Wall St, thoroughly enjoyed it. Am also about half way through The Man in The High Castle, happy to say it’s far better than the book which was unfinishable. No training for Max this evening, weather put paid to it again, however as he still wasn’t feeling 100% after a night in the shed, it was quite chilly overnight, so he probably wouldn’t have gone anyway. We’ll chuck a chicken carcass out to him tonight for dinner, see if he can beat the cat to it.

One new side effect I’ve noticed over the last few days is skin irritation, not just around my neck where the treatment is aimed, but also on my hands, chest & back. Hope Kate (RT Boss) will be able to throw some light on that one at our meeting tomorrow morning. I’ve a feeling that the next couple of weeks are going to be a case of “hunkering down” & trying to get through to the end of the treatment without doing anything stupid or deteriorating any further than the current low. I’m constantly dozing off to sleep & feeling quite stressed out by even the most mundane of tasks. I’m finding this all a bit tough now if I’m honest with myself. The problem is I’m not able to support those nearest to me & I feel like a total bastard who’s just looking after No. 1. This isn’t how I want things to be.

Thursday 18^th – The Weighty issues of the day………..

A good morning at RT in some respect, my appointment was scheduled at 9.20am but as I was early as per usual they took me in and zapped me at 8.50. Kate then did her weekly update with me. The bad news is that I’ve lost more weight this week, despite eating probably more than I have done for the last few weeks. My average food intake this week has been good. Along with my Meds diary I’m also maintaining a food diary.  Breakfast of scrambled eggs & mushrooms, mid-morning protein shake. Chicken or mushroom soup for lunch. Afternoon protein shake. Dinner of fish, veg & mushrooms. Custard with extra cream for pudding. A final protein shake before bed. I can’t believe I’m losing weight! Especially as the Registrar advised that weight is key to recovery. Kate explained that the combined effect of the Chemo & RT are now having a major impact on how my body is able to react. As there is only another week to go they will continue with the final courses of treatment, but I’ve got to be careful & make sure I look after myself. This may mean confining myself to home, not sure yet as I already feel a bit stir crazy just travelling to the RBH & back daily. Getting out & seeing friends is surely a good thing to do? She’ll get more bloods done for me tomorrow as I’m bleeding quite heavily even from the slightest little cut or nick, again possibly due to the intensive treatment. The cuts take ages to heal and are becoming pretty sore in places. I won’t see Kate again after next week’s review meeting. She’s confirmed that the first scan I’ll get following treatment will be after 3 months, this will allow the scaring to heal as much as possible & will hopefully show that the cancer has buggered off elsewhere! So, by the end of May we should know one way or another.

Earlier this week I was debating whether to jump on the fun bus down to Launceston to watch Rams take on Cornish All Blacks on Saturday, but I think it would have probably been a stupid idea & knackered me for the week. I’m also not sure Carol would have fallen for the “I’m just popping down to the shops love” line when it took me 10 hours to buy a pint of milk. Mind you, that does remind me of August Bank Holiday 1980. I was 18, had both legs in full plaster having had a slight argument with a transit van whilst riding a motorbike. I still lived at home with my parents in Woodley. Around lunchtime a mate call John Carter picked me up for a “Quick Pint” – I got home on Monday after spending a wonderful weekend at Reading Festival. I think my mum started talking to me again sometime in October. 

I’ve just spent the most satisfying £150 of my life on Champagne & thank you cards, for the nurses etc to be dished out next week. Along with the biggest chocolate tray cake thingy I’ve ever seen for the RT “Fat Friday” routine tomorrow. I know I moan about the RT guys sometimes, but that’s usually on a Tuesday when I feel perhaps I’m entitled to be a bit spiky. 

Without the guys who’ve looked after, cajoled & kicked me for the last few weeks I think I’d be in a far darker place. A bottle of Moet & a slice of chocolate is the least I can offer back to them. The young chap who served me at Sainsbury’s asked if the champers was for a special occasion, he was however superb about a quietly blubbing 50 year old slowing his till down whilst I explained why I was buying it all. He wished me best of luck for the results & even gave me a free carrier bag for the cake, top bloke.

As a special treat Max was allowed back into the house today, but then as a punishment Carol took him to Swindon Outlet Centre, I can honestly think of nothing worse to do, so I spent the afternoon lying on the sofa half watching the Hurt Locker, great film, but probably not the right genre for my mood today. Maybe I’ll go for Mama Mia or some other escapist rubbish tomorrow. Stuffed mushroom pasta with sea bass for me tonight, no seasoning at all, so hopefully no pain but plenty of gain!

C’mon, it’s ages since I posted a food pic!

Friday 19^th - & thus begins the web…….. J

Another appointment brought forward from 9.20am to 8.40am & seen at 8.20am, suits me much better as I’m home again by 10am, dozing by 10.20am & fast asleep by 11am. I bumped into Julia (Sports Direct Mum) as I was leaving RBH today, she was more positive than on Tuesday. She’s started using a Nebuliser which is helping & she’s eating more too. We’ve made a date for a coffee next Friday when we both finish our final RT sessions. The RT team seemed to appreciate the cakes, well they were digging into them when I left before 9am, so I guess they appreciated them, or of course they could also be living in sheds & feeding off scraps.  

I had a few bit & bobs to do for the new Rams website today, but nothing too onerous, hopefully we’ll be up & live in the next couple of weeks. It’s taken an awful lot longer than envisaged, however as its all being done by volunteers in our spare time it’s hardly surprising. The results will be worth it, far better than Pitchero. As it’s the last day of Half Term we relented & allowed Max to sleep in the house last night. To be honest, the scratching at the cat flap to get in was keeping us awake. He was up early for a driving lesson, anyone on the roads around Purley this morning at 8am, sorry for the delays. Carol’s taking him to Bletchley Park today to have a look around the old code breaking set up. Her late Aunty Joyce worked there during the war, but rarely spoke about it from what I can gather. Should be an interesting day for them, wish I could have gone too as I find that “Spook” stuff fascinating.

There’s not too much to write about today really. It is very much a case of just getting on with things & waiting for the next stage to begin. I think that next week will be quite emotional for me. The end of the beginning, or something like that. Three months waiting for the results will be tough, but the early indications are apparently positive. I’m going to try & get photo’s of the main characters in this blog for next week. Scary Surgeon, Jo, Frances, the RT Team, not sure if they’ll agree or not, or whether they’ll think I’m some sort of creepy pervert…………. I should have snapped Breakfast Club Tony earlier in the week whilst I had the chance. Whether I continue to write whilst I’m waiting for the results is open to debate. I’ll see how I feel & if there is actually anything interesting to write about.

There are no real plans for the weekend, we’ll play it by ear depending on a few different factors. The forecast isn’t great. Centaurs are playing at home tomorrow & I’d quite like to get up & take some action shots of them, but I’ll have to see how I feel first. If it’s chucking it down sideways then I’ll not risk it. It may also be a challenge to find out how Rams are getting on tomorrow as none of our usual Twitter folk are able to travel down, Cornish All Blacks don’t seem to live tweet scores either. Alan, the Best Coach Driver in Berkshire, has said he’ll send score updates to me when he can, so fingers crossed for them to come through & the fun bus to return to Berkshire carrying 5 points with it. Max is playing against Windsor RFC at home on Sunday, so I’ll try and get up to watch that one if I’m up to it. I’d quite like an up to date shot of him & I together after the match, haven’t done one for a while.

Now, as its  35 years ago today since Bon Scott died……………….. https://www.youtube.com/watch?v=6q-IRUIWLYc

Thanks for continuing to read & for the messages of support, they really do mean a lot us.

To be continued……………….

#shouldertoshoulder