The Ugly, the Bad and the oh-so-Good

Greetings Arse-kicking Supporters, here is some more blog, as it is jollop #5 tomorrow, and things are mounting up. I wanted to do a blow-by-blow account, to show you what chemotherapy is really like (or at least my experience of it) Here is what I came up with:

Tuesday 3^rd April:

10.00 am Arrive at unit. They’ve saved the Magic Chair especially for me – hurrah! I make myself comfortable, unpacking bags, removing shoes, bra, etc. Everything is on the LHS as today is a right vein day, and the poor vessel is already shrinking with anxiety. I haven’t had much to drink yet either so they might have trouble locating the thing. Apart from a slight headache and feeling tired, I’m OK. Maybe a bit irked that I have to be here, and a bit nervous of what crappiness is in store this time, but I’m trying to play that down. I know it’s not helpful to think that way. The same goes for the slight pre-emptive nausea. I didn’t have much breakfast so I might have a cold cross bun. I bought a load to share with nurses and patients. Not that the nurses deserve them - I had to put my own cover on my pillow this time. I mean, what is the NHS coming to!

10.12 am Can hear Tina and The Hoff discussing my vein situation. Nurse Becky has left the heat pad on my drip machine to remind all of us. “Don’t worry,” I said, “there’s no way I will let you forget!”

10.32 Here’s Tina! She dumps a massive tray of drugs on the side, all for me. I take 3 granisetron to get in early with the anti-sickness. Blood pressure, temperature taken, obs done. Needle inserted carefully into the RHS to keep pain to a minimum. I’m amazed that today I didn’t feel it. I think it must be Tina’s touch! She also taught me that it hurts less if you watch it, and it’s true. Mind you, I’m getting a lot of practice these days. It’s the 7^th needle in as many weeks, not to mention the lot I had before all this started. I’m hooked up to a litre of saline, which is trickling steadily in. We used to have 500ml, but I’m being diluted thanks to my tender blood vessels. After that’s all set into motion, Tina adds a syringe of steroid and patiently squirts it in. I ask about her twins – Isaac and Mary – who sound like a terrible twosome in their terrible twos. She reckons it’s the boy twin, always startin’ something. I roll my eyes – typical.

11.00 We’re in with the doxyrubicin and I didn’t even notice! I’m getting an old hand with this. Having said that, I can feel it now. It’s cold and the earlier vein damage means that it’s a tad sore. I’ve also been handed my big bag of drugs for the week, which includes lorazepam, the new anti-emetic which happens to also be a sleeping tablet. 

Just Say No, kids

11.10 2^nd bag of jollop going in now. I’m trying not to move my right arm. Typing is tricky! Tapping away at my overdue IS crossword, but very slow with just my leftie.

11.19 Feeling a bit icky and slight chemical taste in mouth so tackling strawbs that I packed thoughtfully before I left. Not too thoughtfully – the lemon juice I dressed them with has picked a fight with my ulcer. Didn’t think that one through. V busy in here today. 5 nurses, all rushed off their feet. Oo I’m beeping. That means no.2 nearly done. 

Next!

11.25 A pause to wash out my veins then in with number 3.

11.30 Number 3 going in. So busy here, we’ve run out of chairs! Old chap opposite has very bruised hands and he keeps scratching ‘em, getting his chemo on rubbish visitors’ chair. Hot cross buns are going down very well with all. I gave up with the strawberries – starting to lose appetite. I know I have to work, and sit here patiently like a good girl, but I’m a bit bored with my day so far. It’s all been “have to”, with not a glimmer of “want to”. If I was at home, it would be time for tea and chocolate, and laying down full length while I watched some TV. But hang on – this seat reclines doesn’t it? (*press lever*) Not like lying on the sofa, but better. Just remembered that something else I get when I’m here is trapped wind. Not sure why. Sitting back might ease this. I might attempt a wee in a sec, but it’s a faff, unplugging myself from the wall and wheeling my drip thing around. I’m the youngest person being treated in here right now. There are a couple of mid-40s blokes, and all the rest that I can see are codgers and duffers. I’m a spritely fogie, compared to them, which is why I feel guilty for sprawling around in the Magic Chair while they’re mostly perched on crap seats. As for watching TV, I have got DVDs and I have got my pod to keep me entertained. I’m saving them for the painful bit. Better try working. 

Oh, oh, oh, it's magic!

11.49 Put the pod on shuffle, the effect of which is like someone sticking an egg beater into my brains. I’ve not tried playing music before while I jollop so we’ll see. The problem is, I want to burst into song! Better try not to. Wouldn’t want to scare anyone. Hard to concentrate on work, but the mini-eggs help.

11.54 The Polish lady’s just arrived for her bloods, and for the first time, I believe she’s bewigg-ed. You wouldn’t know unless you’d been watching her hair thin over the last 3 fortnights. Everyone seems to go for wigs, at least all the ladies do. The blokes tend to bonce around proudly. No-one does the turban thing. Can’t imagine me sitting here for umpteen hours with my wig on. Time will tell.

I love what my iPod throws out at me. My eclectic tastes make for interesting playists, and I particularly love a title significant to the moment. Blue Moon, Creep, Mis-shapes, I’ll Never Get Over You, ha ha ha Five Star – Can’t Wait Another Minute. I Just Wanna Make Love To You (oooo don’t sing Lizzie, don’t sing, don’t even mouth the words, people are watching!) (Butt-dancing a bit in my chair. Is it the steroids? Is it the chocolate?) Wish I was at home. No, I wish I was outside walking in the fresh air, bouncing along to the music and knowing that I wouldn’t be out of my head with tiredness when I got in.

12.10pm Charlotte the Volunteer has just arrived, with two bags of sandwiches (that I think she’s made) and her cheery smile. She’ll come round in a sec to tempt me. I might tackle my sushi in a bit. Or just more Mini eggs? My mouth is a bit sore today, particularly Mr Ulcer.

Mini Eggs, lined up for the slaughter

12.19pm She tempted me to a mini crème egg and mini caramel egg (she’s got all sorts of stuff on her trolley!) and probably could have talked me into a sandwich, but I’ve got my own food and there are lots of people here today. The chap next to me wanted a custard slice and a cream cake, but he was teasing. I know how he felt. The chap two seats down is having his last chemo today. I can’t wait to find out what that feels like. Pod selects: La Vie En Rose – Louis Armstrong. He always makes me smile. I bet the duffers in here think I’m listening to hooligan music. Little do they know!

12.30pm Tina’s heating up the pad for the Big Daddy, so I seized the chance for a wee. It is mostly old blokes in here, and the grumpy Polish man who is probably younger than me. One pink wee later and we’re good to go. The drip is changed to a slower one, and Tina says she’s set it to go in over 2.5 hours, not 1.5 as usual. I may go quiet now as it’s easier to keep my right hand still. Might try to eat some lunch, but more to do with comfort than hunger, as the sickness is in the pit of my belly.

…shortly after this I had to stop. The pain that seized my right arm was as overwhelming as usual, and we went through the usual routine: Stop drip, heat pad, start drip again even more s-l-o-w-l-y. Stupid weak veins! I hate you for keeping me in here longer than I need to be. They put a blanket over me and encouraged me to relax, so I ditched the laptop for my Sindy Doll book, and tried to concentrate on that. I finished the mini eggs like a girl on a mission, and gave my sushi to The Hoff, who didn’t have any lunch. I felt nauseous, irritable, impatient and uncomfortable, and freakin’ hot from my vein-pain accoutrements and the plastic upholstery of my seat.

I want to go home. Now.

Just before I was released, Tina plugged me in to a sackful of metacloperamide – the anti-emetic that last time I decided to call “clop”, as I thought it was friendly. I don’t want to be friends with it any more. I think it’s responsible for the very strange sensation I had as I staggered out to the car park. It was a huge sense of panic and restlessness, with a dollop of helplessness thrown in. I didn’t want to sit behind my steering wheel and drive home, I wanted to be instantly there. Failing that, I didn’t want to go anywhere. I wanted the chemicals out of my system and I wanted them out NOW. It was a similar feeling to when you’ve had one too many (booze, but also chocolates) and you wish you hadn’t done it. You want to empty your body of them and go back to how you were feeling before you took your first sip/bite. Needless to say, I shall be accepting some of the kind offers of transport from now on.

I threw myself onto the pre-prepared sofa, and remained motionless for a couple of hours, watching TV and desperately trying to forget what had happened to me today, and how I felt.

For those of you who were wondering what a pre-prepared sofa looks like.

 I took the lorezapam, then went up to bed at 7pm, to listen to the MP3 that my sister Christina had made for me. She is on a hypnotherapy course – not receiving it, but learning how to administer it – so she scripted and recorded a custom-made session for me, to help me relax and to aid my nausea. It’s thirty minutes of wonderfulness and it would have worked a treat, had I not bawled my way through it. I think it was the combination of hearing her voice so soothing and earnest, and the sentiments expressed about being well and loved and free, plus the fact that she had done this just for me and Alec, my “little” bro, had edited it to give it a professional finish. I am so lucky to be part of this talented, caring family.

When the tears abated, I felt warm and fuzzy and dozed off into a lovely sleep, not even noticing Rog when he got in.

The next day went like this:

Wednesday 4^th April

7am: Slept OK but chunk of awakeness from 3-5am. Up at 6.30 making Rog’s packed lunch. Now eating naked toast and drinking Pint 1 of still water so I can take Dex the Steroid, Dompy and Granny (all for anti-sickness.) It’s imperative that I knuckle down to some work today.

7.24: Pint 2 (still) and rolled up in duvet on sofa, desperately trying to catch up with work. 

9.04: 1 xword done, but feeling sick and fidgety. Will try a lean bacon sandwich now.

9.20: Bacon sandwich, 3^rd pint water. Now laying on sofa but still writing crosswords with crappy gameshow on TV to break the silence. Can’t believe how much better a bacon sandwich makes me feel. It’s WW bread, Laughing Cow light, Daddies’ sauce and four rashers of extra-trimmed smoked bacon, cut into soldiers. Goes down so well.

10.15 Tangle twister mini lolly, eaten very slowly because of sore mouth. EastEnders omnibus, crosswords.

11.40pm Still working steadily, good phonecall offering a little more work but the deadline’s tight. Attempting to eat peaches and Total 0% yog with a touch of ginger for the belly’s sake. 4^th pint water (fizzy). Parcel of Sindy clothes arrives. Not allowing myself to look until I’ve done some more work.

Realised today that there are two things I would like to achieve before I die – set up a flashmob and be part of it, and appear on Come Dine with Me. Daft but fun! Oh, and go to America. And become Mrs Roger. If we’re pushed for time, maybe I could make it a flashmob wedding in America, where we throw a dinner party for strangers?  

1.30pm Spinach pasta bake eaten very slowly – not sure it’s what I want - 5^th pint fizzy, Dex, Dompy, Granny

The Lamb is my dealer

2.10pm Skinny Cow lolly, 6^th pint fizzy, racing to meet overdue deadline.

2.55pm Tiny bar of choc for comfort’s sake.

Spent an hour and a half looking at my new Sindy clothes, but suddenly got tired so decided to lay still and watch The Syndicate, which I enjoy.

5.00pm Bag of baked crisps, 7^th pint fizzy. Feel a bit sick and slight heartburn. (Not surprised! Ice cream, chocolate and crisps?!) Keep remembering “bugger, I’ve got cancer”. It happens.

7.30pm Feel really sick. Dompy, Lorazepam, Dex on empty belly. The pits. 

... and this is where the blow-by-blow stuff ends. I did want it to be a fuller account, but the nausea got the better of me and I gave up. It is my “Oh SCREW it” attitude that abounds lately, and I hate it. It’s the reason I haven’t done any proper walking this fortnight, or even any pathetic walking. It’s one of the reasons why I have eaten my way through a stupid amount of chocolate, and I’m very behind with my work deadlines. I’m finding it hard to concentrate on anything, especially when jollop looms. The Monday Before is filled with good intentions, which get trampled into the mud more readily than those of the preceding fortnight. I’m only doing this now because I feel as though I ought to, and I know it’ll be too much to catch up on if I don’t.)

Where were we – Oh yeah, groanin’ and green and hating everyone in the world. That’s nausea for you. Stina’s MP3 would have been administered, but the lorazepam got there first and I turned into a useless jelly, and could only wobble upstairs before collapsing on the bed.

Thursday 5^th April

Worked like a demon on something new but with a tight deadline. Hounded by sickness. I only take Dex on day 1, and Granny on days 1+2, so I was worried about how I would be when the Big Guns stopped. I had some extra stuff called Ondansetron, but I’d run out of Dompy and I was panicking again. I refused to take the Clop for reasons mentioned earlier, though I didn’t know if this was just my imagination. I tried calling the Haematology Unit, but they didn’t answer the phone. My nurse specialist’s phone was turned off (apparently, he wasn’t well. Whatever it was, he had my total sympathy, as does anyone who is ill right now!). The on-call haematologist sounded hassled and uncaring. She said to call my GP, which I did, and after a chat, he prescribed me more Dompy and put my mind at rest, which I think was all I needed. Saint Rog drove all the way into Thornbury to collect my drugs, while I stayed here and made his tea in time for his rehearsal. I think the moral of that tale is “don’t be ill on Maundy Thursday, just before the shops close”!

“Good” Friday 6^th April – Monday 9^th April

Easter is usually an inconvenience to self-employed me. I don’t see it as “ooo let’s have a holiday”, I see it as “darn, I’ll have to stop working for a couple of days”. This year, it was a similar sentiment but for different reasons, including “it’s Easter, and I couldn’t care less”.

I was fed up of inactivity and uselessness, so I scraped myself up from the sofa and blew the cobwebs from my beloved Kenwood Chef, idle since December. I made what the recipe said were Hot Cross Buns, but my impatience and loss of kitchen mojo rendered them Hot Cross Splats. Still, they were tasty, and I managed to eat some sitting at the table with Roger, which is very civilised and a bit of a holiday treat. 

Mmmm, splats. Jesus would be proud.

The takeaway curry we had for tea was more of the same, but I came over a bit funny in the Mumtaz and had to sit down. It was an awkward five minutes later, with a glass of water and waiters hovering even though we weren’t staying, that we went back to chez RogLizzie to yum up our prawn balti, naan bread and spinach bhaji. It felt like a mistake while I was eating it – I didn’t want it, but I bloody ate the lot. (This feeling of shovelling food down my neck whether or not I’m hungry is also abundant. I haven’t a clue what my body wants these days. I can’t hear it. I simply do the things that used to be nice, but they don’t have the same effect any more. Nothing does. It’s very confusing.) Our evening was topped off by the most agonising period pains I’ve ever had in my life. They came in spasms and made me shout out. Probably the closest to contractions that I’ll ever be getting. I did calm down, but had a difficult couple of days in that dept. I’ll not go into detail, but “Sunday Bloody Sunday” probably covers it.

In spite of it all, I did manage a short walk on Saturday. I knew there were newborn lambs in the vicinity, and Rog happens to have known the farmer since they were six. So, when we poked our bonces over the fence to look, he saw us and called us over. For twenty minutes I was in Lamb Heaven, my woes completely forgotten as I stroked the fleecy faces of several youngsters. Just yesterday they’d been surrounded by placenta, so today they were being checked in. They didn’t mind having the numbers sprayed on, but they weren’t all that chuffed with the elastic bands placed around their tails to shorten them, and I can’t say the boy lambs were impressed with their welcome into this world. It makes my eyes water to contemplate it, and I’m already bollock-free! There were also nine 3-week old spaniel pups for me to peruse, and I grasped the one they named “Gizmo” and held back more tears: It was a lovely spring day, there were pups and lambs in the world, and all I wanted to do was go back and lie down. What a waste!

On Easter Sunday I “helped” Roger do a roast dinner for us and his mum. I also helped them to eat it, as the nausea had mostly passed by now. I try not to take anything for it on the Sunday afterwards, and usually manage. The reason is that I get shockingly constipated from all the tablets. This time it was horrendous. Even though laxatives were taken from Day -1, suddenly my trips to the bogatry become little slices of hell: Sitting, but no sh-  …er, I mean, sitting but that’s about it! If any eagles do decide to land, they do so with all the urgency of paint drying, and I just don’t have the patience for this. I try reading, to relax me and make it less boring, but the seat isn’t a comfortable one for long-term use. What’s more, with all the food and extra bulk (thank you senna), my belly swells up like the Graf Zeppelin, which flippin’ hurts.

Sorry, digressed, back to our meal: To my abhorrence, we had to have shop-bought apple strudel, to save me worrying over dessert. I did end up doing some more home-made ice cream and my first attempt at proper Yorkshire pud was not tragic. Scrabble followed scran, and I let Roger win this time, as a reward for his good behaviour! When he took his mum home, I got onto the ol’ Skype and had a lovely chat with my mob back in Margate. Love abounds. I wrap myself up in it and let it carry me through.

Monday was just me and my man, hangin’. We went to Tesco in the rain (revenge for the time he dragged me to Plumbase on a similarly-weathered bank hol…). The Coventry football fans, dumped in Thornbury before the game with Rovers, had scoffed all the fish and chips, so we went home and worked as a team, making delicious pie from leftover roast dinner. We yummed it up with a nice film, and a bit of Bully on Challenge! It was lovely to have Rog all to myself at last. I didn’t feel a bit poorly. All the drugs had done their stuff, all the side effects worn off ( - an exceptionally large eagle landed mid-afternoon, and it was a weight off my mind, to say the least!). I think Stina’s MP3 had something to do with this too.  

So it was Easter all around me, and I hardly noticed, but I had a smashing time nevertheless. I was of course crying when I wrote this in my pseudo-diary:

“The best part has been spending most of the last four days with my bloke. He’s been wonderful. Squeezing me, loving me, making me smile and laugh when I’m crying. Roger Winter, you are the best medicine a girl could have and I swear I’m not going to abandon you. I have not had enough time with you. We should have years left.”

It was that little questioning voice in the back of my head – what if, what if, what if? Residual hormones, or the result of a lot of lovely stuff being over, but it happens some times. When it does, I remind myself about the Fat Lady singing, and as far as I’m concerned, she hasn’t started on her warm-up exercises. In fact I don’t think she’s even turn up. Can I use her dressing room then? It’s very crowded in this one and they keep pinching my coathangers.

* * * 

The words “brave” and “inspiration” are being bandied around me an awful lot, and not in ways that I would necessarily agree with. I know I’m being a Big Brave Girl with every stab of needle and every wave of nausea, but I have to go through all this so I have no choice. As for the I-word, it’s something I’ve always aspired to, but not this way. Maybe, as I consider it to be a compliment, I can’t accept it? (Low self esteem blah blah etc) These people, on the other hand, are doing things off their own bat as a result of my misfortune. That’s inspirational!

·        My sisters Lucy and Christina, and my mini Mamma are taking part in a Race for Life near them in July. L&C are going to run, Mamma says she will do a combination of walking and waddling! I say good luck to the three of them, and I’m hoping that the chemo session directly before they do this will be my last, so I will be able to watch their achievement. http://www.raceforlifesponsorme.org/lucylindsell is Lucy’s page. I’ve heard that some members of Thornbury Musical Theatre Group will be doing similar, but I can’t confirm this yet. I never ever thought that anyone would be doing a RfL with my name written on their vest…

·        Ex-school chum Matthew is going to have a stab at the London Bikeathon in September. That’s a 26-mile cycle in aid of Leukaemia & Lymphoma research. I know that he’s not 100% in the pink either, so this is a massive effort on his behalf, on my behalf. If you agree, sponsor him here http://www.justgiving.com/dr-matthew-williamson .

·        Endurance is one thing, but shaving your long hair off when you don’t have to is also remarkable. That’s what my old classmate Nicki is going to be doing in a few weeks’ time, this time in aid of the Little Princess Trust – the charity to whom I donated my locks. I’m honoured to have been asked to carry out the separation of Nicki from her ponytail, and I will do my utmost to do this. In the mean time, you can help us out by visiting http://www.justgiving.com/nicki-faherty or even (and how simple is this) text BTJ056 to 70070 and you’ve donated LPT a quid.

So yet more good stuff has come out of this bunch of arse. I am very touched, and very humbled. It’s things like this that I need to focus on. Waking up in the mornings can be vile, but these days it sucks. There’s that blissful moment between the two conscious states where you’re no longer asleep, but you can’t feel or remember anything… then it hits you in pieces, like a computer booting up.

Today, my bladder woke me at 4am, as is its wont. I was in that ethereal in-between place, snuggled up with my bloke under the cosy duvet, awake but not aware. Mmmm lovely, I thought. Then I put my hand on my belly and felt the extra padding therein. Oh no, I’m putting on weight! Of course, I remember. Still, that’s OK. I got myself up and made the journey to the toilet. As I stood, my head felt light and cold, and I remembered: Oh no, I’ve got short hair and it’s very thin. At the top of the stairs: My mouth is sore, I can feel that now. At the bottom: Oh yeah, I’ve got cancer, haven’t I? Bathroom door: … and my next chemo is tomorrow, damn. On loo: … so I’d better get a shitload of work done today and some housework, and the washing, and I must confirm my lifts to and from the hospital, and those books will have to be returned to Amazon, and I’ll do Roger’s packed lunch – what are we having for tea? – oh, and I have my counsellor at 4.30pm and that delivery’s coming, yadda yadda yadda, all the way back to the duvet. It’s a wonder I go back to sleep again. I don’t always manage it…

* * * 

I had my second PET scan on Tuesday 10^th April, the results of which I’ll find out any day now. I’ve received some more thoughtful gifts too, but details of both will have to wait, as I’ve rambled on somewhat. (Such intrigue! You’re forced to read the next one now…hahaha!) The lead-up to jollop involves copious amounts of housework and chocolate-eating, which I’d better run along and get on with.   

Packing my bag. There's a kitchen sink still to go in.

Though I approach #5 with the same sense of trepidation as ever, I know it will be different this time. Experience is helping me to improve the experience! I will be chauffeured all the way which means they can put lorazepam in my drip instead of clop, to ward off the nausea, and to keep me calm. To enhance and prolong its effects, I have Stina’s MP3, which is such a comfort. I’m going to take 100% of my prescribed laxatives for a little longer, with lactulose for an extra boost. Plus, with any luck, I shall have the knowledge that a certain arse is definitely being kicked, and it’s only a matter of time before it’s rendered powerless. For good.