Pass me the Sharpie

I spent a long time looking in the mirror this morning. Pat’s been doing the morning school run since I started chemo, which is very nice of him. Before any of you imagine me lying in bed of a morning, enjoying a lightly boiled egg, fresh coffee and a pain au chocolat whilst the children quietly leave for school. Dream on. It just means I can shower after they’ve been thrown out the door, moaning about children’s rights and how bloody UNFAIR everything is. When they are Prime Minister (that campaign will be a fight to the death), things will change. They won’t make school last so long. Weekends will be 4 days long. No homework. PE every day. Given that their policies are very similar I did suggest they could work together, they weren’t keen.

Anyway, this means that I have Time To Shower. In peace and quiet, if I remember to close the bathroom door to stop our weird spaniel sneaking in and licking my ankles. Fair warning to anyone who might stay with us, close the door.
So, I was staring in the mirror thinking something looked odd. Apart from the bald head and chubby steroid cheeks. I look…lopsided.

My right eyebrow has thinned out more than my left, and in true Sod’s Law style, it’s not just thinning, it’s shortening from the end nearest my nose. I’m about 1.5cm out of synch. Symmetry really is a big factor in how you look, those magazines aren’t lying. I need to find a beautician who can draw my brows in, but gently. I’m not keen on the fuzzy felt look so popular right now, especially when my fringe is no longer here to soften the look. Any of you any good with a light brown Sharpie? Sharpie seems good, nothing washes that off, I have 2647586 white school shirts proving that point.

I don’t need this right now. Son 1 is rowing on Saturday. In a regatta. The regatta rules sent me into a flat spin. There are dress codes (no specific mention that women must have hair and eyebrows, but they might think that’s a given), picnic pitches to buy (just a bit of grass, the picnic is not included) and men must be in suits. Pat is IT, he doesn’t wear a suit unless he’s going to an interview or a funeral. His idea of smart is a t-shirt less than 10 years old. I seriously considered loading the boat with bricks for the time trial, or making him take the weird spaniel as cox. That dog weighs a ton when wet.

We got a reprieve, since #1 is a para-rower he gets to get in his boat (there’s a term for that but I’ve forgotten what it is) from the other side of the river, where it’s not all muddy and stuff. That means we can stay in the non-dress code area. Thank you son with wobbly legs. This rowing thing is a learning curve, and I’m grateful for the chance to watch and see before having to dive in. Not actually dive in, I’m fairly sure that would be frowned upon (especially if I wear The Wig, and it floats off down The Thames). Stay away from the Prosecco, stay away from the edge, grow hair and eyebrows, is my to-do list for the next one. If he doesn’t sink in this one. Oh, “Don’t shout at me mum”. No shouting. The potential to fuck this up and really annoy Son 1 is immense, I might need some Prosecco just to take the edge off.

No, I don’t like this one.

You know when you expect to find something really tough, but then it’s not as tough as you thought it might be, so you get a bit cocky? Then the not-so-tough-thing flexes it’s muscles and smacks you round the back of your head and shouts “Gotcha!” That.

I wondered if sick was worse than flu, side effects of last chemo were pukiness and this one is flueyness. I thought it probably was. I can only assume I have never had the flu. Fuck Me. If that was the equivalent man-flu then I need to re-think my sympathy levels.

You have to watch your temp on chemo. If it hits 37.5 you’re calling the oncology people, and they’re sending you to hospital for blood tests. At 3am on Sunday morning I really REALLY didn’t want to got to A&E, but it didn’t matter how many times I stuck that bloody thermometer in my ears (I tried both, multiple times) I was going to have to call. Bastard bloody bollocks. I did feel a bit shit, like when you’re coming down with a cold. Shivery, achy, but these were known side effects of chemo, so it must be that. They’d probably tell me to have a drink and go back to sleep. I called, the nurse was amazingly chirpy for 3:30am on a Bank Holiday Sunday (I spent a while checking my temp). She ran though a host of symptoms, I had a few but thankfully not some of the more gruesome ones. I’m more convinced than ever that I’d be a really shit nurse, cough something up in front of me and I’ll be sharing the sick bucket with you. Gross. She checked with the Dr and they thought is was probably my chemo hangover, I should go back to bed and check again in the (proper) morning. Hurrah, no A&E for me. I positively skipped back to bed and settled down. All sweaty and smiley. No A&E do-do-do-do, clever me. The phone rang, I opened one eye and glared at it, 4am phone calls are never a good thing. “Mrs O, the Dr has been thinking about you and would like you to go to A&E. She’ll call ahead so they’ll be waiting for you. It’s safer to check you don’t have an infection”. Fuck it.

I know, I know. It’s for my own good and I should go, I know. I went, ok? I just wasn’t thrilled about it.

Got everyone up. Getting a 13yo out of bed at 4am is quite something, especially if it’s not to go on holiday. That’s the only acceptable reason for getting up at 4am.

Our local A&E closed years ago, so it’s a bit of a trek. We decided that they’d drop me off, and I’d call once I knew what was happening. Fast track or not, no-one gets out in under 3 hours once you’ve booked in. Dragging 2 sleepy kids in to wait was not an option, and you don’t call people at that time. Well, I don’t. I just can’t. Sorry.

I don’t think I’ve ever been in an A&E at 5am on a Sunday morning. If I have I’ve wiped the experience from my mind. I sometimes watched Jeremy Kyle when on a treadmill in the gym (because the dreadmill alone just isn’t miserable enough), and I wondered where on earth they found the people on the show. Now I know! Apparently there is kudos and bragging rights to getting punched in the face and needing to have your nose scaffolded back into shape, or your head glued back together because someone stuck a knife in it. A few beers, bit of a fight, then pile down to A&E to carry on the party. Top night out. The holding area before you get through to the treatment area was scary as fuck. I was fast-tracked, and the nurse apologised that I’d had to wait at all but they’d had a stab victim to deal with. That statement makes you check the cleanliness of the bed before you sit on it. I was fairly sure by this point that I definitely would have been safer staying at home. I sat on the edge of the bed and clutched my bag, feeling at least 93.

Blood tests done and they’re trying to find me a bed,  I’m getting IV antibiotics for sepsis. I slid off my perch in panic “I have sepsis???” “No. no. We do this for every chemo patient just in case”. “Oh, ok. Thank you”.

A staff nurse came in looking triumphant “I. Have. Found. You. A. Bed”, the poor woman looked exhausted, she was most definitely in more need of the bed than I was, and I was feeling really shit by now. This is never going to be a political blog but anyone questioning the work ethic of the frontline NHS staff needs to be pulling weekends and nights in an A&E unit. No experience, no opinion. Those people are heroes. If I’d been on the reception desk I’d have yelled that there was free beer outside, then locked the doors behind them, anyone left clearly needs treatment. So, a career in the NHS probably isn’t for me.

I was shown the bed and given a gown and asked to change. At that point nose-boy and his glue-headed mate and friends piled through too. “Yeah, do you mind if I keep most of my clothes on under this. Just for now?” “No, not at all. lots of people say that”. Seriously, A&E is the best party venue they can find? They thundered off to another part of the hospital fairly soon though, maybe someone did put beer outside.

Here’s where it gets slick though. Our harassed, under-staffed, knackered at 5am, totally amazeballs NHS. I had, in the space of 40 minutes, a drip flinging anti-biotics into me, an ecg done, a porter arrived to trundle me 50m to x-ray to check my chest was clear (I offered to walk, they said no) and I was delivered back to my bay to be given tea, toast and marmalade. I almost burst into tears at the sight of that tea and toast. They left me to doze whilst the ab’s finished going in.  My nurse, Nora, checked on me multiple times, the junior doctor visited me 3 times, and the consultant arrived at 8:15 on a Bank Holiday Sunday to tell me my bloods were fine, ecg fine and x-ray clear.  I could go. I had a prescription in my hand within another 15 minutes and had called Patcabs to come and get me. I was home just after 9am. Way before any of those people looking after me were, I’m sure.

So. I don’t like the side effects of this chemo. I know I’ve got 2 more rounds of second guessing my temperature. I might sleep outside. I proper yelled at Pat later that day because he hadn’t hoovered, clearly some of the drugs had messed with my mind and I was expecting voluntary hoovering to happen.

Except it had nothing to do with hoovering. I’m just being a petulant brat because I am fed up of being ill. I am grateful for the NHS, so SO grateful, and for the science that will keep me well. But, there is no getting away from it. I AM FED UP BEING ILL.

Pat will tell anyone I am not only a shit nurse, and receptionist. I am an even worse patient. Unless you bring me tea toast and marmalade.

Ice and lemon in your snake oil?

After diagnosis time seems to slow. Oh, the waiting! Some bits happen quite fast, but even a week can seem like an absolute eternity when you KNOW. Well, it did for me. I wanted to do something, help make it all get better faster. But..what can you do?

Disclaimer: I’m not saying ANY of the following things help. I’m not getting paid by anyone,  or getting any freebies. Damn it.

My first ‘thing’ was to buy cannabis oil. I heard about it from a friend, because it had cured her friend’s dogs cancer when the vets had tried everything ‘normal’. She spent a long time explaining that she wasn’t comparing me to a Staffy. Not even a very cute Staffy who is now healthy again. Where to get it though? I didn’t keep in touch with that bloke from school, and he doesn’t seem to be on Facebook. It turns out you can buy  it online, it’s legal if the whizzy stuff has been taken out. Who knew? It tastes disgusting. My gums haven’t bled since I started taking it though, so my dentist is happy. Which makes me happy as he’s stopped trying to sell me mouthwash that’s more expensive than a bottle of artisan gin.

Then the cans of deodorant went, because they’ve got bad stuff in them (so I’m told), but none of us want to stink. Another revelation, the alternatives work. Like with the regular stuff in cans, you just have to experiment until you find one you like.

Queasy drops. These arrived daily from friends everywhere. I was sceptical. Something that looks like Spangles (can you still buy Spangles?) will stop the stomach churn? Yeah, right. Well they did, and I’ve barely touched the proper anti-sickness meds I was given. I don’t like the green tea and lemon ones though, I hate green tea. If you like them let me know, I’ll send you them all.

Juices. And the powerful juicer required to mash the crap out of kale. You have to have kale, it’s the new wonder green. I strongly suspect it has no magical powers, but there’s a big kale swamp somewhere which a clever marketer has shares in. Fling kale, beetroot juice and a heap of other stuff in the juicer and feel smug that you’ve got the day off to a healthy start. Again, this generally tastes gross. My wonderful local running shop saved the day by giving me a bottle of Cherryactive to kill the kale taste. If it works for people who can run 26.2 miles in a stupidly fast time, I’m in.

Charcoal toothpaste, you all need to try this. For no other reason than you’ll be horrified at how much further than your sink the spit goes. That white toothpaste hides the splatter.

Olive leaf, used by a triathlete I know to keep her bug free as she spends so much time swallowing river water.

And a whole heap of other things. No idea if any of them will help, but they won’t hurt and didn’t break the bank. So, if it keeps my head in a better place, that’s a good thing. It’s something to do whilst you wait.

I stopped short of onions placed all over the house. The dogs would eat them and then puke, and that’s not helping anyone. Also, I’m not sure I want to live in a house that smells of onions. I prefer a nice diffuser with something flowery in it.

I’m sticking with my regular snake oil too. Red wine is full of those anti-oxidant things. Guinness is good for you, not sure why but I’m taking them at their word, and gin and tonic, well the tonic has…quinine in it doesn’t it? I have no idea what quinine does but they got quite excited about it in an episode of Tenko. If you find that you’ve run out of ice I can recommend frozen blueberries instead, not peas. Frozen peas are for when you pull a muscle, and you slap the bag on the sore bit, not put them in your gin.

Try the charcoal toothpaste though, and recoil in horror.

Right, eldest son needs supplies for school tomorrow so I have to go shopping. I need a protractor, black pens, and bottles of gin and tonic. The last two are not for him. You knew that, right?IMG_5676

How much?

They weighed me in hospital yesterday, I wish they’d drugged me before they did that. I’m further than ever from losing the baby weight (youngest child will be 12 next month – years, not months). “It’ll get worse”, said my cheery nurse, “we’ve upped your steroids for the next 3 sessions” I glared, “I hope you’ve filled the biscuit tin then”. I’m thinking of rearranging the furniture at home so there’s a comfy chair by the fridge.

I was talking to a lovely friend last week, he’d had his leg amputated earlier this year. He put on half a stone during recovery. He was quite disgusted he’d lost a leg and gained weight, so he had some sympathy for me losing a boob and my hair and gaining considerably more than he has. A weird conversation, how things change…

When you’re a teen you can’t believe how much time mums spend discussing what’s for tea, I’m Scottish and grew up on a farm, so we had tea. I live in the Home Counties now so my children have dinner, I’m not sure how the change happened. My youngest asked if he could have sushi for his packed lunch this week, I’m thinking of re-homing him. He’s thinking of emailing Jamie Oliver and reporting me for excessive use of tuna mayo sandwiches. Anyway, all my mum, and my friend’s mums, ever seemed to talk about was, “What to have for tea”. We laughed at how dull that was and how we’d never discuss such dull things. Not five minutes out of the maternity unit and the online babygroup  was awash with feeding worries, and so it began and continues.

It seems I’m headed into a new phase now though, where ailments and health issues are the new thing to talk about. I suddenly know more about other people’s ailments and those of their loved ones than ever before. It’s ok, none of them have been gloomy this week, just info that is unrelated to me or cancer. I’m always a bit wary when I meet someone who might not be aware just how much I’ve been told about their ‘issues’, I’m really bad at remembering ‘things I’m not supposed to repeat’. Chemo brain is not helping with this.  Please stop telling me things I’m not supposed to know.

I think I know what comes next. Two old ladies were sat opposite me on the ward yesterday, whilst I waited 6 hours to see if I reacted badly to an injection that’s part of the next lot of treatment. I didn’t react at all. I did react to peeling my face off the plastic recliner I dozed off in. It felt like a few layers of skin stayed on the chair.   Anyway, the next phase is when you have to come up with an gossip-worthy illness and/or an interesting death. The two old ladies spent ages running through a list of friends who were ill and friends who had died. There was a definite kudos to doing it differently. Something to think on.

Since I didn’t react to the injection I had the new chemo today. No more fizzy bums. I won’t miss those. It was by drip this time, so I was in and out of there in just under and hour. Result. Met Pat in Bill’s for lunch, since it had been at least 2 hours since my pre-chemo snack, which was shortly after my pre chemo breakfast. I did offset some of that by running up the stairs (5 flights), I figured that would help get my veins working good and proper. I did consider stopping off at the cardio ward en route but made it in the end. I did have a few rests as there’s a lot of adjusting to be done when running in a non-sports bra with one side only stuffed with cotton wool.

Which brings me to my most exciting part of the week. On Monday I met the Plastic Surgeons. The reconstruction crew. I was very excited about this. Obviously the breast surgeon and oncologist are the most important people, but this bit is like a great big fat cherry on top of survival. A little ‘Yay me!” after the tough bit. There are more ways to build a boob than you’d think, shapes and sizes to be considered, implants or using any (hahahahahaha) fat stores on your tummy. They could tell which I was leaning towards. Maybe those steroids are dual purpose. Nothing happens immediately, after chemo and radio I need a recovery period, but that’s ok, there’s plan and timescale in place.  The priviledge of being here to wait is absolutely fine with me.

And no, I’m not telling you what I weigh. Not unless you bribe me.

You’re having a bloody laugh

Ankle hair, the bloody cockroach of body hair. nothing kills it.   I am bald, shinily bald. I get confused in the shower these days, shower gel covers all needs and once I’m washed, well, that’s it. Shampoo is not needed, armpits are as smooth head, legs also Oh, you are taking the piss now. Stubbly ankles! My body has been flushed with stuff that kills everything (hopefully) and yet ankle hair survives. Sitting there, gloating. Being all thick and stubbly. If I go out without a hat I’m fairly sure I can still wear cropped jeans, no-one will notice my ankles…they’ll all be blinded by my shiny head.

No, no, can’t do it. Long jeans required. I mean I can’t go about with hairy ankles on display, I don’t care about my head.

Should not have binned my razor. But, it’s Sunday, and everywhere is closed apart from the off-license in the village. I’m pretty sure he sells Bic razors. I’ll have to buy wine too,  as I have no cash and you can’t swipe your card for less than £10. I’m honestly trying to look upset about that.


I said “STOP!”

Hello there world! The fog has lifted and I am back in the land of the not chemohungover. I was back yesterday, but the wine test went on a bit longer than planned, then I fell asleep. The wine test determines whether the fog has truly lifted, or it’s just a brief break in the clouds. It’s really a sniff test, the result of which is either a stomach lurch or a general sense of “Ooooo, wine…hurrah”. I can rarely stop at a sniff if the latter happens. I’ve never actually tried.

Despite the feeling shitty bit, it’s been a good week. I’ve had deliveries of food, wine, cake, chocolate and various other goodies. Surprise gift deliveries, not Ocado and Amazon Prime. OK, Asda, not Ocado.  Which reminds me,  Asda have this click and collect bay where you pick up your online shop. You wave that squiggly square thing in your confirmation text at the machine and bugger all happens. So you type in the confirmation number and bugger all happens again. You press the button to speak to someone, and neither of you can hear wtf the other is saying. You stomp into the shop and ask someone to bring out your order. It’s excellent, every bit as frustrating as actually doing the shopping yourself but none of the impulse buys. The man in the next click and collect bay was made of sterner stuff. His wife had told him to collect the shopping on his way home since he was passing Asda anyway. I know this because he had the call routed through the car and it was very loud. He got through the squiggly pattern scanner, the order no., and the shouting into the machine, and his shopping was brought to him, happily the car phone system allowed him to carry on being sarcastic to his wife. I was quite sad that she couldn’t see that he was lying his ass off and had not emptied the boot, he was frantically packing packets of pasta and loaves of bread around all the crap she’d told him to move. I think the state of the bread might have given him away once he was home. You don’t get that sort of entertainment with an Ocado delivery.

Today I had an ecg. One of the meds I’m about to start can temporarily damage your heart (did I mention that I am a complete believer in the Ostrich approach to side effects?), so ecg’s are going to be a thing for a while. The only blip was when she asked me to turn over and I slid off the edge of the very narrow bench, I think it’s ok if your heart beats a bit faster when that happens. Also, an 8:40 am appointment when you have two kids to get to school for 8:35?!?   My heart is functioning efficiently and I have a low resting HR. Hah, that’s the HR of anyone who has got their kids to school ON TIME, good job I wasn’t hooked up to a monitor in the previous hour. At 8:40 it’s not so much resting as completely fucking exhausted. Then I saw my oncologist who told me I looked amazing and really suit being bald. This is all on the NHS, life saving and ego boosting. I love our NHS. I mentioned my hatred of the rubber teeth injections, and we can reduce them a little since my immune system is holding steady. I wished I’d taken her flowers, or chocolates, or both. Not wine, I rarely give wine away.

So, the  Stop thing.  The Waiting Room. Full of people who are in some stage of being treated for cancer, and you just don’t know which ones are the nuts. You just know there are nuts. One lady was practically vibrating, you could see the fear.  I had my usual moan about the heat and opened the window and she grinned, so I knew she wasn’t a nut. She nodded to my shiny head and asked if she could ask me about my treatment. What a legend of a woman, asking if it’s ok to ask when she’s so scared you can feel it. I said yes and she asked and I answered. Her questions were respectful and I was careful to emphasise that everyone’s experience is individual. There’s no way to know how your system will react, but it’s not necessarily going to be as bad as you hear. Wait and see, so hard to do but far healthier than focusing on everything that could happen.

The only bit of advice I was definite on was to manage what info she allows other people to give her. Manage the nuts. The people who, on hearing you have cancer, want to tell you all the horror stories. The side effects they experienced, the relatives who didn’t make it, the complications and residual effects. The people who relieve their stress by passing it to you. Don’t be afraid to say “STOP, I don’t want that information just now. If I do I will ask my medical team or a trusted friend. Don’t give me your worries, I have enough going on just now”

The lady left, I think I did OK as she said she hoped she’d see me on the ward and we could maybe laugh a bit whilst getting on with getting on. 

That’s when the nut piped up, she’d been sat in the corner listening. “I’m a bit further down the line than you and………”, she went on to list the side effects I have coming, the risks of re-occurrence and the fear of that happening, her worries and fears and how I would feel the same. She dumped the whole bloody lot in my lap. I’m going to spend the weekend practising my resting bitch face with my eldest son, he’s 13 and is a MASTER at it, because I think mine must be failing. It used to be excellent, maybe my thinning eyebrows are the problem and they’re not conveying the WTF that my brain is thinking.

If that doesn’t work I need to find the new lady and say we’re no longer going with “STOP”, we’re going with “Shut the fuck up”.

The Party Bag

After the car park gridlock, and the missed Jammy Dodgers, chemo 3 followed the regular plan. Apart from the tea and biscuits. I’m still getting over that. I made the rest of the ward suffer by ordering an egg sandwich for lunch. Next time they won’t let her leave until I get there.

Checklist of any bad reactions to Chemo 2. “Not really, my head itches like crazy in the 2nd week though”, apparently that’s not usual but no-one looked concerned, less concerned than my family do. They all edge away from me. My boys are well aware of the Nitty Gritty comb, they’re taking no risks. Pat is bald, but wary. “I DON’T have nits, we’d be able to see them..selling teeny tiny copies of The Big Issue”.
“Oh, yes, I do ache. My arms and legs both hurt, especially my hamstrings and shoulders…hang on. No. That’s not chemo, that’s the pilates class I did at Harri’s yesterday. Stand down, bring on the drugs”.
I did mention the injections I have to do at home make my teeth feel like they’re made of rubber. I detest those injections. Have you any idea how hard it is to inject yourself whilst not looking? I should be grateful though, they do..something…to my bone marrow and can often make your bones ache, a short burst of rubber teeth is a bit of a result. I tried to look less disgusted and more grateful. I think I failed spectacularly.

Chemo is cold (they keep it in the fridge), we avoided the stinky wheatbag stomach churn though, I remembered to bring my own hot water bottle. The wheatbags apparently start life smelling of lavender. After a gazillion pings in the microwave they smell like hell. My stomach churns just typing that. After all this is done I’m fundraising to supply old-fashioned hot water bottles to chemo wards everywhere. That tea lady has access to hot water. The cold chemo makes your veins contract, hence the stinky warm bags of yuck to keep them open. <heave>.

Once we were done, I got my party bag. They’re ever so good, I never go home empty handed.
And, as much as I bitch and moan, I love our NHS. Please save our NHS. We’ll all (mostly) be a bit buggered at some point without it.

Here, not sugary snacks, just lifesaving science, Harri’s fab pilates book and lovely tulips from one of my best friends. They’re beautiful and hide a little of the chaos in the background. An excellent party bag haul. I drank the Guinness. It’s allowed.

Hmmm, no cake. Someone send cake!