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.

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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 as..my head, legs also smooth..no..no..wait. 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!

Capture

Chemo 3

Half way there. Hurrah! That was the last of the fizzybum chemo.

I’m a bit knackered, but nothing a good sleep won’t fix. The hospital car park was a complete mess, apparently those big arrows on the ground are nothing more than a vague suggestion. “You’re going the wrong bloody way FFS!”, then having a total panic that they’ll be sat in the chair next to me for the next 3 hours. I missed the tea trolley. No, not in the car park, things hadn’t got quite so bad that Costa had deployed a mobile unit.  The lovely volunteer had trundled off to dispense tea and Jammy Dodgers elsewhere by the time I got to the ward. I was really quite miffed, if people had only followed the arrows….like I kept telling them to.

I’ll be back after I’ve caught up on tea and sleep. But…did I mention…I’m half way there. That’ll do for today.

I can pee a rainbow

There are many, many things that happen to you once diagnosed. Some people like lots of info and stats and stuff, not me. Tell me where and when to turn up and just get on with it, thank you. I’ve stayed away from Google, and a brief scan of possible side effects with some of the supporting meds convinced me to stick with that old mantra “Ignorance is less scary”. Seriously, anyone who takes those meds after full disclosure is either drunk or illiterate.

I am totally unprepared for hospital stays, I don’t own a dressing gown and am stubbornly refusing to buy one. Like owning one means I’ll have to stay in hospital overnight. I’ve never got the hang of grown up nightwear, NO, not THAT sort of nightwear, behave. I mean matching pyjama tops and bottoms that aren’t comfortable (new ones which haven’t been washed thousands of times), and those unstretchy, button up ones? Who wears a blouse and trousers to sleep in? Old t-shirts and distressed joggers, that’s what I like. I grudgingly bought one pair of stretchy pyjamas. Only one pair because I’m not staying in overnight. My mum sent me a pair, worried for me and worried I would wear the t-shirt I brought home from Oz in 1994. I wouldn’t have taken that, it might have got lost whilst I was out cold.

It turns out there’s a lot more walking involved in a hospital visit than I remembered, the days of cheery porters wheeling you wherever you need to go seem to have gone. You are given a pillow, and a gown (2 if you were too tight to buy a dressing gown), and a set of places you have to go to have various procedures carried out, and a load of forms to be filled out. It’s like the most un-fun treasure hunt ever. Trotting round the hospital looking for various rooms, when you find the right one they invariably stick needles into you and take pictures of your wobbliest bits. Really shit prizes. You have to carry your pillow with you too, everywhere. I think they put tracking devices in them in case you make a run for it. 48 years old, dressed in 2 surgical gowns and nothing else, hugging a pillow, pushing though crowds of clothed people waiting to see their Dr’s. Thankfully we were all very British and completely avoided eye contact.

Lots of the people you have to find put all sorts of weird stuff into your system. There’s the dye that helps the surgeon track your lymph nodes, that turns your pee blue. They said it’d turn my face blue too but I’m Scottish and already pale blue, so that phenomenon was a bit of an anti-climax. Once you start chemo there’s something called FEC(k) which turns your pee red. It’s a bit of a boring day when my wee is straw coloured now.

I pointed this out to my husband who declared “Bloody Hell, you’re peeing like a unicorn”. Which was funnier than…

“Fat and bald eh? Not so much fun” Did I mention he works in IT? I glared and took the green leafy shit off my plate and put it on his.
“Yes darling, how will people tell us apart?”

Before you send him hate mail, he has never yet refused to go and get me wine.

I did end up having to spend one night in hospital, despite all the precautions I’d taken to avoid it. It wasn’t so bad, the menu was huge and the food better than you’d think. My room mate was fun, she was having new boobs whilst I was having one removed. We shared the same name, and I suspect we found that much more amusing than the nurses trying to dispense the right drugs to the right patient. “Nope, the antibiotics are for 2 boobs, I’m one and need the pain killers”, maybe that’s only funny if you’re still a bit hazy from a GA.