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”.

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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.

 

“Write a blog”, they said.

Clearly none of my friends have done battle with WordPress. I want voice recognition tech, so when I swear my instructions at the keyboard things happen like I want them to. I don’t want to watch a tutorial, the last tutorial I watched was some woman who managed to take 15 minutes to explain how to fold a fitted sheet. 15 minutes to fold a bloody sheet! I could have ordered a new one on Amazon and had it delivered faster. My husband is an IT person, he takes a dim view when I start banging the mouse on the desk. Not that I care, it just means I have to shout at him and the screen. It’s annoying.

Given the events of the last few months you’d think I’d have learned a bit of patience, or mindfulness (is that what we’re calling it now?). I haven’t.

In January, after a 3 week wait, my biopsy results showed I had breast cancer. Fuck. After quite a few cysts and other nameless anomalies you stop listening when the Dr says it’s nothing to worry about, you’re gathering your bag and coat and getting the hell out of there before they change their minds. This time I was the statistic. FUCK. No, really. FUCK! This is not in the plan, not that I have a plan, but if I did this definitely wasn’t in it. Again, FUCK.

“Yes, yes, mastectomy and chemo. Can we start now? it’s instant, right? Whoosh down to surgery and then plug me into the..the..the radioactive stuff. I get a hat and skinny and we’re done by..Easter? How long between sessions, can I have them all at once, I’m sure I can do that”. I was fairly sure that’s what was going to happen because breast cancer is so common and everyone and their brother is fundraising to wipe it out.

It turns out the process is somewhat slower. The surgery was pretty instant, but then you fall into a pattern of waiting 3 weeks between each step. Surgery to results. Results to healed enough to start with the big scary drugs. Each session of chemo is 3 weeks apart if you manage to stay healthy and infection free. 3 weeks. I’m developing a very irrational dislike of 3 weeks.

It’s not just the 3 weeks, the list is growing but it’s not the things I’d expected to hate. The chemo isn’t as awful as I’d feared. So far I’ve been lucky and coped reasonably well. A few shit days and then recovery. That’s do-able.

Being bald is ok once you get used to it. It’s actually an advantage in the morning. I’m last in the rota to get in the shower, after I’ve cattle-prodded the rest of them to achieve a level of cleanliness that’s acceptable. There were days where I never actually combed my hair, but it was always washed. There’s 5 minutes I’ve clawed back, ‘cos ALL the hair disappears. No shaving. We’re screwed once it starts to grow back. The schedule has gone, I’m not sure you can ever get that back. “I’m sorry the children are late again, but it’s sunny and I had to shave my armpits so I can wear a sleeveless top”.

The things I hate:

Steroids. I know they’re keeping me healthy but they don’t half make you eat. Through mouth ulcers and all. The food must go in, or the hanger will finish us all off. Who bloody knew that cancer treatment makes you fat (ter)? Gone are my dreams of getting into the size 10 jeans still stashed on the top of the wardrobe.

Headtilters. it takes every ounce of self control I have not to poke your head back into an upright position.

Wheat bags. It’s taken me weeks to work out what makes my stomach turn on the chemo ward. I knew it was a smell, I just didn’t know what the smell was. I am very sorry to the tiny, very old, little lady who I was blaming. There goes my karma again. It’s the microwaved wheat bags they use to raise your veins. I’m taking my own hot water bottle and Penhaligon’s Luna next time.

That this hurts and worries my family, especially my children. The only time I’ve got angry about it is when they got upset. How fucking dare it upset my children.