DRAIN IS OUT!!!!!

Doogal-Dwane is no more. He currently resides in a big yellow bucket in the boot of a random wonderful nurses car. He will be plopped in an incinerator soon to turn into particles of drain wormie that all around will breathe in with their morning cornflakes. I’m sure the Sun could make a tabloidy headline out of that ; )

Anyway tis gone. It was like having a fiery poker pulled out but was in actual fact a few millimetres across and no more a centimetre inside. I can now do a slightly more free old lady shuffle and wear clothing that can be put on over my head. Toot toot!

Time to paaaaarty.. well OK sit down stairs in a relaxed position and get up to pee with careful abandon. In my book that’s a party.

My Little Drain Worm

image

Meet Drainie, temporary name whilst we think of another. Mum just calls it ‘Urgh’ and Adam thinks it should be ‘Fred’ because apparently that’s what I call all my inanimate friends. This is not the morphine talking. They took all the good stuff out of morphine so all its doing is taking away the pain, making me sleep and giving me constipation. Drain Worms are a thing. But for gawd’s sake don’t Google it. The results will be inaccurate and there are some things you can’t unsee.

In the breast cancer world, getting a Drain Worm (coagulated blood inside the tube that takes fluid away from wounds) constitutes entry to an exclusive club. There’s competitions to grow the biggest one and it even has its own hashtag. I am their latest enthusiastic member.

I know you’re all thinking sentences that include the words ‘yuck’ and ‘gross’ but what my friend Drainie has done this week is keep me company and keep me connected. Because this week SUCKED. The home of Drainie has been a constant source of tearing and ripping feelings. The only way to cope was to stay as asleep or drugged up as possible. When I posted about Drainie it opened up a conversation with strangers in the same position and hearing that others were in pain normalised mine. It stopped me panicking. It even made me grateful because some women were in an even worse off state. Who knew that feeling like you’re being gutted by a knife whenever you reached for your phone was the minimum discomfort.

It’s also another one of those amazing human being things we do. We find others. We name it. We make a club. We laugh. Thank you humans for being awesome. Now there’s still this matter of a name for Drainie..

Better now

Hi my lovelies. Just wanted to let you all know that the doc came and gave me a very nice supply of morphine. It took a bit to kick in but the pain is mostly gone now and I can at least get up to pee. I’ll also be taking some precautionary antibiotics in case the drain site gets wonky. She did have a peek at the wounds and they look good. I’m healing well. I just need to manage the pain and then in a week I can get this drain out. Horrible thing.

Thank you for all your messages. You’re awesome as usual. And BIG kudos to superhubby and the parents for getting me through this blurry shite day.xxx

It’s complicated

Just wanted to let people know that Heidi is home from hospital, but unfortunately is in very severe pain.

We’re just waiting for the doctor to come and examine her as she shouldn’t be feeling this much pain and is already at maximum dose of her existing pain meds.

The choice was to either get her to hospital which would involve moving her, which would be agony for her, even if paramedics handled it. Or wait for a home visit from the GP surgery, which takes longer. Both are crap options, but I understand why we can’t just get a morphine prescription over the phone. Especially since Heidi says the pain is spreading and she also has an elevated temperature (though not fever yet).

A doctor will be able to tell if she needs to be moved to hospital or not. Regardless, we need to get the pain down before she can move or be moved.

There will need to be a decision about her drain as well, as it’s unclear whether removing it would improve or worsen her pain. There are pros and cons to either action, and the community nurses didn’t exactly inspire confidence there.

Anyway, I know a lot of you have been trying to get in touch, and I’m sorry if I’m not keeping up with it, but I’ll try to keep updates to the blog as then everyone can follow that for news.

Thanks all!

Adam

Morphing it up

wpid-wp-1437424270120.jpegHallo bosomy types. I thought you’d appreciate a reassuring photo so here I am with my friend morphine. Alas I am a very sensible recoverer from general anaesthetic and not a single note was to be heard. Although I was informed I had woken up previously and spoken to my surgeon which I have no memory of. So there could have been some rock ballads involved. I’m sure he will delight in telling me tomorrow.

The anaesthetists were a bunch of fluffy bunnnies (I had three). Of course my veins didn’t cooperate so they gave me breathable drugs to make me pass out. Strangely it wasn’t the dreamless out cold feeling I heard others describe. I did feel like I was asleep and dreamt. I woke up in a different and as equally unattractive gown so something icky probably happened to the original one. It is a very weird feeling to know things happened to me and I don’t know about it.

I’m back on the ward now with two other lovely ladies. They’re telling me funny stories of adventures in hairdressing and threatening to evict any snorers ; ) They’re so cool. Generally it’s very quiet here and there’s a severe lack of buzzy beepy sounds. Hooray for that. They will be waking me up every three hours to check things are OK so I don’t think a good nights sleep is in the offing. But the nurses keep mentioning that I might be out tomorrow if my drain is below 40ml. So come on wound, dry the hell up ; )

Thank you for all your lovely messages. It’s so awesome to go to sleep and wake up to so much love. I’m so happy that’s over. Big phew!

All packed

image

Heart pillow: check. Boob accessible tops: check. Hot flushes spray: check. This is the weirdest suitcase I’ve ever packed. With this strange collection of things I’m headed to surgery tomorrow morning. First I have to get a needle localisation at 9:30am in the local breast clinic. This is a thin strip of wire inserted into the tumour to act as a guide for the surgeon later. Then after that bundle of fun I’m off to Haywards Heath for the surgery. I arrive at 11:30am for the pre-op process. I envision lots of reassuring uniformed people giving me massages and cuddles. I suspect they’ll just be weighing me and removing all signs of my individuality as a human being. Except my glasses, those I’m allowed to keep.

The surgeons go off for lunch. Alas I am banned from food and water. Then I’ll be wheeled to theatre at 1:30pm. The procedure was inspired by a cosmetic surgeon called Louis Benelli. They will make two incisions around my nipple, remove the bits between and lift up skin and fat. They’ll cut the tumour plus a margin of 1cm around like taking a slice of pizza.Then they smoosh the whole thing back together into a boob shape. It should be done and dusted by 3:30pm. Adam will update here with news.

Apart from the obvious niggle/terror of dying under general anaesthetic and never waking up again, I’m also most worried about waking up and singing cheesy pop songs whilst declaring love for random nurses. This is a real possibility according to my cancer mates. In classic British style I am as nervous about potential death as public humiliation. I’m OK with that. See you on the flip side lovely buds.

Pumped

My heart is well. I don’t mean in a metaphorical way. I mean it’s fit for purpose, healthy. There was a chance it wouldn’t be when I went for my third echocardiogram today. The appointment was one of the first this morning and my lovely friend Kata came with me, primarily to inject another a added human presence to the experience. So far my interactions with sonographers has been a mixed bag. I’ve had an even split of two bad encounters and two good with this particular flavour of healthcare professional. One ran out of the room to get a nurse when I started crying inconveniently and another barely said two words to me. So there was a good to fair chance today’s person was going to be an issue and I’ve found that having a second warm body in the room can draw out some deeply buried compassion. It boded very well when the technician bounded out with a huge smile on his face, looked me square in the eyes and held out his hand for a reassuring handshake.

Thank goodness he turned out to possess some social skills because it’s an intimate experience that in the hands of an incompetent soul can become awkward and violatey feeling. Keeping me chatting about inanities, he threw into the conversation that it was time to get my kit off. I stripped to the waist and this time was given a gown that brought a tiny feeling of still being dressed and in control. I lay down on the reclined chair/bed and he placed three sensors on my chest area attached by wires to the equipment. Then he lathered some gel on and used an ultrasound (similar to those used to see babies in the womb) and pressed REALLY hard to get images of my heart. If you can picture it, I am on my left side with my arm behind my head like I’m in a buxom cyborg in a Renaissance painting. The technician is pressed up against me with his arm over my chest pushing the ultrasound wand hard underneath my left boob. Did I mention it’s intimate? You can see why it’s so important that the person doing this is making you feel very much at ease. Not just to get good readings (if I’m stressed, my heart will be too) but also out of simple human decency. This is the kind of image he got.

echocardiogramMy heart looks like a pear. I saw it beat on the screen, expanding and lumpy. The technician said the different parts of my heart were beating in unison. That’s good. I took my prize of a good experience with him and a functioning organ and left happy and relieved.

The reason for all this is that the drug I’m taking every three weeks for another year, Herceptin, can be a bit silly. It targets the cancer cells much better than chemo does but it does make mistakes sometimes and can beat the crap out of healthy cells, namely the ones in my heart. So while it’s doing a good job of killing the evil lump, it could also give me congestive heart failure. Hence the regular trips to the cardiography department.

Before we went to the appointment I had a moment. I was brushing my teeth and as I leaned over the sink to spit and the thought of surgery next week flitted across my mind. In the seconds it took to raise my head and look into the mirror, a surge of excitement passed through me. Much like Buffy in episode Weight of the World when she’s catatonic and Willow goes into her mind to bring her out. She is stuck because there’s this tiny moment where she thinks if Dawn dies, then she’d be relieved. She feels horribly guilty for it. This moment.

buffy moment

 

Anyway it was just like that moment but without the sister dying bit and you know, completely the opposite feelings. But just the same otherwise. I felt a fleeting thrill. It was the first time I had felt anything other than going through the motions practicality or sheer terror about the upcoming operation. I’d like to say I have more words to describe or talk about it. But it was just a simple, all encompassing wave of total anticipation. And it felt good. So I guess my heart is well. Metaphorically speaking too.

Signed away

I’ve just signed away my lymph nodes and a good chunk of boob. The nice man who will cut into me in two weeks is going to slice around my nipple then stretch the skin and pull out the lump. Then he will make another cut under my arm and take out all my lymph nodes. Everyone has a different amount of these nodes so they won’t know until they’re in, how many are coming out. The whole thing will take about an hour and a half.

I went solo to sign the consent form. Sitting alone in the waiting room, I became very aware that my baldy head was probably scaring the bejesus outta all the women there for screening. But when I pondered it for a while and remembered when I was on the other end of that dynamic. When I saw bald women looking calm and healthy, it was reassuring. So I let go of my assumed role as apocalyptic horsewoman. Now I’m through that next bit I’m treating myself to a vegan mezze and going to the cinema in wonderful solitude. Viva bald role models!

Well and truly pre-opped

I just got out of the Princess Royal Hospital in Haywards Heath, about 40 minutes drive from Brighton. This is where I’ll have my surgery on the 20th and they just wanted to make sure I’m ship shape for the op. I hadn’t been poked by sharp objects for a whole month so that was a walk down memory lane but without the nostalgic fun. It wasn’t terrible, just weight, height (apparently I’ve shrunk by an inch), bloods, urine, blood pressure. It seems like a nice hospital and the staff aren’t obviously evil, so phew. I was worried about going to an unknown place so it was good to see it and picture being there.

image

They turned over green areas to wildflowers or they’re just too underfunded to pay a gardener ; p Either way it was lovely. The nurse didn’t blink when I told her I was vegan but it was damn good that Adam was with me because I forgot this small but crucial info. In fact he answered most of the questions because my brain is seriously underperforming. Luckily the nurse gave me lots of leaflets with properly spelled out instructions.

image

It’s all becoming a reality now and this part will definitely be easier than chemo. But it does bring with it some new anxieties and unknowns. The most terrifying being general anaesthetic. I’ve never had it before and seeing as I have a bad reaction to paracetamol, the prospect of being so numb I can’t breathe for myself is stomach lurchingly frightening.

Time for some deep breathing and meditating on the reason for all this. When I wake up and the bruises retreat, I will no longer reach down and feel a lump that is all wrong and is trying to kill me.