‘Better Out than In’

It’s fair to say I have been struggling to keep up with day to day life, never mind writing this blog.  Physically and mentally hauling my body out of bed has been a mission.  My movement has been restricted by the increased swelling in my arm from lymphoedema (I keep saying I’m going to write a post on that, but a bit like the hair loss one, it is difficult to dwell on).  This swelling has also been in my chest and shoulder.  The weight of my arm has meant that I am wearing a sling to support its weight and try and relieve my shoulder.  This is in addition to the compression glove and compression sleeve I wear on this arm.  My right arm.  Writing and typing are both painful.

In case we didn’t know that cancer is a systemic disease, the inter-related nature of all my symptoms is daily evidence of this.  The swelling and the increase in disease is also pushing on my nerves and my blood vessels. The latter could also be a DVT, so I’m on daily injections to keep the blood thin. My belly a bruised pin cushion. The pressure on my nerves causes the weirdest pains, odd electric throbs and flashes of mini lightning under my skin (paracetamol and ibruprofen don’t even touch this pain).  I have had to go on nerve drugs and a low dose of morphine.  Neither of which I wanted to do, but the chronic pain meant I had to give in to this. 

Giving in is not my thing.

I am now finally beginning to get on top of this pain and the breakthrough is managed with top ups. With the drugs comes a little more sleep and a slightly improved patience level (my family would argue that this is negligible, but they don’t know how many times I don’t lose my temper, but bite my tongue instead).  It’s fair to say that 21 months dealing with cancer and the medical system takes is toll on one’s tolerance as does chronic pain. And that’s without throwing a young family and daily life in the mix.

As you know I have been fighting to get on an immunotherapy trial and I did not want to jeopardise this or lose focus by banging on about how awful I felt.  I donned lipstick and a smile and got myself onto the trial. 

But, eventually I had to admit that breathing was a struggle. It’s something you do quite a lot in any given hour and not even I could put a brave face on for that . My breathing was shallow and noisy and it was not going to win any efficiency awards for gathering oxygen either. That combined with red blood cells depleted by chemo makes for an interesting time obtaining oxygen. My normal pace of life was impossible, even my new post cancer pace of life was unachievable. It was harder and harder to get out and about. Finally, one day I had to sit down and watch TV in the day(!), for those of you who know me you will know this was not a good sign.

All in a week off

This week is my week off from chemo/immuo and blood tests, so we managed to squeeze in yet another trip to London. This time to have my lung drained. When the oncologist mentioned this I didn’t like the sound of it and I had to get my head around new treatment, the cold cap etc, so I put it to one side. I was so exhausted and relieved after having my first lot of immuno that the thought of googling and looking up draining pleural effusions was just too much. This time, very uncharacteristically I decided that ignorance was bliss and I would not research the life out of the procedure I was signed up for. It involved a pretty long needle and an accurate piercing between the lung and its lining. That was enough to remind me of having an epidural and the legal paperwork you sign while having contractions about the implications of needles slipping or going in the wrong place. I’d not enjoyed that experience at all. My brain was full with info and terminology and I wasn’t brimming with energy to look up lung draining.

The trouble is I like being informed. Being uninformed made me anxious about what was going to happen. Before I knew it I was changing into a hospital gown and my pants and signing lots of paperwork. This was clearly not a quick nurse led procedure. If anyone else asks me if I have had the risks explained to me I might scream. I love the euphemisms too – like ‘potential damage to underlying structures’ (piercing the needle through one or more of your vital organs!). I consider goggling the procedure from behind the cubicle curtain and then think better of it.

Apparently CT scans are unreliable at predicting the amount of liquid (most scans seem to be unreliable!), which means the respiratory consultant is unsure whether there will be that much fluid or if they can safely remove it. I let her know that I can definitely hear the fluid, although it does seem to be marginally better in the last week. Once again I am in the paradoxical situation of hoping there is not too much fluid, but enough. She explains to me that there is one procedure where they use a needle and do an aspiration (suck the liquid out with a syringe). Assuming its safe she thinks this is the likely option. If there is a lot of fluid they will put a small tube in and attached it to a drain to clear the liquid out. We talk about the complications of both. I am trying to listen, but just want her to get on with it.

I am wheeled into a small room the cross between a scan room and an operating theatre. The consultant has two nurses, lots of equipment, a fridge containing pots of dubious looking fluid – kombucha or pleural edema – difficult to say.

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Photo credit: BBC Good Food

I dangle my legs over the bed and put my feet in a sort of side table, that resembles a short lunch tray trolley with no dirty lunch trays in. I lean over a pillow and the consultant takes a look on the ultrasound. I can’t resist a peek, she picks upon my interest (obsessive nature) and points out my liver, diaphragm, lung etc. I resists the temptation to say ‘oh the underlying structures you’re hoping to miss with the needle’. She finds the pleural effusion and seems pleased. It is big enough to drain. I am pleased too. Funny what you wish for. She then uses the ultra sound and what I can only assume was some kind of sharpie to mark the spot to put the needle in. I am keeping silent and completely still (I know, a rare moment). She asks me to breath exactly as I am doing. Not any more or any less. I have no idea how I was breathing. This makes me anxious – normal compensating reaction for anxiety is to deep breathe. Except I can’t.

The needle is in.

She says ‘well done you can relax now’ and to my surprise I do. The moment I’ve been dreading for 2.5 weeks is happening. I feel able to ask: ‘Can you see the needle in the fluid on the screen’, the consultant replies that she turns the screen off after she puts an x on as she prefers two hands on the job to insert the needle (rather than the scanner in one). I stopped asking questions.

As I’m still alive and breathing I assume my lung hasn’t been punctured or worse.

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She syringes of c100mls of liquid. I ask to see it (the exit site is in my back). It looks like urine and it looks like a lot. She then let’s me and the two nurses know that they are going to switch procedures to a thoracentesis as there is more fluid than expected. They insert a tube into my back and the liquid flows out into a drainage bag. It is actual quite satisfying. It’s a very odd sensation, but it feels good. The team shout measurements and numbers at each other. It keeps coming. They show me the bag (I didn’t ask, by this time they know they have a control freak on the trolley). It now looks like chicken stock and I reckon it would make a enough gravy even for our family roasts. It keeps coming.

She asks me if I’m in any pain.
Pain is so subjective.
I’m uncomfortable, it feels weird, but is it painful?
No, not really.
They keep going.
She asks me my height.
I feel some tightness in the top of my trachea and wonder if I will imminently start to choke and splatter like the end of bleeding a radiator.
It dissipates.
She asks me if I am ok if they try for a litre!

‘Jesus’, I shout out. I apologise for blaspheming. They show me the bag and say we are at about 750ml. I blasphem repeatedly and apologise. ‘OK go for it’ I say. I am imagining a giant measure-o-meter from a 1970s Blue Peter appeal. My chest feels a bit tighter. We are nearly there. ‘Stop’ she says. The flow is interrupted.

Claire – a litre is about what we go for in someone your height and we’ve got 1.1litres.

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I know its gross. I just can’t get over how much there is.

It is still flowing, but we don’t want to risk lung collapse. Obviously, I’m fine with this – they’ve clearly got way more experience than me and if I’ve managed to carry this lot around a few extra 100ml’s probably isn’t going to notice.

It’s over.

I feel instantly better (who wouldn’t having let go of that lot). My chest is sore. I am tired, but I am relieved it is out. I wanted to run outside and breath in the February air. I took it easy though.

I woke up the next day (today) literally feeling like a new woman. When I went for a wee in the night it was strangely eerie in the house without the familiar rattle of my chest. In the morning, I left something upstairs and casually went back up to fetch it, rather than thinking – ‘I’ll make do without it’. I ran a few errands and went for an appointment, I picked the kids up from school. I was out and about, being me, living my life, relishing in the winter sun and the mundane. I was literally gulping in the oxygen. Don’t ever underestimate the importance of that stuff.

I’m definitely better out than in and the same goes for the yellow/brown gloop.

13th February 2020

8 thoughts on “‘Better Out than In’

  1. Holy shit Claire, that’s a lot of fluid! Probably a good idea you didn’t google it first…. 🙂
    I love your openness and honesty in your posts, and have so many fingers and toes crossed that this trial comes through for you.
    Can never feel your pain, but at least can understand this torturous journey you’re going on.
    With the DVT, are there not tablets that could be taken instead of injections to ease the pin cushion impact?
    Keep hitting back at the cancer and fight like the clear trouper you are!

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  2. Gosh, that was a lot of fluid!

    I’m pleased that something that sounded so awful had such an immediate and positive impact on you and your ability to keep fighting.

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  3. Bloody hell love, no wonder you’re feeling lighter without all that hanging about in you lungs. As always a tough but amazing read. Every day your strength ensures I squeeze joy and appreciation out of every moment. Keep fighting incredible you. X

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  4. Jeeze Clare, no wonder you can breathe again!!!!! I am a control freak too, and medical but definitely think there is a place for selective ignorance, and alien trust, and possibly even day time TV!!!!…You’re accounts of what is happening are truly powerful and so positive despite everything. I have so many unanswerable questions about all this, you, me, others ,life, but reading your view helps illuminate the isolation of these thoughts somehow . Onwards and upwards right now, much love xxxxxxxx

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  5. The picture of that pouch of brown gloop is burnt deep into my brain. It’s taken me a couple of weeks to recover from the shock which tells you what a Grade A wuss I am. Unlike you Claire. Your fiery, take no shit, battle-to-the-upside spirit is a wonder to behold. I hope that drug is coming through for you.

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