Dishing the Dirt on Dara Day 1

It's been a long day – and it's not over yet…but has also been pretty much ok and better than expected.

Tipped up 9am – usual litany of weigh in, blood pressure, temperature check, ECG, checking what meds I'm on (despite nearly all of them coming from here in the first place), sorting the finances, discussing drugs with the pharmacy bods, a stream of nurses and a doctor coming in and out to tell me the same thing, discussion as to what to do next, then being whacked onto a canula so they could administer the pre chemo batch of gubbins – piriton for allergies, paracetamol for fever, saline for a jolly good flush through and some other thing I've forgotten.

Net result – didn't get shipped down to the HDU (High Dependency Unit, one level less care than an ICU) till noon. Hmm, not good when a very long stop-start infusion looms. Got going on it, though might get away with no reactions till suddenly got a whammy of coughing, then instant very blocked unbreathable nose, then a bit of trouble breathing just through mouth – got given a nebuliser to suck on for 15-20 mins and it subsided, then the schnoz opened up again after a while (having dripped charmingly into the nebuliser, nice). They had stopped the chemo and switched it to the saline drip, so re-started this at a frustratingly lower pace. This is now increased up to a huge 200ml per hour (yes, barely over half a can of Coke an hour), obviously mixed with water to dilute it and keep me needing a wee, having to wheel the whole stand with drugs and beeping noises (it doesn't like being unplugged and going to battery power). And having to pee in a jug so they can measure output – there's not a whole lot of dignity here..

Ray popped in to tell us he reckoned he'd be home in half an hour tonight as the school traffic is gone – cheers mate, good to know. But he did agree that when the drip is finished, I only have to stay for 15 mins to make sure my head doesn't drop off, well, probably to make sure of something but who knows what, then I can go home. Good news, as there was a threat of having to stay overnight if it didn't finish till 9 or 10pm, so a relief that the reactions have been minimal, so the drip pace has been ok too.

Janine popped in and we booked a night for all 4 of us at a hotel off the South Downs way as she & R are planning to walk some chunks of it, while H might do a bit and I will appear for the food and drink bit. Yes, sounds preferable in some ways but I'd love to be out with them all and the 2 dogs, it's a total bollock not being able to walk far. Still waiting for my referral to a back neuro surgeon, which seems to be one next step – had to practically beg Ray to refer me as he seemed to think it was pointless. He offered me a course of radiotherapy on my back if they could see some myeloma spots on it – but also said he didn't think it would work. So funnily enough I declined that – bizarre, huh?? Also tried to persuade me to have another bone marrow biopsy but didn't have a good reason to do it (?!) so funnily enough I said no thanks to that too!

Also having a second opinion about my breathing situation with a chap called Luke Howard, who is both a heart and lung specialist. No logic at all to what they are now saying, which is just that its a fitness issue causing my breathing. So how can I have first noticed it when I was fairly fit and playing hockey, hadn't had any treatment at all and was a stone lighter than I am now?? I still think there is something they've missed as just seems unbelievable that its 'you just need reconditioning' – I'm sure being lighter and fitter might help a small bit but its not the underlying diagnosis for me.

So here we are – one photo of my amusingly enormous triple-folder for my notes – ah, so that's what Sept 2008 till now looks like – and why they aren't digital I have no idea – you need a bloody second wheelchair to follow me round and carry these, by now..

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Anyway – chuffed that today hasn't been worse – go the Sheep dog.

S x