Whenever I appear to be disappearing into an “oh woe is me” temperament, people are lovely contacting me with various sweet messages of support, and came up trumps again this time, exemplifying everything I said in my post about faith. As always, thank you.
On Thursday I pootled up to the Brompton (which I can rename my summer house I think judging from the last 2 years) to start another course of Intravenous antibiotics, mainly as a pre-emptive strike as lungs have started to misbehave and do naughty things like bleed spontaneously for no reason at all in the middle of the night; clearly not conducive to relaxation. In some ways it was quite nice to go back up to the hospital as I got to catch up with some of the staff and I think it was nice for them to see that I was doing ok too. The day went smoothly and it was a wonderful and liberating feeling to just be an outpatient and to arrive and leave on the same day. It is a gloriously blue-skied crisp and sunny day today but I am trapped indoors, having run out of portable O2 a week ago and been left stranded by my suppliers (anyone would think I am demanding bottles of pink champagne not oxygen!) Trying to get hold of new oxygen cylinders creates all sorts of fun and games - the response when I pointed out the importance due to me being listed for transplant was highly amusing; “we suggest that should you be called you ring us straight away and we will try and get some to you as soon as possible” (clearly they don’t quite understand how transplants work). Still IVs cause you to tire out quite quick so it’s good timing to be stuck in and made to rest really, plus it looks quite blustery outside and I love watching the wind whilst being all being all snug and warm indoors.
Someone mentioned that I should make a list of things that I am looking forward to post-transplant. I have actually already done this, but just not blogged it, so I shall do so now. Incidentally for anyone who notices that there is an abnormally high number of things which involve me turning round and round for some reason or another and become concerned for my mental health, this is for a reason, it is actually because this random maneuver is most difficult whilst using O2, as it inevitably results in me being wrapped in green tubing (in manner of a human Christmas tree or similar) and has left me pouting and bleating for help in detangling on more than one occasion.
So here is my list I made a while back, of some of the completely inane, normal and everyday things I am looking forward to doing post transplant.
-Walk down the road (This is the image I replay in my head when I am feeling most down: to walk out of the front door with nothing in my hand except my keys…and just stride down the road, and hopefully to start running. I don’t have in mind a place I will be heading towards, just the fact I will be alone and empty-handed.)
-Walk up the stairs. All in one go. In fact run up them, probably tripping over and breaking several bones in the process.
-Go swimming (I used to swim loads, right from a very young age. As a child and loved diving down under the water and wished I was a mermaid).
-Lie back in a steaming hot bubble bath (lungs are currently not very keen on very hot water or lying flat)
-Dance in the rain and get ludicrously soaked (and then probably remembering that actually getting all wet and cold isn’t as romantic and/or as fun as one imagines)
-Twirl round and round until I am so dizzy I fall over (preferably wearing my rainbow dress where the skirt flies right out like a dancers dress)
-Actually learn how to walk in heels as have been cheating by using wheelchair therefore kidding myself that it doesn’t matter that I would completely stack it in 20 seconds.
-Blow up balloons and blow out candles (I will have to throw a party just to allow me to do both, what a shame).
-Go out dancing all night long, and especially dance with A (dancing in general is no longer very plausible but dancing with someone else even less so, due to tubing issue causing the majority of moves to be a major health and safety hazard).
-Roll down a hill (self explanatory for anyone who has ever let their inner child get the better of them).
-To stand and have a shower (I currently sit on bath board, which as several people have pointed out is probably the more preferable option and novelty of standing is likely to wear off more than quickly)
-Sing a power ballad (into my hairbrush, on my own in a soundproof room obviously)
-Decide that I must suddenly by some miracle be quite a sporty person, take up a random sport such as lacrosse or similar, have one lesson, and realize that actually it was a lung transplant not a personality transplant.
This is by no means an exhaustive list, it’s just one that I thought up one day in hospital when it was absolutely tipping it down outside - the kind of rain which has really big fat wet drops and therefore would soak you in sixty seconds – and looking out the window gave me a compelling urge to race outside and run around a lot. It makes me smile every time I read it, so am off to make a cup of tea and then re-read it some more.
4 weeks ago