a long hard day....

Well - apart from the pleasure of catching up with a few friends, and some people who've looked after me in one way or another so much that they know me pretty thoroughly.... who it was nice to say hello to whilst I was on my 'tour' of Derby for out-patient appointments ....... I almost wish I hadn't got out of bed today. 

I had two hospital appointments today...neurology and ophthalmology...and a more spontaneous meeting with the resp consultant.

The ophthalmology consultant told me that I've probably got damage to my optic nerves.... caused by the reason I that I'd needed the brain surgery in the summer (high pressure arround my brain, probably caused by the steroids I've had to take for my asthma over the last few years) .. which explains a few things.... why my visual fields have got constricted causing a reduction in my peripheral vision, why I'm having problems with my vision itself, why my pupils don't do the right things in response to the light from a pen torch (a relative afferent pupillary defect (RAPD) for the medics amongst you)........and for the non-medical people - normally you get them both constricting to a smaller size as the torch is shone in either eye.... but in me-one of my pupils actually gets bigger after the torchlight is swung on to it, the light moving across from the other eye. This is a positive swinging light test - and why I was loved by the medical students last time I was an in-patient... ironically I don't think I've ever seen an RAPD, yet frustratingly for me...it can't be seen in a mirror, as you need to see both pupils at once..and I don't know if you've tried comparing both of your own eyes in a mirror.... it's a tad tricky!! 

Anyway - after finishing at eye clinic... I hopped on the hospital shuttle bus, lugging my multiple volumes of hospital notes all wrapped up in big envelopes (see previous post about me wanting a time machine!...as my second appointment was on a different hospital site on the opposite side of the city, without sufficient time to give medical records time to transport them between!) and to my pleasant surprise met up with one of the resp ward sisters on the bus... so had a nice chat, and was relieved of the burden of carrying my notes :) Thanks SrU! 

The neurologist was lovely, but sadly didn't have a lot more productive information to add to what ophthalmology had said. Basically, I've got to just wait and see what happens.... keeping my fingers crossed that things improve...otherwise things like driving are going to be out of the picture in the future, for longer than the 6 months after the operation that I'm currently banned for. 

Quite thoughtfully though - my next appointments with both consultants have been arranged for the same morning in the New Year! Odd to think that 'Next Year' is only a couple of months away!  Where has 2008 gone? I know I've spent the vast majority of it cooped up in a hospital bed... but still..... ? 

I carried on with my social tour... and popped down to the MAU (Medical Assessment Unit) to say hello to a few people, who were just to be honest.... pretty overjoyed to see me in a situation when I wasn't being admitted, or already admitted and really unwell! I was approached by the resp consultant who'd be down there for some other reason, and had seen me. He wanted to discuss a couple of things.... my lungs, and the one thing that came as a bit of shock.... potential return to work date.... well, to be precise.... not the topic..... more the dates themselves...which were up for discussion. It was pretty much a case of his best case estimate was what I'd been preparing myself for as a total worst case, latest possible return to work date.  :oS 

I was very glad to be being driven home by a friend, as a fair amount of de-stressing went on.... and discussions of the consequences of me of being told that potentially it will be August before I'm going to be considered well enough to think about getting back to work.... and maybe quite a bit longer. I love my job, so the thought of being away from it for so long is pretty unbearable.... I've already been off almost 14 months. 

I know I've been really sick, and had a tough couple of years - and guess this might sound a little silly as I'm talking as someone who felt like celebrating on Fri, having been out of hospital 2 whole weeks...but couldn't because I was too damn tired(!!)... but.....I just had NO idea he was going to think I'd need to take that long off work...so it came as a real shock.

Oh well --Guess, I've just got to take things one day at a time for now......

0600hrs..... As in the movie lyrics say - what's the '0' for? 'Oh' my god its early!!

Wow! what a shock.....

I'm having to get my lazy butt over to Derby today for a couple of hospital appointments (Well, am actually being driven over - so cant complain!)..... the first one being at 08:45 - so my alarm went off at 06:00hrs..... urghhhh! having been a lady of leisure [hmmm - that almost sounds wrong!! ;o)] at home for the past 9 days, I've been living life to my own clock, which has rarely meant getting up before 10am! 

So, 06:00hrs - a BIG shock.....  especially when we've got no milk for breakfast... so we're possibly going to have to subject ourselves to a  McBrekkie en-route!

My chauffeurs are dropping me off in Derby then heading off to somewhere near Sheffield to go paddling (that's kayaking to those who don't know me and my housemates..... not dipping their toes in the Sea!)

I'm very grateful for my lift - as with the appointment being so early.... trying to get over to Derby by public transport would be pretty hard. The reason for the first appointment being so early....

..... my lack of in-built time machine. Initially, I had one appointment at 11:00 at one hospital in Derby, and the next..... fifteen minutes later... across town, around the ring-road at the other hospital!!! Thankfully, the eye-clinic and neuro clinic appointment staff at the hospitals saw the impracticalities of this, and were willing to swap a few things around for me!

Right - I best go and get on, as  I don't tend to manage things quickly at the moment! 

Home sweet home....and time to swallow my pride....

Firstly, apologies for the delay in posting.....  but I've been somewhat busy, doing that exhausting activity of being at home! :) 

As always - I couldn't wait to get discharged, but I've had a few niggling concerns since my last patch at home - when I took a few tumbles down the stairs due to generalised weakness, double vision, poor balance and in part, my brain thinking it was still controlling the fit strong body it used to! I'd found being at home surprisingly difficult - even just in doing simple things like standing for a decent length shower, or just doing day-to-day activities like preparing a simple meal.  That's a pretty hard thing for a 28 year old to come to terms with - especially this one.... who's fiercely independent and in a not so distant past was more often than not found with her bum sat in a whitewater kayak! So....the concept of a stair assessment, and having to chat with the occupational therapist about the things which were going to be difficult and what i might need some equipment at home for. Hmmm....  think it is definitely time to swallow my stupidly large stubborn sense of pride and accept whatever is going to help my recovery. 

Never eat food from a woman who cooks potatoes and pees in the same pot.....

I was allowed off the ward this lunchtime with a friend...  small steps of independence, and towards escape.

...We ventured up to the hospital restaurant for a change in both scenery and food.

The restaurant is on the top floor - and provides pretty impressive panoramic views of around the hospital site and into Derbyshire. Generally the food on offer is pretty good - I had a freshly prepared Beef in Black Bean Sauce Stir Fry with Rice and Prawn Crackers.

However, neither of us were very tempted by the 'Soup of the Day':

I'm not exactly 'wetting' my tastebuds with anticipation of that one....

..... but I'm being adventurous tonight..... I'm bored of the standard hospital steamplicity menu (after 11 months of virtually continuous admissions - even the good choices available become repetitive) - tonight I ordered Minced Lamb with Okra, Spicy Vegetables with Rice and Peas.... off the Afrocarribean ethnic menu.... after a delicious experience of Ackee and Saltfish, Spicy Veg and Rice yesterday......   

My food has just arrived....

.... Brinjal & Potato, Chana Dal & Rice.....     not exactly what I ordered.... or even from the same continent.... but, smells and looks delicious nonetheless! 

Hospital at home, or at home... in Hospital!?

I'm always the brunt of endless jokes about the amount of crap that accompanies me on a hospital admission... with references to removals companies being fairly commonplace.

However, I was having a think about it... and I don't think my packing style is that unreasonable....given my gender, and by the time you've got the essentials.....  a BIG box of medication the size of a suitcase & peak flow meter, inhalers, non-invasive ventilation scuba-dive-type mouthpiece...

but also:

.....clothes, PJs, dressing gown, flip-flops, washkit

.....laptop & modem, phone, portable hard drive, dvds....

....plus the little essentials that make an admission a bit more bearable.... 

- fleecy blanket

- ear plugs

- nice smelling moisturiser

- lip balm

- ice cube bags...(for putting horrible fortisip drinks into - turns into actually pretty nice    frozen yoghurt! - more on fortisip smoothie recipes later! 

I know you are all hearing your tums rumbling already!) 

cup-a-soups, 

rice-noodles, 

bouillion stock cubes, 

sweet chilli sauce,

fruit tea, 

marmite, 

diff flavoured squash, 

fruit juices,  

soy sauce.... 

I am renowned for losing either my sense of taste, appetite or becoming v nauseous.... these are some of the techniques I've learnt along the way to try and overcome it, and get some form of nutrition in! :) ]   so i need many things to try and make some kind of 'home' in the hospital... or i'd have gone doolally long ago... 

...and then on discharge home, you can often add oooodles of supplies for lengthy courses of intravenous antibiotics, antiemetics and steroids.... via my handy picc line (peripherally inserted central venous catheter line) - the medium term intravenous line that in one vein or another has been a pretty permanent feature for the past year to 18 months...  but that requires sterile syringes, needles, saline, giving ('drip') sets, sharps bins, sterile towels, dressing packs, swabs..... the list is seemingly endless... and virtually turns my home into looking like a hospital and pharmacy! 

So - hence the confusion... especially given that I've spent far more time in hospital than I have at home this year....  Hospital at home?!, or at home... in Hospital!?

This post was actually prompted by an animated debate I witnessed between some agency staff, patients, and ambulance transport personnel.  Apparently there is an ambulance policy stating that only 1 bag of patients belongings may be transported by the crews when transporting patients. This was posing a problem for the patient concerned, who'd been in for many weeks - and had two bags, plus a Zimmer frame...   the crew had to leave behind the Zimmer for later delivery by taxi... In this situation, it was because they already had other patients on board, so couldn't safely transport the frame....but I have seen it happen purely due to 'jobsworthiness' in other situations.... 

...However, what had actually shocked me, was the attitude of one person involved... who very clearly stated that she thought that the 1 bag policy was totally fair in all circumstances.... and that patients shouldn't be allowed to bring any personal belongings into hospital... as they were there to get better, not for comfort! She also thought that EVERYONE had access to people who could frequently bring in clean clothes, taking away the dirty ones... and that if they didn't have the people in their family to do it for them... that social services were readily available for this...

..... just from my time on the wards as a junior doc... with even limited experience of social services provision.... I know that she's not living in the same 'really real' world as I am! 

My personal view is that even on a very short admission, the 'creature comforts' stop me from going round the bend... and are as almost as important in my progress as my medication. 

Well...... I've finally given in! 

Far from being an admission of defeat against my long battle with brittle asthma and other health challenges....   it's in submission to continuous nagging!

.....After over two years of repeated episodes of finding myself 'Stuck at the Wrong End of the Stethoscope' - I've finally given in to all those of you who've repeatedly made comments like 'You could write a book'!!  

So - my answer.....The Blog!  Given my geeky nature, it seems an ideal method....(and as all who know me, know my laptop is virtually as an essential item for any hospital admission as my toothbrush or medication!) 

I've lost count of those well meaning comments from friends, colleagues, patients and strangers alike - who all pipe up with 'Well, I'm sure you'll be a better doctor for your experiences....'     

This is no doubt true - but I think possibly the cost:benefit ratio might have lost the battle in my eyes a while back........ ;o)  

Anyway - so I'm twittering on towards the end of the first post in my blog 'Stuck at the Wrong End of the Stethoscope'  This blog will be a collection of my random mumblings and wheezings of my experiences....   I hope that it is an interesting read, and provides a small insight into the workings of me, my mind and what makes me 'tick',  and the interesting perspective that comes from being able to see health care from 'Both ends of the Stethoscope'. I hope this may also provide a useful insight for patients and health care professionals alike.... 

Comments and suggestions willingly received :)

KSD