Maggie's

She's Back

OK – I’m home. Probably should have said so before now – it’s been 48 hours – but frankly I feel dead – which is an improvement on how I have been feeling!! Not really had a chance to do anything except enjoy being at home in my own bed but I have spotted lots of responses to David’s updates, which I will read when I feel more human, so thank you for your good wishes which I’m guessing they contain. Diagnosis was basically septicaemia due to Hickman line infection – a skin bacterium made wahay with my blood basically, aggravated by anaemia (4 packs of blood) and the fact my infection caught the gap in my cycle when due to the chemo my own immune system was at its lowest – not ideal. Summary is I’m home – not wishing to be repetitive – and alive!! 

What follows is probably more cathartic for me than anything else. I need to get it straight in my own mind what’s happened to me in the last 2 weeks, and the easiest way of doing this is probably to write it down. If I’m going to do so, I’ll copy you lot in so you can read if you so desire, but please don’t feel any obligation – it’s not going to be pretty reading I think.

Was going to say last weekend, but it’s actually 2 weekends ago some of you will have seen me at Kames enjoying the British Championship, EACC, and the MSA Inter Region Challenge. And I did enjoy it!! Not even put off by the fact we didn’t get home ‘til 10.30! Monday saw both of us tired, as expected, and I spent the morning in bed. Didn’t feel great, but put it down to exhaustion. Unfortunately I got worse – aches, temperature, and when I tried to eat I didn’t eat much which is a good job shall we say ….By bedtime, David was threatening me with quack – me, I said 2 more paracetamol, I’ll be fine. Tuesday morning he rang the GP anyway, who on hearing my symptoms came out for a house visit and diagnosed an emergency admission to the oncology ward at ARI. I was devastated as you can imagine, David had at least the sense to make a few phone calls to try and ensure a single room for me – I ‘spose it’s measure of how I felt I don’t think I argued too much.

Dreaded cannula inserted almost first thing, blood taken from Hickman line and cannula, put on saline drip, started on intravenous antibiotics and introduced to the delights of morphine – I was one solid ache – that much I can remember. That I think was Tuesday. Wednesday, lots of fussing about saline drip from me – trying to go to the loo when attached to a stand of fluid is not fun, and Tena Lady would have been no bad thing – tho in retrospect I think the fact my temperature was never below 40, and at one point hit 42.3 may have had something to do with my slightly uncontrolled about everything state. Tho I do remember managing a sit down shower on my own on Wednesday without any nurses being aware – heaven knows how!! Stubbornness I think! Thursday I think confirmed the blood tests revealed the infection in the Hickman line and this was removed in the morning – I think this was also the day I was lying there having line removed seeing a penguin on the wall opposite – hallucinations due to morphine and temperature I hope, else there’s an escapee from a zoo somewhere!! Friday saw replacement temporary line installation in my groin, which while not the most pleasant of things did at least save the arguments and pain of the seemingly 4 times a day “time for your antibiotic – oh dear that vein with the cannula has given up – let’s find someone to insert a new cannula” line. This was bad enough during the day, but 2 of my antibiotics were timed for 11pm and 5am, so to woken if asleep for that was not doing me any good. Particularly as some of the doctors who insert cannulas don’t seem to realise if they try two or three times are not likely to get very far, and should give up and let someone else try, but this doesn’t suit professional ego (sorry those medics out there) and I ended up – despite my temperature and general unwell state of basically telling them they could try twice – any more, they were out and could find someone else. Not the easiest message to get across, and I remember getting very upset at having to waste my very limited energy on arguments, but that’s how it was.

On the Friday I can remember telling David that even if he were willing to take me home I wasn’t going, I felt so ill, and to be honest that week is a bit of a blur. I think the 40 plus temperatures caused some concern to the medics, and a lot of the time I just wasn’t “with it”. I can remember hallucinating, often not being able to form a sentence or find the right words, sending David away one afternoon cos I just couldn’t stay awake, and arguments about whether I needed saline when I was drinking water by the gallon – incontinence problems continued and despite how bad you’re feeling, self pride gets in the way sometimes.    

Monday saw another ‘challenge’ for me – I should have suspected something afoot when I merited a visit from the sister!! They wanted to move me from my single room to a shared room. I’m afraid I mentally couldn’t cope with this – many of you won’t understand I know but some will – my ‘cocoon’ in circumstances like this is vital to me, and I think my reaction of ‘no single room, bring me the discharge papers’ was not quite what was expected. Poor David was rung to see if they could transfer me to the Albyn private hospital, who interestingly because I basically had septicaemia brought on by hospital sourced infection weren’t willing to touch me!! I think my intense reaction and the amount of what the ward no doubt considered ‘stubborness’ already shown on my part made them find an alternative to their problem than moving me, although it did lead to one of the doctors asking a psychiatrist  to come and see me.

Tuesday my ‘shock’ was that I was to be in for a further week – the intravenous antibiotics were a 14 day course. You can imagine the depths to which I sank. I knew I was still quite ill (slight understatement allowed) and although I knew I was quite capable of discharging myself if I had to share a room that basically I’d be endangering my life from doing so – but my odd mental state can do no differently.

Wednesday however I got some good news – the doctor who’d been comparatively sympathetic to my plights had managed to find an oral version of a different antibiotic which would do the trick which meant if the pharmacy could track some down (it’s not particularly commonly used as the IV is more usual) meant I could escape on Friday!! This meant however I had to get the other 2 packs of blood I needed – (somewhere along the line I’d had 2 packs but when is gone in the maze of my fever, and still needed 2 more). Somehow or other – don’t ask me how – I kept being told the blood was on the ward but it was never administered, and to my knowledge I think 4 packs of blood were discarded due to the day staff being unable to administer it in time – it can only stay on the ward so long before it becomes unusable – this I find intolerable but can’t do much about it – a resource in such short supply can just be wasted. However, finally at 9pm on Wednesday I got my first pack started – which means monitoring of BP and temperature every 15 minutes for first hour, then again after another hour, and then at the 3^rd hour when the pack is completed. Midnight saw last IV antibiotic – another hour elapsed, and then final blood pack started at 1.20am. At 4.20am both myself and the staff nurse looking after me raised a little cheer!! My only obstacle to home was getting thru 24 hours of oral antibiotic with no bad effects and removal of my groin line!

Thursday I was as high as a kite – oral antibiotic was going fine, 5pm finally saw the line removed, and I had my meeting at lunchtime with the psychiatrist, who was one of the better ones I’ve seen in that I was able to talk to him a little – not totally open up – that takes me ages – but a little. He’s quite happy to see me as an out patient – I think I am a little ‘different’ being an intelligent looney as opposed to a raving one, which is an offer I am considering, but most importantly to me ARI will now have something on record from one of their own shrinks saying I‘m a nutcase, do have some problems, and am not best suited to an open ward environment for totally illogical irrational reasons which despite being illogical and irrational means me and shared facilities are not safe. It doesn’t guarantee anything but might help IF I ever need to be admitted again. 

Friday – finally I got home!! I’d been telling David all the way home how much I fancied a cup of tea, and first thing he did was make me one. Unfortunately first thing I did was get myself upstairs and into bed, and by the time he arrived with tea I wasn’t prepared to wait for it to cool for me to drink but went straight to sleep – good proper undisturbed deep sleep!! I did manage to get downstairs to eat something on Friday – I’d been fancying jacket tattie and cheese – and thoroughly enjoyed.

Yesterday and today spent most of day in bed, some sleeping but some reading – while in hospital I think I read about 40 pages of a book – trouble is it was the same 40 pages over and over cos it really wasn’t going anywhere!! Next few days will follow similar pattern I suspect, but as my strength grows – I walked down landing and stairs in a oner today – progress! – I’ll try and do a bit more. Trouble is, I’m too impatient for my own good – this email will self destruct in 30 seconds….

And congratulations to anyone who’s got this far! Well done!!

N x