4th February
Yesterday, we arrived as instructed by the doctor on Monday at 10am. The instructions were to go to the eye clinic to have more photographs taken - as there would be no letter she would leave a note with Reception - and then they would send me upstairs to have my pre-assessment. She had booked me in for a biopsy under general anaesthetic “because it’s very close to the main blood supply and it may bleed,”something I didn’t need to know, Wednesday 10th at 12.30.
Simple. So first we swung into an empty car park in plenty of time. Unfortunately, it didn’t take notes or debit cards and I didn’t have enough coins for two hours, so off we went to find a parking space in the cheaper car park and I fed everything but our last 11p into the machine - which also does not accept notes or cards. There is something about cards and following the instructions but I did everything I’d observed a perplexed looking woman do on Monday and concluded, as she had too, that it wasn’t functioning. Two hours seemed plenty and the car parks are Leeds City Council so I can’t blame St James’s.
I can blame St James’s for everything that followed - the worst hospital experience I’ve had to date and making me realise that having my mastectomy done privately was wise. No, there was no note and Dr M wasn’t on duty. I sat and waited for half an hour outside (they would not let me in without an appointment) and then a technician came, took me to the photo area and took some cosmetic photographs. I went back to Reception. Now what? They had no idea so they suggested the pre-assessment. Unfortunately it could be in either of two places. Does it show in my notes? There’s nothing in your notes. Ok.
I set off to find the Eye Pre-assessment department. Ward J25. Remember I experience difficulty walking because my foot bones all hurt and some tendons are still very weak, especially one ankle. I know, it’s my fault for not doing my exercises every day. But that’s another reason walking is hard - fatigue. But I managed by using lifts All hospitals are like a maze, as I learnt on my midnight journey during chemo. St James’s excels. I swear it must have been designed by Escher because this was how my mind perceived it. There are two sets of lifts, I have now learned. They are on the same ground floor. Somehow they take you to different Level 1s and 2s. On Level 2, clearly signed Eye Pre-assessment, a very abrupt nurse, who I had to call to down a long corridor, informed me there had been no eye work there for two years and I should go to the Bexley Wing.
Now, I know that wing quite well now and I knew that wasn’t the case...to spare you the utter boredom of reading about kindly staff taking me where I didn't need to go and directing me to wrong buildings, eventually I found it. Closed. No one in sight, so I just sat down and contemplated weeping. Someone came out and said I was in the right place and they’d see me in a minute. In a minute actually meant after finishing a mug of coffee, which I don’t begrudge, and a good gossip with someone who popped in. Then, miracles, yes, I was on their list - for 10am. It was 11.25. 30 minutes left on the parking. Anyway, I had the first part done, then had to sit and wait for the second. 15 minutes left on the car. The lady sitting nearby said her letter advised her to allow 4 hours for the pre-assessment (that’s longer than the whole surgery). Close to hysterics, I told them I’d have to go and sort out the car but they wouldn’t let me go before answering every question about medical history that they already had the answers to on the screen - she checked and said “oh yes, it’s here” a few times.
She then insisted I go for an ECG, yes, sorry, it’s on level 1, and bring the results back. She also informed me I was required back in the eye clinic. So I hurled as fast as a fatigued woman with a pulse rate of 128 just walking can hurl down to Dennis. I broke the shielding rules and entered Boots and pleaded with the pharmacy to exchange a fiver for 5 coins. She agreed, just this once, so off we headed to the car, got a fresh ticket for 2 hours, then sat in the car while I contemplated weeping again.
Back in Chancellors Wing, the eye clinic that summoned me was closed and the few staff had no idea why I was summoned. Come back at 1pm. A nurse I approached in the corridor directed me to ECG. Again, wrong directions. There was indeed a long corridor (I walked the length twice) but no ECG. It was the young man delivering mail who got me there. ECG sorted (I really wasn’t dressed for it), I had to find the eye pre-assessment department again, deliver my results and then find phlebotomy. Only that was in Lincoln Wing. I had a ‘map’ even the hospital volunteer misunderstood. Eventually he took me to a door and said it’s just the end of the ramp. The ramp must have been half a kilometre. I found the bloods eventually when a kind member of staff offered to take me. Down 4 flights of stairs built in Victorian times. The kind phlebotomist told me she’d give me a foolproof way back to the eye clinic in Chancellors Wing. Out the door, round to the front and just go round the outside. Bless her.
It was 12.45. I parked myself at the entrance to the eye clinic and refused to budge. They’d let me in or... I don’t know. Tears? I wanted to sit on the floor but I knew I couldn’t get up again and these are covid-cautious times so I leant against the wall looking bleak till Dr M appeared. All she’d bloody wanted me for was to sign the consent form!! Off to her office, a seat, a brief talk and then she fetched the consultant who examined my eyelid again, told me where the incision would be, refused to listen to my ‘special needs’ regarding medication pre-surgery and then announced that my operation is postponed - they’d just been informed the super-spreader has arrived in Leeds and all surgery is cancelled, till at least the end of next week. All for nothing?? He was also very critical of my cancer care, in terms of what he expected - I should have had a full MRI and the mass shouldn’t have been ignored last year (agreed). I took a deep breath and asked if they were looking for breast cancer but got the expected answer - they don’t know anything until after the biopsy. Sigh.
Part of me wants to contact the Spire and have it done there but I’d have to start all over again, unless the same surgeon works privately. There’s also the possible cancer link which will have to take me back to Bexley in a worst-case scenario. If I could take a sedative on the morning of my surgery privately, why can’t I in the NHS system? They are the same anaesthetists. If they could give me an injection to make sure I wasn’t sick privately, why can’t the NHS since they won’t allow me to take a tablet after 7 and it will have worn off by the time I’m done.? I am really and truly pissed off. I did it all right (except I seem to have lost my sense of direction - but the hospital signs are out of date), I stood up for myself, I made it clear what my needs were and it meant fuck-all to them.
And that was three and a half hours, out of shielding, exposed but for a mask and hand gel to anything. The eye clinic nurse even insisted I wear a fresh mask so heaven knows what I’ve been up against. Funny though, I can’t bring myself to worry about it. The only places I’ve been are medical settings.
I am so fed up.
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