Just a thought

For all the last nearly three months have been difficult, I have had access to care when I needed it and it has saved my life. Everything they cut out of me, they cut out of me on time, when it was still at the pre-cancerous stage. There are women, wives, mums, fifty year olds all around this world suffering from exactly the same issues as me, but they find themselves in Syria, in Gaza, or in the Yemen. They are displaced Rohingya people, or refugees fleeing other crises, of which there are too many to mention. Those women are the same as me, but their fate won't be, and that is not right. We need to be acutely aware that it is simply a fluke of birth that sees my situation end differently to theirs and we need to think of a way to start righting that wrong.

Day 75 takes the biscuit

It's been another interesting few days on my 'death bed' - I thought the latest update might give you all a laugh...

As I said last week, I spent most of the week waiting on a scan that never happened, and having no treatment in hospital other than the odd paracetamol so I got sent home to free up a bed. 

This morning the phone went and it was my GP. I have never actually met my GP, despite being with the practice more than four years. It's a big medical centre with nearly a dozen (lovely and helpful) doctors, but today my own GP decided to chase up my case... He seems very nice!

It was an interesting conversation. He said he'd seen on my notes that after my visit to the GP in a lot of pain last Thursday, they had sent me to hospital for a scan but couldn't see the scan results so was ringing to ask me what they found! I filled him in on that one and got a sigh or two. He then asked if they'd discharged me with a course of strong antibiotics. I said they had discharged me without so much as a paracetamol. I asked if the antibiotics he was suggesting were to treat the intra-abdominal abscess that I think I have and the GPs at my practice think I have but the QEUH registrar thinks I might not have. He replied that they might of course help with that but he meant them to deal with my wound infection. I wasn't aware I had a wound infection, especially given no one looked at it in the hospital other than to acknowledge I had a hole in my front and suggest I take a shower to keep it clean! Oh, he replied, shocked again - it's just that when you were here on Thursday, we swabbed it and you have three different infections going on in there, the most concerning of which is E. Coli.

Well, whoopdefuckingdoo. ♪♩♫♬♫All I want for Christmas is E.Coli...♪♩♫♬♫ Has a certain ring to it, doesn't it? 

The doc hopes he hasn't wrecked my Xmas but he'll have to prescribe some antibiotics you can't drink alcohol with! Seriously, I'd happily forego my weekend glass of wine forever if they could just get me back on my feet!

The saga continues

So... They couldn't fit in a scan as an emergency outpatient on Tuesday, so they sent me home, they couldn't fit in a scan as an outpatient on Thursday so they admitted me to do it on Friday, they couldn't fit it in on Friday so they called over to the main building today to be told they can't do them at the weekend so I'm being discharged to come back for a scan next week as an outpatient. This is getting tedious 🙄

56 days, plus 13, plus 2

It looks like I might have spoken too soon on Tuesday. My attempt at an NHS-free week didn't even reach the 48 hour milestone.

The day had started stressfully as I had pre-booked a taxi to take the kids to school as Thomas wasn't home. The taxi had not turned up and when I rang to complain they'd blamed the O2 network outage. The upshot was that I paid over a tenner to have my kids delivered to school late. I was not amused.

By lunchtime eating had become a trial as sitting at a 90 degree angle was becoming increasingly difficult. Something was burning deep inside me on the left of my wound and something was making the surface of my skin so sensitive, I could barely brush the back of my hand against my abdomen. I googled again, desperate not to end up 'back inside'. I couldn't work out what it could be. An infection seemed unlikely given I was on my 12th straight day on antibiotics. Had they left the scalpel in there by mistake? 

I had been booked in with the nurse once again to change my dressing on the Thursday at 3. 

I found sitting in the car almost impossible so had to recline the seat on my trip to the medical centre. I couldn't sit in the waiting room because I basically couldn't sit. The nurse took one look at me and called the doctor in. She'd seen me on Tuesday and saw a difference. After a poke and a prod, he decided I needed admitted for a suspected abscess deep inside on my left hand side. The weans were dumped on Charlotte though asked to be in charge of making some sort of meal as she had a university economics exam the next day so was studying in her room. I texted Thomas who had braved going to his office in Edinburgh rather than working from home for the first time in weeks to say mum was driving me to hospital though this time the GP opted for QEUH, and I wasn't going to argue.

On arrival, I became aware myself of how taxing even walking was becoming. They brought the Registrar in who examined me and helpfully suggested that maybe during the original operation, they'd cut the supply to or from my left kidney and that was potentially the problem. My blood and urine tests were all fine and infection free but that could be explained by the fact that as a reasonably young (!) and healthy (till 11 weeks ago) person, my other kidney would simply have taken over all function.

To ascertain if this is the issue there are two problems. Firstly, I need transferred to the actual main 'Death Star' building for a renal CT scan (I'm currently in the maternity and gynaecology block) but no appointments have become free over there today. And secondly, my veins have all thrown in the towel after nearly a month of abuse and they can't CT scan me until they can get the dye into me through a cannula. All attempts at putting one in yesterday failed ☹️

So I'm stuck here thumb-twiddling once again, missing my normality and my family life. I have well and truly had enough now. And that's before anyone tells me how to fix my kidney, if it turns out to be that, or what hypothesis B is, if it isn't that. 

I feel autumn was only just beginning when my life spun off into some parallel and unpleasant universe. I missed all of autumn, the beginning of winter and the whole Christmas season. Santa still hasn't done any real shopping, I haven't heard a single Christmas record or seen any Christmas lights or markets and I'm missing the whole build-up with the kids. I've missed the school Christmas gala, the open classroom day, the p7 Christmas assembly. The Santa Dash on Sunday is out both as a participant and as a photographer 😭 And our annual trip to IKEA'S party has been cancelled too. Next week the girls are carol singing in Silverburn - is there any hope? 

I'm going to get to January bypassing Christmas altogether at this rate and that's not nice when you have a young family.

I'm sooooo feed up.

56 days, plus 13

So, let's update the saga.

I had psyched myself up to being fighting fit and running round the shops doing Xmas shopping by post-op day 20.

Ok, so I hadn't factored in that once they opened me up, they'd perform a sigmoid colectomy, on top of the full hysterectomy and the fix of the umbilical hernia. The fact that each of these three operations has a predicted minimum six week recovery time estimate didn't faze me. Surely it's like sticking three pies in the oven to cook at the same time instead of one - you just do your six weeks simultaneously, reducing the timings by half as I'm younger than the average person undergoing these procedures and I'm never ill. If I can go shopping within 24 hours of giving birth, how hard can it be?

Well, that doesn't seem to be exactly the path I'm travelling, strangely. Having got home on day four after the original op, everything went ok for the first two days. I checked the instructions on how to get well sooner and even went on the prescribed five minute walk twice a day. The others from my ward, who I'd kept in touch with, weren't even out their pyjamas yet so I was feeling well-smug.

The slight redness above my belly button only really started to worry me on day seven when I noticed my skin was becoming hard. By day eight it had crept across my stomach and by day nine I could no longer sit at the dining table. My entire stomach was red, hard and nipping like mad. I called NHS 24 who decided it sounded bad enough to send an out-of-hours GP to my house. I haven't had a GP come to me since I was four years old. Christ, I thought, I must be at death's door! I was told to ring back on day ten if it hadn't improved. It hadn't worsened, but it hadn't improved. A second GP came out to me in the middle of the night. (I'm definitely dead!) She looked at the wound, the red, my blood pressure and temperature and phoned me an ambulance. I was going to need IV antibiotics as I'd developed cellulitis...

At 4am I left for the Royal again. She almost sent me to the QEUH, my fingers were very much crossed as they have free parking and decentish food, but at the last moment she decided she wanted me back under my original consultant so off I went again to the Royal. By 10am I was on the ward with tubes in all my veins again.

In my seven days absence, ward 56 had put up two Christmas trees. The only positive moment for me that day was when they explained that I would be moved to the other half of the ward from last time. I'd been in 56B as it was the oncology gynaecology ward the previous week, but my pathology results meant I was now bumped down to 56A which is standard gynae for Glasgow's East end. And what a different experience that was, but that can be a post in its own right!

I was poked and prodded for another whole week till my veins actually started to nip with the amount of IV going in and blood coming out. The redness slowly subsided but the pus from the infection needed an outlet, so my beautiful and neat scar split to let pus, by the coffee-cup full ooze from my front. It looked not unlike that scene from Alien crossed with Vesuvius on 24/8/0079! They warned me that the three tiny holes that had opened along my scar might pop and merge to become one large grape-sized trough and what do you know, they were right! Apparently it'll heal over but it is un-sew-up-able! So having had my umbilical hernia fixed after 18 years to make my belly button look normal, I now appear to have two belly buttons! Joy! I'll spare you the photo (for now at least|).

I was finally told my infection levels were passable on Friday at 1pm so they were willing to discharge me with oral antibiotics and a nurse to care for Vesuvius. Thomas was working so mum drove in to get me. I hadn't factored in that the Royal pharmacy would actually take till 6-50pm to send up the antibiotics to let me out! FFS! They even tried to tell mum she couldn't wait as it wasn't visiting hour! I pointed out she wasn't a visitor but a taxi driver who'd been waiting five hours so we were given an uncomfortable little cupboard to wait in!

Home at last but I am actually feeling more run-over-by-a-truck than first time round. I've had to go to the GP every other day for my dressing and yesterday the pain had become so bad I was taken back into the QEUH for tests to see if I was developing a new infection, but apparently I am not, I just have a lot of bruising on the inside post-infection and post-op.

I'm still so foggy-headed I can't even do my Xmas shopping online. I was really sure I'd be fully recovered by now, other than my ability to lift things, so I'm not in the best of moods.

Hopefully I will manage a whole week without visiting the A&E department. I've manged 24 hours so far, fingers crossed.