At the end of October I had a nasty & very painful surprise! Thankfully, I’m recovering well (if a little slowly).

#TriggerWarning: this blog contains medical procedures & intimate details that some may find upsetting or embarrassing.

Photo Credits: Stephane Cony, left picture & Paul Bonham, right picture.

Alt Text: Two photos framed in one image. The left hand side photo is of a middle-aged, white-skinned lady, sitting on a blue plastic chair in a hospital waiting room, connected to a drip. She is wearing brown leopard-skin print pyjamas & pink wooly socks. She has messy, curly shoulder-length brown-grey hair with traces of pink dye in it. She looks very pale. She is smiling, raising one hand to wave whilst holding a tissue. The right hand side photo is of the same lady but she is looking much better, sitting in a restaurant. Her brown-grey-pink shoulder-length hair has been curled, & she is wearing a black, zip up tracksuit top with two white stripes on the arms, & a pink leopard-print sweatshirt underneath. She is wearing black-blue round glasses & she is smiling. She has a small jug of custard in one hand & on the table in front of her is a small, oval bowl with apple crumble in it.

I had a nasty shock at the end of October. I was getting ready for the day, intending to attend my annual check-up at the Adult Spina Bifida clinic at Chelsea & Westminster Hospital in London, when I suddenly felt a huge pain in the right hand side of my body. There was pain underneath my ribs that spread to my abdomen & around to my lower back. I was being treated for a UTI (urinary tract infection) which was lingering on despite me coming to the end of my antibiotics. I’d felt extremely tired whilst I was working away from home in Newbury, so I suspected something might be up.

But that morning I realised that I wasn’t able to go to the toilet & I started to panic. The pain was increasing at a pace. I started to violently vomit & I collapsed onto the bathroom floor. I was screaming in agony, even asking God to help me (I don’t know where that came from, I’m not religious at all!) I became very hot & I couldn’t bear wearing any clothes, so I underdressed there & then on the bathroom floor.

My boyfriend, Stephane, was really scared & he called 999 but the call-handler refused to send an ambulance out, even though she could hear me pleading for help & vomiting. It was wild! She advised Stephane to call 111! Incredible! I tried to get myself together but it was obvious that I couldn’t go in a taxi to hospital because I was vomiting everywhere. The driver would refuse to take me.

After about an hour of being sick & writhing around in pain on the bathroom floor – pain that came in wave after wave – I rang an ambulance. Because I sounded very ill & was struggling to breathe, this time the call-handler sent an ambulance. It arrived within 15 minutes with two very kind paramedics.

The paramedics could see how ill I was & they apologised for the first call-handler’s misjudgement. By this time, I was lying on my side in bed with a bucket beside me. The paramedics managed to get me up & did all the routine checks. They tried to give me some pain relief but I just threw it up. They got me dressed (from the left photo, I’d say they had great fashion sense!) in leopard-skin print pyjamas & some pink socks & prepared me for going to hospital in the ambulance. I asked one of the paramedics to check on Stephane as I could see he was close to tears, & she did which really helped him. I heard him say that he’d never seen me so ill before. I’d never felt pain like that & I’ve had many painful surgeries & procedures over the years.

The paramedics then helped me into my wheelchair & took me into the ambulance. Once inside, I transferred onto a stretcher. I was still being sick, it was awful for everyone. Stephane came into the ambulance with me. The pain was increasing.

Luckily the journey was quick. In no time at all, I was at Charing Cross A & E, an A & E that I know, which always helps. Once there, it was chaotic & full of patients – but A & E is always like this now in the U.K! There was a young guy refusing to be searched by the police & kicking off. To be honest, I was in so much pain that I nearly stood up & battered him myself to shut him up!However a nurse took my blood, so my needle phobia distracted me, & then I was moved into a bigger waiting room with more patients – & police (it was all kicking off on a Thursday morning!)

Unfortunately they didn’t have any beds so I ended up slumped across the seats. At one point, I was in so much pain that I kneeled down in front of the seats & laid my head on the seat.

Thankfully a nurse arrived to connect me to a drip for liquid paracetamol. That didn’t take away the pain, but it did calm me down.

I know this all sounds like carnage, but everyone who was there was so kind & respectful to me. As soon as I arrived, one of the doctors acknowledged how much pain I was in & one of my paramedics held my hand until she had finished handing over.

After a few hours & IV (intravenous) antibiotics, saline, fluid & pain relief, I’d stopped being sick & thankfully I started being able to wee once again.

Another consultant came along to take me into a cubicle so she could examine me. Unfortunately she wasn’t able to do much as the stomach pain hit me once again. The only way I could relieve it was to get on all fours on the hospital trolley. There were still no beds so I returned to the waiting room & my drip of fluids.

Time passed (I don’t know how long), then I was taken with my bag of fluids (some of you might have seen that photo on my social media, with me pretending that it was my new handbag!) for a CT scan. Again, the staff were very respectful. Thankfully, I could have this scan laying on my front, which helped dull the pain.

Instead of going back into the waiting room, I was taken to another area of A & E where I was put back on my fluids whilst they prepared a bed for me. I was then helped into bed so I could finish off the fluids. I needed the loo but the nurse recognised how awkward using a bedpan was, so he got me a commode. I was so grateful to him for that! He also said it was time that I could have some morphine.

Morphine isn’t something that I like taking because it can affect my breathing & I don’t like being incoherent in hospital, but the nurse said he was only giving me a small dose. With the dose administered, the pain almost went (see, not even morphine made the pain disappear). At this time I asked the leading question – “When can I go home?” The nurse replied saying that he wasn’t sure when & if I could go home that night. Damn. Hospitals aren’t the most comfortable of places for me.

Sometime later another consultant came by & took me into a consulting room. She explained that I had a 2-3mm kidney stone & that my right kidney was swollen, but still functioning. She’d seen the scan & couldn’t see the stone, so she felt that I’d already passed it. She made me a line drawing to help explain what was going on. She said that she needed one more urine test from me, but because all my other tests were normal, I could go home that night & then be followed up as an outpatient. I was delighted. Stephane got all my things together & we went home in a taxi – me still in my pyjamas & socks without shoes as Stephane had forgotten them! It wasn’t very nice putting my foot into wet leaves to get in & out of the taxi, but that was the least of my problems that day. I had super-strength antibiotics given by the hospital rattling in my pocket.

Once home, I got changed & went straight to bed with lots of fluids & very little food as my appetite was very low. I settled down to sleep, & then A & E rang with some news. A senior consultant had reviewed my scan at the end of the shift & had spotted the kidney stone & other ‘debris’ on the scan. As I hadn’t yet passed the stone, I was asked to return to A & E for more tests, including an ultrasound. Whilst I understood the seriousness of the situation, I wasn’t thrilled at another long day in A & E.

I got up with trepidation the next day, & my PCA (Personal Care Assistant) & I went back to the hospital. Once there, I started to have a few more tests, but then I was told that my ultrasound had been moved from 9.45am to 3.15pm. They said that I could go home inbetween, but that cost money, so I opted to rest at Maggies (the cancer centre). That was such a good idea of mine. There are some lovely people at the centre. They gave my PCA & I tea, cake, biscuits & fruit. We had a chat with the volunteers & other visitors. Just after midday, Stephane arrived to take over from my PCA, & thankfully he brought a new change of clothes.

OK so this is embarrassing to admit, but it’s part of life & as you know, I’ve opted to be open so that other people can understand what can happen in different situations. Anyone can get a kidney stone, but they can be very common in people with Spina Bifida because of the way our bladder, bowels & kidneys work (or sometimes don’t work). How I got to 53 & never had a kidney stone, I don’t know, it’s some kind of miracle, there you go! Anyway, back to the embarrassing bit. I basically couldn’t stop weeing. There you go, I’ve said it. I was wearing all relevant protection to save me from the worst, but still I needed a change of clothes. I was also dreading the ultrasound as I knew it would be problematic if I couldn’t hold my bladder.

The time of my ultrasound came. I drank as much as I could pre-scan. My name was called & I went in alone. That was a mistake. The consultant doing the ultrasound had a terrible bedside manner (although her assistant was lovely) & when she started the scan, she threw her hands up in the air & said “Is this what they’ve given me to work with!” I was furious with her. She said that I hadn’t drunk enough so I explained what was happening. The scan was painful. She didn’t believe that one of my kidneys was up towards my shoulder, until she found it. I offered to drink some more water & return in five to ten minutes. She agreed. Once outside, I ranted to Stephane & I asked him to accompany me for the second try to prevent her from being quite so nasty.

The second try was worse pain-wise & then there was the fact that I missed the bedpan & wee’d everywhere straight after the scan was over! However, Stephane’s presence meant that the consultant had to be more professional to us both. The scan images were useless. I changed my clothes once again – thankfully my first set of clothes had dried. It was awful. Totally humiliating.

I had another two or more hours waiting in A & E. I had some more tests – bloods, urine, etc. In the early evening, a more senior consultant took us into a consulting room & informed me that I might have to stay in hospital. I expressed shock because no one had said how serious this was until now. The consultant explained that he was concerned that I had still had a nasty infection in my side. My kidney was swollen & even though the stone was 3mm, because the ultrasound hadn’t picked this up or the other debris, he couldn’t be sure that I had passed everything. I knew then that he was talking about the danger of developing sepsis, but I still tried to persuade him to send me home.

Thankfully my tests came back with a much improved white cell count (7 down from 17 the day before) & other tests were normal. After speaking with the registrar, the consultant agreed that I could go home & that I’d be well enough for some planned surgery on Tuesday (more about that later). But I had to promise that if I felt worse, or if it seemed that the medications weren’t working, I had to return to A & E immediately.

I really was shattered physically & mentally. My GP signed me off work & rang to check on me. I felt so bad as I had to leave a lot of work project deadlines up in the air & ask other staff to cover for me. I slept a lot. I ate very little. I was still incontinent & my bowels started joining in the ‘fun.’ I cried. I felt miserable. I felt like absolute shit.

Chelsea & Westminster Hospital rang me to organise the last bits for my surgery the following Tuesday. I explained what had gone on but we all felt that I was ok to go ahead with the surgery as it was so minor. I had been waiting since March for it & it had already been canceled once! Thankfully I had stopped weeing all over the place so I felt sure that the kidney & debris had passed.

On that Tuesday, I still wasn’t feeling great. I dragged myself out of bed at 5am, to be at the hospital for 6.45am. Anyone that knows me & Stephane will agree that we’re not morning people!I was going to write about this surgery in another blog because it taps into the theme of disabled people receiving general healthcare but they’re often denied this. I’ll briefly cover the topic here.

I’m unable to have smear tests in the regular way because it’s too painful & because I start to spasm when I’m on the consulting table. I’ve tried several times to have it the usual way but either me, the nurse or the consultant ends up very upset, so instead, I have one every few years under a little bit of GA (general anaesthetic). I used to have a mirena coil as my contraception so whenever that got changed under GA, they would do the smear & the pelvic examination at the same time. Because my coil was removed at the same time as my breast surgery, I hadn’t had a smear for a while. Thankfully the consultant that had previously treated me, heard I was having issues & put me onto his list.

Unfortunately when I had the pre-surgery tests, my heart was racing & my temperature was 38+ degrees. The anesthetist (who’s been present at all my gynecological procedures & who’s great at putting me under) had to deliver the news that I was too unwell to have the procedure. I was gutted & actually much more worried about messing them around, but I had no choice, I had to go home. I informed work along the way & my GP extended my sick leave. (They were very supportive, I’m so lucky with my employment & my GP). To give time for everything to settle & for me to get stronger, my procedure has been rescheduled for early January.

I spent the next few days on & off in bed. The urologist called me from Charing Cross Hospital to follow up. He was such a nice man too. He explained that he had lots of patients with Spina Bifida that have recurring issues with kidney stones, & he was genuinely amazed that I’d never had one (well, to my knowledge, I might have had one when I was a little kid). He said “Whatever you’re doing to keep healthy, keep doing it!” I asked him whether taking calcium tablets to strengthen my bones during the cancer treatment had caused the issue, but he said no & that it was important to continue with these tablets. He exclaimed that my calcium levels were better than his own! He ordered another CT scan for a couple of weeks’ time to check if the stone had gone. I explained that before the kidney stone problems, my GP had booked an ultrasound due to the lingering uti. He advised me to attend this appointment but that really these types of scans wouldn’t give a clear enough image due to my anatomy. (I had a second ultrasound on 8th November at Hammersmith Hospital. The staff were lovely but I still couldn’t hold enough water to get clear images).

I’ve still got a week to go until my potential return to work. I’m still very tired, but not bedridden, thankfully. The intense pain has subsided & my temperature is normal. Most of my appetite is back. What’s kept me going is friends dropping in & messaging me. And of course, Stephane has been amazing at looking after me. Unfortunately I missed a friends’ wedding in Brighton & also spending a weekend at the sea, catching up with other old friends. I was truly gutted by that, I hate missing out on anything. But I’ve been super-tired for months so I wonder if I’d been building up to developing a kidney stone for some time.

This recent health scare has taken me completely by surprise. At least I can say that the issue was caused by my impairment this time, which makes a change! But it’s getting harder for me to manage these health conditions & the recovery takes longer now that I’m aging. I’m receiving some very hardcore treatment in a body that’s already weakened by disability.

I have a lot of hard thinking to do & choices to make about the future. It’s time to prioritise my health like I promised I would when I got diagnosed with Breast Cancer.