I haven’t been on here for a while as I’ve been trying to keep things as normal as possible but I’m back today with nervous belly. Why? Because tomorrow is Wednesday and the day after that is the day of my consultation. I haven’t got a clue what to expect and even if I was told what to expect, would I be prepared and would the expected even happen? I doubt it. It hasn’t so far.
So before the mega part of this journey gets underway, I will take the opportunity of continuing the story so far.
My visit to the nurse practitioner was extremely Covid secure which immediately put me at ease. She was very thorough too, even down to giving me an internal examination to check that my lady bit were ok. I wasn’t expecting that!
she confirmed that I had blood in my pee but no apparent sign of infection. Everything seemed in order as far as my ‘lady bits’ were concerned, no sign of any prolapse or bleeding there. I mentioned that I hadn’t had any routine tests to check my cholesterol levels or kidney function for ages and that I used to have them regularly when first prescribed Simvastatin. She checked my records and sure enough, I’d had no pee or blood tests since 2014! So she booked me in for some, which I think I had the very next day.
Rachel (the nurse practitioner) also rang me the next day to say, “I was thinking about you last night, as you do, and think you should come in for an ultrasound scan, an internal one to check your pelvic are and an external one to check your other organs”. Well, I wasn’t expecting that! And even less expected that I would be having them done at the GP surgery.
I then received another phone call from the surgery arranging a date for the scans in a few days time, which I considered to be exceptional service during a pandemic.
The following day brought yet another phone call from Rachel, to take in another pee sample and to tell me that she’d put me on the cancer pathway. I wasn’t expecting that!
She said not to worry, it didn’t mean she thought I had cancer, it was a fast track - two week wait system so that it could be investigated without delay.
That very afternoon I was contacted by the Urology Dept of the hospital to make an appointment for an ultrasound scan, which turned out to be in the afternoon of the same day that I was having the scans at the GP.
As scan day loomed I practised having nothing to eat and drinking 1 and a half pints of water an hour before 9:30 and not peeing until 10. That took some doing, but when scan day came, I was prepared and even complimented on my full bladder - I wasn’t expecting that.
The lady that did the scan was so lovely and talked me through everything. She said I didn’t need to have the internal scan as she could see everything clearly. She said she could see some fluid on my left kidney and it looked to her like I’d had a kidney stone that might be working it’s way down and she expected that I’d need a CT scan to see where the stone was, or it may even have passed. She let me go to the loo so that she could check that my bladder was emptying Ok - which it was. I told her I had a scan at the hospital that afternoon and she said it would probably be exactly the same as the one I’d just had. But hey - it’s good to get checked out and I was so relieved that she thought it was a kidney stone.
After spending a short time at home drinking even more water, it was time to go for the scan at the hospital. My daughter insisted on driving me there so that I wouldn’t have to worry about parking whilst contending with a full bladder.
it was a young lad that carried out the scan, which was very similar. He wasn’t as chatting but he ground that scanner in so much harder! I wasn’t expecting that! I told him I’d had a scan at the GP that morning and that they said I had fluid on my right kidney and he said ‘is that all they said?’ Then I started worrying. And worried even more when he sent the nurse to fetch someone else! I wasn’t expecting that!
Another guy came in and started all over again and just as hard as the other one but at least he apologised. He explained that it was likely a kidney stone but they couldn’t find where the blockage was. My right kidney was slightly enlarged but they couldn’t see clearly down the tract. So that was that. Boy did I feel battered and bruised after that!
The following day I had a call from a GP at the surgery with the results of the blood tests and scans. My cholesterol level was fine, kidney function normal, scans suggest a kidney stone, drink plenty of water and it will hopefully pass naturally. I was so relieved.
Then the hospital rang again to make an appointment for a cystoscopy. I’ve never had one of those and obviously googled. It sounded painful and I must admit I was really nervous about it. Again, Jen (my daughter) insisted that she drive me.
I went prepared as instructed with dressing gown and slippers, which it turned out I didn’t need. There was no waiting and the whole process seemed so quick and painless - and so fascinating! I wasn’t expecting that! I was able to watch the whole thing on screen and the nurse? pointed out a small lesion, just where the Ureter enters the bladder. The lesion was on top of a swelling. She then showed me the other side which was perfectly clear and you could see stuff entering the bladder through a tiny hole. She flipped back to the swollen side and waited to see if anything was entering the bladder from there but it didn’t look like it.
After that procedure she said I would need a CT scan and a TURBT to remove the lesion. Apparently I also had 2 cysts on my left kidney but they weren’t a problem. She said she would get a nurse to come and talk to me and I was to go back to the waiting room. She opened the door for me and said ‘sorry it’s not better news’. That’s when it suddenly dawned on me. Could it be cancer then? I asked. Yes it could be came the reply. I wasn’t expecting that!
The nurse came to find me and took me to a private room. She was very nice and explained to me what the cystoscopy showed and that I would need a TURBT to remove it. She explained the whole procedure, that it would need an overnight stay, that I’d wake up with a catheter fitted. That there would be blood in the bag and once it was turning a kind of rose colour, they would remove the catheter. She described the after effects I’d probably have from the catheter and painful pees for a while. She said it would take 4-5 weeks for the results to come back, at which point they would have a team meeting and discuss what the next steps would be and then they’d ring with an appointment to see the consultant to go through everything. The nurse gave me a leaflet about the procedure and a piece of paper with her number on she said they were a team of 6 nurses and I could ring them any time during office hours if I had any questions or concerns it wasn’t till some time later that I noticed the heading above the numbers Urology Oncology Nurses
I felt quite normal I think, maybe a bit in shock. I updated everyone on the family WhatsApp group and obviously Jen was there to take me home. I’m still not sure if it had sunk in at that stage, although I guess it must have as Jen came home with me and we sat and googled and I tried to find an image that looked like what I’d seen on the screen at the cystoscopy.
I think I ought to mention at some point, and this is as good a point as any, that I am really not used to hospitals or even GP surgeries really. In my nearly 65 years, I’ve been in hospital on 3 occasions. When I was 18 I had viral meningitis, which involved a 4 day hospital stay, a lumbar puncture but no treatment. At 23, my first child was born by emergency C section and that involved a 7 day stay as my wound became infected. At 25, my second child was born naturally and involved an overnight stay and an epidural.
So it’s fair to say that 40 years later I found the thought of the TURBT and overnight stay quite daunting.
It’s also worth mentioning that I haven’t ventured out at all during the pandemic with a few exceptions. I took my Mum for her last Morrison’s shop on the 13th Feb last year. Since then I’ve carried out my part time job from home. Have mine and my mum’s groceries delivered, nip to my mums once a week with her shopping. Filled up with fuel twice, been to the cash machine a couple of times and seen my family on several occasions either at theirs or at mine and that’s it. Luckily at the time of going for all these tests, the infection rate was quite low and lots of precautions were still in place so I had no particular fears on that score. Not sure how I’ll feel about the next steps as infections are skyrocketing and we’ve all been given free rein. My own habits won’t change though, despite being double-jabbed.
Very soon after my cystoscopy, I had the call from the hospital to go for a CT scan. Another first for me. I think I suffer most from fear of not knowing what to expect and no amount of googling really prepares you for it. It was fine. Really weird but fine. The stuff they inject in you just gives you the weirdest feeling (I wasn’t expecting that!) but it’s very short lived. I missed not being able to see the scans. I found it so helpful to watch the cystoscopy that I now want to see everything!
The next phone call was to arrange the pre-op, which again for a first for me - and so thorough! Height, weight, blood pressure, oxygen levels, temperature, ECG, MRSA swab.
I can’t remember at what stage I started getting twitchy about my CT results, wondering whether I’d get a phone call or something, wondering whether they’d showed I was riddled with cancer. So I rang the nurses for the first time and they put my mind at rest and told me the CT scan was purely to give the surgeon a clearer picture and no one would be ringing with the results.
The next phone call from the hospital was with the date of the TURBT. 17th June. I’d been waiting for it and dreading it in equal measure. The whole organisation was so slick. I was really impressed. I was told that I needed to isolate for one whole week prior to the op, I would be given a date to have a Covid test. A taxi would be organised and paid for by the hospital to pick me up, take me for the test and bring me back and then another taxi would pick me up on the morning of the op and I was on the afternoon list.
I was sent all the info in a letter and dutifully read it all from cover to cover. My daughter took over the shopping duties and she delivered mine into the porch while I was isolating. I downloaded Headspace, a mindfulness app as I thought it might help me relax and de stress pre op. I had another major hurdle to overcome too. To try and give up smoking. After 50 years of 20 a day, I felt sure that I had no one to blame for my ‘possible’ cancer than myself so I really needed to give it up. Was that really possible during one of the most stressful times in my life? And how would I cope in hospital - possibly 48 hours without a cigarette- I’d never even tried that before.
And so I spent my isolation reading ‘stop smoking the easy way’, I daily listened to Paul McKenna’s stop smoking self hypnosis. I started writing down the times of every cigarette so that I could gradually leave longer periods between each. I ordered nicotine replacement patches and inhaler as a backup to pack in my hospital bag. I didn’t give up completely in that time but I cut down an awful lot. I think on my best day I only smoked 4 cigarettes.
The leaflets I’d been given said I shouldn’t smoke on the day of the op and by the time that day came I followed the rules. I didn’t smoke or eat and other than one drink before 10:30 with milk which I was allowed, I drank nothing but water.
The taxi arrived right on time and off I went. Scared, hungry and dying for a fag! Once I arrived however, everything seemed to happen so quickly, I barely had time to think about it again.
As soon I arrived I was directed up in the lift to the 1st floor. I led straight into a deserted waiting room. I Whatsapped the family to let them know I’d arrived and had intended to give several updates, but that didn’t happen. A man entered the waiting room from the lift and had obviously been there before as he went straight to the desk which I’d hardly registered, picked up the phone, which I hadn’t registered and straight away a male nurse came in, directed the man somewhere while I was instructed to follow him.
(I’m beginning to wish I’d updated my blog sooner. I haven’t event got to the TURBT yet and Thursday’s meeting with the consultant is looming, after which will life ever be the same?)
Anyway, back to the friendly and jovial nurse, he put me at ease, took me to a tiny room with some lockers, gave me a gown to get changed into. Once that was all done, all my belongings were locked away, including my phone!!! No more updates for the family or reading my kindle to while away the time. But there wasn’t much time to while away. I was asked a load of questions, had my BP and oxygen levels done and then sent off to another waiting room where another nurse came and gave me a Covid test and said the surgeon would pop in and see me soon.
It was soon too. He seemed very nice. He sat down and went through my various scans and cystoscopy and I asked him about the CT scan and he said it hadn’t provided any additional information. He explained the procedure and said he would remove the lesion they’d found in my bladder and that would be sent off for testing. He said there was also a swelling there which he thought would be a uterocele which was very common and nothing to worry about but he would remove that too. He said it might be necessary to insert a stent from my kidney to my bladder just temporarily to help the kidney drain. I wasn’t expecting that and it wasn’t something I’d googled but if it was necessary so be it.
Next I had a visit from the anaesthetist who asked move questions and he took me off to another little room and that’s all I remember until I vaguely woke up to the nurse that had done my Covid test telling me everything had gone well and did I want something to eat? All that was on offer was a cup of tea and an egg Mayo sandwich. The tea was surprisingly lovely, the sandwich not so much. The nurse commented on how clear my pee was as she sat watching my bag full up. I leaned over for a look and was pleased not to see the blood I’d been told to expect.
I had to wait in recovery for quite a while as the ward was still full. I asked the nurse how long my op had been and she said 40 minutes. I think the rest of the time was spent talking about family but I really can’t be sure to be honest. In fact the whole experience seems so long ago now and almost like it happened to someone else.
It was the nice, friendly, jovial nurse that accompanied me on the long journey to the ward. It was a 4 bed ward and I got a window bed and there were 2 other ladies in the ward and the bed opposite was empty. My mission from this point onwards was to drink as much water as I possibly could so that I could make a hasty exit the following day. Other than drink water obviously my first port of call was to get my phone out and update my kids (adults) that the op had gone fine. Drink more water. Get used to having a catheter as I’d never had one before and I was petrified of pulling it out every time I moved. Kept leaning over to see if my bag was filling up and still clear. Drinking more water ….. then someone came and asked what I wanted for dinner (tea), giving me the option of shepherds pie or sandwiches. I opted for the Shepherds Pie and really wish I hadn’t. It wasn’t nice.
Then I saw the surgeon enter the ward and was really looking forward to getting the detail on the op. He stopped off at another ladies bed first. Then it was my turn. The very first thing he said to me was, “well, I wasn’t expecting that!”
I think I’ll leave it there for now. It’s really hot and I get a bit emotional even now thinking about what came next. So I’ll return, hopefully before the dreaded Thursday to finish the story so far.
