I must finish recording the journey so far as tomorrow is a huge day and I’m dreading it. It’s just fear of the unknown and lack of control, I realise that. Hopefully the positivity can start tomorrow and I’ll be able to focus on the light at the end of the tunnel.
For now though, back in the hospital, after the TURBT and the first taste of how disgusting hospital food can be. With the remnants of my dinner still lying on the bedside table the surgeon approaches and says, “well, I wasn’t expecting that!” He told me that he’d removed the tumour from the bladder and then went into the orifice leading to the ureter to deal with what he originally thought was a uterocele. He said it was a solid lump and must have been there a long time and is highly likely to be cancerous. He looked down at my uneaten dinner and said it was about the size of 2 peas.
I asked him if he’d put a stent in and he said no because he couldn’t see into the ureter to insert one. I asked him if he’d put the chemo into the bladder and he said no, weighing up the side effects it wasn’t worth it as it’s only useful when there are lots of whispy bits in the bladder, which I didn’t have. And then he left for the day and said he’d be back in the morning. He told the nurse she could remove the catheter at 6 am. I asked him why I hadn’t had any blood in my pee and he said it just happens sometimes. Not that I’m complaining as it meant I didn’t have to wait for rose coloured pee before I had a chance of leaving the next day.
As soon as he left, I updated the kids via WhatsApp and I don’t know if it was delayed reaction, slowness in taking it all in, or the kids reaction to the news but it was when I started reading their replies that I broke down in tears.
I know I was only in a 4 bed ward, and one of those beds was still empty but I really wanted some privacy. Obviously I couldn’t run off to the loo as I had the catheter in and was attached to a drip that appeared to be doing nothing. Luckily a lovely nurse came along and drew the curtains and sat down and chatted to me. She was so lovely.
She offered to ring my daughter as I wasn’t really able to speak and didn’t know what to say. My daughter begged to be able to come and see me, even though visiting was not allowed. The nurse asked me if I would like her to come, if she could clear it with the ward manager and I said yes.
She came and we cried together for a while and then managed to cheer each other up. She was able to stay a long time, which was so nice. She was mothering me which was a first as, for the majority of their lives I’d been a single Mum, the rock, the support, the babysitter, the bank. And now the tables had turned.
While Jen was there the nurses had a shift change and the tape that was holding the drip in started to come loose and keep catching so that was removed and apparently wasn’t even working. I lost count of how many times I rang the buzzer to have my bag emptied as I continued my marathon drinkathon.
Jen finally left and I was left to my solitude and luckily the curtains remained closed. There was no way to get comfortable with the catheter in place, the usual high temperatures in hospitals and the general noise that went along with hospital life and constant blood pressure checks etc. The nurse was insistent that I took some paracetamol but weirdly I had no pain at all. Then the bed opposite me got a new inhabitant. And not a quiet one. There followed a stream of phone calls, drawers opening and shutting, cupboards opening and shutting. So I spent the night drinking water, buzzing for more water and buzzing for my bag to be emptied.
At 5 am the nurse came to do my checks and yet again empty my full, blood free bag and she removed the catheter. I was dreading that but it was a remarkably simple procedure that just involved me having to cough. I wasn’t expecting that! I said to the nurse I really need to pee. Trust me, she said, you don’t. Trust me, I said, I do. Then she explained that removing the catheter acted like a hoover and removed every last scrap of liquid from the bladder. She then told me that I needed to do 3 pees which would need to be measured and then I’d be able to go home. So the drinkathon continued, with a vengeance although I was petrified of going for the first pee having been warned that it would be painful.
The young lady in the bed opposite continued to make more noise than the rest of us combined so it was quite a welcome respite, armed with my cardboard sombrero, to venture for that all important first pee with instructions to pull the cord when I’d finished and a nurse would come and take the sombrero for measuring. The peace and solitude in the loo took away any fears of actually peeing. I was pleasantly surprised when I went. No pain at all. Just a weird feeling that I still had catheter tubes in place but no pain. So I dutifully pulled the cord, handed over the sombrero and went back to bed, to drink and drink.
I can’t remember which came first the surgeon or breakfast, I think it was breakfast. It was equally unexciting. I think I ordered rice crispies and brown toast with honey. The crispies were fine but the toast was inedible and I think it was the first time that the four bed occupants communicated. I must admit I struggle with my hearing. I have a hearing aid in my right ear but my right side was also adjacent to the noisy ‘air con’ unit. I wasn’t going to complain at all about that as it did make the temperature bearable, but it did prevent me hearing clearly what the others were saying.
I continued to drink for England and had another painless and uneventful trip to the loo - except for the fact that I pulled the wrong cord when I’d finished, set an alarm off and everyone came running. The staff were very gracious about my faux pas and said at least we know it works.
Then the surgeon came on his rounds with a junior doctor. He stopped first to see the lady in the first bed and I knew from the previous day it would be me next.
He told me that he’d spoken to the consultant to discuss whether to insert a kidney drain, as my kidney was still not draining properly. He said they’d both concluded that, as the kidney was healthy, it wouldn’t be worth it for the sake of 2 weeks. I never gave it much thought at the time, as I wasn’t expecting that! But was grateful that I didn’t have to have it, but I didn’t later think, where does the 2 weeks come into it? The discussion with the nurse prior to the op had told me that it would take 4-5 weeks for the results to come through but here was the surgeon telling me I’d be seeing the consultant in 2 weeks! Anyway he then went on to tell his junior doctor that I would need a chest CT and confirmed with me that I hadn’t already had one. My previous one had just been for the renal area.
So that was that. I just had one more pee to have measured and I was free to go. I drank and drank and peed. I pulled the right cord this time but it was a long wait until someone came and that person wasn’t a nurse. She took my sombrero and asked what she needed to do with it and I said it needs measuring and then I need a scan to make sure my bladder is emptying. Ok I’ll do that she said. I have to say I wasn’t expecting that as she’d told me she’d come along from the admin office - but I wasn’t going to argue as I just wanted out. It was while she was doing my scan that she told me she was a trained nurse but now she’s a trainer so that out my mind at rest. That and the fact that my bladder was empty and I was ready to go.
The ward manager just said I needed to wait for my discharge notes and they were rushing them through as we spoke. She said if they weren’t ready by the time my daughter came to pick me up they could post them. I said I’d rather take them as it would help me take in, and pass on to the family, all the info.
My discharge notes arrived at the same time as my daughter and the Nurse Manager or Ward Manager, Jo, who was lovely, explained that they were unfortunately very brief and must have been compiled by the junior doctor. I never really looked at them in my desperation to leave. Jo walked me to the door to carry my bag and meet my daughter and she said to us that unfortunately it looked like I would be returning again soon but to bear in mind the surgeon was adamant that it could be treated. I don’t recall him saying that. I remember asking him if I had options and he said, Oh definitely, it may be surgery or radiotherapy but there were options.
As soon as we got out to the car I was under instructions to have a cigarette before travelling home. It was only then I realised I hadn’t given them a thought in ages but had one anyway.
Jen brought me home and I don’t think I’d hardly walked through the door when I started crying. I think the whole experience had just totally overwhelmed me.
Jen had obviously been keeping my son and Mum updated about everything. My Mum, bless her is 93 and rings me twice a day despite neither of us having very much to say. The thought of talking to anyone filled me with dread because I was just so emotional. Jen said she’d left strict instructions with my Mum that I’d ring her when I felt ready and for her not to ring me. She also said that my son wanted to travel up from Milton Keynes to see me, or at the very least to ring me and much as I love him I could barely speak. And I really wanted to limit not only conversation but I didn’t want my kids seeing me this way.
It wasn’t long before my home phone rang, in fact I don’t think we’d even been in 15 minutes and my Mum is the only person to ring the landline other than cold callers. Jen answered it for me and sure enough it was my mum just wanting to check we were home safe, but I couldn’t speak to her.
After a cup of coffee and several cigarettes, Jen and I managed to cheer each other up a bit and she went home and I was alone. I live alone and love it. I’m happy with my own company and I love the peace and tranquillity of my home and garden. I don’t remember if I ate anything but I carried on plying myself with liquid. My mind was working overtime and I regularly got tearful. And I was so tired, physically and emotionally drained and having had no sleep the night before hadn’t helped.
I was receiving lots of text messages and WhatsApps from people that knew I was going into hospital. I answered them all, honestly about what had happened and told them I was fine texting but not having a conversation. I eventually got round to reading my discharge notes and Jo was right about them being brief. All it said was what the nurse had said when I woke up. The operation went well. But right at the bottom it said Outpatients: 2/52 with consultant and histology. There it was in black and white, I didn’t have an interminable 4-5 week wait as I’d originally been told by the nurse.
I continued drinking loads of squash and water and had totally painless pees, although there was still that weird feeling of a rubber tube or just the feeling that I knew it had been there. I took a couple of paracetamols despite not feeling that I needed them. And I had a really early night and surprisingly slept like a baby. I wasn’t expecting that!
It was a different woman that woke up early the next morning. I had a little twinge in my side to remind me I’d had a procedure but the whole hospital stay and outcome of the op seemed like a distant memory. Even a bit surreal, like it had happened to someone else.
I came downstairs, had a cuppa and a ciggie in the garden, had some toast and honey (that was edible unlike the hospital version) and proceeded to ring my Mum. She normally rings me at 9 every morning and must have had the shock of her life when I rang her at 7:30. I was able to talk about everything without getting the slightest bit upset and really, I wasn’t expecting that.
Jen is always up early with two gorgeous girls under 3 so she was the first to text to see how my night had been and I told her how much better I felt. She said they’d come over and see me later and I told her I was going to text Liam and tell them all to come too. I think she was a bit horrified that I wanted everyone there so soon after coming out of hospital but the sun was shining and nothing makes me happier than seeing my whole family together.
As soon as I text Liam to ask them all to come up, he rang me and we had a nice long chat. Within a couple of hours I had my whole family together, they arrived armed with all the ingredients to make a massive all day breakfast. I didn’t lift a finger all day and was constantly being plied with water, squash and coffee. I really took it easy as that little niggle in my side continued as a reminder but it was so lovely to see all the cousins playing together in the sun. Times like that had been so few and far between during lockdown.
My son has 2 boys who will be 7 and 11 this month. My daughter has 2 girls. One is 3 next month and I had the please of helping the second come into this world on the bathroom floor just 4 days before Christmas.
My family are my world.
