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He’s ok, it’s me – A partner’s story
By Karen Rough
Firstly, let me tell you about us – We are Karen, I’m 56 and Philip, known as Pip, is 51. We met in the late 80’s, married early 90’s and will be celebrating 30 Years of marriage in 2022. We have a grown-up son Oliver, who lives with us, and truth told, life was good.
I worked as an English teacher I had started working part time in September 2019. As a family we were enjoying life
to the full, in particular some fantastic holidays, which I took great delight in planning and organising. I am a bit of a control freak with things like that, I love to plan EVERYTHING, but that all changed in the summer of 2021…
The date is etched in my memory, Wednesday 21st July 2021, my last day of work before the summer holidays. I had planned an epic three-week road trip for the family to Scotland which we were planning to head off on the following week. My initial excitement, woohoo school holidays, as Pip picked me up from work, soon took a worrying turn as he greeted me with the words, ‘I’m waiting for a call back from the Dr’s… I have blood in my urine, I have also been violently sick…’ Pip is never ill so this news was very disconcerting. Once we arrived home and checking the phone to see if the Drs had phoned back, he just lay on the sofa moaning and breathing heavily, I decided to take control of the situation, to me he was deteriorating in front of my eyes, I called a taxi and sent him to A&E.
He was back home later, with antibiotics for a possible Urinary Tract Infection (UTI) after a bladder flush and ultrasound to check for kidney stones so, I continued with the holiday planning. However, on Sunday after his nightshift at the local supermarket – the blood was back. Now I was concerned. I had of course gone down the Google wormhole, we sat and talked and concluded it the show of blood was perhaps its ‘last hurrah’ and maybe things would settle down and so Pip went to work as normal. So, it was a huge shock when he came crashing through the bedroom door in the early hours of the morning with; “I’m off to A and E, it’s getting worse.” He was in a lot of pain, and I didn’t sleep any more that night. I really wanted to call my mum, but she unfortunately had died the year before of stomach cancer. From her diagnosis to passing it was less than a month! I was feeling so alone and not in control I just broke down.
The weekend was a whirlwind. I was able to visit Pip, take supplies, and he went through a repeat of previous treatment to clear the blood clots again with a bladder flush, more antibiotics for the suspected UTI, then was allowed home on the Tuesday morning and given all clear to travel. Any appointments for cystoscopy and CT scan were scheduled for our return and later that day we set off on our planned holiday to Scotland. Two days later in Nottingham the blood was back, and Pip seemed worse than ever. He wanted to carry on with the holiday and go to an A&E on the next leg of our journey, but what if they admitted him? I had visions of us being stranded in Northumberland, so at 6am that morning, leaving him in bed to rest for a few hours I packed for our return journey home and Pip was going to our local A&E.
The drive home was scary. I don’t drive, so Pip did the driving, in pain and with little sleep. I was constantly on edge, watching him, talking to him keeping him focused while all the time feeling sick myself. By 1pm we were home and 15-minutes later, he was on his way back to A&E only this time with a washbag and other bits he might need for an overnight stay. So, imagine my surprise when four-hours later he walked back through the door and telling me he felt like a fraud. I had in the meantime cancelled the rest of our holiday and updated family and friends of the situation. But we had made the right decision to cancel as it meant all the appointments scheduled for later in August were immediately bought forward and it was only then it became real that this might be some kind of cancer.
It was after Pip had his CT scan that we received the ‘phone call.’ They had found a mass on his left kidney. We were told the specialists would be sitting down to look at his scan results and they would be in contact shortly. Two days later it was confirmed, it was kidney cancer…. I just cried; Pip took it all very calmly as he was the one on the phone to the hospital, but I had so many questions I wanted to ask. We were invited in for a Multidisciplinary Team (MDT) meeting on the morning of 18th August. This was when I found Kidney Cancer UK’s website and their closed Facebook support group.
Sitting waiting for the meeting was nerve racking. They hadn’t confirmed if I would be allowed in with him at that point, but I had what seemed like a million questions to ask. Pip, again, was taking it in his stride, but I had Googled, read loads of information and my once holiday planning book had morphed into my cancer book.
I remember the relief as I followed Pip and the Dr’s assistant into the consulting room. Pip’s scan was on the screen showing one huge kidney; distended and abnormal compared to its companion. My worst fear I suppose, thinking of mum and her metastasised cancer was, had it spread? We were given the opportunity to ask any questions and that was the first of many and replied, ‘we didn’t think so.’ The rest of the meeting was filled with words that meant nothing to Pip but I had come armed with information! RCC, TCC, adrenal glands, robotic nephrectomy, keyhole, I had done my research and my questions would be answered, while Pip remained ever stoic in his approach.
Before surgery, which was pencilled in for 7th September, I had a lot to think about. They recommended the whole house shield for three-days before Pip’s operation, in comparison, short compared with the 2 weeks of others on the Kidney Cancer UK Facebook group. As my son and I work in education, we did as we were told. I kept work up to date with the situation, booked time off, put back up plans in place for having time off when he returned home and planned the cover for my lessons. (Did I mention that I like to plan?).
In my head Pip was going in for surgery on the Tuesday and judging my other people’s experiences and the viewpoint of the surgeon, he would be home recovering by the Thursday…
Seeing him off the morning of the operation, with his overnight bag was emotional, (I actually posted a picture of it on Facebook) it’s bright yellow with a banana on it, a little bit of Oz from one of our holidays, where we visited the Big Banana. Our good friends drove Pip to hospital as I could imagine myself breaking down and weeping uncontrollably as he walked through the doors of the ward; too reminiscent of a loved one saying goodbye to a soldier leaving for the front.
Oliver and I kept ourselves busy that day. In my head Pip would have been out of surgery by a certain time according to the ‘textbooks,’ so when I rang and found he wasn’t back on the ward I started to panic and overthink the worst a little. I was told to ring back in a few hours, and then logged on and asked a question in the Facebook group. I received some amazing and supportive responses; however, the waiting was horrible. The next day I was able to speak to Pip a few times on the phone and as the day progressed, he seemed brighter and better, just hearing his voice, albeit groggy, was a relief.
Instead of the expected two days in hospital for his surgery, Pip was in for 10-days in total. The surgery, although routine, had taken longer than expected as the kidney was huge, and they needed to perform a bit of open surgery on his stomach. I was also told the day after his surgery that the remaining kidney was taking a while to ‘kick-in’ and that’s why they needed to keep him in for longer than anticipated. During this time, he was being monitored by the renal team at another hospital, as a result I researched options available if the remaining kidney failed, of course I had gone down a Google wormhole to such an extent, that I even researched kidney dialysis places in the local area and the long-term impact of kidney dialysis as this was one of the potential treatments for a failing kidney. I was at my darkest place over that particular weekend, reaching out to friends, family and the Facebook group for comfort. This was not part of Pips recovery plan that I had planned.
Fortunately, I was able to visit, I just had to ring and book a slot; wear the appropriate PPE and I was in! Incidentally on all my visits I was the only visitor on the ward, most people were in for a day or just a few nights stay, during that time I got to know some of the staff quite well and soon became part of the furniture. It caused great excitement for the ward staff as each day I had to be booked into the visitor’s book, which hadn’t been used for a long time!
Pip looked awful the first time I saw him, swollen, bruised, not my Pip, but alive. I visited daily and by the end of his stay he got a little more demanding; can you bring? can I have? And he wanted his dandruff shampoo, this was wonderful though. We were on a roller coaster I suppose, highs consisted of a turn around the ward with his catheter trolley, very Pride and Prejudice, just needed a bonnet. Then to lows which included me visiting after he’d had a bad night through a reaction to new medication and he appeared to be getting worse. That was low and at that point I feared his recovery was going backwards and he might never make it home.
Imagine the relief, the joy, the delight when he came home. But my initial joy was a little short lived as he wasn’t in the greatest of places mentally. I also struggled, my fiercely independent husband was an invalid; he hated being so dependent on me, it was exhausting to be honest, all the things he’d done before around the house I had to do. I suppose I had taken these for granted, I was the main breadwinner, he had a role in the home while I was at work, and I was now taking on both roles and I didn’t like the person I was becoming. This made me desperate to get ‘my’ Pip back. Even the weekly shopping became a chore with having to get buses and taxis, friends stepped in to help, but I hated asking, I have always hated asking for help. Pip ended up with his stomach wound getting infected, so this involved more taxis, lifts and trips back-and-forth to the hospital.
There was a horrible sleepless night a few days into his recovery when a sneeze had caused bruising around his stomach which I noticed as he did his nightly injection. We were sleeping separately due to him needing to be propped up to aid with his sleeping, though to be honest, when he sleeps on his back he snores like a drain! I got up in the night to check on him as I imagined him ‘bleeding out,’ a side-effect of us watching far too many hospital dramas. As I checked on him the bruise looked the same but, I promptly fainted! Looking back, it was quite comical – he was sitting on the bed unable to move or pick me up, I was lying on the floor, telling him I was alright and not to panic. I think my body was telling me something, to slow down, to take care of myself, too, something I’d forgotten to do.
I think that is one of the things I have learnt from this episode in my life; take care of yourself, there’s only one of you…
Pip’s recovery is going extremely well, life for us has now returned to some kind of normality. He is not back at work yet as his job entails a lot of heavy lifting and as he works weekends, I have been really enjoying doing family things together. Theatre trips, days out, family dinners, minibreaks are back on, all those things which keeps life interesting. Situations, which might have tested our relationship have made us stronger, and together as a couple we are embracing the future with renewed positivity.
Of course, all this could change as he is currently taking part in the Rampart Trail at St Bartholomew’s Hospital in London, so I am back to my regular, organising, worrying, question asking self. I have a series of ‘What If’ plans in place for any repercussions of potential side effects of treatment, so I feel I am prepared for anything this next ‘experience’ throws at us!
And ‘A Year on the Rampart Trial’ could very well be the working title of my next blog!