Laura Wilkinson is a 29 years old kidney cancer patient who found support through Kidney Cancer UK, our free counselling service and the warm and informed welcome from our closed Facebook patient support group. Laura is taking part in our Walk for a Cure 2021 event and wanted to share her journey. This is her story:
A blog by Laura Wilkinson.
The year 2020 had started in an extraordinary way. Due to the Covid-19 pandemic, the UK went into a countrywide lockdown on 23rd March. My boyfriend Ashley moved into my end terrace home with me so that we could be together for the lockdown, thinking at that time that it would maybe last a few weeks at most. On 24th March, to celebrate moving in together and the beginning of a new chapter of our life together, Ashley proposed to me whilst we were out on a walk in the countryside. I was absolutely delighted and even though the world was in a pandemic and times were uncertain, we were extremely excited and happy to be building a life together in the lovely home we shared.
Then, in June I developed a kidney infection in my left kidney and was given a 10-day course of anti-biotics, with the GP telling me to return to them if my symptoms did not subside in a few days. I had suffered over a year of recurrent bladder infections just two years earlier, but this was my first experience of a kidney infection, and I felt quite unwell.
After a few days on the anti-biotics, most of my symptoms had gone, however I still had a persistent ache in my left kidney area. I decided to be cautious and rang the GP, who reassured me not to worry and that they did not need to see me again. As this was in the middle of the Covid-19 pandemic, face-to-face appointments were only being held if it was deemed clinically necessary. At that time, I still had a feeling that this ache was not normal for me but thought it could still be the infection taking it’s time to clear out. After I had finished the 10-day course of anti-biotics, the persistent ache continued, and was keeping me awake at night as it was so sore and constant. I was using hot water bottles and painkillers for the pain, but it was still troubling me. I called the GP back and was this time given a face-to-face appointment with a GP who had previously specialised in urology. This GP, due to my previous recurrent bladder infections, and the persistent ache, referred me for an ultrasound scan, initially looking for a kidney abscess or something similar. I had the scan in July, which showed a “large complex cyst” on my left kidney. Due to it being considered as ‘complex’, as opposed to simple cyst, I was referred for a CT scan with contrast. I waited five weeks for the CT scan, which felt like a lifetime, and the GP rang me back just a few days later with the results. I knew it wasn’t good news when he asked me if I was sitting down and if I was alone or had someone with me. I anxiously asked my fiancé to join me in our bedroom, and the GP told me that the CT scan had showed a solid mass, aka a tumour, on my left kidney, and that I was being urgently referred to the urology department at my local hospital. Up till the appointment with urology, I was told repeatedly that it was highly unlikely to be cancer, due to my age.
At my appointment with Urology at the start of September, the consultant urologist took a medical and family history, and examined me, before telling me that the tumour on my kidney was deemed “highly suspicious” and that they were suspecting I had kidney cancer. I went numb in that moment, and the consultant repeated himself to make sure I had taken in what he had told me. He said “Miss Wilkinson, we believe that you have kidney cancer, this is very rare in someone your age but not unheard of”. Luckily, even though we were in the middle of the pandemic, I had my fiancé with me for my appointment, and so I didn’t have to receive my diagnosis alone, and for that I am forever grateful. I know that other patients have had to receive these kinds of diagnoses alone, and I honestly don’t think I could have coped with that. I was told I would need a major operation to remove the tumour, along with part of my left kidney, and that I would be transferred to the Royal Blackburn Hospital for the surgery, and that there was at least a six-week waiting list, because there was a backlog of patients due to the pandemic.
This is where Kidney Cancer UK first came into my journey. I found the closed patient support group on Facebook and joined, just one day after my diagnosis. I was accepted into the group and wrote my first post on the forum, shaking and crying as I typed. I was terrified, and I think that came across in my post. I was blown away by the number of supportive comments and stories of hope I received from people who had either been treated for or who were living with kidney cancer. Those comments gave me so much strength and hope at the time I needed it the most and I felt immediately part of the community. Since then, I have used the Facebook group as an invaluable source of advice and support and have connected with an amazingly supportive network of people going through similar experiences, all moderated and supported by the Kidney Cancer UK Healthcare Professionals.
Years prior to my diagnosis, I had been diagnosed with Generalised Anxiety Disorder and found that my symptoms of anxiety flared up significantly at the time of my diagnosis, and psychologically, I was struggling. One of the Facebook group members suggested the Kidney Cancer UK Careline to me, and one day, when I was feeling particularly distressed whilst waiting for my surgery, I called the careline and was put in touch with the Kidney Cancer UK Counsellor. I had 12 sessions of free telephone counselling, and the counsellor was there for me right throughout my treatment and recovery, supporting me to emotionally process what had happened to me. The counsellor was kind, empathic and non-judgemental, and made me feel so supported.
A couple of weeks after my appointment with urology in my hometown, I travelled an hour to Royal Blackburn Hospital to meet my surgeon. I had to go to this appointment alone due to the pandemic, which was nerve-wracking, but the staff helped to put me at ease. Here, I had my pre-operative assessment and was told I would be added to the waiting list for surgery. A few weeks later, I received an operation date of 13th November. It was extremely anxiety provoking waiting for surgery during the pandemic. Covid-19 cases were quickly rising at that time and Blackburn was badly affected. I was worried that my surgery could be rescheduled, delayed, or even cancelled at any time, and I knew this was a reality faced by many cancer patients.
I was told that my fiancé and I would have to isolate for two-weeks before my operation, but due to the national lockdown and rising Covid-19 cases, we chose to limit the amount of people we saw from the day I received my surgery date. My parents and sister chose to self-isolate and limit their social contact too, so that I could see them whenever I needed, and that was an incredible support. My fiancé and my family have been truly amazing throughout my diagnosis and treatment, and their unwavering love and support has been so important to me throughout, as well as plenty of cuddles from our dogs Leo and Phoebe.
Due to Covid-19, I was however unable to see my friends or fiancé’s family during the run up to my surgery, and whilst they were always at the other end of a phone call or Zoom call, I found it hard not to be able to see these loved ones in person during this traumatic and distressing time. This made the closed Facebook support group and Coffee Cake & Chat Zoom calls, which I started attending just a few weeks before my surgery, even more important to me at that time. They helped me to connect with other people and feel less isolated, during a time when I was physically isolated from a lot of my support network. I want to mention here also that on the Coffee, Cake & Chat Zoom calls, which I still attend now, five months after my surgery, the Kidney Cancer UK Healthcare Professionals are always present to facilitate and always check in to ask how they can best support us, and if there’s anything more we need from them, and are always open to suggestions on their support offering. I think that’s amazing.
Despite self-isolating for weeks, I received a positive Covid-19 test just three days before my original surgery date, which meant another agonising wait for my surgery to be rescheduled. During this time, my Kidney Cancer UK counsellor was an amazing support for helping me deal with my anxiety and frustration at having my surgery further delayed by Covid-19. I was given a new date of 8th December and prayed that Covid-19 would not affect my surgery a second time. The wait for the Covid-19 test results was agonising and added a new layer of psychological difficulty to the situation. Luckily, my second Covid-19 test came back negative, and I was admitted for my surgery at 7am on 8th December 2020.
I was incredibly anxious about going into hospital at a time when Royal Blackburn Hospital was facing soaring Covid-19 cases. I had to be dropped off at the hospital and went in alone and couldn’t have visitors for the whole time I was admitted to hospital. This was incredibly difficult for me, as I ended up being kept in for five days due to post-operative nausea. I missed my family and fiancé
so much and found it difficult going through such a major surgery and initial recovery alone. Even though it was tough being alone, my surgery was a success, and the NHS staff were amazing. Although Covid-19 left them short staffed at times, I was incredibly well looked after. The ward I was on was also a secure “no-Covid zone” and was kept extremely clean and I always felt safe from Covid-19. I also received support through Kidney Cancer UK during my hospital stay, and after posting on the Kidney Cancer UK Facebook group shortly after my surgery to say I was doing ok, I received hundreds of supportive comments wishing me well for my healing.
I was discharged from hospital on 13th December and was elated to see my family and fiancé, although I still had to self-isolate for another two weeks post-op. Since then, I have continued to access support through Kidney Cancer UK, through the Facebook group, Zoom calls and counselling. I have recovered really well from my surgery and found out at my post-op appointment in January 2021 that whilst I had a rare type of kidney cancer called Chromophobe Renal Cell Carcinoma, they managed to remove the whole tumour with a clear margin as well as saving a good chunk of my healthy kidney. This is amazing news for which I am so grateful. I am currently awaiting the results of my first follow-up CT scan, praying for no evidence of cancer!! Having Kidney Cancer has made me realise how truly blessed my life is and how important it is to be grateful for every single day. I am currently enjoying the easing of lockdown restrictions, spending precious time with my loved ones, studying for my MSc degree in Applied Clinical Psychology, and am looking forward to planning mine and Ashley’s wedding for 2023.
I am so incredibly grateful for all of the support I have received from Kidney Cancer UK. I honestly cannot speak highly enough of this amazing charity. I am taking part in their Walk for a Cure on the weekend of 14th-16th May as I want to give back to the charity which has had such a positive impact on me throughout the most challenging time of my life. If you can, I would be incredibly grateful if you could donate however much you can so this charity can continue their amazing work supporting people affected by kidney cancer, as well as funding important research into treatment options for this generally chemotherapy resistant cancer.