Getting to the Positives

A blog for Kidney Cancer Awareness Week 2024 by Louise Gartside 

Cancer! Such a scary word. I didn’t know anybody who had cancer; nobody still alive anyway. For me it conjured up an image of chemo, losing your hair and dying.

These were the thoughts going through my head as I sat in the Urologists office holding my partner of just 9 months hand as the consultant confirmed this was what had been found inside me.

How could this be? I don’t smoke, I barely drink, some weight has crept on over the last couple of years but I’m heading into ‘that age’ so totally acceptable right? I’m not old enough for this, I haven’t lived my life yet, my children are still young, what will happen to them, what will happen to me, my new relationship, my loved ones.

It would have been so easy at this point to spiral completely out of control, to let my fears and worries consume me but I’m a positive silver lining person by nature so instead I armed myself with ALL the information I could. I took the free counselling offered by Kidney Cancer UK, joined the Kidney Cancer UK closed Facebook group and set about reading everything I could.

I learnt that anything below 4cm is considered benign, mine was 5.5cm so assumed to be cancer and anything below 7cm was Stage 1 so far I’m thinking this is good, it is only Stage 1, I don’t know much about cancer but everyone knows it has stages. The treatment is for either a partial or radical nephrectomy (kidney removal), mine was to be a radical, so a complete removal of my kidney and part of the ureter.

At this point my anxiety kicked in pretty hard, weirdly not because of the cancer (that didn’t sink in until after surgery) but this was major surgery, that was scary in itself but I also had real upset at the thought of losing my kidney, a major organ, something that had been part of me for the best part of half a century. I felt like I wouldn’t be ‘whole’, there would be a void inside me, a physical emptiness, I discussed this in depth with my counsellor.
After the surgery when the cancer diagnosis hit me like a train I remember her saying you go through 3 sets of grief at once: grief for the diagnosis, grief for the lost organ and grief for who you were before. It still hits hard sometimes, I’m sure it will lessen over time (it’s only been a few months since the removal).

All of my thoughts, fears, feeling and emotions were totally normal, there were so many people on the Facebook group with their own familiar story and it was sort of nice to belong to a group, the group nobody wanted to join.

Through the group though I learnt that this may not be the end of my cancer journey, I thought take my kidney out, cancer all gone, job done, live your life. Nope. Depending upon the size, grade and type will then perhaps see me facing adjuvant therapy, usually this is in the form of immunotherapy to ‘mop up’ any cancer cells that could still be roaming around your body. Hold on, there’s a Grade and a Type, who knew! So off I went to do more reading… There are many types of Renal Cell Carcinomas, the most common type is Clear Cell which is fairly aggressive. There are 4 grades ranging from the lowest grade 1 to grade 4 being the most aggressive, with each increasing grade your chance of it returning also increased.

There is always a chance of the Cancer returning, quite often in the lungs, bones, brain etc. If I was to have it come back in my lungs it wouldn’t be called lung cancer, it would still be referred to as Kidney Cancer that has metastasised. I learnt there were people in the group who had ‘mets’ in various parts of their body, they were taking a number of medications to stop the tumours from growing and even shrinking them in some cases. I learnt that you can actually LIVE with cancer, you can live many many years in fact, it wasn’t necessarily a death sentence.

The day of the surgery came round and I was understandably petrified! However, the team were amazing, a cannula was inserted in my hand and I was asleep within seconds, next thing they’re waking me up! I couldn’t have hoped for an easier transaction as it were. I was in hospital for a couple of nights, some are only required to stay one night but I had high blood pressure that needed controlling.

At home recovery was hard and I had never felt pain like it but even now that feels like a distant memory. Around 6 weeks after surgery I felt like myself again and was back to work at 8 weeks (I’m lucky I have a desk job and can work from home).

This was the physical element of it all. The emotional element was another thing, about a week and a half after surgery when the worst of the pain had subsided and I could do more for myself that is when it all hit me. When the diagnosis comes everything moves quickly, appointments, blood tests, fitness tests, pre-op appointments, telling friends and family, telling your children, trying to make sense of people telling you they are ‘sorry for you’ and then the surgery. No time to stop, think, accept and take stock of what is happening. Hence after surgery, you’re home alone, the kids are at school, your partner is at work and then you let it come, you let it sink in and as I said earlier you grieve.

7 weeks after the op I received my results, it was Clear Cell and it was Grade 4, not the news I wanted to hear. However, I was told I am unusual in that such an aggressive cancer is rarely found as early as mine was. They had clear margins which means they removed the entire tumour and it was classed as Stage 1b

I am through the worst of it all, talking about it sometimes still brings a tear but for the most part I am positive, back to myself, back to living my life to the full with music gigs, holidays and making memories!

I just have to deal every 6 months with the ‘scanxiety” – an actual term given to waiting for scan results! I have to relinquish control, this disease doesn’t care I’m young, healthy and trying to live my best life, if it comes back it comes back and all I can do is make sure my body is fit enough to deal with a fight should it come. On the other side I may actually be one of the lucky ones that never has to hear that dreaded word again. Either way, I know that cancer research has come so far that today we can actually ‘live with cancer’ and that is pretty amazing if you ask me!

I have since helped with some research for Kidney Cancer UK and I have become a member of the National Kidney Cancer Audit (NKCA) Patient Forum so I can help shape the care that people in my position receive going forward.

I wanted to somehow help raise awareness, to feel I was doing something to help others but the only symptoms I had was flank pain, high BP and unseen blood in my urine. People asked how I knew, I didn’t, it was an accidental find which is common with this cancer so instead of raising awareness I was scaring the life out of everyone!

All I will say is make time for quiet moments, tune into your body and listen to it. We rush around so much in our lives these days, we forget to be still.