Catia Pontes-Kicks was diagnosed with kidney cancer and is recovering from the full removal of her left kidney. She is also recovering from a high risk pregnancy, which was the reason for the incidental finding of the cancer. She is a registered nurse working in the NHS in surgery at a specialist lung and heart centre. The founder of the health blog website ‘Unchain Your Health‘ and the unique entrepreneurial Facebook page aimed at mothers in business, ‘Mumpreneurs’ Crown’, this is Catia’s story of how her kidney cancer journey began.
The NHS gives blood, sweat and tears to ensure people shed less tears over loved ones. Love it or hate it, we need it. I love the NHS and believe in it with all my being. I work for it and have been privileged to work for Trusts where optimal is the norm and expected. But does it have problems? Yes.
I have devoted my life to the NHS, so I never expected having to fight tooth, nail and grit for my own personal basic care. The beginning of my crazy journey was spent septic in various hospitals in Portugal while I was on holidays. I was pregnant at the time. Initially they missed it; I was given no intravenous fluids and no intravenous antibiotics even though I had been throwing up the whole day. I was just sent home with two basic pain relief, one of them wasn’t even suitable for pregnancy.
Eventually I went to a reputable teaching hospital, the one I was born in, and was there for 8 days. I was so unwell I thought baby and I would not make it. There are few times in life when you find yourself apologising to your unborn child for anything you might have done that meant they would not experience the world. And moments when you think of your older child and feel you may not be able to see them grow.
So, when I eventually turned a corner, be it with a suspicious mass in my kidney which needed investigating when I got back to the UK- it was a relief! And the mass would certainly be a cyst or stone, right? The worst must surely have been behind me now, right?
When I arrived in the UK, as I was pregnant my GP said my care was delegated to my OBgyn (obstetrician/ gynaecology) team, so she did not request tests or book referrals. And my OBGyn team was booked up so I could not get an appointment.
Luckily – and I don’t say this lightly as it cost me tears of having to overcome yet another mountain – there was a very high risk my baby would be born with Trisomy 21, so I was assigned a specialist midwife (one with a heart the size of the world). The lovely midwife was instrumental in getting me to see the doctors, and requesting blood tests…
Despite all that, I fell through the cracks of the system. I was meant to be on the two-week pathway. You see, the discharge letter from Portugal was in English and highlighted the suspicious mass urgently needing investigation. According to the NHS bill of rights when there is such suspicion then the patient is meant to be on a two-week pathway until they are seen by a consultant, but the ultrasound request on my kidney was lost amongst the sea of baby ultrasounds.
By the time we had realised that the wait would be pointless – no appointment letter was coming through – it was the end of October. The ultrasound was in November and with that it warranted an urgent referral to urology. And again, you guessed it, once more I fell through the cracks and my appointment didn’t happen!
I finally got an appointment to see a Urology Consultant on 19th December and went ahead to sort out childcare for my 7-year old so that my husband could come with me. Something in me said I’d not want to drive back. Then, could you believe it!? A few days before the appointment I received a voicemail cancelling but offering me another date for the 2nd of January. Desperation took hold of me! I felt weak, sick and devastated in the same breath!
I called the Urology co-ordinator back and said there must have been some sort of mistake, my appointment could not possibly be cancelled again. I explained my circumstances, only to be told that because I was pregnant they would not be able to perform many tests anyway! Plus, my referral had not been sent through as urgent.
I stated – and I am not faulting the lady I spoke to or the Urology Department – that the system was failing me. I was way beyond the two-week pathway. I was working for the NHS, and at that precise moment was fighting to ensure my patients awaiting cardiac surgery didn’t fall through the cracks. I was so sad and I felt totally lost! I give all to my patients, so they have the best experience of the NHS possible, yet there I was fighting for my NHS Charter Right to be upheld.
I basically refused the cancellation and said would turn up at my appointment time and not leave until I was seen! If it was serious enough, I wanted a urologist to tell me what could or not be done, not an admin person. If it was necessary, they would consider interventions in pregnancy or early delivery if that meant my life was at risk.
The person on the other end of the phone either took pity on my circumstances or fell short of a retort and gave me a prostate clinic to attend, and she gave it as if it was a punishment. It was not, I was massively relieved, I would finally get to see a urologist. I became aware of my blessings when the urologist turned out to be a consultant I had worked with.
So please if you feel in your gut something is not right, go and get checked! Don’t let others dissuade you, don’t be put off! You know yourself, so stop at nothing to see a Health professional. But please, keep your head, and more importantly your cool! We lose all arguments the moment we become aggressive, whether justifiably or not.