My name is Neil, born January 1968, 49 going on 50, and living with my husband. We’ve been together over 19 years, and have a dog, Jay. We got him shortly after my diagnosis to help get me through recovery.
My story starts in 2014. One morning in late April, I went to the toilet and spotted my urine was pale pink. A visit to A&E and 2 CT scans later an 8.5cm tumour was discovered on my right kidney. Goodness knows how long that had been growing unchecked, but until that day I’d had no symptoms, I felt perfectly fine. I took the news with equanimity, very calmly. I was thinking: OK, take it out, sew me up and I can get back to normal nice and quickly. With hindsight that was far too blasé.
The right kidney was removed in June. The cancer was an aggressive one, they didn’t give me any numbers though. I was scanned 3 monthly. The 4th scan showed new bits, spread from the kidney, in my lung and next to my windpipe. I started on chemo and the new ones cleared up in a few months.
March 2016, I had a seizure; collapsed in the living room, and don’t remember it at all till I woke in A&E. Another CT scan and MRI and a lesion was found on my brain. Prescribed steroids and an anti-seizure medication, then had an operation to remove the lesion followed by something called the GammaKnife; concentrated radiotherapy. That seemed to have worked. Assuming the seizure had been a one off, the medication was stopped. Biggest issue; having a seizure meant I had to surrender my driving licence. No driving or pursuing my hobby; riding my motorbike.
July 2016, I was given the all clear, nothing was showing on the latest CT scan.
Six weeks later another scan showed multiple lesions on my brain. They couldn’t operate on that many so put me on a different anti-seizure medication. Then I had 10 consecutive days of full head radiotherapy to kill off those lesions. Possible issues with this; within 2 years I could start losing my memory. Not a good choice but it was either that or let the lesions take me out even sooner.
December 2016, I was given the all clear again. Still nothing going on in my lung and the lesions were dormant.
February 2017, I found a lump on my buttock; turned out to be an abscess. No one could tell me the cause, naturally enough I assumed it was cancer related. It was surgically drained then I had weeks seeing a district nurse to keep changing the dressing. Finally it healed, but it did take a long time. They took me off chemo for a while as it was interfering with the healing process.
June 2017, I had a second seizure; again I don’t remember it happening at all. I was watching the MotoGP, then the next thing I remember is waking up in hospital. Scans showed nothing new so no idea what had caused it. Was put on anti-seizure medicine again and so far, touch wood, that’s done its job. I have an appointment at the epilepsy clinic in December; no idea what they’re going to do with me so should be interesting.
Despite showing all clear I’m still on a low dose of the chemo to prevent anything resuming. Fingers crossed that continues to do the job.
During the past 3 ½ years my emotions have been all over the place. Initial shock, positive when I had almost a year with nothing showing, upset when the nodules were found, happy when the chemo beat them, upset with the first seizure, the lesion and loss of my driving licence, happy again when the brain surgery went well, depressed when more lesions were found then the radiotherapy, happy to find out the lesions were dormant, or dead I suppose. Throughout all this, I refer to it as my adventures, I have generally stayed pretty positive, always on the outside and pretty often on the inside. I am a great believer in keeping a Positive Mental Attitude. It’s hard sometimes but it’s either that or sit in a corner and cry, which to me would be a complete waste of whatever time I have left. I have been paranoid, worrying that every ache, pain, twitch might be cancer related.
It’s fair to say my own strength on its own could never have carried me through the last 3½ years. The support of my Husband, family, friends and my dog all added substantially to my positivity. My fellow members of the KCSN have been awesome. Being able to speak to people who have or are going through a similar thing, or know someone who is, is enormously beneficial. I needed to be reminded it’s not just me.
I do accept that my time is likely limited but equally I’m still determined to get my telegram from whoever our Monarch is in 2068.
I have had plenty of side effects from the medication I’ve been prescribed at various times. The chemo has mainly caused tiredness; sometimes I was sleeping 16 hours a day with no inclination to do anything at all. Have had stomach issues, mainly diarrhoea, which meant having another tablet to settle that down. At one point I was vomiting after every meal, so another tablet was prescribed to be taken an hour before eating which did the job.
Here and now, November 2017, I’m feeling OK. Am on 3 pills in the morning, axitinib, the chemo; lamotrigine, the anti-seizure, and dexamethasone, to protect my stomach from the others. In the afternoon I just have the chemo and anti-seizure medicine. I wasn’t drinking enough water, I upped that and my energy came back.
At my last Oncology appointment the Dr thought I might be anaemic, another one that can make you tired. I haven’t heard from him since which means I’m not. My stomach and toilet visits have returned to normal. I’m currently waiting for work to write to my Oncologist to confirm I can go back. From a keeping me sane point of view I definitely need that.
If you’d like to read about my adventures in more detail I do write a semi-regular blog. You can find it here… neilfaraday.wordpress.com