I will start right from the beginning. 2013 – I was 44, mum of one beautiful daughter who was 16 and happily married to Graham of 22 years. Living a very normal life on the Isle of Man, moving from Surrey 6 years previously. I suppose like most people I took my life and health for granted (apart from having type 1 diabetes and a bad back over the last few years – this becomes more relevant later) I had always been ok.
I left my job of being an estate agent after 15 years – you know, I had got to that age where I needed a challenge and so changed my career and began working as a Business Development Executive at a local radio station. I started in the January and although stressful I was glad I made the change.
However, a couple of weeks later I can recall driving to work one morning and thinking wow, I just feel like I need to sleep, like REALLY sleep. I had lost my mojo! Nothing interested me and felt proper flat inside.
In between time my daughter had passed her driving test and I felt surplus to her requirements, no longer driving her to dancing, auditions rehearsals and the theatre. So what could I do to fill my time? My husband rode trials bikes and has done for years and years, so we decided to give sidecar trials a go (seemed like a good idea at the timeJ )
I can remember one weekend when we were riding in a quarry and I fell pretty hard onto my coccyx. Didn’t think anything of it at the time except that it hurt quite a bit.
A few weeks later I noticed blood when I had a wee. I thought nothing of it and just thought, ah, my monthly was coming. It didn’t! But the blood was gone the next few times I went to the loo so put it out of my mind. Then it happened again but was much brighter and obvious. I put it down to the fall at the trial and still put it to the back of my mind.
But when it appeared again I booked an appointment at the doctors and explained how I had been feeling and immediately was on the couch with him prodding and pressing. I did another sample and the blood was visible. Two weeks later I was having an ultrasound. I had a bit of a laugh with the lady and all was going well until we got to my left kidney and it lit up like a Christmas tree. I was told to call my doctor at 4pm that day. When I next had a wee I thought I was dying – It was mainly blood!!! I knew then something was very wrong.
Well by now I’m in a bit of a state and onto Google (BIG MISTAKE) at 4pm my husband and I got the news from the Dr that I had a 7cm tumour on my left kidney. I was told I would now need a cystography and CT scan. To be honest the Dr was pretty awful in dealing with the news and I got in a right state. I can remember the fear – it was huge, totally overwhelming, I couldn’t stop crying and can clearly remember telling Graham and my mum that I didn’t want to be a toast at Christmas and how on earth do I tell my gorgeous daughter that I had cancer! I was 44 for goodness sake – I did not fit the statistics, this could not be happening. It just wasn’t fair – why me!
Well I did manage to hide it from Beth for a while, as until I was sure, why would I give her my fear and worry – she already suffers from anxiety and I didn’t want to add to it.
So I carried on as normal during the days. The nights were the worst as this was when the fear liked to come back and I found it extremely difficult to fight the negative and morbid thoughts. It was all consuming.
My brother in law is training to be a vicar and he and I both knew of another vicar who until this happened we hadn’t realized his dad had also had kidney cancer. I went with Mark to visit him. He told me to fight the fear and count my blessings! Well I could have swung for him – count my blessings!!!! I have cancer! I mean really what was there to be thankful for.
Well this meeting did indeed help me fight the fear! He explained that I was lucky. We live in a world of amazing health care that is free, I live in a beautiful country and that I have two kidneys and could function with one and that it could be a lot worse! This did make me sit up and think! There was a lot more too but you get the picture. It took a while but I started to put the fear where it belonged – AWAY!
So fast-forward, my cystography was clear – phew. I met with the Island urologist who told me if the cancer hadn’t spread I would be ‘cured’. So, just to wait for the results from the CT scan. The waiting during the whole process and even now is the worst!! My CT scan showed it hadn’t spread. I was happy with that!
I then travelled to Liverpool to Arrowe Park hospital to meet with the surgeon. Didn’t have the best personality but hey as long as he was good I didn’t care after all we weren’t going on a date. I got scheduled for my op in May – 3 days before Beth was due to sit her GCSE’s.
I told Beth that I had to have my kidney removed but had not at this stage told her it was cancer – I suppose I was still hoping for a miracle!
Operation day and the hospital staff were very kind – I was put into a side room as being away from home only had Graham to visit me. Beth was beside herself with worry. Somehow I felt pretty calm.
Coming round from the operation was tough – I had a bit of a heart scare, not that I can remember much and swelled from the morphine, apart from that I cant say it was too bad considering it’s a major operation. I could not fault the hospital staff. (I’ve stayed in worse hotels!) the staff looked after both me and Graham, who sat with me from 8am until around 10.30pm, even bringing him food too. Beth had had to go home the day after the operation with my mum to sit her GCSE’s but had left knowing I was going to be ok J I was uncomfortable but allowed to fly home 6 days later. (Beth passed ALL her exams thankfully J )
I was so glad to be home and it was May so could sit outside in the sun, listening to the birds and counting those blessings!!!
I had a bit of a worry when my wound starting to weep but got it checked and all ok.
6 weeks later was results day – up at 5.15am for an early flight to Liverpool. To say I was scared was an understatement. Had they got it all? Did they see anything else?
Well into the consultant we went to be told they didn’t have the results as the pathologist was on holiday. Talk about choke back the tears. I would now be told by a phone call on Friday! The call came as promised – it was aggressive (although no evidence of spread) stage T2b grade 4. I was told the likelihood was it would come back as my liebevich scale was 8 out of a possible 11. Devastated once again.
It was then I found KCSN on Facebook – one of the best things to happen on this journey!
As soon as I put the phone down to the consultant from Liverpool, I had loads of questions so managed to book in with the urologist here on the Island albeit I had to pay privately to get to see him! He was awful – telling me if it came within 6 months I would be dead in two years! He told me I had an unusual type of cancer (trans-locational) so reduced my chance of a 95% living for 10 years to a 25%. Again this was a huge blow and back came the fear and tears and I was scheduled for a scan in 6 months – with my knowledge from the KCSN I questioned why I wasn’t being scanned in 3 months as it seemed to be the norm. He waffled on saying things like scar tissue, not enough time etc.
I asked him if there was anything I couldn’t do now with one kidney – horse riding and rugby pretty much.
I came home one again with a huge cloud hanging over me but decided the next day I would visit my GP to request a second opinion from a Kidney cancer specialist – thanks to KCSN I was armed with knowledge and as they say knowledge is power!
So what now, well the urologist never mentioned not being able to do sidecar trials so 12 weeks post op Graham and I entered the Isle of Man International 2 day trial. It had been our aim before my diagnosis. Oh my god!!! Grueling was an understatement but cancer was not going to take over my life and if Graham had to gaffer tape me to the bike on the second day I was going to finish! We did finish and when we walked onto the stage to receive our award emotional didn’t cover it – the support I had from the other competitors had been overwhelming – I had taken back control!!!
I am now under Mr Griffiths at Clatterbridge – as soon as I got to see him he agreed 6 months scan was indeed wrong but by this time I was already at 5 months post op. He gave me hope. I got the scan and Mr Griffiths rang me the following week to inform me all was good. I had a couple of very small nodules on my lung, which would be monitored. I was put on 3 monthly scans and to date 21 months later I am still good. The lung nodules never changed and there was recently a 1.6cm ‘something’ show up but once again is showing no change and I am back to 6 monthly scans. I am not on any treatment so far and so once again am still counting my blessings J I am still working full time and still riding sidecar trials!
Looking back I think the severe back pain I suffered from was the kidney cancer as the urologist thought it had been growing for around 5 years which coincided with the pain, had I not just put up with it and had it more thoroughly assessed my story may have been different.
I hope my story will help and give hope but most importantly count your blessings and fight the fear!!!!