For the Record

Today is the anniversary of my fathers death, he died 36 years ago very suddenly of a heart attack. I remember very little about him as I was only 12 at the time, I never had a 'grown up' conversation with him so don't feel like I know the real him.
There are so many questions I'd ask him, so much I'd like to find out but right now there's a very pressing question I need answering. 'What was wrong with your kidney's?'
The little I do know is that my Dad had problems with his kidneys, he had been hospitalised while still a young man and as he grew older suffered terribly with kidney stones. Family members know a little about his condition but nothing conclusive and so today I approached the NHS records office.
After my 3rd phone call I was put through to someone who said that his medical files would have been destroyed after 25 years, no joy there then. I've no one else left to ask and therefore may never know exactly what kidney issues he had.
My own medical records show that in 1975 and '77 I had procedures to investigate my kidney function by having  pyelography (Google it...it wasn't enjoyable at aged 10). Next to this information is written 'Kidney Disease', no explanation just those 2 words.
All of this I told to my consultant when admitted originally, all of it was dismissed without investigation.
I have another referral coming up, this time it'll be to the QE Hospital, Birmingham, I was hoping I'd be able to share some family history at this appointment. My biggest concern is that if there are any hereditary factors then my two daughters may also share this risk.
Without medical record evidence though I think I've reached a dead end, literally.

Kidney Cancerversary 3 Years

A glance back before I move forward...

It's a longer post than usual but these are the notes I spoke from at the Kidney Cancer Information Day last year, I've edited a little. It was that day that gave me the courage to return to my GP and pursue the answers I still seek.

Kidney cancer is an unfashionable cancer but the statistics are rising, so much more needs to be done to raise awareness and beat this disease. One thing's for sure, it won't beat me.

Before

I wasn't ill. Aged 45 I ran a small business designing and selling clothing for entertainers. At the beginning of March 2013 my husband and I had just celebrated our 25^th wedding anniversary in London and life was good.

On 13^th March everything changed, I woke that morning with what I later heard termed ‘a gross hemorrhage’ and shortly after collapsed in the most excruciating pain I’d ever felt in my left side. Via two other hospitals I was taken by blue light to Heartlands in Birmingham with what by then had been described ‘a mass in my kidney’.

Once I was hooked up to drips and drains etc I was left overnight in a renal ward with staff who seemed as clueless as I was as to what was actually wrong with me. The following morning on a ward round a registrar checking my notes told me casually that I may need my kidney removing with the cancer inside...and there it was.

Alone with no family, no nurse, doctor, specialist, Macmillan nurse or anyone to hold my hand, there was the news we all dread, I had cancer.

This may not have taken me aback as much had I not been present for my Mothers breast cancer diagnosis which conversely took place in a specialist centre with all of the aforementioned people present. This guy had to be kidding right?

It was 6 days later when together with my husband we wrote a list of 12 questions that remained unanswered and asked to see a doctor – the consultant I was told was away on holiday. Question 2 was ‘What are you removing and how do you know?’ after all I’d had no biopsy and still no actual diagnosis of cancer from a specialist. The answer we received was simple, ‘It’s cancer, we know a dirty big tumour when we see it’.

The rest of my hospital saga can be found on my blog anunfashionablecancer.blogspot and I'm sorry to say my experience did not get any better. So much so that after the 6 week check up with the surgeon it was starting to become apparent that I could not stay with this hospital trust. One of the questions we asked that day was, ‘What are the chances of the cancer having spread?’ to which the answer came, ‘You may have a tumour this size (at which he made a dot with his ballpoint pen on the desk) in your lung right now but we wouldn't be able to pick it up. Either walk out of here and worry about it or get on with life as best you can’. The other concerned back pain I’d developed in my right side which the consultant immediately said ‘had categorically nothing to do with his surgery’. Looking back now, I felt more as though I’d been delivered bad news than any sense of relief as we left that day. I never returned and shortly afterwards my GP helped me change hospital trust.

After

During my stay in hospital I kept notes, firstly so that I could relay to my husband what was going on as dosed up on morphine and with so much happening to me I couldn't understand it all myself. My medical knowledge was increasing daily as words like embolisation had never entered my vocabulary let alone taken place in me before. These notes are what became the beginning of my blog.

Post surgery I struggled with pain, particularly my back. I also struggled with coming to terms with telling people where I’d been and why. My former business was loud and happy, I’d had a mohican when first rushed into hospital and before that multicoloured dreadlocks. I was discovering that I’d not only lost my kidney, my confidence was dwindling. The blog became an outlet for what was happening to me and how I felt about it.

I still had so many unanswered questions and no one to ask. A GP had advised ‘Don’t Google It’ and I’d steered clear of putting kidney cancer into search engines however, I felt cast out by the hospital and other than my family had no support network – neither did they. That’s when I found the James Whale Fund (now Kidney Cancer UK) which really did help me no end. From them I was able to hook up with a few others going through similar and was able to recognise symptoms, fears and feelings.

As I continued with my blog I began to share it on twitter, I had a large following from my fashion business most of whom were completely bewildered when faced with tweets about catheterisation! However, I started to see an increase in views and began to receive messages from other kidney cancer patients and carers as well as people facing cancer of other types.

I transferred to Burton Hospital Trust under the care of a consultant in their urology department, she was extremely pleasant and welcoming but – I was signed off after only 2 visits. At that time I was more than willing to leave hospital care as my experience so far had been dreadful however, only 11 months specialist care for a large grade 2 cancer didn't seem right?

Now

It’s 3 years since my sudden cancer diagnosis and I am still without specialist care, the backache remains as do other related health issues. I am fortunate to have an excellent GP who has done all he can to help and advise including arranging an MRI scan and appointment at the Orthopedic Hospital, Birmingham concerning my back pain. From this I received physiotherapy, something that was missed in my hospital care and which led me to begin a yoga class – I'm still going over 12 months later and it’s helped tremendously.

In the absence of any specialist kidney cancer care I have made sure to maintain as healthy a diet as possible – something else that wasn't advised on by the hospital. I've cut right down on dairy products and of course salt and sugar and I've been a semi-vegetarian for over 10 years so eat hardly any meat. Yoga has played a big part in my recuperation but I needed something else and so started running 18 months ago. I now run at least 3 times a week and have recently joined a running club to help improve my distances. I love to run, when I’m out I don’t feel the pain in my back, so much focus is on pace and breathing I feel running is a form of meditation and I couldn't do without it now.

After being asked to talk about my cancer journey at a Kidney Cancer Information Day last year I took some good advice from both specialists, patients and carers who attended. Since then I've spoken to the PALS (patient advice and liaison service) about being signed off early, unfortunately they weren’t very helpful so I spoke to Macmillan Cancer. The nurse I spoke to was horrified that I’d been signed off and confirmed that ALL cancer patients should have at least 5 years specialist care.

I also took advice to request my notes from Heartlands Hospital, now there’s a can of worms. The large file was littered with mistakes from my age and length of my hospital stay to the size and grade of my tumor. Having had an embolisation I have since been told that this would have shrunk the tumor by starving it of blood. As the surgeon was away on holiday I was left for 12 days before surgery to remove the cancer by which time it was smaller than the original scan. It is this size that was quoted to me, not the original tumor size.

Had I still been a kidney cancer patient it would now be time for my 3 year CT scan, my GP is arranging this for me and has also taken a look at my medical records with a view to getting me an appointment with another renal consultant.

3 years ago I was oblivious, I was neither aware I was ill nor did I worry about it, cancer certainly didn't keep me awake at night. I don’t worry about it now, what concerns me is that I may not be doing everything I can to avoid getting unwell again because what really scares me is not being in control. I’d hoped that my cancer journey would be plain sailing by now but without that specialist care I still have those nagging doubts, is everything being done that should be?

I continue to look for those answers.

From Blog to Print

I've been blogging now for nearly 3 years. It started from my scribbled notes whilst in hospital when I was first admitted on March 13th 2013 - not the most auspicious date.
Trying to make sense of all that was happening was made easier by scribbling down notes as it happened, everything from where I was, who treated me, how I was treated and of course what I wore. The latter being most important to me at the time having stepped out of the dreamy world of fashion and straight into a cancer nightmare.

A few weeks after surgery whilst recovering at home I decided to type up my notes which is when I discovered Blogger. It was ideal as I could continue to update as I wrote, I hadn't anticipated then that my personal story be would read by so many others, mainly of course patients and carers going through similar experiences.
In less than 2 weeks it'll be 3 years since I first began scratching down notes and although the book is filed away, I still take it out from time to time. The reason for this is that my cancer journey is still ongoing and I keep appointments dates etc in there. Most of what I write goes straight into this blog which has now seen well over 12,000 views and received lots of feedback.
It's due to the feedback that I finally made the decision to put the blog into print, I have been working on this for only a few weeks but it's starting to come together. As well as my own story I am drawing on the experience of others to help fill in some gaps. My last blog post was addressing many of the questions I still have relating to kidney cancer treatment and aftercare. Hearing how other patients and carers have dealt with the disease and the differences in cancer treatments across the UK has been extremely useful research.
If you or someone you know have a similar experience with kidney cancer I'd love to hear from you as it's been a great source of help being able to share what has happened. Kidney cancer may still be an unfashionable cancer, I'd certainly not heard of it before my own. However, awareness is vital as statistics are increasing year on year.
I still have a long way to go with my book project but I thought World Book Day would be a perfect date to let you know this latest development.