Fear & Loathing

The date for my referral is through, Thursday 21st April at the Queen Elizabeth Hospital in Birmingham and I'm not sure how I feel about  this. Having been signed off from Queens Hospital in Burton at only 11 months this will be my first specialist appointment in over 2 years.
I've just passed my 3 year cancer anniversary and have admitted to feeling quite lost and bewildered about my ongoing care. While I can't fault the treatment from my GP, I know that as a cancer patient I should still be under the care of a specialist. This has been established and questioned by many sources now and although I was compliant in being signed off, it was the wrong decision.
It took me months to build the courage to ask about a new referral and when I did my GP was quick to arrange this, he was never comfortable with my discharge from Queens. Other factors led to this appointment as health wise I have had a few problems lately but it was a tough decision to make.
Now the date is approaching I feel terribly apprehensive but not just about the health implications. Obviously I'm a little nervous about having another scan and I'm quite anxious to ensure my family history is better examined. The fact that my Dad's suspected kidney disease and my Aunt's kidney cancer were dismissed initially doesn't fill me with confidence.
The truth is I feel like a nuisance. From the start I had a rocky journey which is what led to me changing hospital trust, it was fear that led me from the hospital where I was originally admitted. Being dismissed from my second choice hospital wasn't an issue at the time, I was actually relieved not to have to go back into that environment.
The QE is going to be my third hospital in 3 years and that makes me sad. Apart from my GP there has been no continuity of care and now I have to start again at square one. The thought of walking into a new hospital and meeting another specialist fills me with dread.
Back when I was first diagnosed I was told I should give my tumour a name, maybe of someone I particularly disliked. I didn't like this idea one bit, the thought of some kind of enemy living inside me didn't sit right. I  preferred to ignore it and hope it all just went away. Unfortunately, that's pretty much how I've dealt with my treatment ever since. Now I have to face facts and get back on the radar and that means facing up to what was the enemy within once more.

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.

Kidney Cancer Q & A

I've just come off the phone to the hospital as my 3 year 'cancerversary' approaches and I want to check the date of my forthcoming scan. With my daughter's wedding on the horizon I want to be sure it doesn't clash with dates around that time but also, they forgot to book me in last year. Thankfully my GP picked this up when I visited with ongoing back pain issues so my 2 year scan was 3 months late.
Surprise surprise, the administrator I spoke to has absolutely no record of any forthcoming appointments for me. I shouldn't actually be surprised as this is the hospital that signed me off at only 11 months - 7cm grade 2 kidney tumors obviously not ranking highly enough to warrant the supposed 5 year specialist cancer care.
I recently had to visit the doctors due to increased pain in my back and what I suspected was a nasty UTI which I have also suffered with. The new GP I had to see asked if I may have drunk more coffee than usual or possibly eaten a lot of citrus fruit???? Seriously, not a word about the fact I have one kidney owing to the other one having been fished out with a big tumor inside. I was palmed off with a 'see how you go' attitude - and I am still going, frequently to the loo.
The way my cancer presented itself was at the time, quite dramatic and the subsequent care I received so poor I had to change hospital trust. I really can't face the thought of having to change again, it's ridiculous but I'm completely at a loss as to why being treated at all is so very difficult.
My own GP has been extremely supportive but it's the lack of specialist kidney cancer care that has me totally bewildered and not knowing where to turn.
I have spoken to a Macmillan Nurse recently who was extremely helpful and very kind - I did get a little tearful on the call. She was shocked that I'd not had a specialist cancer nurse at any time during my care but more so that I have no consultant. The nurse took time to research a little and was puzzled as she said ALL cancer patients should have this care for at least 5 years. This had been my understanding but it doesn't make sense as mine ended before 12 months.
Right now I feel I have 101 unanswered questions but no one to direct them to.
Are all cancer patients supposed to get 5 year specialist care?
Does kidney cancer differ significantly from other cancer treatments?
Should/can children of kidney cancer patients be tested?
Does kidney cancer care differ between hospital trusts?
Do other kidney cancer patients suffer with ongoing backpain?
What caused the large hemorrhage in my kidney/tumor?
I could go on...but I don't know where to find the answers I need and if I can't find them is this the same for others going through similar?
I have left the large folder containing my medical notes shoved at the back of my wardrobe as I want to celebrate my daughters wedding before opening that particular can of worms. But, when I do I will be asking these and many more questions. The fact I can't find the answers means there's a lot more work to be done to help highlight the seriousness of kidney cancer and the devastating affect it has on your life.
Day to day I'm not a worrier, I eat clean, keep fit and maintain as healthy a lifestyle that I can. I run, practice yoga and I like my life to be orderly. The latter comes from having had such a sudden and startling presentation of kidney cancer, I still keep an overnight bag packed for emergencies! This is why I wanted to know appointment dates, I like to be in control of my life and not leave anything to chance. Without any specialist care though I feel I'm playing a game of chance like it or not.

Oblivion

3 years ago I was totally unaware that a large tumor was growing inside my kidney. I'm reminded of this as I approach the 'anniversary scans' that check that no nasties have taken refuge in any of my other vital organs. Despite existing well on only one kidney I'm not yet ready to let go of anything else and so I await the appointment letter with more than a little trepidation.
However, day to day I push thoughts of the C word as far as possible from my consciousness and prefer to focus on having a fit and healthy lifestyle. For this reason my daily life now compared to 3 years ago is quite different and this in turn has altered my mindset.
I no longer drink - I've tried but I am officially a lightweight compared to back then. The lack of alcoholic courage has meant I don't socialise in the same places (most require dutch courage before entering). My fiddle is hardly played as this pass time mainly took place in pubs and clubs and again, drink 'enhanced' my fiddling experience - as well as my irish dancing.
I closed my former business when I was first diagnosed and although revisited it briefly afterwards, I was no longer excited by the fashion world and found it difficult even to like it anymore.
My appearance also changed dramatically, gone are multicoloured dreadlocks and mohicans and my wardrobe is a lot less bizarre nowadays.
Before my cancer diagnosis I was in a complete state of oblivion. Not only was I blissfully unaware of the sinister goings on in my kidney, I didn't think that my lifestyle was all that bad. It's taken 3 years for me to have a good hard look at my former self and realise I was maybe pushing a few too many boundaries health wise.
I suppose I'll never know whether I drank too much, my sugar intake was too high, added too much salt to meals etc. The point is that I don't repeat the same mistakes, just in case.
I've now returned to a largely vegetarian diet and limit sugar and dairy intake as well as avoiding salt where I can. I drink plenty of water and although I've raised a couple of glasses since, my alcohol intake is negligible.
The reason I run also has a lot to do with my mindset post cancer. One of the fears I've had is of the scans picking up metastasis on my lungs, the sneaky f***ers seem to make a beeline there in many kidney cancer cases. If I can run then I feel I'd know if there were any issues in that department.
The one thing I would love to be able to do is return to that oblivion, but I wouldn't know then what I know now and some valuable lessons have been learned.
So, as I approach that anniversary date I'm making a conscious effort to be aware of the lifestyle changes I can continue to make to lead a healthier life. Leaving nothing to chance.

Running From Cancer

I haven't written since November last year, the muse left me big time.
In my last post I mentioned that I'd been invited to speak at a Kidney Cancer Information Day in Birmingham and that a blog would follow...it didn't. I now feel I've left it so long it's hard to give an accurate account of the day itself. As I initially wrote this blog retrospectively I suppose it's a trait of mine. Those issues which I find hardest to deal with I tuck away and leave a while before addressing or in the case of my blog, sharing.
The last time I wrote concerned the start of my new business which has been largely inspired by running and yoga which I attribute with my recuperation. Since then I have begun a new blog Sew Fit, Sew Healthy This has been a conscious effort on my part to distance myself from the C word and focus on the F word, Fitness.
The problem is that when I log into the new blog (as I just have) there is An Unfashionable Cancer reminding me that I need to catch up, write, update.
The Kidney Cancer Information Day was definitely a turning point. It was an excellent event put on by The James Whale Fund for Kidney Cancer It is this charity that has given me so much advice and support and so I was more than happy to give an account of my kidney cancer story on the day. However, the impact of preparing for and then actually speaking out loud had a profound effect on me.
I couldn't find the positivity I wanted to relay, my experience had been - in my opinion, awful and hopefully not common amongst kidney cancer patients. Other than thanking the Fund for their help during my illness I just wanted to apologise for having shared this tale with the audience, I even gave a disclaimer before starting! When those assembled then gave me a round of applause I just wanted to cry, I wanted to ask 'Why are you clapping, this isn't how it's supposed to be'. I just felt awful.
Afterwards, I spoke to a few of the patients there, only 5 others attended which again made me so sad, despite all the hard work and effort the Fund puts in this cancer and others like it are just not getting recognition - in my opinion. Those patients who had been through or were still being treated for kidney cancer each had similar stories of poor care, lack of information, isolation, lack of medication, no access to support etc.
When I left the hotel that day I just wanted to run, literally run away from my association with kidney cancer. I had an overwhelming feeling of 'what's the point?' I felt guilty for having shared my story rather than pride in getting up there which is why putting it into words has proven so difficult.
The longer I left it, the harder it became until the urge to put kidney cancer firmly behind me in every sense grew and grew.
This was made even harder by another action I took following the Information Day. If nothing else, one of the pieces of advice I took and followed through with was to pursue my medical records. In light of what I went through maybe I'd find answers there. Bad move.
I could write a huge essay on those findings but will sum it up as succinctly as I can; Multiple wrong diagnosis recorded, drug administration incorrect, drugs given inadequate, pain levels recorded as 0 when at the time they were off the scale and it went on. The most infuriating letter was one from the consultant to my GP afterwards which managed to get the size and grade of my tumor wrong despite histology reports to the contrary. It is a complete farce.
You may ask what I've done with this large document of information which adds insult to injury - literally. I've shoved it to the back of a cupboard where it can stay until I can face reading it again.
And there it is. The reason I want to run from cancer, the reason I want to focus on running and fitness, the reason I haven't shared these feelings earlier. What's the point.
Until 'Cancer' is recognised across the board with equal access to funding, support and in general help then I can't keep banging on about kidney cancer. Along with other lesser known forms of the disease it just isn't dealt with using the same gravity as those ranked higher and that's the truth.
In my talk back in November I included the experience I'd had in Clinton's card shop - not one I'm alone in having. When offered the obligatory pens for certain cancers I'd reacted by saying, When you have a pen that funds 'Cancer' research I'll buy it. Still waiting.
I'll revisit this blog as and when I can or need to, I still of course have a way to go before I'm given that all clear signal. There will be scans and so on which I'll update here on the blog. Other than that I have nothing else to add for now and will focus on the F word as the C word is just far too offensive for me right now.