A Kidney Cancer Retrospective

This time last year I was asked to speak at the James Whale Kidney Cancer Fund (now Kidney Cancer UK) Information Day in Birmingham. To say I was nervous was an understatement but it wasn't only talking in front of an audience but also the content that I'd written which worried me.
Not having had the best experience - not that I think you can have a good 'kidney cancer' encounter, I was concerned that my account would frighten any newly diagnosed patients present. When I'd finished reading I felt no better about it despite a nice round of applause and some positive comments, but I remember leaving that day feeling quite lost. I hadn't thought that talking about it helped me or anyone else, speaking out loud was quite different from sitting behind a laptop writing a blog.
I'm spending a lot of time reflecting on what I went through and reading through my blog posts while I work on my book An Unfashionable Cancer. In order to tell my story I've had to fictionalise characters, including myself and my family and most especially the hospitals and medical staff. This means I'm beginning to view my story from another perspective which is helping in an odd kind of way. Instead of me telling the story it's being told through my alter ego in the book and this is strangely cathartic.
One of the things I've begun to realise is that it wasn't because I had kidney cancer that my time in hospital was so awful, that just happened to be the reason I was there. Neither was it my condition that caused delays with treatments, results, appointments or virtually any of the bad practice. I can't deny that being signed off less than 12 months after diagnosis wasn't confined to my being a kidney cancer patient as I'm pretty sure most cancer patients wouldn't be dismissed like this. However, it was again another case of poor hospital procedure rather than something only kidney cancer patients have to suffer.
I suppose what I'm starting to see is the fact I had kidney cancer was a major shock but that my treatment for this should be so diabolical was pure bad luck.
Throughout this blog I've not included my family much, neither have I elaborated on my life as a whole. In the book I'm able to include my family and friends as well as show how kidney cancer affected my life in general, from fashion designer to cancer patient.
This too has highlighted just what a radical change I went through and I've been able to reflect on how I felt then and what I feel now. For a long while I was angry and confused and felt the lifestyle and business I'd been running was superficial and had contributed to my illness. Now I can see that it was my illness that made me feel that way, I was going through a terrible time and couldn't make sense of what was happening so instead shut everything out.
I've got a long way to go to finish my book and expect it will continue to be an emotional rollercoaster. In the meantime I have returned to work fully and although not doing all the fashion shows and photoshoots I was before, I am enjoying looking back and feel a lot of pride in what I achieved, definitely a step in the right direction.

Kidney Cancer Retrospective

Since starting work on my book I've spent a lot of time looking back, most of it over the past three years or so.

It's All Write

I've been asked a few times whether I'd turn this blog into a book and I'd dismissed this for a long while. The main reason for not wanting to share the whole story as it were is because I would be publishing information about people and places, some of whom would rather I not share it. 
Although there is of course mention in this blog about where I was treated and it's not difficult to work out by whom, some of my experience wasn't pleasant and I have no wish to raise issue with either the hospitals or the doctors.
Originally I wrote notes to record what was happening to me, the blog grew from that as I felt publishing it would highlight both the disease and the need for better treatment and research. At no point, despite failures with my care, did I want to pursue a complaint, it wouldn't have made me feel any better.
I suppose what's been hardest to do is to have had to search for information about kidney cancer, push for treatment options, even plead for results. This is why my blog has been so important to me and has obviously been read by so many others, there's a need to know more.
A few months ago I began reading back through my blog and going through my medical notes in order to find a way to put it all into a book format. There was only one way forward and that was to fictionalise my account, a story based on true events. No real names or places means that I can elaborate on what happened and produce a comprehensive story, leaving nothing out.
While writing the blog I've been careful not to mention some events as they're either too personal to me or else to someone involved in my treatment. By novelising this I can bring individual characters to life - just not name and shame. It's also a little easier to write about some of the things I found it hard to publicise, the gory details.
It's not all medical terminology and surgery scars, it has given me the opportunity to give a bit of my back story, the fashion business that came before and which inspired my blog title.
My book An Unfashionable Cancer is now well under way and will bear the same tag line;
'From running a fashion business to waking up with kidney cancer, a journey from fashion victim to cancer survivor'
I've a long way to go still as although the pages are already there I am having to rewrite every part, no easy task. My own story is still ongoing but I'm over the half way point now, three and a half years into that goal of five years cancer free. By putting the whole thing into print I hope I'll be able to close this chapter of my life and finally move on. Unfortunately though many others are only just waking up to kidney cancer so the need to raise awareness of this will continue.
If I can help kidney cancer awareness either through the blog or the book it'll be a story worth telling.

Best Letter Day

Since my pain management appointment I have received a letter from the consultant, it is the best letter I've had from a hospital professional, ever. From the start it's evident that the doctor listened as he has written in detail about me, of when and how my cancer was discovered, my treatment including where I was treated and why. He speaks about the pain I've experienced and how that has been managed so far, the drugs I've been prescribed, the way they made me feel, everything.
The letter then goes on to outline the suggestions he has made for managing the pain from now on. At the appointment he not only detailed the ways in which I could ease the pain but he found examples on the internet. One suggestion was trigger point massage with a ball, another was a TENS machine along with massage and he didn't dismiss acupuncture. For each of his suggestions he showed me examples and even advice on where to purchase - apparently a toy dog ball can be equally as good as a more expensive massage ball.
All of this was in the letter which was nearly 2 pages long, the very first letter of this type that I have had since my diagnosis over 3 years ago. What a difference it makes, how much better you feel knowing that the consultant charged with your care actually 'cares' and cares enough to detail it in writing.
The very worst example of a letter I had was my initial diagnosis letter which I should have received soon after my surgery but actually arrived nearly 2 months later. This contained the nitty gritty, or should have done. It actually read less like a letter and more like a list. What made it worse was that I'd had to have a bone scan in the meantime and to save an explanation of that the consultant simply wrote 'bone scan clear' across the top of the letter he should have sent weeks previously. Not only that, this latest result appeared in the window of the envelope so the postman saw it before me!
So I am now taking the advice given and currently sit wired up to a TENS machine which is becoming oddly addictive. I'm unsure of whether it is actually relieving the pain or just diverting my attention from it but either way it's helping when it's on. The trigger point massage ball helps to a degree although I have to hide it from the dog!
The letter has helped tremendously though in restoring my faith in consultant care.

Pain Management Revelation

A couple of weeks ago I had an appointment with a pain management consultant, something I should probably have had at least 2 years ago. Over that time I have experienced pain in my back around the area of my remaining kidney and underneath my ribs. This has gone largely unexplained and has been evident since my nephrectomy over 3 years ago.
Following a visit to the Orthopaedic Hospital I was sent for physiotherapy which was a revelation as it was discovered I was lopsided. This was probably a result of me leaning away from the pain of my surgery when I was first out of hospital. The physio was very good and I was soon standing straight and so they recommended yoga. I began a local class which I still attend weekly and has helped tremendously. However, the pain didn't go away and hurt to such a degree that I was also taking daily painkillers.
The drug I was prescribed was Gabapentin, an anticonvulsant medication that works on the nerves and chemicals in the body which are responsible for certain types of pain and seizures. It has been proven to be very effective on neuropathic pain which is why it was given to me and it worked extremely well. The trouble was that in order for it to work I was taking a pretty high dose daily and this had side effects of which I didn't always recognise. As well as blocking out the pain it was almost mind numbing, having worked in a creative job I just couldn't focus on getting back to work after my nephrectomy. For the most part I reasoned that this was to do with the life changing event I'd been through but as time went on and my dependency on Gabapentin grew I realised it had more to do with the drugs I was taking.
When I was recently referred back to hospital care and went through having more scans and xrays it was a real shock to the system. My pain hadn't been improving and I had begun to have doubts about what may be causing it, I'd never been given a conclusive reason and the answer I had been given was 'probable nerve damage'.
Not having ever liked to take drugs of any kind it had been playing on my mind more and more that the Gabapentin was doing me more harm than good. If nothing else it couldn't be doing my kidney much good and so I made a rash decision to stop taking it. Rather than discuss this with my GP or wait for the pain management appointment I decided to just stop, no weaning myself off just take no more.
Bad move. I was so poorly, for nearly a week I felt dreadful. I was incredibly lethargic and felt extremely low, that awful end of the world feeling you get after a bad hangover only double. If this was cold turkey I don't ever want to take drugs again.
By the time the pain appointment came around I'd been off Gabapentin just over 2 weeks, I was taking a combination of cocodemol and paracetomol instead so not entirely drug free.
While waiting to go in I was given some Q&As to fill in about my pain which involved answering questions on a scale of 1-10. How bad the pain became in differing circumstances, what kind of activities caused it, how this made me feel etc. It was strange having to give honest answers when I generally try to brush over the pain and especially how it makes me feel, it was quite an emotional exercise.
I was pleasantly surprised when I was eventually called in to the doctor, he was remarkably nice and engaging, speaking to me not at me as I've often experienced with consultants. He firstly wanted to know a little more about the history of my pain and then began to look at the various scan images I'd had on his pc. I was asked more questions relating to the nature of the pain, what made it better/worse, how frequent etc and then he asked to examine me. Thankfully this only involved me standing in front of him while he felt different areas of my my back. As I hadn't thought I'd need an examination I hadn't dressed appropriately (nothing new there) and had to unzip a high waisted skirt for him to get to the correct areas.
When he did find the right place I thought I'd fly through the ceiling! He pressed his thumb in so hard and kept it like that for what seemed ages but was probably only 30 seconds. After my squirming and trying to wriggle away from him (which he seemed to find mildly amusing) he asked me to sit back down and said 'I have some good news for you'. Firstly the scans show no evidence of the cancer returning (I knew this) and secondly I can't find any nerve damage either. Now this was a revelation.
For nearly 3 years this has been the line I've been told, 'probably nerve damage' usually followed up with, 'not a lot can be done'. So to hear that this 'probably' wasn't the case was the best news I'd had in ages - next to the NED.
The doctor then went on to say that his diagnosis would be that I had a large knot of muscles in my back that was causing the pain. When I think back to the way I'd struggled with the surgery pain which had in turn caused my whole gait to become uneven this wasn't surprising. He then went on to describe to me the various ways I could deal with the pain including acupuncture, massage, trigger point massage, yoga and TENS machine.
I left his room feeling like I could walk on air I was So Happy! Prior to this appointment I had been taking a high dose of painkillers and living with the fact my pain would probably never leave. Here I was walking away with some proactive measures that I could do myself to help ease and in turn maybe cure the pain, I couldn't stop smiling. Furthermore, he told me that exercise including running wouldn't have to be avoided as long as I made sure to  take appropriate action afterwards whether by massage or tens etc. which would help release the muscle tension.
I'll write more on the steps I've taken since this appointment in my next blog (I'm way behind...) - I'm still smiling :-)

Time Out

After a 3 week wait I am happy and relieved to say that I was given the all clear by the QE in Birmingham following my latest abdominal ct scan. Relief is an understatement as for the first time in a couple of years I was starting to have my doubts. Generally throughout my cancer ordeal I've remained pretty optimistic but after a series of investigations into ongoing pain I wasn't my usual confident self.
My unease had been heightened after the ct scan itself was paused while the radiographer approached me and asked if I had something on my side? As you can imagine this made me even more nervous about the results - I never found out what that was although I'm told that sometimes they pick up strange images?  More than anything though I've felt as though I've been reliving cancer just by having to attend related appointments, let alone the wait for results.
Since April this year I've had a mammogram and chest ultrasound, a scan of my womb and overies, renal ultrasound, chest xray and a ct scan. There's not much of me that hasn't been caught on a camera of one description or another and in all those images they've not found any evidence of cancer. If that's not cause to celebrate I don't know what is!
I've crossed the 3 year line and only 2 more to go before I get the definitive all clear.

Catching Some X Rays

This week I went for my annual chest x-ray which has followed closely on from a renal ultrasound and another scan of my bladder area. Just prior to this in April I was sent for a mammogram on some breast lumps which proved to be cysts after they'd also done an ultrasound of my chest area to be sure.
Before this latest x-ray I answered a few brief questions about my medical history and mentioned I have a CT scan in just over a week. This meant the radiographer had to seek advice on whether the x-ray could take place as they don't want to give me too much radiation. I'm already starting to wonder whether I've got any superpowers (apart from glowing in the dark).
The go ahead was given and another couple of inside out pics were taken of my lungs and chest area ready to be fast tracked to my GP before the CT scan date. Once that is done I don't think there'll be any more places on me (or in me) that haven't had an image taken.
Having spent the weekend before last celebrating my eldest daughter's wedding, I'm seeing more and more photo's of me pop up on social media - note to self  'I need to practice my being caught unaware face...' Thank goodness hospital x-ray departments don't have a Facebook page...I don't think my abdomen would attract many likes! I would also worry the radiographer may mention the state of my fast fading spray tan as once I'd got into the hospital gown I realised it looked like I hadn't washed for the past 10 years. Another note to self, 'spray tans look great on wedding photo's but raise some eyebrows when you're in the nip being scanned!'
So now it's just a trip through the ct tunnel for the scan I should have had over 12 months ago if I hadn't been wrongly discharged by the hospital. This will be the 6th x-ray/scan in 2 months, talk about making up for lost time. In fact only this morning I had another call from the hospital asking me to return for a renal ultrasound but when I mentioned I'm due a CT they said that would be ok.
I suppose I should be grateful for this burst of interest in my chest and abdomen, I mean now I'm really back on the radar and being taken care of. However, there's always the fear that they may spy something unpleasant which makes oblivion more appealing. The other concern I have is the CT scan itself, my first encounter with this machine wasn't good as I'd been rushed in as an emergency in great pain. Even sitting outside the scan room watching the warning lights flash off and on fills me with dread, it's like the all seeing eye.
I'll keep this blog updated as results come in, so far so good.

Third Time Lucky

What a week. I've had two hospital appointments in different hospitals where I've had a mammogram, ultrasound, blood tests and met my latest urological cancer consultant.
First up was Burton Breast Care Unit where I was referred as I've got more lumps - I kept this quiet as I was confident it would be ok. My history and my Mom's breast cancer meant they had to be thorough - and they were, they discovered a cluster of cysts. My confidence dwindled when one of the lumps was difficult to identify and a doctor had to be called in, thankfully it wasn't anything nasty and I could tick that one off and run. Despite my bravado I can now admit to a few tears when  got outside and my brave face slipped a little.
My real worry was the appointment I had yesterday at the Queen Elizabeth in Birmingham. My anxiety wasn't centred on the C word however but because this is the third hospital I've had a referral to. Having had a bad experience at my first hospital and being dismissed early from the second I almost felt like a naughty child being given a last chance. Despite reassurances from family, friends and my GP as well as support from other kidney cancer patients I was uncomfortable with having to start again.
After a two hour wait by which time I was feeling sick with nerves we were called in. The first thing I noticed was that there were two other nurses present in the room, one of which was a uro-oncology nurse specialist. This is the first time I'd seen a specialist nurse in 3 years, I hadn't realised they existed at the other hospitals and only found out about them when Macmillan asked if I'd met with one.
The consultant led a quickfire Q&A which was a little awkward as I really didn't want to speak about my previous experience, I wasn't there to complain. It was established that the hospital protocol stated that I should/would have received regular CT scans for 2 years and continuing ultrasound scans for the remaining 3 years giving a full 5 year remission period. Therefore I have been booked to have a CT scan soon so they can assess what's happening now.
I asked about my family history, my Dads kidney problems, my Aunt's death from kidney cancer and my own health record having kidney disease on it. I was told that this wasn't relevant right now and that a CT would be needed to help determine any issues. I'm still no clearer about this but will ask again after the scan.
We discussed other ongoing health concerns but again the scan will be necessary to see if there are any underlying problems. I also mentioned the back pain I've suffered with since surgery and he did say this could be nerve damage and therefore he would refer me to a pain management specialist. Again this was a first as at Heartlands I was told it had nothing to do with the surgery even though I'd had no pain before it.
The nurse specialist took notes throughout and when we were leaving came out with me to further reassure us of what would now follow. I was sent from there to have a blood test to see if my kidney is functioning properly so I can have the CT scan. The nurse gave me a copy of the notes outlining what had been said as well as a leaflet about the service and a holistic questionnaire to fill in. She was wonderful and made me feel a whole lot better.
All in all it was a far better experience than any I've had previously. As well as an introduction to a nurse specialist it was the first time I've received any kind of leaflet from a hospital in 3 years. I will welcome pain management as I don't want to remain on medication indefinitely and being up to date with appointments and scans will also be a relief.
I hope now I can put the past 3 years behind me and focus on keeping well and moving on. I'm confident that I'll receive the correct care from the QE and reassured that the nurse specialist is on hand to speak to if I have concerns. That in itself is a huge relief.
I'll update next with my CT results but I'm confident things are going well and this time is definitely third time lucky.

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.