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.