Blame

I have thought long and hard about writing this post - blame is not a pleasant verb when used to point the finger. However, my finger is poised...
How many times I have asked myself the question 'why me?', along with so many other hundreds/thousands/millions of cancer sufferers and survivors. Was it something I ate, my lifestyle, did I worry to much, work to hard or drink too much? So many questions.
More specifically and the recurring question for me is 'why kidney cancer?' It still puzzles me given the statistics and general reasons for this disease, foremost being smoking, drinking and obesity, oh and the fact it is most common in men.
When I speak about blame I'm not only looking inward at the ways I may have been able to prevent this cancer myself but also at factors out of my control. If I hadn't taken on a certain job and met certain people which certainly led to more stress and financial uncertainty...but then with cancer, there are no certainties.
In the cancer lottery why was I picked and moreover why did I end up on the kidney cancer team? If I liken it to school sports lessons it's like being one of the last ones chosen or in a raffle missing out on the wine and chocolates and getting the Yardley bath soap.
Don't get me wrong here, I haven't got a cancer preference...My Mom has gone through breast cancer, my Uncle prostrate cancer, an aunt died of kidney cancer and another Uncle lost his battle against bone cancer. If I had a choice I'd decline the invitation to join any of the cancer teams, it's just that team kidney didn't have as much of a following. For this reason the aftercare, information and general knowledge available with diagnosis wasn't good.
Going back to that point of diagnosis, the bit where I was eating my rice crispies in a hospital bed and the doctor on ward round mentioned the tumor I needed removing...I blame him for not bothering to find out I hadn't been told I had cancer. I could go on with my pointy finger and aim the blame at lots of things like this but as in this doctors case, he didn't intentionally upset me. He hadn't decided to break the news that I had cancer in a 'Surprise Surprise' manner, it just happened, he was sorry. But, I can't get rid of the blame.
I needed to know more but didn't want to have to google it.
My need to be better informed was only heightened when other people echoed the questions I needed answers to, when I discovered I wasn't the only one who needed to know more. My lack of knowledge about the illness I had shocked family and friends who presumed that I would be in possession of all the facts after a stay in hospital. The sum total of my understanding of kidney cancer was that the tumor was in my kidney and both would be removed, job done.
Maybe it's the same for those unfortunate enough to be picked for the other teams like breast cancer, maybe the questions never end. My Mom has never truly believed the cancer has gone and still worries it will return. The only difference is that she goes to dedicated group support and her appointments are in a breast care centre, oh and she has an array of pens, bags, keyrings etc she's collected for her cancer.
Kidney cancer seems to be the unfashionable cancer and it picked me. I need to stop allocating blame but to help do this, I need answers. Likewise, I would like to think that other people being diagnosed at this time haven't had to face the same wall of uncertainty that I did. Part of the reason for this blog was to try and put down my experience in an honest account that wouldn't frighten someone facing kidney cancer. After all, I am a survivor.
However, maybe now it's time to start getting those answers and to let go of the blame and do something to help with support for kidney cancer patients. After all, it's rude to point.

10 Months post Nephrectomy

I had an appointment with my GP today following an ultrasound scan a couple of weeks ago.
Aside from the fact I have been writing this blog for the past 10 months, I do still find it difficult to talk about my kidney cancer openly, more so I don't like discussing detail. Therefore I am not going to fill you in on the why's and wherefore's of my latest investigations other than to say it was a bit more than I bargained for and involved something that resembled the microphone Terry Wogan used in Blankety Blank! Thankfully there was nothing unusual to report from this ultrasound and I will not be filling in any blanks as to where and why.
I  discussed the continuing back pain with my GP and have been prescribed Gabapentin and although my doctor explained very well what these would do I'm afraid I can't relay this information exactly as I'd probably get it wrong. It is something to do with the nerves transmitting pain I think...either way I'll give them a go albeit reluctantly as I'm not a fan of tablets of any kind.
So, 10 months post surgery and how do I feel? If you ask me this generally I will say fine just have some continuing back pain that's being investigated. If I answer honestly I can tell you it's starting to get me down.
My left side where the scar is still feels mostly numb and tingly to touch, the doctor said that nerve damage due to surgery means this may not get much better but that this was unavoidable which I understand. Beneath the scarring it is still tender, this I found out when the doctor examined me. I generally don't touch it if I can help it and definitely don't apply pressure as it's still uncomfortable if I wear tighter clothing. Also, I still can't lie on that side.
On my right side I have this uncomfortable back pain in my kidney area (hence initial worries...) It is worse when I am sitting/kneeling/bending and varies from mild ache to quite painful throbbing. More recently I have developed a pain just underneath my right rib, again worse when sitting/bending and this is almost constant but not major it's more uncomfortable. Occasionally though it becomes a sharp shooting pain.
This right sided pain could very possibly be unconnected to the kidney cancer, it's only because it's developed since surgery that the two are compared.
The day after my surgery I was told I had to get out of bed and walk - I did. This was possibly one of the most painful and frightening memories I have of hospital as I felt I had to do as I was told but the pain was unbearable. Following this the cathater was removed and I therefore had to walk to the bathroom - again incredibly painful. I have vivid memories of trying to walk following surgery and every time was a painful experience, this went on for some weeks.
Now it does seem logical to presume that in order to compensate for the pain on my left side I put more weight on my right? I think I even wrote in this blog that I had a lopsided gait for a while. Maybe this is the root cause of the back pain I now have, either way I just want it to go - without drugs.
I am doing the McKenzie exercises still and added yoga to this. I walk at least 2 miles a day or more and am generally very active which is good. I just can't sit still!
Next week I see my new consultant who presumably now has all my information transferred from Heartlands and so will be better informed in which case, so will I.
Till next time.

Cancer & Fashion

Ok, so two words that don't go together are Cancer and Fashion right?
Why not? I try to avoid statistics so without giving percentages, there's a hell of a lot of us affected by this disease one way or another. Not only does it f**k up your health, it can play havoc with your wardrobe.
I'm really not being flippant here. You ask someone who's had the trauma of mastectomy about bra shopping or a person who's undergone abdominal surgery about waistbands. This is without even going down the chemo route and how hair loss affects your confidence in how you look.
From the hospital bed to the supermarket aisle, no matter where we are - how you look will undoubtedly affect how you feel.
I am embarking on a project to work with the Sharon Fox Cancer Centre to develop clothing and accessories that are made for cancer patients with a fashion conscience. Just because you receive that dreaded diagnosis does not mean you have to abandon your dress sense and forget about your individuality.
There are many wonderful products available that are designed specifically with cancer patients in mind, the difference I would like to add is individuality.
To start this off we are planning to run some headscarf workshops to show some simple ways to make and accessorise headware. With the focus on individuality it'll be a chance to experiment with a range of fabrics so we can design for everything from punks to princesses. As well as the scarves we will be looking at ways to disguise those awful drips an drains for those of us that have had to endure one or the other during hospital treatment. I personally had an 'irrigation system' which I preferred to call my 'Juicy Couture'.
The workshops will be a chance to meet, chat and make and will hopefully provide a chance to sit and relax while making something that can benefit either the maker or the centre. At the same time it can be a useful source of information and ideas of how we as a group can put cancer firmly on the fashion map. Lets not allow cancer to dictate how we look, we really can 'make' a difference.

All Change

First of all, Happy New Year to those of you who have read my blog since last year - I hope and pray for a healthy, happy and positive year for us all.
My friend Lisanne Vos who writes RUKidneyingMe Blog and is herself a recent kidney cancer patient and who has been a huge inspiration, asked me what my word for 2014 will be. Lisanne has chosen 'Magnificent' and so was a hard act to follow...I kept coming back to the same word, 'Positivity' and so have stuck with this. So here's to that + sign!
As far as my treatment goes, I have now successfully changed hospital trusts thanks to the help and advice from my GP. My first appointment with new consultant was just before Christmas and was a pleasant experience which is a first, previous encounters have not been as good. The consultant couldn't examine me as she had no record of my treatment as none of the notes had been transferred from Heartlands and she therefore had no history of my case. As introductions go though it was very nice, I even got 2 hugs off her.
She explained that she would attend a meeting with other specialists on 9th January where - providing my notes had been received, they would discuss my case and possible treatment. I wait to hear for news of this now.
The back pain has continued and although I'd like to say there's some improvement I'm afraid it's pretty much the same, the pain has also moved up to just underneath my ribs at the front. I find sitting down uncomfortable for any lengthy period and need to move around frequently to relieve the pain. I am trying not to rely on painkillers and so rarely take them, only usually at night time if the pain interrupts my sleep. It's a mystery still which is why I'm keen to know what the new consultant makes of this. One thing I know for sure, I had no back pain prior to my surgery, it has started since.
I have an ultrasound scan booked later this month but don't want another ct scan just yet, I've had 3 now in 10 months plus a bone scan so no more radioactivity for me thank you.
To try and alleviate the pain I have tried McKenzie back exercises as advised by my GP and more recently pilates and yoga. I am persevering with the yoga though only at home, the class I attended with a friend just resulted in us giggling the whole time!
I have continued to draw a lot of positivity from friends and family and from other people I've met through this blog since my diagnosis. It still amazes me how truly inspiring some people are and as such I do plan to give back something of this positive vibe through my work. More on that in my next post...
Here and now I am still thankful to be rid of my cancer and fit and able enough to get up and out and about so no excuses - time to get back to work and make a difference.

2013 When Time Stood Still

At this time of year I hear so many people comment on how quickly time has flown. For me it paused in March and from then on life continued as if in a dream where time is of no relevance. People came in and out of my life, things started and stopped, days came and went but life itself was on pause. I had cancer.

Fortunately this experience started suddenly with no time to prepare, no appointments to make or results to wait for. My cancer - although having been inside me for a while, decided to introduce itself on March 13th with a grand gesture by hemorraghing. My subsequent ambulance rides, scans and hospital admission were super swift and there it was, kidney cancer.

Once in hospital I was embolised (scroll back - it's all in the blog) and thereafter had a nephrectomy (yes my medical vocabulary has grown) to remove the tumor in my left kidney.

It was the days, weeks and months that followed that stood me still. 

As many cancer patients will know, you don't often know you have cancer until it's discovered and you need surgery to remove it. There's not usually an introduction, it's not phased in so you can get used to the idea, once you know it's there you really don't want it to hang around and get familiar.

In my case the tumor was encapsulated inside my kidney and so thankfully hadn't started to have a look around any other organs and move in. Once it was removed I was on the 'watch and wait' (to which can be added 'hope and pray') that no cells have made the move elsewhere. This was when time began the stop starty thing.

Once back home and recovering I was unable to do most of the day to day things I was used to; walking the dogs, cleaning the house, shopping and of course work. You would imagine that time would drag with so much of the day spent resting and recuperating but it didn't. During this period of rest I felt almost removed from my former life in such a way that I could look at it from a distance and decide which parts I missed and what I could do without. Rather like New Years Eve when you can reflect and make resolutions, I spent time putting my life in order. Believe me there's nothing like a tumor inside a major organ to stop you in your tracks and shake some sense into you (not that I'd recommend it...)
Fast forward 9 months to this New Year 2014 and I have woken up more hopeful and less anxious about what the coming months will hold than I have for several years. It's as if cancer has given me a right of passage, I can say 'Ok, do your worst, I've survived cancer'. I feel I have made a transition from uncertainty and hesitance to confidence and acceptance.
I start 2014 minus a vital organ and less the tumor it housed but with the knowledge that I am a survivor and as such I'm here for a reason.
Time to press Play

The Chemo Question

When I was first diagnosed with kidney cancer I had to write down a list of Q&As for the doctor as I hadn't a clue what to expect. One of my queries was about chemo and radiotherapy, as I'd supported my Mom through breast cancer I was well aware of what both entailed.
I was told early on that if the cancer was confined to the kidney (which it was) I wouldn't need additional treatment and that even should any rogue cells have travelled, kidney cancer doesn't respond well to chemo.
Following surgery and on my return home I was laid up for a short while but eventually started to get up and about and then go out. One of my first 'trips' on my own was to the chip shop up the road - I'm easily pleased. I had insisted I'd be fine to go alone and when I got there the shop staff were asking where I'd been (yes I like a chippy tea now and again...)
When they'd established that I'd not been away working or doing anything fashionably exciting I managed to whisper that I'd been ill.
'What with?'
Again discretely, 'cancer'.
'Oh a My a Gooooood' - this for the benefit of the large queue, 'What kind?'
I tried to lean across and quietly say 'kidney cancer'
'Kidney!!!? Did they take it out?'
'Yes'
By this stage anyone in the queue ordering a steak and kidney pie was looking at their options...
The conversation continued along these lines until I was being served at which point the young girl dishing up mouthed to me
'It looks good'
Oh no...
Again she nodded at me and said, 'it is a wig?'
Now my turn to speak up, 'It's my own hair, I haven't had chemo'
This was the first of similarly amusing encounters I had when having to raise the subject of having had cancer. It was generally presumed that I must have had chemotherapy which I suppose is a presumption I might have had. Now after meeting other cancer survivors who've undergone surgery to remove an organ complete I understand it's not unusual.
When I used to take my Mom for chemo I had multi coloured dreadlocks and so many times when sat waiting in the chemo suite people we spoke to presumed I was the cancer patient and that my mad hair was false. I hadn't expected my normal hair to raise the same speculation.
Time for a new 'do'
: )

Pause to Say Thank You

You know that pivotal moment, the one that stands you still and stops you in your tracks so that you hesitate long enough to look back?
That was kidney cancer for me.
Despite all the pain, discomfort and worry. Putting to one side the drips, drains, catheters and of course the surgery. Not forgetting (how could I) my hospital stays and the seemingly endless wait for information and of course results. I have a lot to be thankful for.
I didn't know I was ill, I had no pain or discomfort to speak of - or at least I didn't recognise it. The day my kidney tumor introduced itself though painful was to say the least, quick! Not knowing what I faced at that time meant I didn't have much time to worry. In fact, the first moment I remember thinking I was in trouble was when my ambulance had to pull over and give me morphine, even then the pain took over the fear.
The nature of my tumor meant that I would have no chemotherapy or radiotherapy and the fact it was removed along with my kidney intact meant that no further drug treatment would be needed. Just the watch and wait.
Even today, eight months on there are people I know, neighbours and some friends who are unaware I've even had cancer. This partly down to my initial reluctance to tell people and also that I've been able to get up and out and carry on as normal without making too much fuss.
As I said, a lot to be thankful for.
The issues I still face are ones I deal with privately and have written about on this blog which has helped me come to terms with a lot of what has happened. By sharing this it has helped to know that others going through similar or the same may have been helped. This is not something I share or discuss openly and is only publicised here and via twitter.
So Thank You.
Of course thanks go to my family who, as far as I am aware have never read this blog, nor would most know of it - they don't need to, they lived through it with me Thank You.
Friends who have send messages of support, called, sent cards, bought flowers and just been there from the shock discovery through to the treatment. Thank You.
Then there are those friends who have stayed. Now that the big cancer song and dance has died down, normality is settling in and you are still here. The messages, calls (and cakes) still come. Without asking you know when I need you. Without saying, you know who you are. Thank You.
For the many messsages, tweets and emails of support and thanks for my blog. To those of you still battiling with and continuing to fight cancer and those like me who are praying they have seen the back of it, Thank You.
To the James Whale Kidney Cancer Fund I owe thanks for listening to me when I had questions that had no answers. For supporting this blog via twitter and enabling others with kidney cancer to both read and get in touch. Because of this communication I have been introduced to some of the most inspirational people and especially those who I can relate to and empathise with. This has meant our kidney cancer journeys have not been made alone which in turn has meant they have been made that bit easier. Your support helpline and the website are both informative and insightful, giving readers the chance to see not only what kidney cancer involves but what it means to individuals. Thank You.
A big Thank You goes to The Sharon Fox Cancer Centre How can I put into words what visiting your centre has done for me. The blog post I wrote at the time was one of the hardest because it made me cry. I hadn't anticipated the overwhelming emotions that would engulf me by simply walking in the door of your centre. That realisation that I had cancer was one I will never forget and one that I hadn't understood fully until I walked in the door. Meeting the incredibly brave people that work with you and rely upon your charity simply took my breath away. Thank You.
The people I owe a huge debt of gratitude for are the medical team, doctors, nurses, health care assistants, paramedics and hospital staff. I have written my kidney cancer journey from personal experience, some good, some bad, some could be better but it could have been a whole lot worse. I am truly thankful for the intervention of those who diagnosed and removed my cancer. A special thanks goes to my GP and local medical centre who's staff have been incredibly supportive and still are. Thank You.
I never gave my cancer a name as some advised, I get the whole think of someone you don't like and name your tumor after them but it didn't work for me. It didn't actually feel real until it was out and now I feel as though I didn't know enough about it, weird but true.
However, I have blamed my tumor on all those things I should never have done, the one drink too many, the one job too much and the times I should just have said No.
Now I can say Thank You for the opportunities still left to take and the choices yet to make but, having been stood still - I will think twice before I say yes.
Thank You