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Wednesday, 29 January 2014


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.