Right Time...Wrong Place...

Ok, scrap that last post. today isn't the day. It would have been had I arrived at the right hospital...
The day has gone a little like this;
The letter I received with my appointment information on was from Burton hospitals trust as was the last one where I had to go to the local hospital, the Robert Peel to meet the consultant. The difference with the latest letter was that it had the date and time but not the venue although, the letter head was from Burton. Had I scrolled down to all the info which included car parking I would have noticed the car park was in Burton, not Tamworth! Of course I didn't read this because I intended to walk. Totally my fault, I should have checked.
So, I put on my trainers for the walk to the hospital - nearly 3 miles, and set off. Along the route I decided to take a short cut through Lady Meadow which is, as it sounds, a great big field. The footpath through it looked dry enough until I got to the middle....and sunk! By the time I reached the other side I was splattered in mud and my black trainers were now brown.
I got to the hospital and had to hurriedly nip to the toilet and try cleaning myself up with paper towels - not that they helped much. By the time I got to reception I must've looked like I'd been in a cross country race! When I handed my appointment letter over to the receptionist she went away and on coming back said, unfortunately all your details are in Burton, which is where you should be.
As you can imagine I was both annoyed and embarrassed as I had an audience, who to be honest looked more interested in my 'mud wrestler' outfit. The receptionist was lovely and offered to call them for me but I declined and went out myself to make the call.
The secretary I spoke to was also very understanding and said they would arrange for my appointment to be rescheduled, hopefully next week. Then it was time to walk home.
I have to admit that I also felt quite upset by this time as I'd hyped myself up to getting some answers this morning and maybe an idea of how my back pain can be managed. I think had I not already looked like a complete state I may have cried. However, I put my earphones in and set back off, en route I stopped off at Sainsbury's to get a bit of shopping.
Now I don't know whether it was that I was listening to MIA at the time or because I was upset about the mornings disappointment that I lost my cool... Against my better judgement I decided to use the self check out which as usual had plans to make me look more ridiculous than I already did. After repeatedly telling me it wanted to weigh things that didn't need weighing and then shouting about unexpected items in the baggage area I lost it and told it to F**K Off!
Time to leave. Sigh.
Oh well, I'm getting better at waiting...

Today's the Day

Finally, after weeks of waiting I received the confirmation in writing from my consultant last week which read;
'We have now managed to get hold of your scan from Heartlands. This does not show any evidence of spread or abnormalities'.
How easy was that Heartlands?
At last I have the reassurance and peace of mind I've waited for since last November, it's just a shame that it's taken so long and couldn't have come from the team that should have been looking after me.
The letter also invited me to discuss how to proceed with my care at an appointment this morning where I will meet for a second time with my new consultant at Burton. This time though, she will be in possession of the facts - as will I which means she can take up from where Heartlands left off.
I am still angry and quite upset when I look back on what could have been a far more straightforward and painless experience. It certainly does appear to have been a lack of communication that led to most of the poor care I received from the Heartlands team. However, I still believe that the disease itself, kidney cancer has been neglected as far as care packages go. From the moment I was admitted the uncertainty and neglect were often down to lack of information rather than lack of actual care. Even my diagnosis was a complete farce.
I have a list of questions once again, my last list was made prior to confirmation of my diagnosis while in hospital and queried what would be happening. This list has been put together 10 months post surgery and includes questions about why certain things didn't happen or indeed weren't investigated.
I am 100% sure that the cancer has been removed and there is no spread which is a huge relief and has given me incredible peace of mind. Now I need to establish why I ended up with ongoing back pain and how this can be alleviated. I also intend to ask about diet and exercise which was completely dismissed by my previous consultant. I am no longer leaving my health and well being up to chance and if I can't ask an expert what chance do I have?
So, I will check back in when I will hopefully have the answers to at least some of my questions. I don't expect the consultant to be in possession of all the answers and I do understand that most cancers are unpredictable, if they knew the reasons why then there would be a better chance of a cure.
My first meeting with my new consultant was extremely positive and I am very pleased to have changed to her care so I am anticipating a productive and informative meeting.

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