2 Years in the Mono Kidney Club

Today will mark 2 years since I discovered I had kidney cancer after waking up and hemorrhaging from the tumor inside my left kidney. Shortly after I had surgery to remove the cancer and the kidney and there began a new lease of life.
I have reread my 12 month reflection on  this life changing event and realise how much difference a year can make. Back then it was still raw in my mind and I was still suffering painful reminders with ongoing pain.
In an effort to put the experience behind me as far as I possibly could I had moved hospital trusts and been discharged from consultant care preferring to see only my GP. I didn't want continuing check up reminders nor did I want to return to a CT machine regularly. Instead I went for the 'if it ain't broken why fix it' option whereby I would seek medical advice if I was unwell rather than 'because' I'd been unwell.
When I read other accounts of cancer discoveries I'm struck by how often there is a prolonged waiting, suffering and not knowing period. I was lucky I din't know and didn't have to wait or suffer till I woke up on Wednesday 13th march 2013 and Wham!
In sharing my journey on this blog I have been fortunate to cross paths with others going through similar and follow their progress also. I am struck by how incredible some of those accounts are. In particular is Lisanne Vos who's own experience is awe inspiring and can be read here Are You Kidneying Me  I have kept in touch with other members of the 'Mono Kidney Club' who's stoicism and bravery is incredible and has without a doubt inspired me to push on when things have become tough.
One of the best pieces of advice I received when my cancer was discovered was from a GP who said, 'Don't Google It!' This was after leaving hospital following surgery and having 101 unanswered questions about kidney cancer. Unfortunately as is usually the case when someone says 'Don't do it...' I have to push that button. In my case though I skipped the patient information links and settled on The James Whale Fund for Kidney Cancer  This charity has been a Godsend and by it's phone help line and website advice has helped keep me informed and positive.
I was going to write a Hopes & Fears kind of blog today but the truth is the fears would just be stating the bleeding obvious.
As for hopes, I have many but I've learnt that sometimes sharing them isn't always a good idea, especially if they don't come to fruition. I have many though, hopes, dreams and goals. One of which I reached yesterday having starting running a few months ago I took 30 seconds off my personal best time which was a big achievement. I don't compare with other runners as I prefer to run my own race in my own time which I have done pretty much with this kidney cancer battle. Apart from the incredible love and support my family have given and some wonderful friends, this was a personal fight and one that only I can conquer.
My Mono Kidney Club experience has not been easy but 2 years on I can see that without it my life may not be as focused and positive as it is now. Losing a kidney to cancer isn't something I'd want to go through again but I have to take the positives and there are many.
2 years, 1 kidney, they're only numbers. The here and now is, I'm here and now is the time to get on with life and live it to the full.

Telling it Straight

I was a bit lost the last time I wrote this as being 18 months post surgery and still experiencing pain was beginning to grate. I've mentioned before that I am fortunate enough to have an excellent GP who referred me to an orthopedic consultant and the visit to her was enlightening, just before this though I had to have an MRI scan - which I found really traumatic

Having had 3 or 4 CT scans I thought the MRI would be straight forward but hadn't banked on the high pitched noise and my nerves which combined meant I ended up in tears asking them to stop it. So embarrassing...they had to restart once I'd composed myself. I'm still not sure why I got so upset as having gone through so much already I wouldn't have thought another scan would phase me but it hit me all of a sudden, freaky.

The results came through while I was with the orthopedic consultant and thankfully there was nothing irregular showing other than expected 'wear and tear'. I'd already learnt that my time on the operating table had meant being twisted and turned and that my kidney had been more difficult to remove due to the tumor hemorrhaging and causing it to stick...gross. So I can live with wear and tear, literally.

Fast forward to my first physio appointment and there was the biggest revelation, I was crooked! When asked to measure either side from the bottom of my ribcage to the top of my hipbone, the left hand side was significantly shorter than the right. I had in part been protecting my wound and then leaning to the left which was placing strain on my right hand side.

I can recall vividly the day after my surgery being asked by the ward physio to climb out of bed and walk to the window - 3 beds length. This had been the most difficult and excruciatingly painful experience and I'd had to sit at the end of each bed. Once accomplished, this was the extent of my post surgery physiotherapy and I was signed off. Although I spent a further 5 days in hospital I had no further physiotherapy and neither was it discussed. 

Once home I'd struggled to walk for some considerable time and so can see how I'd begun to lean over and protect the area most painful. I'm not going over again the issues I had with my consultant surgeon but lets just say his dismissal of any subsequent pain having anything to do with his surgery was absolute and final. This led to my dismissal of him and the reason I switched hospital trusts.

I have continued with physiotherapy exercises over the past 3 months and at my last appointment this week I was signed off. I think having shown that I was committed to doing the exercises regularly and the improvements these have made both led to my sign off as I have tremendous resolve and a great deal of will power to get back to 'normal'. The physiotherapist has given me a new lease of life in as much as I'm no longer afraid to try exercises and have a better understanding of where the pain is coming from. For this I am very grateful.

As far as pain goes I'm not entirely free, but there are other reasons for this. Going back to when the pain was unbearable, even to sit, I was prescribed Gabapentin which is, amongst other things to treat neuropathic pain such as I was experiencing. My dose gradually increased as the pain did and I was taking 900mg per day on top of which I would also have Tramadol when it became unbearable. From the day I started physiotherapy and learnt about my posture problems I decided that if I could correct what was wrong then I could wean myself off the painkillers. And I have.

Over the past few weeks I have gradually decreased the dosage until last week when I stopped taking them altogether. 

This is something I'm sharing on here before even telling the doctor, I've made an appointment but I needed to see if there were consequences before I confessed. I can't say the pain has gone as I can feel it even now however, I am managing it better. I truly believe that much of this is down to maintaining a positive outlook and a little is me being able to identify where the pain is and controlling it with movement. The one thing I couldn't face was the thought of being drug dependant indefinitely. Before I became ill I hardly ever took anything apart from the occasional anadin extra (usually for a hangover). Now I don't drink and I want to be mindful of what other toxins my remaining kidney may have to process and Gabapentin had to go.

I have every intention of continuing with a fitness regime as my confidence has grown with the physiotherapy and today I started yoga classes. I did attend one a few months back but just wasn't ready as I didn't know what was causing the pain or if I might be exacerbating it. I also began running last October and now average 9min per mile regularly running 3 times a week.

The next hurdle will be my 2 year scan in March but once I've skipped over that I'll be back on the straight and narrow, no turning back.

The Story So Far

The longer I leave between these blog posts, the harder it is to write and the more I forget where I left off. It's important therefore that I remind myself of how far I've come.
It's now almost 20 months since my 'Rude Awakening' when I collapsed suddenly with kidney cancer without warning and with no prior symptoms. Before that time I was in the process of building my business Missfit Creations which had only 2 weeks previously been featured in a local business editorial for the Tamworth Herald 
When I look back over the weeks immediately following my cancer shock I recall the need for complete privacy. I went from a daily social network presence to a complete online blackout, I simply disappeared along with Missfit Creations.
I wasn't ashamed of my cancer I just didn't want to explain it and couldn't bear the sympathy. In order to cope with what was happening I had to shut out everything and everybody but those closest to me plus a few unavoidable 'need to know' people.
My return from self imposed oblivion to the social network was actually more to do with my business than my personal life. I was afraid that people would think my company had gone bust and that I had failed rather than actually be concerned about my welfare. The response to my subsequent post explaining the kidney cancer shocker was incredible with so many lovely comments and messages I was completely overwhelmed.
Once on the road to recovery I began to get out and about again and started to write this blog as I'd kept notes from day 1. One of the places I visited was the Sharon Fox Cancer Centre which became another milestone in my journey as the reality of what had happened suddenly hit me.
I made several attempts to get back to work, having a home based business at least meant I didn't have far to go - or so you'd think. In fact my business became for me a catalyst of my kidney cancer, I felt it carried some of the blame for what had happened. I'd shoved everything and anything to do with Missfit Creations into my workshop when I became ill and now as I took things back out the memories came too.
Thankfully along this journey I found the James Whale Fund for Kidney Cancer as the team there gave invaluable support and advice. Not only that, it was an introduction to others who were going through the same and whose own experiences reassured me that my fears were normal. I was able to face up to the reality of kidney cancer more easily in the knowledge that I wasn't alone.
My recovery has also been hindered by ongoing back pain since surgery which has, thanks to my wonderful GP been investigated thoroughly. I am currently waiting to have physiotherapy and acupuncture to hopefully alleviate this, the cause of which is still uncertain other than it's NOT cancer which is all that matters.
I suppose one of the most important things I've learnt since having kidney cancer is patience. I thought that if I blocked everything and everybody out, I could decide when I'd be back to normal Wrong, that was quite a waiting game. Things won't ever be the same as, apart from the fact I have only one kidney, I've been given a second chance and that's a precious gift so I won't try to hurry my life along again.
Since having my cancer removed I've cut a few things out myself including alcohol, salt and those 'elements' of my business that were dragging me down. I've learnt that I don't need to surround myself with people whether in person or online, it's ok to take time out.
While waiting for diagnosis and treatment for my back pain I have begun exercising again, I regularly cycle and have recently begun running. The latter I've kept quiet for a while as I needed to be sure it was right for me, now I can run a mile in under 10 minutes regularly I reckon I'll keep it up.
I'd like to summarise by saying that it's business as usual but it isn't. My Rude Awakening happened for a reason but I'll never know what that was. Thanks to my cancer oblivion I have a healthier lifestyle and new business opportunities so I can close the kidney cancer chapter and start anew.

It's Like This

I haven't written in this blog for sometime, partly as there has been little to share and also because I haven't wanted to share it.
A little before my 12 month anniversary I saw my new consultant and agreed to being signed off to my GP's care - my decision. The reasons I had were down to the initial bad experience I'd had after surgery and my want to be free of hospital care. This may have been premature.
When people ask about my post cancer care they are always amazed that I don't have a consultant or planned hospital visits. For my part this is a proud boast as I haven't wanted the 'experience' to drag on and needed to feel completely free of cancer and all it's association.
However, since surgery I have suffered back pain which I pointed out only 6 weeks post surgery to the consultant surgeon who completely dismissed it. He did arrange a bone scan which was thankfully clear but his disregard for my condition was such that he said 'it has nothing to do with the surgery'.
Before I discovered I had cancer I was not unwell and had no symptoms and No back pain.
My GP having taken on my care after the 12 month sign off has been excellent and has done everything possible to help me cope with the pain. This has meant a steady increased dose of Gabapentin and more recently the addition of Tramadol.
As the pain has increased now and spread to my side and under my ribs, my GP has arranged both Xrays and scans. I am awaiting an appointment currently for an MRI and will also shortly be attending a clinic at the Royal Orthopedic Hospital.
None of the above are things I had anticipated. Although my initial care plan, post surgery had been to undergo 6 monthly CT scans for 2 years and thereafter 12 monthly scans for 5 years. The consultant had also said I would be attending his urology clinic for 'as long as there was an NHS'. I had celebrated in the fact I'd opted out of this system and would just go to my GP 'as and when' needed. After all, the surgeon took the cancer out with my kidney - it's gone.
Having to undergo more scans means the possible discovery of more problems - not something I want to think about. Not something I find easy to write, or talk about either.
So there it is. Not the scenario I had hoped for although I suppose, logically being only 18 months post cancer it's to be expected. Tests, clinics, doubts and even tablets are normal.
I don't want to be normal.

Race For Life - Sutton Park 7th June 2014

The Race For Life events are run all over the country with over 300 events and my daughter Rosie took part for the 3rd time this year. The events are run by Cancer Research UK and all money raised goes to the charity to help the fight against cancer.
In the words of Cancer Research UK, 'Every pound you raise in sponsorship helps more people survive and will bring forward the day when all cancers are cured.'

Thank you so much to everyone that sponsored Rosie, she raised £135 and yes, I am one very proud Mommy.
You can support Cancer Research UK in many ways, just follow the link and help in the fight against cancer http://www.cancerresearchuk.org/support-us

My Cancer Shadow

I’ve been putting a distance between me and my cancer lately. By this I mean that I have attempted to restore the person I was before cancer and dismiss the tag that accompanies me wherever I go, like a shadow. This has been harder to do than I anticipated as people naturally ask ‘how are you’. I will say ‘fine thank you’ after which there is often a pause before the next question comes which is usually something like ‘so you’re...all ok now?’ or ‘are you feeling better you know after...?’

I am not good at elaborating about my illness in person which is probably why I wrote this blog. Don’t get me wrong, it isn’t that I don’t agree with talking about cancer or promoting well being associated with the disease, I just can’t do it well myself. I’ve almost started to dismiss it and will often answer those awkward ‘follow up questions’ with, ‘they took it out so it’s hopefully all gone, job done’, or something like that.

Recently I won a competition to see Prince – my idol of many years, by entering a competition on twitter by a local paper. I was shocked to get a call saying I’d won and could I answer a few questions for an interview which I was glad to. We spoke about my first single, concerts I’d been to, etc and then the question came, ‘You’ve had some health problems recently, I’ve seen your blog...?’ The conversation went on and I did say I think awareness should be raised but hadn’t anticipated the header my ‘win’ would get

En route to Prince with my friend I noticed a link on twitter so clicked to read...’Cancer Survivor Wins Tickets to See Pop Idol Prince’, I couldn’t catch my breath. My friend who was driving was also shocked...Cancer Survivor!!! Now some people may shrug and say, ‘well you are’, it was written on my twitter header BUT this was supposed to be about me being a Prince fan. I was really cross. I had been a Prince fan since 1982, a lot longer than I’d had cancer, I really can’t explain how this made me feel other than I was literally cringing with a kind of shame.

Now to the newspaper in question and the journalist who wrote the article I appoint no blame, I fully understand why this header was given. I did speak about my cancer and didn’t say don’t tell anyone – I have, in a public blog. It’s just that when I saw it there in black and white whilst I was dressed up and ready to party I suddenly felt like a cancer victim again, the shadow was back.

What I am going to say next may be controversial but it’s how I feel. Cancer Sells. It sells newspapers, clothes, tickets to events, art, music, etc, etc. You stick the cancer or charity tag on what you need to sell and bingo, publicity and depending on what you’re giving, you sell your goods that may not have got the marketing boost that cancer can attract. It grabs attention because we’ve all been affected by it in some way. At the end of the day I suppose if charities receive much needed funds it doesn’t matter how the money comes in or how the publicity is raised.

It’s just that maybe, just maybe it should be more about the charity than the individual, business or product. In the same way that heart disease is displayed on cigarette packets, cancer is not nice. It’s drips and drains, canulars and catheters and some of us can’t shake this association and therefore put the disease and the charity before the associated ‘product’ whatever that be. Dedicated charities both local and national need our help and the best way to do this is by giving, whether time, money, care, publicity or goods but most importantly not for profit, or maybe I’m too idealistic?

I suppose I don’t like being reminded of cancer when I’m paying for cards in a shop or by invitations to celebrity events that I surely must support as I’ve had cancer. Not really, I’d sooner support the charities that need the help most, in my own way and my own time thank you.

This is my opinion and I know it’s not shared by many others. It’s just that I am more than a cancer survivor and I have been through other tough times apart from kidney cancer. However I have learnt a difficult lesson, this disease is going to stay with me for good. No matter how hard I try to ignore it, dismiss it, shake off the shadow it’s there sticking like glue. They may have removed the tumor but the cancer remains, it’s stamped me and marked me out. That is how I feel right now. This may change.

I will continue to write my blog and update my progress. I see my dismissal of cancer as positivity in my own way, it’s gone and it won’t come back, as I keep telling myself, job done. 

Kidney Cancer 12 month on - Painful Memories

When I woke up on Wednesday 13th March 2013 I wasn't aware my life was about to change imeasureably. I recall vividly sitting up in bed and saying to my husband, 'I don't think I'm very well' and then shortly afterwards collapsing in the most terrific pain I'd ever felt. I remember trying to drag myself across the kitchen floor, calling to my husband who came running down to find me there.
Looking back there are moments that even make me smile, the two dogs tapping me with their paws as if I was playing some kind of game rolling about on the floor. Then of course the dilemma that struck me when I realised I had to go to hospital and didn't want to leave the house in my pyjamas. My poor husband having to try and prise me into a pair of Gwen Stefani designer trousers that I wanted to wear (I have now invested in joggers!)
What strikes me most about that day was that despite the signs, regardless of how serious things were playing out, I refused to believe there was anything really badly wrong. I insisted that I go alone in the ambulance to Good Hope and even gave my husband my bag, phone, purse etc saying he could pick me up later there. When the pain increased and they pulled over to shoot me up with morphine I don't recall feeling scared only a bit embarrassed because I was crying. After the ct scan when I was taken to the assessment wing I can still hear the nurses whispering 'no-ones told her yet' and I don't think the reality had even begun to sink in. This was serious. I only began to worry when they told me I was being rushed into Heartlands because I'd told my husband to meet me at Good Hope. It was more inconvenient than scary.
My cancer journey is played out in this blog, this recollection in it's entirety is here - although some parts have been tamed down and other bits left out in case I ever had to go back to Heartlands...
I have been secretly dreading tomorrow, privately trying to ignore the emotions that day 12 months ago has stirred up but it's almost here and those feelings are raw.
Outwardly, when asked 'How are you', I will say I'm doing well and that the cancers out so all good and I'm getting on with life. I do believe this and I know it's gone - the scars are there to prove it. I don't dwell, I'm not prone to worrying and imagining the cancer has spread. Even if it had or if it hasn't finished with me I'm not tapping my fingers, sitting waiting for it to happen. What will be will be.
However, my cancer has left it's mark and not just the scars across my stomach. I have back pain which is conversely on the side where my good kidney remains. This pain has been pretty much constant since surgery and shows no sign of abating. When discussed at my post surgery appointment the consultant said it had nothing to do with his surgery - even though it wasn't there before.
Now I can even deal with this, I don't discuss the pain openly and try to dismiss it where I can but there are times when I feel it's there to taunt me. It's like this constant reminder, a prodding finger saying remember when you had cancer.
Looking back 12 months ago I was (I thought) fit and healthy, I didn't know my doctors name and rarely took medication for anything. Now I feel like a contradiction where on the one hand I'm proclaiming how lucky I am and fortunate that my cancer arrived with a bang and was taken out swiftly. On the other hand I am left with a painful reminder that I'm scared won't leave me and that I'm afraid to talk about.
When I look around me now I see people differently. You really don't know what the person in the queue next to you is going through, when you look around there are people everywhere going through untold difficulties. We don't wear teeshirts with slogans warning others, 'recently bereaved', 'receiving chemo', 'just made redundant'. There were times when I was recovering from surgery when I wanted to shout out 'They've just taken my kidney out!' but this would have been met with some rather strange looks and I dare say been a wee bit scary haha.
Tomorrow I just want to let go, put behind me what happened a year ago and mark the day with some fun and laughter and make new memories. Maybe though it's time to also face some home truths, things may never be quite the same again and that painful memory, cancer can't simply be erased. Being here to tell the tale, however painful is living proof that there is life after cancer.
My slogan teeshirt company will shortly feature on Dragon's Den ;-)