Escape

Saturday 18th April and we've arrived at our remote holiday bungalow on a beach in north Wales,it's breathtakingly beautiful. In front of us only a 100m away the sea, calm today as the weather is gorgeous. Behind us and at either side is the Snowdonia mountain range, it really is an area of outstanding natural beauty.
I haven't slept well for a few nights, unusual for me as I'm normally asleep within minutes of climbing into bed. No matter how much I try and push thoughts of my forthcoming breast cancer screening away, they seem to be able to creep back - mostly in the dead of night. Therefore I'm hoping being here, away from everything I will get a decent nights sleep, I am so tired.
I've not had any alcohol for a while, it wasn't a conscious decision, I suppose I simply got out of the habit. Prior to kidney cancer I was fond of a glass or 2 of red wine on week nights  (ok...occasionally 3) and could finish of several bottles of corona on a night out. Not drinking post surgery meant I gradually became a real lightweight in the drinking stakes until eventually I just stopped wanting a drink, mainly due to horrendous hangovers when I tried it. Now it simply doesn't bother me and I'm more partial to fruit juice than merlot.
However, I'm on holiday and having not slept for the past few nights I figured it wouldn't hurt to have a couple of glasses of wine . Therefore I've bought along some wishy washy rose,  I can handle that...

Limbo

I am writing this as it unfolds but won't publish until I have an answer.
When I began my kidney cancer journey I recorded events as they occurred but made them public retrospectively. At that time, my cancer arrived unannounced and I needed time for the shock to sink in and so I wrote everything  down to help me take it all in. The purpose had not been to share this public diary but in doing so I hope it has helped others going through similar.
I didn't anticipate a second cancer scare but unfortunately this is what I'm facing right now.
The date is Friday 17th April and I've had to see a GP because I've found a lump in my right  breast. It was a couple of days ago and although I didn't dismiss it, I hesitated to say anything as I don't want to waste anyone's time.
The doctor examined me and  confirmed that she could feel a small lump there, I'd hoped she'd say it was something and nothing. However, given my medical history and that my Mom has had breast cancer it was inevitable I suppose that I would have to be referred.
The doctor requested an appointment  there and then for me to attend  Burton hospital asap. The problem is that I am due to go on holiday tomorrow so it'll have to wait a week, hence the limbo.
At this stage I've told no one except my husband as there's  really no point in worrying anyone else at this stage. I mean, it's all going to be fine, isn't it?

Two Years with 1 Kidney Just Keeps Getting Better

This time two years ago I was in an operating theatre having my left kidney removed in a surgery that lasted five and a half hours.
Today I was up and out at 5.30am for a 2 mile run and I'll shortly be off to yoga to rid some of the aches and pains I have from my first netball practice in 30 years this week. I haven't felt this fit and healthy since, well probably since I last played netball which was at school.
When I read back my blog post from 12 months ago I see that I wasn't in such a good place. Surgery did take it's toll on me and although I tried to deny it, so did cancer. Complications with back pain meant my journey back to health hasn't been as straightforward as I would want.
However, I was determined to put kidney cancer behind me and saw the best way to forge ahead was to become as fit as I possibly could.
My memories of the day I joined the 'Mono Kidney Club' are still clear. It was snowing and in the car on the way Thorn in my Side was playing (very apt...). I can recall the gown I wore, meeting the surgeon in a tiny room where I was fascinated with his tiny hands (a good thing for a surgeon I think) and he dropped all his paperwork on the floor (not a good thing...). Being led from room to room, being asked which kidney was being removed (a little freaky as I hoped they'd know) and then having to climb onto the operating table myself which seemed really bizarre.
One of the things that struck me most was the anaesthetist admiring my sleeve tattoo and preferring to hook my other arm up rather than pierce the tattooed one.
Since my surgery I have had more work done on my sleeve, in particular I've had a kidney tattooed into it. I chose to have a kidney made up of leaf shapes and coloured green as this is the colour that represents kidney cancer awareness.

Right now I'm in a far better place than I have been in over two years. Even before I became ill, albeit suddenly I wasn't aware of how precious my health was and looking back I can see I was complacent with life in general.
Today I feel stronger, more determined and happier than I have in a long time. There are many debates about the question of whether cancer can be affected by your state of mind and I'm not about to enter into any of them. I can only say that my own strength of mind has helped pull me through this cancer ordeal. As for healthy mind, healthy body, it 's working for me.

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.