The Ketogenic Diet Begins...

Until now I have never been on a diet. Nor have I entered a gym. Exercise for me was part of daily life, working, walking, cleaning, dog walking etc. I suppose I have been fortunate not to have needed to exercise for weight loss or health gain but only for pleasure and necessity.
Now however, I am having to watch what I eat and drink, not only because I have one remaining kidney to take care of but also to ensure I don't gain weight as a result of lack of exercise. Since having cancer I have not returned to 'business as usual' in as much as I can't walk, work, clean or dog walk at the same rate as before. At my age (45) it is inevitable that I will start gaining weight - in all the wrong places IF I don't do something about it.
Lately I have benefited from others going through the same, in particular Lisanne Vos' Blog RUKidneyingMe which includes health tips and recipies for a healthy life in the 'Mono Kidney Club'. Another source of healthy knowledge has come from Elaine Cantin's book The Cantin Ketogenic Diet - for Cancer, Type1 Diabetes & other ailments. This book has been kindly lent to me by Sharon Fox Cancer Centre I have also gained a wealth of useful dietary information from the James Whale Kidney Cancer Fund site
I must admit, I am still a believer in the philosphy that 'A little bit of what you fancy does you good' BUT I am currently taking advice from these sources and using what I can. From this I will record the dietary changes I can make and hopefully stick to in order to improve my healthy diet.
So, here I go and first on the Prohibited Food List is Alcohol, one of the benefits of which will be that I'll not sing on a karaoke without it again...!
Ok what's next...

Sharon Fox Cancer Centre on Surprise Surprise

If you have been following my blog so far you may be interested to see the Sharon Fox's appearance last weekend on prime time UK TV Show Surprise Surprise
If you would like to support the centre by purchasing a calender you can visit the site here at Sharon Fox Cancer Centre
You can also listen to Sharon's interview on local radio TCRFM

The Sharon Fox Cancer Centre Tamworth

I hesitated at putting the title 'Coming Out' for this post as for me, admitting to and telling people about my illness was a big thing to do. Having kept my cancer news on a 'need to know' basis, for several weeks only closest family and friends were aware. Eventually I used the necessary evil that is Facebook to post a brief 'guess where I've been...kind of message' as this would filter to both friends and acquaintances which in turn meant I wouldn't have to tell them personally. The response shocked me, so many people left lovely messages and sent kind wishes, I was quite overwhelmed.
The next step was to get back out and about, I wasn't back to work and so needed to show my face and start going about normal life again. Having run a creative business I was aware that the local cancer charity centre, run by breast cancer patient Sharon Fox held an Arts & Crafts morning once a week. I figured I could go along and get involved, maybe help out. I'd visited the centre before my illness a couple of times but then it was to drop donations or concerning involvement with the charity as a business. This was different - now I was one of the gang!
Sharon was aware I'd had cancer and had herself left a lovely message in response to my facebook 'announcement' so I contacted her beforehand about joining that weeks group. When I arrived outside the centre I was suddenly overcome with all kinds of emotions, fear, anxiety, sadness and panic set in. Once I step through that door they know, I've had cancer. I'm not dropping off a donation, I'm not running a workshop, I'm there because I've had cancer. It was as if the news had hit me all over again and the denial I'd been in was futile, the people behind this door could see through the bravado because they'd been here too.
As I stood outside another lady arrived and as if via telepathy greeted me and opened the door, ushered me in as if we were old friends. Once inside Sharon was there and I was effortlessly introduced to the ladies present (no mention of the C word) just that I was joining in the session that morning. We stood and chatted and then went through to the room where Maggie, who was there to help proceeded to show me some of the art they were working on. So far so good. It was warm and relaxed and I was talking about things I could relate to.
Then it hit again and I can't explain what or why. It was as though I was looking at the activity and hearing the chatter from a distance. The tears started to fall (incidently they are falling now even thinking about it) and I stood and cried. For the first time, outside of my home or a hospital bed the emotion was overwhelming and I let go of some of the fear I'd been hiding.
Maggie comforted me and said all the right things before another couple of ladies offered me a seat in the office for a chat about how I could help when in fact, they were helping me. By this time I was able to articulate how I felt but no explanation was needed as again, they knew. I don't think I made any firm offers of help that day but by the time I left I was strangely empowered. I'd done two of the things that I hadn't done yet, cried in public and talked openly about my experience and I was ok. 'It' was ok. Cancer had taken my kidney and knocked my health about somewhat but I was still here.
Since that visit I have returned to the centre. Admittedly one of those visits was spent in the car park and I didn't leave the car....bad day. However, on the other occasions I wasn't the 'new girl' and saw first hand both men and women enter the centre and speak of their illness, this is a most humbling experience. To witness the work done at Sharon Fox Cancer Centre is emotional whether you are a patient, carer, volunteer or visitor you can't help but feel part of this wonderful place.
This is my way of saying thank you.
Sharon Fox Cancer Centre

The Verdict

I've returned to where I left off with my kidney cancer journey and having had to revisit hospital with a suspected blood clot after my surgery, I was determined to steer clear of the place for a while. However, I was still anxious to see the consultant surgeon who had performed my nephrectomy and find out if they had discovered anything from the subsequent biopsy of my tumor. This appointment seemed ages arriving, it was actually 6 weeks but the time dragged as in between there was no one to give the answers I needed.
The appointment was at Solihull Hospital and it was at a urology clinic. After a wait of over 3 hours (yes 3) my name was called and I was finally sat opposite the man who had saved my life and removed the cancer and my kidney. We had met previously of course but this was different, this time I was minus a tumor and out of a hospital bed.
The consultant examined my wound and read the notes from the previous admission for suspected blood clot and wound infection. The scarring wasn't pretty but he was satisfied it was now healing well. He asked questions about my general health and well being which were difficult to answer as I wasn't sure if how I felt was good or bad considering my surgery. Personally I still felt pretty rough and was in a lot of pain from my back - conversely the opposite side. The consultant though said this was all relative to what I had been through although he was concerned about my back pain. He didn't think it had anything to do with the surgery and recommended a bone scan as a precaution.
Then it was our chance to ask questions, my husband was with me which was wonderful as during my admissions and diagnosis all news had been broken to me alone - not by choice. We asked the obvious questions, 'has the cancer all gone' and 'will there be any more treatment'? The answers were pretty much what had been said previously, the tumor was encapsulated in the kidney and had been removed whole, therefore it should be all gone. While 'in there' they had poked around to check surrounding organs and no evidence was found of anything else sinister. As kidney cancer is not generally treated with chemotherapy or radiotherapy there would be no further treatment but I would need to return for regular check ups and CT scans. When asked how long this would be for we were told, 'as long as there's a national health service - indefinately'. I was of course now a renal patient as well as a cancer patient so this I suppose made sense and was reassuring, I was on the radar!
The BIG question of  'is there a chance it has spread' was answered in this way. The consultant took a pen and paper and made a dot on the paper, he said, 'right now there could be a tumor this size inside you, we wouldn't pick it up on a scan and you wouldn't know it was there. You have the choice to leave here and worry endlessly about that or you can choose to go out and carry on living your life as best you can. I suggest the latter'.
Well, that may sound abrupt and a bit too graphic but, it's true. He went on to say that so many elements of our daily life can cause that one cell to go wrong, what we eat, drink, breathe etc. I was at least going to be closely monitored and lets face it, had been walking around for God knows how many years carrying the cancer inside unknowing.
Another BIG question was of course, 'how did it get there?'. I mean, obviously I don't want it back and I wanted to find out if my lifestyle could have had any effect or, more to the point how I could possibly avoid a recurrence. At this stage I was still pretty ignorant of kidney cancer and knew only the statistical figures and they told me it was uncommon in women of my age and was not a well known cancer compared to others. The consultant gave another succinct answer... He said, 'walk into any children's ward where you may find young people suffering with cancer and ask yourself the same question, why them, how come, what caused this?' In other words, if we knew the answers we'd all be better qualified to avoid this awful disease, sometimes there just aren't any reasonable answers and if there are, it's often guesswork.
I left that day together with my husband in the knowledge that everything that could have been done, had been done and nothing was being left to chance. We realised why our wait had been so long, the consultant had spent time explaining thoroughly all we wanted to know, no complaints there.
The next step was a bone scan. In the meantime I could worry about that small dot on the paper that could be inside right now OR I could get on with the life I'd been given thanks to medical intervention and thank God I was here.
I chose the latter.

Climb Every Mountain

Apologies for the cringy title...it just had to be!
Most years we go to Wales and when there we always find time to climb up into the mountains where we have our favourite places. Wales has many hidden treasures and amongst them are it's blue lagoons, old slate mine shafts dug high up into the mountains and now filled with water. To get to them involves a steep climb followed by negotiating your way through a small tunnel cut into the mountainside that leads to the inner lagoon. Alternatively your can scramble to the top of the mountain and look down into the pool.
This year I was determined to repeat this visit and spend some time by the side of one of these beautiful, tranquil lagoons, however whether I'd make the climb was another matter.
Well, I did it!

It took a little longer than usual but once there was worth all the effort. While I sat by the lagoon I was able to look back at the struggle I'd had over the past 6 months with some perspective. It has been hard up till now to think about the weeks that followed the discovery of my cancer and I have preferred to forget it. Writing this blog has helped tremendously as not only have I put into words the way I felt and the things that happened but also, I have heard from others who have gone through/going through the same.
Looking back from the top of a mountain I was finally able to see the journey I've made. I can now place myself back at those difficult moments and see that time does heal and the journey gets easier.
More importantly, it doesn't end here.

Six Months Ago Today

When I woke on 13th March 2013 I don't remember feeling unwell. Before that day I'd not complained of being ill, no backache, bleeding or any other symptoms connected with kidney cancer.
I went to the toilet for a wee and discovered I was bleeding which I knew was unusual but still wasn't overly concerned, more puzzled. When I returned to bed I remember clearly saying to my husband, 'I don't think I'm very well'. then the strangest thing was I started crying. I agreed I'd go to the doctor that morning, got myself together and went downstairs to carry on preparing for the day ahead.
Ten minutes later I collapsed. Actually it was more a slide as this enormous pain hit me in the side like none I've ever felt before and I slid down the cupboards in the kitchen. It was like a dead weight in my left side and I could hardly move and so started to drag myself across the kitchen floor. Our two dogs were obviously confused by this and followed me along patting and licking me!
When I reached the bottom of the stairs I was able to call my husband who rushed down and so began this journey, from a pain in the side, via 3 hospitals to a diagnosis of kidney cancer in 24 hours.
The rest is written in this blog. My first experience of hospital (other than giving birth there), cathaters, canulars and irrigation systems - oh the glamour of it all. From a career amongst fashionistas and superficial conversation to sharing my days with elderly poorly ladies discussing bowel movements.
Here and now I'm doing ok and feel the need to get back on track with my life more than ever. I am nagged by a pain in my back which is conversely on the opposite side to where my kidney was removed but this is being investigated. Other than that I'm relatively fine, a bit limpy, a bit bored having closed my business but very relieved that the cancer was found and removed. I was lucky.
As for questions I have loads. I knew nothing of this disease before it hit me. Cancer has affected my life in the form of my Mother's breast cancer but I didn't worry it'd get me. As I've written in my blog I have asked lots of questions, how long was it there, what caused it, what could prevent it, should I change diet....on and on but the answers didn't come from the doctors that cared for me in hospital, there job was to make me better. I have received excellent care from my GP but more answers came from the James Whale Fund for kidney cancer.
I avoided the internet for some time after refusing to Google my condition in case I heard stuff I didn't like. The doctor recommended patient.co.uk and I tried MacMillan both of which were helpful but the real insight came from the JWF and I am very thankful.
My business was very reliant on social networking and when this cancer struck me suddenly I quickly closed my business and came offline. I am very private generally about my personal life, the social network was mainly my business persona. When I started this blog, written from my hospital diary I took it offline 3 times before having the courage to leave it live. This was mainly due to the comments and messages of support and thanks I received for telling my story. This has made a huge difference to the way I am dealing with what has happened in a positive way.
Today is a milestone, one I need to stop and think carefully about to decide how I  move forward because that is the only way now. I'll sign off for a week while I make those decisions and when I come back it can only be stronger. I have had kidney cancer and beaten it thanks to the wonderful medical team, my family, my friends and in it's own way, the social network that has given me a voice to say how I feel.
Grateful.

Remember Me?

Thought I'd just remind people (and myself) of who I was 6 months ago.
Here's the 'About Me' from my website - seems a long time ago...