Patience Patient

Still waiting for CT scan results.
Still waiting for consultants appointment.
Still waiting for explanations.
Still waiting for the phone to ring, the post to arrive....
*Sigh*
Still crossing fingers, saying prayers and counting on the tried and tested saying, 'No news is good news'

6 Month Follow Up CT Scan for Kidney Cancer

So here's how the first post op CT Scan went;
My appointment was at 4.30pm at Good Hope hospital, Sutton Coldfield. We arrived in plenty of time which was good as the barrier to the main car park wasn't working and the queues were getting bigger. Some nifty driving by my daughter through the queuing cars and via hospital buildings and we managed to park in the old car park away from the main hospital. (When is that multi storey car park coming....?)
A brisk walk from the car and then through both new and old parts of Good Hope brought us to the XRay Department where I checked in and was directed along another corridor to the CT Scan waiting room. There was no one there to check in with so we took seats with others waiting, some already in gowns and with jugs of water - the form sent with appointment details advised we are required to drink a litre of water beforehand.
Another couple of people came after me, still no one at the desk and in the meantime there was a queue of emergency patients building up on stretchers and in wheelchairs. Eventually a nurse came to the waiting room and booked one of the later patients in - my cue to jump up also. When I explained I'd not checked in, he then explained, 'that's because I wasn't here'. I always find stating the bleeding obvious amusing.
At this point I was given a carrier bag and 2 hospital gowns, one to put on opening at the back with the top one opening at the front. I was allowed to keep bottom underwear and shoes on. (I had not taken up the option to bring my own dressing gown).
If it wasn't apparent already, there was an overflow of emergency cases coming in and a lack of nursing and support staff. This cannot be helped and no one, myself included was complaining. This flurry of activity broke the ice and the lady next to me (also amused by  the mild sarcasm of the nurse) said she had been waiting over an hour.
The lady in question was dressed in a lovely fluffy dressing gown with leopard print slippers and looked quite glamorous considering the venue. She went on to tell us that she was also a kidney cancer survivor and was here for her 3rd year check up post surgery. She went on to say that her husband had also had the condition and unfortunately died from kidney cancer and so she was herself very nervous.  What an awful shame, what are the chances?! I found out that this lady had her surgery at Good Hope, an option I wasn't given and would have preferred. She'd had open surgery though and now suffered from a large hernia which also needed surgery to repair.
Listening to other people's experiences of kidney cancer I feel fortunate that my own tumor was discovered and removed so swiftly. As often heard before, the lady I spoke to had visited her GP a few times about fatigue and blood in her wee but wasn't diagnosed straight away. It was because of her husbands unfortunate and untimely death from kidney cancer that she pursued the doctors and was eventually refered to a specialist by which time she had a tumor the size of a tennis ball in her kidney.
One by one we were taken to an adjoining room to be canulised and the queue started to move down as following this patients were called in to be scanned. I had asked in the meantime whether I should also be given a jug of water as the appointment forms had shown but the nurse said this wasn't neccessary?
In case you are not familiar with what a CT Scan is and why it's performed there is an excellent explanation on patient.co.uk
When I was called in to have my scan I asked if I could suck a cough lozenger as I have a really irritating cough and you just know that when you're required not to, you always cough! This was allowed on the condition I made sure I didn't choke...
As it was my 3rd CT Scan I was aware of the procedure, holding breath then breathing, moving in and out of the donut and having the dye pumped through accompanied by the sensation that you've weed yourself, lovely. None of this bothered me as I've been there before. (That is in a CT Scan not weeing myself...)
The only thing on my mind now are the results. I asked if I would be able to get my results from my GP as I still haven't got an appointment date with my consultant. The radiologist checked on her computer and said this wouldn't be possible as it was the consultant who had requested the scan so I will have to be a patient patient.
So this is what they call watch and wait...

The Morning Before the Night After

This weekend I have broken the rules. The unwritten rules that I self imposed post surgery and after the realisation that life as I knew it may have to change. These included to stop piling my food with salt and give up red wine (the alcoholic beverage I most abused).
Over the weekend I have eaten a bag of salt and vinegar crisps and had about 3 glasses of red wine.
Now putting this into perspective with my prior vino consumption, not to mention the amount of salt I put in just about everything, it's not the worst thing I could do. However, the morning after I felt bad. Not hungover I hasten to say as although I have resisted wine for over 6 months I dont think my alcohol tolerance has changed that much. That said, it's been a while since I could sink 6 pints of stella and still irish dance!
If I'm honest I know why I gave in to the demon drink (and crisps!) Tomorrow is my 6 month ct scan check and deny as I might, I am a little worried and starting to dread the thought of going back through the tunnel.
This morning when I woke I felt quite guilty for indulging in those things that were on the banned list but given what I used to drink I daresay 'a little bit of what you fancy' really can do you good. I suppose moderation is the key. This minor lapse was more about Dutch courage and the need to relax and forget for a night why I have such Do's and don'ts nowadays.
Tomorrow night my first trip back through the tunnel since being in hospital will be over and hopefully uneventful. Here's hoping I can raise a glass later in thanks.

* Talking of thanks, the Dutch don't only have a remedy for courage - there's a certain lady in that neck of the woods who said the right things at the right time this weekend so thank you Lisanne X

Cancer Mind Games

My recent bout of illness somehow stood me still again. The time spent in bed recovering gave way to time thinking about where I'd been on this cancer journey. Moreover it led me to thoughts of where I'm going now.
Having run my own business for so long I am familiar with spending time alone with my thoughts, however they were most often concerning work and how to fit it all in. Now, I have time on my hands which would have been used to plan and put in practice new ideas and designs before my illness. Post cancer those plans seem somehow ridiculous and the ideas are not forthcoming. I just can't seem to figure out why.
Is this a feeling of hopelessness, a fear of planning too far ahead in case I can't complete what I've started or is it more to do with the business I was in,  fashion. I'm looking at the industry with almost disdain, is this business really worthy of so much effort I mean,  isn't it all just superficial? What lies beneath the fabrics, latest trends, in colours and must have shapes this season.
I'd often made comments about the industry I was in and was quite disparaging about the language used. All the 'rocking this look' and 'working that trend', the whole 'like my page', 'follow me' almost beggar friend mentality that comes with modern day fashionistas. It didn't stop me being part of it though and unfortunately my principals didn't win through - I was as guilty as the next for clocking my followers, likes and comments.
Now I really don't care.  Like me or don't, 'heart' my designs or not, it doesn't matter unless you mean it.
Over time while running my business I have entered into many collaborations and put together business plans, worked on projects and taken part in numerous events. Some of these were ongoing when I became unwell and as a result they stopped abruptly. I didn't hesitate when closing my business, the calls were made and within a day my online presence and trading ceased, just like that. It became irrelevant.
Now, faced with picking up the pieces - for which I have no excuse not to - I can't. Having been on the outside looking in I have a much clearer picture and I don't see my place in it. I'd be a hypocrite to criticise those still within that circle as I walked the same walk and talked the same talk but I'm almost cringing as I look back. You might as well say 'It's all about Me' because the fight for online superiority and sales is more like a popularity contest.
Conversely I feel that this time really is all about me and finding out what route to take next but this time I won't be pleading with my followers and 'friends' to come with me.
Is that the voice of experience or is it the experience of cancer that is speaking to me. Stripped of my fashionista image, lying in a hospital bed attached to numerous machines I thought little about the cancer inside me. Now, seven months on with recovery going well I think about it more. Let's face it, I'd been carrying that tumor around with me a fair few years according to medical science. Me and my cancer had done a few Clothes Shows's, arranged a fair few fashion events and strutted about town in our glad rags for a while. Perhaps that's it, I can't separate the cancer from the business, I have to allocate blame. I was told to give it a name when it was discovered but I couldn't and now it's become all the things I worked for that were never to be.
I wonder is this common for other cancer survivors? Is the fashion industry really so disdainful or is my reaction a natural response to the shock of having cancer. Had I worked in any other sector would I have the same disrespect for my previous career?
All I do know is that the scars are taking longer to heal than I expected and they run a lot deeper than I knew.

Back to Bed

I don't feel very well...

How many times have I said that in the past, when I've had a cold or a bug of some kind and usually it is just that and after a few days I'm back to right. However a week or so ago when I started to feel poorly I said nothing. As I began to feel worse and this became evident to my family I had to admit something was wrong. In the past - by that I mean pre cancer, there was a rational voice in my head telling me that it was probably just a virus and I'd be feeling much better soon. However, this being the first time I've been ill since well, being ill...the voice in my head  was more than a little irrational.

As documented in this blog, I have suffered with back pain since surgery and this is on the side that I have a remaining kidney. Last week the pain increased and I felt very sick, I was also quite feverish and lacked energy. It got so bad I had to take to my bed which was strange as I was transported back 6 months to when I spent a lot of time there in pain. In the same way that things often seem worse at night, I felt worse being in bed unable to do anything and my mind worked overtime. What if it is back?!

A trip to my GP was inconclusive as there really wasn't anything he could do as my symptoms could mean a virus. Also with a CT scan in the next couple of weeks it was best to see the outcome of that. He was extremely understanding and could see I was feeling awful though and asked me to return this week (which I will).

Yesterday was the first day I've felt relatively good again and today is that little bit better. I've shaken off the 'sorry for myself' feeling and put to bed the negative thoughts, a lot of which came when I was feeling my worst. The pain has eased and apart from the usual backache I'm not too bad at all. I've not eaten much for a week as my appetite disappeared and I've lost about half a stone which I didn't need to.

I will have to rethink my dietry changes now as although I'm sure they weren't the cause of this latest illness, my health hasn't improved by eating healthier foods. Maybe moderation will have to be my new mantra.

Either way I'm happy to be feeling well again and thankful all over again for my health. 

Bone Scan

By the time I went for my bone scan I had stopped writing in my journal so this is from memory. The scan took place in May about 2 months after my surgery and was recommended by the consultant surgeon due to continuing back pain.
I turned up at Good Hope hospital that morning with my daughter and was taken into a small room in the Nuclear Medicine Dept where a nurse put a canular into the back of my wrist. Once that was done a specialist came and proceeded to pump in something she referred to as 'stuff' and said it was the best way to describe it. The 'stuff' would flow around my body and enable the scanner to pick up what it needed from my bones (or something like that). Obviously I am not familiar with any of the technical detail of what is involved so if you want to know more check out this piece on patient.co.uk
Once the stuff was flowing around my bones I was allowed to leave the hospital for approx 90 minutes during which time I was advised to drink plenty and most importantly 'keep away from small children/babies and expectant mothers'. Apparently this was due to the slight risk of radiation I was carrying which would mean I could give off gamma rays. For the next few hours I was a SuperHero...
With time to kill we went off to have lunch in the nearest Wetherspoons where I sat near a door and looked menacingly at any parents with children or ladies with large stomachs (the fat or pregnant question arose often...)
Back at the hospital I was taken into the room with the scanner and asked to climb on the bed, fully clothed. The specialist then explained that the scanner would come down so close to me it would nearly touch my face and that I shouldn't feel alarmed. She then made sure I was positioned correctly and left the room. For the next 20 minutes I had to lie perfectly still while this huge machine lowered itself down and moved across my body, it was a bit freaky and although I'm not claustraphobic I felt as though I was going to be crushed!
When the scanner had taken all the images it needed the specialist returned to the room and I was told I could leave. Before I went she told me that when going for a wee I must flush the toilet twice after myself as a small amount of radiation may be left, bizarre! Also, I must steer clear from Mums to be and little ones for the next 48 hours.
That night I had the feeling I may be glowing in the dark but no special super hero powers presented themselves.
The results of the scan took a few weeks to arrive and as the saying goes, 'no news is good news' I was sure had there been anything wrong I would have heard.  About 6 weeks later, which was over 3 months post surgery I received a letter. It was from the consultant and contained the information I'd asked for about my operation 3 months ago, seriously! It was brief and to the point AND at the bottom of the letter in hand writing was scrawled, 'bone scan normal'. Now I have to emphasize once more, I am more than happy with the work of the consultant and his team and extremely thankfully to them. However, when it comes to information and the way it is given, the words 'could try harder' spring to mind.
The main thing was that my bone scan had been clear which was excellent news. Unfortunately, the back pain continues so of course does this blog...

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...