Dear Consultant

Dear Consultant,
Following my CT scan a couple of weeks ago I had started to worry about the results. Continuing back pain since surgery and as yet unexplained bleeding has obviously heightened this irrational fear that maybe the cancer had travelled.
As 2 weeks had passed and no news I decided I would call your office and ask why the hold up. I am in contact with 3 other kidney cancer patients in other areas who had scans within a week of my own, all of whom received results within a week of their scan and so I didn't think my asking would be a problem.
I phoned your secretary and explained I'd had a 2 week wait for results and was immediately put on hold while she completed something 'important'. On her return to the phone she looked up my details and told me, 'your results are clear'. To be honest I hadn't expected your secretary to be in a position to give out this information and had obviously been anticipating a letter from you.
An all clear is obviously wonderful news and I was hugely relieved and thankful.
However, this was not acceptable on any level and only added to the catalogue of poor communication and dismissive behaviour I have received from you and your department.
When I went on to ask the secretary what my appointment date was she replied that there wasn't one 'on the system'. She went on to ask me did I want to make one?! Now forgive me if I'm wrong but, I did have cancer, I was supposed to have a 6 monthly check up following my ct scan. Ok, this was already 2 months overdue but even so it would have been reassuring to know I was at least on your system for a recall.
I should not have to request my own appointment should I?
I have received one letter from your office following my kidney cancer and this was dated 6th June, my surgery was March and I'd seen you in May for post op appointment. At this appointment I described the back pain and bleeding, both of which you said had nothing to do with your surgery. You booked me in to have a bone scan as a precaution. Also detailed in this - my only letter was the Histology 'showing a pT1bG2 renal cell carcinoma' and that I would have a ct scan in November with a review in December.
I had asked more detail about my tumor at our post op appointment as obviously being an emergency operation there hadn't been a biopsy beforehand. In fact all I'd been told by one of your doctors was the initial scan showed a 'dirty big tumor' in my left kidney. Another doctor had estimated this at around 7cm diameter. Forgive me if I don't know their names - they didn't introduce themselves.
Your answers to the questions my husband and I put at our meeting with you post surgery were vague to say the least. We had already waited over 3 hours and had then been directed to one of your doctors for this appointment, one I'd waited for since March to discover the answers to my questions. We asked to see you which did not please your doctor at the time and were put back in the queue. Again, I don't think it unreasonable to ask to see the person who performed my surgery and knows what he found?
Questions about how long the tumor may have been inside me met with the answer, 'how far can a horse run'. On causes and/or possible explanations for the cancer, 'take yourself to the children's hospital and ask yourself why they have cancer'. As far as how big, what kind etc., the only information is that which I can't understand as it's in medical abbreviation.
Is it so bad to want to know what you cut out, to need to find out if it could have been prevented or if there are ways I can improve my diet and lifestyle? My Aunt died of kidney cancer and my father had kidney problems, should I not worry that there may be a hereditory factor. I have continuing pain and bleeding that wasn't present before my surgery, is this so easily dismissed?
When I received my letter dated 6th June from you it arrived in a window envelope. Next to my name and address was written in biro, 'bone scan ok'. The postman knew those results before me! Not only had you not bothered to write a separate letter, you had scrawled it at the bottom of an already late communication that was actually written to my doctor.
I want nothing more than to put this whole experience behind me and to feel free of cancer and it's hold on the last 8 months of my life. If you can't understand my need to have answers to questions or even results of scans then I cannot feel trust in your ability to continue as my consultant. Your secretary, after apologising for my upset said herself, 'you must feel quite abandoned? That is an understatement.
I began writing my experience of kidney cancer down whilst in hospital as the pain and distress I was enduring meant that I couldn't keep track of all that was going on. I wrote down everything I knew and all that happened. It wasn't until several weeks after surgery that I began writing this down in blog form. Partly to help me make sense of the experience and also in the hopes it may help others going through similar.
I had struggled to find information on kidney cancer, in particular that from patients themselves and with little or no answers to questions, had looked to other sources for help. My blog, I hoped could maybe give someone going through this ordeal an insight into how it feels.
However, I have left quite a bit out of my diary and toned some of it down as it is both personal and a bit too graphic for me to relate. What I didn't want was to show the experience as something frightening and and bewildering. Well it was.
This could have been helped by the most simple thing of all, information and the way it is given.
I'm sorry to say that once again you have failed to communicate information and have left me feeling as though my kidney cancer was insignificant. I don't want to feel this way any more and therefore will be seeking alternative care.
I am fortunate to have an excellent GP who has ensured all that can be done to help me is carried out. Most importantly he has listened to me and not once dismissed my fears, he has answered questions where he can and given help and advice where needed.
Please God I will never have to return to hospital but one thing is for sure, I have no intention of visiting Heartlands again.

In case you do need reminding of who I am I you can read my blog here An Unfashionable Cancer
You may need to start at the beginning because you missed my arrival as you were away, my diagnosis in particular can be found here The C Word
I think that Day 6 - Questions Answered it's Kidney Cancer  was probably the day when the penny dropped though as the 'dirty big tumor' description really hit home.
Having had 3,800 views I am presuming this diary of my kidney cancer experience may have gone some way to enlighten and hopefully help others going through similar. The messages and emails I've received certainly echo this and so I will continue to write.
I hope you have time to read.

All Clear 8 Months On

So, yesterday was 2 weeks since my 6 month (which was actually 8) Ct Scan as advised by the consultant surgeon. As I'd not heard anything and was losing sleep I decided the time was right to call.
At this point I won't go into details of the conversation I had with his secretary, that is for my next blog post...
The fact is, I had to ask the secretary if there was any news and she told me the results were clear.
Relief.
I had wanted to feel happy and elated but the manner with which I'd had to ask for and the way my result was delivered made me sad and annoyed. There is more and this I will write in my next post.
Today I go to see my GP for advice. Enough is enough, time to move on.
For today I am just so pleased the cancer hasn't travelled. thank God.

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.