2013 When Time Stood Still

At this time of year I hear so many people comment on how quickly time has flown. For me it paused in March and from then on life continued as if in a dream where time is of no relevance. People came in and out of my life, things started and stopped, days came and went but life itself was on pause. I had cancer.

Fortunately this experience started suddenly with no time to prepare, no appointments to make or results to wait for. My cancer - although having been inside me for a while, decided to introduce itself on March 13th with a grand gesture by hemorraghing. My subsequent ambulance rides, scans and hospital admission were super swift and there it was, kidney cancer.

Once in hospital I was embolised (scroll back - it's all in the blog) and thereafter had a nephrectomy (yes my medical vocabulary has grown) to remove the tumor in my left kidney.

It was the days, weeks and months that followed that stood me still. 

As many cancer patients will know, you don't often know you have cancer until it's discovered and you need surgery to remove it. There's not usually an introduction, it's not phased in so you can get used to the idea, once you know it's there you really don't want it to hang around and get familiar.

In my case the tumor was encapsulated inside my kidney and so thankfully hadn't started to have a look around any other organs and move in. Once it was removed I was on the 'watch and wait' (to which can be added 'hope and pray') that no cells have made the move elsewhere. This was when time began the stop starty thing.

Once back home and recovering I was unable to do most of the day to day things I was used to; walking the dogs, cleaning the house, shopping and of course work. You would imagine that time would drag with so much of the day spent resting and recuperating but it didn't. During this period of rest I felt almost removed from my former life in such a way that I could look at it from a distance and decide which parts I missed and what I could do without. Rather like New Years Eve when you can reflect and make resolutions, I spent time putting my life in order. Believe me there's nothing like a tumor inside a major organ to stop you in your tracks and shake some sense into you (not that I'd recommend it...)
Fast forward 9 months to this New Year 2014 and I have woken up more hopeful and less anxious about what the coming months will hold than I have for several years. It's as if cancer has given me a right of passage, I can say 'Ok, do your worst, I've survived cancer'. I feel I have made a transition from uncertainty and hesitance to confidence and acceptance.
I start 2014 minus a vital organ and less the tumor it housed but with the knowledge that I am a survivor and as such I'm here for a reason.
Time to press Play

The Chemo Question

When I was first diagnosed with kidney cancer I had to write down a list of Q&As for the doctor as I hadn't a clue what to expect. One of my queries was about chemo and radiotherapy, as I'd supported my Mom through breast cancer I was well aware of what both entailed.
I was told early on that if the cancer was confined to the kidney (which it was) I wouldn't need additional treatment and that even should any rogue cells have travelled, kidney cancer doesn't respond well to chemo.
Following surgery and on my return home I was laid up for a short while but eventually started to get up and about and then go out. One of my first 'trips' on my own was to the chip shop up the road - I'm easily pleased. I had insisted I'd be fine to go alone and when I got there the shop staff were asking where I'd been (yes I like a chippy tea now and again...)
When they'd established that I'd not been away working or doing anything fashionably exciting I managed to whisper that I'd been ill.
'What with?'
Again discretely, 'cancer'.
'Oh a My a Gooooood' - this for the benefit of the large queue, 'What kind?'
I tried to lean across and quietly say 'kidney cancer'
'Kidney!!!? Did they take it out?'
'Yes'
By this stage anyone in the queue ordering a steak and kidney pie was looking at their options...
The conversation continued along these lines until I was being served at which point the young girl dishing up mouthed to me
'It looks good'
Oh no...
Again she nodded at me and said, 'it is a wig?'
Now my turn to speak up, 'It's my own hair, I haven't had chemo'
This was the first of similarly amusing encounters I had when having to raise the subject of having had cancer. It was generally presumed that I must have had chemotherapy which I suppose is a presumption I might have had. Now after meeting other cancer survivors who've undergone surgery to remove an organ complete I understand it's not unusual.
When I used to take my Mom for chemo I had multi coloured dreadlocks and so many times when sat waiting in the chemo suite people we spoke to presumed I was the cancer patient and that my mad hair was false. I hadn't expected my normal hair to raise the same speculation.
Time for a new 'do'
: )

Pause to Say Thank You

You know that pivotal moment, the one that stands you still and stops you in your tracks so that you hesitate long enough to look back?
That was kidney cancer for me.
Despite all the pain, discomfort and worry. Putting to one side the drips, drains, catheters and of course the surgery. Not forgetting (how could I) my hospital stays and the seemingly endless wait for information and of course results. I have a lot to be thankful for.
I didn't know I was ill, I had no pain or discomfort to speak of - or at least I didn't recognise it. The day my kidney tumor introduced itself though painful was to say the least, quick! Not knowing what I faced at that time meant I didn't have much time to worry. In fact, the first moment I remember thinking I was in trouble was when my ambulance had to pull over and give me morphine, even then the pain took over the fear.
The nature of my tumor meant that I would have no chemotherapy or radiotherapy and the fact it was removed along with my kidney intact meant that no further drug treatment would be needed. Just the watch and wait.
Even today, eight months on there are people I know, neighbours and some friends who are unaware I've even had cancer. This partly down to my initial reluctance to tell people and also that I've been able to get up and out and carry on as normal without making too much fuss.
As I said, a lot to be thankful for.
The issues I still face are ones I deal with privately and have written about on this blog which has helped me come to terms with a lot of what has happened. By sharing this it has helped to know that others going through similar or the same may have been helped. This is not something I share or discuss openly and is only publicised here and via twitter.
So Thank You.
Of course thanks go to my family who, as far as I am aware have never read this blog, nor would most know of it - they don't need to, they lived through it with me Thank You.
Friends who have send messages of support, called, sent cards, bought flowers and just been there from the shock discovery through to the treatment. Thank You.
Then there are those friends who have stayed. Now that the big cancer song and dance has died down, normality is settling in and you are still here. The messages, calls (and cakes) still come. Without asking you know when I need you. Without saying, you know who you are. Thank You.
For the many messsages, tweets and emails of support and thanks for my blog. To those of you still battiling with and continuing to fight cancer and those like me who are praying they have seen the back of it, Thank You.
To the James Whale Kidney Cancer Fund I owe thanks for listening to me when I had questions that had no answers. For supporting this blog via twitter and enabling others with kidney cancer to both read and get in touch. Because of this communication I have been introduced to some of the most inspirational people and especially those who I can relate to and empathise with. This has meant our kidney cancer journeys have not been made alone which in turn has meant they have been made that bit easier. Your support helpline and the website are both informative and insightful, giving readers the chance to see not only what kidney cancer involves but what it means to individuals. Thank You.
A big Thank You goes to The Sharon Fox Cancer Centre How can I put into words what visiting your centre has done for me. The blog post I wrote at the time was one of the hardest because it made me cry. I hadn't anticipated the overwhelming emotions that would engulf me by simply walking in the door of your centre. That realisation that I had cancer was one I will never forget and one that I hadn't understood fully until I walked in the door. Meeting the incredibly brave people that work with you and rely upon your charity simply took my breath away. Thank You.
The people I owe a huge debt of gratitude for are the medical team, doctors, nurses, health care assistants, paramedics and hospital staff. I have written my kidney cancer journey from personal experience, some good, some bad, some could be better but it could have been a whole lot worse. I am truly thankful for the intervention of those who diagnosed and removed my cancer. A special thanks goes to my GP and local medical centre who's staff have been incredibly supportive and still are. Thank You.
I never gave my cancer a name as some advised, I get the whole think of someone you don't like and name your tumor after them but it didn't work for me. It didn't actually feel real until it was out and now I feel as though I didn't know enough about it, weird but true.
However, I have blamed my tumor on all those things I should never have done, the one drink too many, the one job too much and the times I should just have said No.
Now I can say Thank You for the opportunities still left to take and the choices yet to make but, having been stood still - I will think twice before I say yes.
Thank You

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...