Days 7-14 In Limbo

Going home was very emotional as I'd left 6 days earlier not knowing I had cancer and never expecting a stay in hospital. Seeing family, friends and my two dogs was wonderful but at the same time very sad as I was having to break the news to them of what was happening. Even the dogs seemed to know that things had changed and life wasn't the same right now, our routine had abruptly stopped.
I chose not to tell many people and news of my condition was on a 'need to know' basis, I just didn't want to have calls or questions. In hindsight I'm not sure this made it easier or harder for my immediate family as I was restricting them from sharing what was happening to me but of course, was also affecting them.
The business I was running became irrelevant and I closed it. Having used social media daily I ceased all posts and literally shut down everything. At this point I had no idea where things would go. I was to have major surgery in 8 days, that was it, out of my control. What would happen next was the unknown and so I had deal with the here and now and the business felt very much in the past. Also, I didn't want to speak to anyone outside of immediate family and friends so there was no way I would be tweeting my experience at that time.
I suppose looking back it was a kind of limbo, the days waiting for surgery were the only time I actually had cancer, prior to that it hadn't existed to me. Now I was having to wait for it to be taken out, along with a kidney that I suddenly felt rather attached to. The wait wasn't made easier by the pain I was in.
During the 8 days I was home I continued with my diary which had been started in order to remember detail of what was happening to me and I'd continued to help me make sense of it. Things I recorded included sleep patterns, painkiller amounts, snow falling, my daughters 21st, what I ate, visitors and tears. I also made accounts of having to tell family and friends the truth about my hospital stay and the other visit that was looming. Until then no-one knew that I had cancer and telling others made it more real.
My dreams at this time were surreal and may have been made more colourful by the cocktail of drugs I was taking. A lot of what I wrote at this time concerned family and how I felt, these words will remain private and reading back over them almost transports me back to that time, so difficult for all of us.
A couple of days before the surgery my husband took me for my pre-op at Good Hope. This was my first trip outside since leaving hospital and it was lovely to be out in the car. The pre op involved answering a list of questions about my general health and personal info, addresses etc. I had blood tests, an ECG and was weighed and measured - apparently I had the pulse of an 18 year old!
The night before I was feeling a bit sick and unwell but this was probably nerves, I've written in my diary 'I really enjoyed my last supper' Haha I'm not sure I was full of confidence at this point!
To use a cliche the last week had been a rollercoaster of emotions, not only mine. My family had loved and cared for me whilst dealing with the worry and uncertainty of my condition. I'd seen friends break down on hearing my news, I'd even had one offering me her kidney! I'd closed my business and dropped out of my routine quite comfortably, nothing else seemed important at the time.
One more sleep and I'd say hello to Heartlands again and goodbye to cancer (and a kidney). The wait was over.

Day 6 Rude Awakening 3 The Eviction!

Following my Q&A session that morning I was told that pending blood test results taken earlier I may be able to go home later that day. This was my 6th day in hospital and I was feeling really rough and very tired and fed up so the thought of home was wonderful, even though I knew I'd be back soon.
After lunch I fell asleep. I was in an all female bay of 6 which was on a mixed renal ward. At that point I had a cannula in my hand for morphine pain relief but the catheter had been removed.
What happened next still shocks me and those whom I relay this to.
I was woken from what must have been a really deep sleep by a sharp pain in my hand and could hear someone saying my name. As I came round there was a Health Care Assistant by the bed removing things from the side cabinet. Standing over me was a nurse who was removing the cannula (hence the pain). As I started to wake I asked what they were doing and was told I was being moved to the discharge lounge to go home. By now they had my legs out the bed and all my cupboards were emptied onto the bed. The HCA was trying to put my trousers on and I'd started to cry - the first time since I'd been there. I told them I'd not had my blood test results or phoned my husband but they dismissed this and continued stuffing my belongings into carrier bags.
Then a smart man in a suit arrived by the bed and introduced himself as the surgeon who would be removing my kidney. The nurse and HCA stopped what they were doing, obviously not expecting him to be there. I was perched on the edge of the bed, trousers round my ankles and belongings stuffed in bags around me. Awkward silence... The surgeon then asked if I was ok, was on on morphine (I was crying so probably looked a mess). I managed to get myself together and said I'd been woken by the cannula being removed and told I had to leave. The surgeon then addressed the nurse and HCA and said I'd not be going anywhere at which they scurried away. The whole bay was silent and watching.
The surgeon then proceeded to introduce himself properly and explained he'd been on holiday and as he now had a list to follow my operation wouldn't take place for 10 days. He said normally after an embolisation they would remove the organ as soon as possible but unfortunately this hadn't been possible. He said that due to the embolisation the kidney would be swollen and may stick (not sure what to) and so surgery could take longer and dependant upon what they found may be open surgery although keyhole was planned.
All of this information was being given following the rudest awakening from staff at the hospital and so I was understandably distressed. As the surgeon left he went to speak to the sister, presumably about my treatment as he was not happy.
I took myself off to the toilets and for the first time since arriving at the hospital sobbed and sobbed. Looking back I think that the seriousness of my condition had just hit me full on but it was obviously not helped by the rude and thoughtless nature by which I was being evicted from my hospital bed.
When I returned to the ward the other patients were also visibly upset and I sat with a lady who comforted me as others expressed their disgust at what had happened. The mother of a young girl in the bed opposite said she'd only ever seen this sort of thing on hidden camera footage on the TV, it really was awful.
Then the nurse who had woken me returned with the HCA who was also very upset and the ward manager had been called. They asked me to go back to my bed and speak to them which I did but refused to have the curtains drawn around. The nurse said, 'I dont think you understood us we weren't making you leave'. That was it, the lady next to me said 'Yes you were we all saw it' and the mother opposite joined in. The staff were obviously worried I'd complain and were desperately trying to cover their tracks.
I assured them I was fully aware of what had happened but that I had no intention of complaining. What's the point it wasn't going to change my situation. I could see the HCA was genuinely upset and knew she was only following orders as was the nurse. I understand the pressures placed upon them and the need for beds, what they did to me wasn't personal it was just badly handled. I'd get over it.
Following this I was visited by two other senior nurses, one a sister who both asked if I was ok and if I had any complaints. The truth was that if the surgeon hadn't arrived I would have been sitting in discharge lounge waiting for my husband to collect me.
My blood test results came back ok and later that evening I was discharged and my husband collected me from the ward. Leaving the others in the bay was really emotional, strange the bonds you form in such a short time but I knew I'd be back but next time for surgery.

Dressing up and feeling down

Before I continue with what happened next I thought I'd skip forward again to the here and now and how the day to day is feeling, minus one kidney with a tumor.
On the whole I can honesty say that in just over 4 months it's not immediately obvious and my cancer journey could be 4 years ago as life pretty much goes on as normal. Those people that don't know what I've recently gone through wouldn't need to be told as it has no bearing on what I can do physically. That said, I am still slightly slower and a little more awkward when walking but that's due to subsequent back pain (I'll get to that).
The thing that has bothered me personally more is the adjustments to my wardrobe and appearance that I've had to make. I had expected there to be discomfort on and around where the scarring is but hadn't realised it would carry on for so long. Being a scar of course there is the obvious appearance of said 'stitch up' that is not something I really want to show and tell...!
It was my left kidney and it's 7cm tumor that was removed and fortunately this was by key hole surgery. Unfortunately the kidney and it's tumor were somewhat swollen so the 'keyhole' is rather more 'manhole' in size, approx 8cm. I also have 3 other little incisions that surprisingly seem more irritating but this may be because they are positioned nearer where my waistbands are.
These additions to my body art are the reason my clothes are either uncomfortable to wear or just not sitting right as I also seem to have changed shape! I think that is possibly due to me not being able to exercise and so being naturally slim I have acquired a belly for the first time since having children and so I'm not feeling at my most attractive right now.
Basically I can't wear anything that has a waistband right now unless its loose or elasticated so jeans are difficult unless I leave them undone (which I do regularly). I wont wear anything tight fitting that may highlight my shape or clothes that don't quite reach my waistline so half my wardrobe is currently useless.
The things that don't aggravate my scarring are generally clothes that I wouldn't normally wear and so I feel awkward in them.
I suppose I should be grateful that the reason for my clothing calamity has been removed and caring about what I'm wearing should be the least of my worries. It's just that it's a daily reminder for me of what has recently happened (that and catching myself in the mirror). To everyone else I'm looking fine apart from a slightly strange walk but that's not attracting too much attention.
I should also be grateful for the fact that my job as a dressmaker enables me to make clothes so what am I waiting for...time to design a whole new look!

Day 6 Questions Answered - It's Kidney Cancer

At this point I had seen several doctors and a consultant along with different registrars on ward rounds but still hadn't received any definite diagnosis. Neither had my husband been present at any of the various explanations of why I was in hospital or what had led to my admission. This was apart from day 2 when a registrar on a ward round told me the lump bleeding inside my kidney was cancer - news given on my own with no further explanation. Since then I'd also been told I'd lose part of my kidney, the whole kidney, possibly if they stopped the bleeding no surgery and that the 'lump' wasn't yet identified.
For this reason together with my husband I had written down questions that we needed the answers to. As it was impossible to time visiting hours with doctors ward rounds the answers to these questions would inevitably be given to me alone, but we needed answers.
The doctor on that mornings ward round was not anticipating being given 12 questions to answer when he came round to see me, neither was he expecting to have to wait while I wrote down the answers. However, I needed those answers and thankfully he cut to the chase and I felt I finally knew what I was dealing with.
So here are the answers but I've also included what actually transpired as things don't always go according to plan;

1.
Q.When will I have the operation?
A. 3-4 weeks
The surgery actually took place 9 days later. I was told it would have been immediately after embolisation as a rule but the surgeon was away and on return he already had a list to follow.
2.
Q. What are you removing and what is the cause and how do you know?
A. Cancer. We know a dirty big tumor when we see one.
Told you he cut to the chase. No cause given.
3.
Q. What will be the procedure?
A. Keyhole or open, the surgery will depend upon the size of the kidney as it will have swollen due to the cancer bleeding and subsequent embolisation. This can also cause the tumor to stick and therefore be more difficult to remove hence usually removing sooner rather than later.
4.
Q. How long does the operation take?
A. 2-3 hours
It was actually 5 and a half hours.
5.
Q. Has the CT scan shown full extent of the growth or will the operation be exploratory?
A. Yes.
That's all I'd written so I'm guessing it was exploratory...
6.
Q. Will there be a biopsy to determine the grade of the growth?
A. We know what it is.
I didn't get more than this and as you will find out, it was over a month post surgery until I did.
7.
Q. Is there a possibility of reocurrence?
A. Always is.
Another succinct answer.
8.
Q. What is expected duration of hospital stay post surgery?
A. 2 days
It was actually 5 days.
9.
Q. Explain post op procedure and limitations?
A. 6 weeks no chemotherapy or radiotherapy if confined to the kidney.
That's all I wrote.
10.
Q. Referral or revue venue post op?
No answer.
11.
Q. Operation venue?
A. Heartlands, Birmingham.
12.
Q. Will my husband get a chance to speak to the doctor/consultant?
If he's here early morning or late evening.
Shame that didn't fit with visiting times...

Well that's it. All I needed to know about kidney cancer given in a ward round visit on day 6 of my hospital admission, alone.
I was grateful to know what I was facing and felt more prepared now.

Day 5 High's & Lows

Yesterday's embolisation appeared to have worked and the bleeding from the tumor had stopped. The procedure had knocked me about a bit so I'd slept on and off yesterday but at 2am on St Patricks Day I was wide awake.
Usually this would be a day of celebrating which of course involved plenty of alcohol and dancing. Here I was lying in a hospital bed in a considerable amount of pain. There was a lady next to me vomiting continually and another young girl crying on and off. Things always seem worse in the middle of the night but this was a new low. Things were about to get worse though as when the nurse came to check my wee it appeared that I'd started bleeding again, the embolisation may not have worked.
I was dosed up on morphine and monitored closely throughout the night, I have to admit at that point I was very frightened. Eventually as the morning arrived the bleeding subsided again and the pain relief started to kick in - as did the texts of Happy St Patricks Day and bet you're off to the Parade - if only they knew! I had chosen to tell no one about my hospital admission, only close family were aware at this time.
One of the nurses on duty this day was Audrey and she was an angel. Having seen what I'd been through during the night she made sure my husband was contacted and could come in to spend the day with me. It was a first as far as St Patrick's Day's go, hot chocolate in a wheelchair was not what I'd planned but it was a real treat and a chance to have some time outside the ward to try and make sense of what was happening.
It also gave us time to write down some questions for the doctors as I had not been formally told what exactly the diagnosis was and my husband had not seen any doctors at this stage. This is something we both felt was wrong, after watching TV dramas like Monroe or Holby City you presume that with something as serious as cancer the news would be broken to you with a member of your family or someone close, at the very least a nurse. My news came via a ward round doctor in a vague manner just after I'd woken up - not how I expected to find out. Also, there was no way to ensure my husband could be present when a doctor came to see me as the ward rounds varied and visiting times are strict so all diagnosis so far had been given to me alone. By writing down questions between us we would at least be able to hopefully get some straight answers.

4 Months Post Surgery Progress

I had to leave the blog for a while - it will become clear why once I return to where I left off. Firstly I thought it best to record where I'm at now, 4 months after surgery. It has also become clearer to me why I need to write down my cancer journey as I still struggle to find anything or anyone to compare my experience with. Kidney cancer is on the increase and yet is still one of the least common of the diseases and therefore less information is readily available.
Having had keyhole surgery to remove the tumor and kidney, the scaring was not as extensive as that of open surgery. However, they had to get it out somehow and the scar left is still about 5" long but its the smaller incisions that seem more sore still (where they poked the keys in presumably...) It was the left kidney and my insides seem to be healing according to plan on that side. I am limited physically still with what I can lift and carry etc but it's not apparent unless I tell people.
The problem conversely has been with the right side where I am experiencing quite severe back pain in the kidney area. Obviously as I need to safeguard this one the GP has been carrying out tests to determine what is causing the pain. In the meantime I am taking painkillers when needed - not ideal but needs must. I'm currently awaiting results of more xrays and blood tests but don't expect anything sinister to come from these. The likelyhood is that this has been caused by the surgery and may be a result of me compensating for the initial pain in my left side which is easing now.
Emotionally I still feel cast adrift as far as hospital aftercare goes. Having recently taken my Mom for her breast cancer check up its remarkable how different the cancer care is. The appointment was in a purpose built breast care centre with specialist nurses and everyone from receptionist to doctor was positive and helpful. My only appointment since surgery with the consultant was  together with renal patients, involved a 4 hour wait and made me feel hopeless afterwards. Kidney cancer it seems is a case of get it out and get on, job done. In my Mom's case she is part of breast cancer support groups and visits to surgery are like school reunions, everyone has either been through, going through or supporting someone with the disease and the vibe is a good one of help and support.
I will return to where I left off with my kidney cancer journey shortly. I can just remember shortly after diagnosis looking on the web for similar experiences and finding nothing. I have never been interested in what the cancer does as there's little I can do to stop that but rather how the person copes which is why I'm writing this down now.
I still feel lucky, they found it, removed it and I'm recovering relatively well, my GP is good and very supportive and aside from an unsightly scar and a slightly lopsided gait I'm pretty good. Just need to return to my hospital diary and relive the remainder of my story. Maybe tomorrow...

Day 4 - Second Rude Awakening!

Woken this morning by a man shouting a tirade of abuse at a member (or members) of staff, to repeat much of it would mean using the C word again and I don't mean Cancer. After last nights musical beds I can only presume that the ward had been even more short staffed that normal. This particular man it seemed was wheelchair bound and had needed to use the toilet but no one had answered his buzzer - he was absolutely furious and was determined everyone was going to hear why. We couldn't see him or any of the staff but every word was audible and he did not mince those words...! When he finally stopped it all went very quiet until an elderly lady opposite said, 'I really enjoyed that!' I think maybe he spoke for many people on the ward, although probably in more colourful language.

When the breakfast was brought around I was told that despite having my embolisation procedure that morning I was now able to eat and would not be nil by mouth.

Soon after I was taken down on my bed into a theatre like room with lots of equipment where the interventional radiologist introduced himself and explained what he was going to do. I was then prepared by 2 of his team who then discovered I'd had a coffee and rice crispies...and had supposed to have been nil by mouth! They were not happy with the ward staff who had also taken out my canular so another had to be put in. 

I was made to feel very comfortable and the team were all very reassuring but I was still a little scared as the procedure is carried out while you are under local anesthetic. I had forms to sign to say I understood the risks involved - I'm glad I'd not looked this up before I went in! A tube was fed up through a small hole made near my groin and up into the artery which was feeding the blood to the tumor, this was then blocked with small beads. I felt very little and although the screens were above me I chose not to watch what was going on. I did however note the music playing which was quite surreal as I was a well know Irish piece called Farewell to Erin which I have played myself many times.

When the embolisation was complete the radiologist himself took me back to the ward which was really nice, the whole team had been extremely kind and reassuring. In fact they said that it was not usual for them to be brought in on a Saturday but I had been on an emergency list and so I am very grateful for their care.

The rest of the day I spent mostly sleeping, although not particularly invasive the embolisation had tired me out, maybe the worry, I was however confident it had gone well and hopeful the bleeding had now stopped.