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.

Day 3 - On the Move

My second night had not been good. I won't get too graphic here but problems occurred when the tubes that were draining out of me got blocked with blood clots. This wasn't immediately spotted when I had called for a nurse, fortunately another nurse later on realised there was a problem and by simply manipulating the tubes, freed the clots and the pain got easier. My observations the next morning showed a considerable drop in blood pressure and I was told the procedure to stop the blood flow - embolisation, would be carried out that day. For this reason I was 'nil by mouth' until this was done.
At lunch time another doctor came to see me and said my embolisation was booked for 8.30am the following morning and then went to question staff who'd put me on nil by mouth?
I managed to get out  of bed that day for the first time and walk to the bathroom for a wash, not easy pushing my morphine drip and catheter with irrigation system (not to mention wearing a hospital nightie that opened at the back!) Not surprisingly though by now what I was wearing and how I looked were the furthest things from my mind.
Later that evening there was a flurry of activity when we were told that the bay we were in was needed for a mens bay. There were 6 bays to a ward, some of which were all male and some all female. Although I'd only been there for a couple of days I had become accustomed to my surroundings and who I shared the bay with, others had been there days longer. Therefore when we were suddenly told we were on the move to different bays/ward it was quite upsetting. A couple of the elderly ladies were particularly upset as they had got used to speaking to each other and this sudden change frightened them. I was only moved along the same ward into another bay along with one of the elderly ladies, my new bed was next to the window so I got a view of East Birmingham!
Probably due to the move the staff were quite on edge and obviously under a lot of pressure as beds had to be found for patients that had to be moved. More than likely this is the reason my painkillers were forgotten that evening and I was left for 6 hours before I received them. As I was already feeling sorry for myself this seemed like an eternity.
I also had a lot of pain from the catheter which I was told was quite normal as my body was 'probably rejecting it'. Too bloody right it was! In fact it turned out to be more clots which were freed by another nurse on duty. I knew by now that when you have to use the buzzer to call for help, if at first you don't succeed - buzz again!
At this point in my diary I need to make a very important point. I am truly and sincerely grateful for the care I received whilst in hospital and have no complaints about the NHS, it has saved my life. I do however recognise that the staff are human and as such there are good and bad, those that cope well under pressure and others that don't. It was not the level of care that was lacking although sometimes it took longer to get than others. The bigger problem was the lack of empathy - and you can't teach that in medical school.

Day 2 - The C Word

I can't say I had a lot of sleep that first night and it was a bit of a shocker to realise I was hooked up to a morphine drip, catheter and an irrigation system - not how I normally wake up! The biggest shock was yet to come. When the ward rounds began that day I was greeted by a doctor, he was alone and closed the curtain around me and said that the consultant radiologist would be performing an embolisation on my kidney to stop the bleeding. Having had little sleep and being in obvious pain I probably looked rather vacant and asked what this was to which the reply was 'you do know you have a cancer in your kidney?' That was it, right there!
Now I may be a little naive but I'm sure this isn't how Monroe delivers bad news to his patients and I swear on Holby City I've seen them take relatives into a side room and explain the seriousness of a condition. I really wasn't expecting to hear the C word like that, I mean no introduction and no bloody fanfare just 'you have cancer'. To be fair he was very gentle and he did hold my hand but it seemed wrong. I didn't cry because it wasn't the right time and I don't suppose it sunk in - that came later when I told my husband.
As the doctor left a nurse came in and asked what I'd been told, she was not happy and chased after the doctor presumably for a 'few words' of her own. She came back to apologise and said it that news should not have been broken in that way.
I had a visit later that day from another doctor - I don't remember who or why but that maybe because I was on morphine and not completely 'with it'. I do recall though being told the 'lump' was 7cm diameter and they were looking at removing my whole kidney. In the meantime they would have to stop the bleed with this embolisation procedure. I was also told that unfortunately the surgeon was away and so the surgery to remove my 'lump' and/or kidney would have to wait but this would not have an adverse effect. I was fine with this, I had by this time grown quite attached to my left kidney and was in no hurry to have it removed. The other matter of the cancer hadn't quite sunk in...
As the day went on so the pain increased again and I was given more pain killers. I hadn't left the bed now since I had been admitted and wouldn't have been able to if I'd tried. This was slowly dawning on me as was the fact I had a catheter which I was going to learn a lot more about...

Hospital Gowns and other 'Accessories'

Unsurprisingly I hadn't had time to pack an overnight bag...a stay in hospital wasn't on my agenda for the day when I'd woken up that morning. Once I was admitted to the ward at Heartlands I was put in a hospital gown, kind of a back to front outsized wrap dress in washed out green and blue - didn't do a lot for me.
The pain was getting no easier and I was re-canulated (apparently the one the paramedic put in had to be changed) and a morphine drip set up. My other first for the day was to be fitted with a catheter, again not an accessory I had anticipated wearing 'ever'! As accessories go let me tell you a catheter is no Luis Vuitton, its is uncomfortable to wear, unattractive to look at and unpleasant to carry around! However, this said it did solve the problem of the blood clots and help the pain somewhat so I shouldn't complain. The fact that my admission was not completed though and I was temporarily 'forgotten about' was cause for complaint however. Apparently an 'irrigation system' (as attractive as it sounds...) was supposed to have been set up but wasn't. This job was left to one of the night nurses who thankfully relieved the immense pain that had started to build up because this job hadn't been done. Once this set to work 'flushing out' my kidney I started to get some relief. Until this day I would have boasted I had a very high pain threshold, a boast I no longer make! Night one and so far I know I have a 'lump' in my kidney and that it is bleeding which is in turn causing me pain. Another day another doctor and another revelation to follow.