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Wednesday, 31 July 2013

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;

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.
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.
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.
Q. How long does the operation take?
A. 2-3 hours
It was actually 5 and a half hours.
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...
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.
Q. Is there a possibility of reocurrence?
A. Always is.
Another succinct answer.
Q. What is expected duration of hospital stay post surgery?
A. 2 days
It was actually 5 days.
Q. Explain post op procedure and limitations?
A. 6 weeks no chemotherapy or radiotherapy if confined to the kidney.
That's all I wrote.
Q. Referral or revue venue post op?
No answer.
Q. Operation venue?
A. Heartlands, Birmingham.
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.

Friday, 26 July 2013

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.

Thursday, 25 July 2013

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...