I am not a (patient) number

I am not a (patient) number (or statistic) to be recorded and put onto graphs to hospital management. 

I've entered a system, which I want to understand, a system of checks and 'service level agreements' and 'deadlines' but the more I investigate, the more questions I ask, the more I feel me becoming that which I don't want to become.

My 'project plan' or 'timeline' so far

Wednesday 1st of February (DAY 1)

9am - Ultrasound appointment at radiology where a 'something' is found on my right kidney

6pm - my GP calls and explains it is a tumour and tells me about the two week window for treatment. A CT scan appointment will be coming through to confirm the ultrasound findings

Thursday 2nd of February (DAY 2)

11am - called with a date for the CT scan, booked 9.40am Sunday 5th of February

Friday 3rd of February (DAY 3)

10.30am - speak to my GP to confirm the details from our call on Wednesday night (I may not have been taking it all in!) Confirms the timings for treatment, it must start at 14 days from diagnosis

Sunday 5th of February (DAY 5)

9.40am - I have CT scan. The Radiologist explained the results would go to the multi disciplinary team or MDT (a group of experts made up of Oncology, Radiology and Eurology) for them to make a decision on whether treatment is needed and if so, what. The next meeting is scheduled for the next day, Monday 6th of February

Tuesday 7th of February (DAY 7)

Called with a consultants appointment which is 9.40 on Friday 10th of February

Friday 10th of February (DAY 10)

I have my appointment. Up to now things have made sense, I can see the next steps clearly from the information I have been given. But now things change.

My consultant, Mr S, explains I have a tumour, which has a 90% chance of being cancer. I will need an operation to remove the kidney. I go into 'ask questions and understand process' mode.

I'm told 'The next steps is for the MDT to meet and agree the exact treatment plan, operation date will be set after that. It will be sometime in the 30 days after that MDT meeting'

But that's ok, the MDT met on Monday didn't they? (DAY 6) 

No they didn't

'don't know why you were told that' 

'They will be meeting the following week on Friday 17th of February (DAY 17) They meet every Friday afternoon'

My operation date could be anytime between MDT decision date (DAY 17) and 30 days later (DAY 47) which is 17th of March. Thats 47 days from when the tumour was found.

But hold on, I was originally told, 14 days from the 1st of February but that has extended to 47????? What's happened? Why is it 47 days?

Ok, I may have misunderstood my GP and the 14 day deadline, that is quite possible.

And I get that the consultant, MrS has 30 days from MDT decision on what needs to be done (how can you book a slot when you don't know the extent of the surgery?) however I am struggling with the other delay:

The MDT actually meet every Friday afternoon, why isn't my case discussed the day of my appointment, Friday 10th of February? MrS met me in the morning, the team meet in the afternoon, simple surely? The hospital has had my ultrasound and CT scan since the Monday, they knew I was coming in on the Friday, so you'd put me on the MDT meeting, yes?

Which is actually 37 days

It feels like a whole week of wasted time, 7 days of my case being sat on a desk or computer.

But also, the cynical side of me sees this as an 'extra 7' days to meet 'targets'; that I wasn't included on the MDT that day to give extra time, to ensure targets are met.

Don't get me wrong, I am not blaming anyone I have met or will meet as I go through the 'process' or 'project plan' They are doing a difficult job and if they could give me a date the next day they would.

I'm just saying something doesn't feel right, it feels like figures are being manipulated, I've become a number, a patient number, a part of the system. Too much emphasis on the report, the number and the person. The scared person, the woman, the wife, the mother, the daughter, the sister

And its not a good feeling

Reasons to be Cheerful Week 6 #R2BC

I can sense a theme here, another extremely late posting again to join with Michelle of Mummy from the Heart but anyone who knows or follows will forgive me. I hope dear reader you do too!

I have had to really dig deep to write the post and keep my integrity. I've got an agreement to never misrepresent myself and have had to really pull myself up and out of a spiral to eventual emotional meltdown. 2012 is turning out to be very challenging.

Some great things have happened this week.

- I attended a brilliant course for work, which I'll talk about another time, but I know will change things for me
- Realisation of what a wonderfully supportive bunch of people I've the pleasure of working with.
- Total strangers sometimes offer the most supportive shoulders to cry on, literally
- I got to spend some time laughing with my daughter when I visited on Thursday
- I also spent a few hours with my sister (long car journey and several hours sat in a waiting room)

However these 'highlights' of my week have come at a high price as #Ted the Tumour is now real. The consultant on Friday confirmed there is a 90% chance its cancerous. My positive outlook has taken a big bashing. In fact it feels like I've not only been hit over the head with a dustbin, but trampled by a herd of elephants afterwards too!

There are a lot of people out there rooting for me, MrC and my kids, my family, friends, Twitter and Facebook people, blog readers and so on.

So I stand by what I said last week, I am lucky. Not only that it was found, but also because of the support I will continue to get, as I fight

And I may also be one of the 10%

Family!?

We are a family of pragmatists with a hint of black humour, as aptly demonstrated by an e-mail from my brother, who emigrated to New Zealand over two years ago
-------------------------------------------------------------------------------
from: myemail@googlemail.com
to: brothersemail@hotmail.com

Subject: Hello

Hiya

Now I know you are worried, I only seem to email when I'm having surgery! Well sorry to break it to you but guess what?

Yep, surgery again.  This time for a tumour on my kidney. I've been having problems with my gallbladder and was referred for a ultrasound. Normal procedure is to check the other organs while they are there and luckily for me, they found it!

Someone is looking out for me! I have no symptoms!

On the plus side, they will probably remove my gallbladder at the same time, so two for the price of one!!

Won't know what the next steps are until they remove and biopsy it, but will keep you upto date and am pretty sure I will be blogging it!!

Anyway, love you, love to Juliet and my niece and nephew. Promise I will get my Skype sorted eventually!

Take care

His reply

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from: brothersemail@hotmail.com

to: myemail@googlemail.com

Subject: FW Hello

Hi Fay,

Sort of don't know what to say really except get well soon (except you're not ill ill but potentially ill).  I have no idea what the gallbladder does unless I Google it and spend a few minutes on Wikipedia.  Obviously it's not important otherwise they won't be whipping it out.  I'll Google it later.

Anyway, chin up, don't peg out on us just yet and all (do you know how much it'd cost me to fly back for your funeral?!  Have a heart.  We're trying to get a new bathroom fitted and Juliette wants a Victorian slipper bath with claw feet, not some plastic do-dah from the local B&Q).

Sorry for the late reply, I hope this isn't the last e-mail you read before going under, or worse, the e-mail MrC sorts through because yes, you did expire on the operating table.  Hello MrC.  How's things?  Obviously not good at the moment...

If you do die, don't Skype me.  At least not with the Video On.  Sam being one year old would be okay, he hasn't a clue bless him, but Eva's four and half now and knows about dead things.  Questions will be asked.

Love,

Mark

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All I can say to that is 

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Reasons to be Cheerful Week 5 #R2BC

Think this is the first time this year, I've managed to get my reasons from the brilliant and wonderful Michelle at Mummy from the Heart published on Thursday. I've always been a day or two late. If I thought last week's was a slog, this week has been a challenge! 


Yesterday (I can't believe it was only yesterday) I went for an ultrasound scan to look at my gallbladder to see if it needed surgery. While there, the radiographer had a look around all my other bits and pieces. Bit like when the car is on the ramp for the brakes, why wouldn't you take a look at the exhaust at the same time?


So I'm lying there enduring the cold gel and the fact it gets everywhere, when she says she going to get the consultant to check out 'something' she can see on my right kidney. "Its probably {{insert medical term I don't understand}} but want my boss to check it out"  Second opinion lady (very nice too and a senior consultant to boot) comes in, very reassuring and agrees. Nothing to worry about but will order a CT scan and get it checked in more detail. "Ultrasounds can sometimes create more questions than provide answers" , blah de blah, reassuring spiel.


Alarm bells are going off, but I'm a calm person, no need to worry until I'm fully informed and in possession of the facts. Ring round the special people in my life (sorry if you didn't get a call :))  let them know (my daughter asked what was she going to do when she needed a spare kidney now!? Oh how we laughed) and carried on with my day.


Get home from work when my GP calls to drop the bombshell. The  ** 'something' is a 6 cm tumour; It will need to be removed and soon. Won't know the prognosis until its removed as a biopsy is needed before deciding its cancer, either way, its coming out. (I've papraphased heavily, you don't want the full conversation I'm sure, but let me know....)


So can you see why I'm struggling this week?


But I can see a glimmer of cheerfulness in this, this is what makes me..... well me.


Wow! I've got a tumour, which I didn't know I had, have had no symptoms of and it was found by accident??? How fortuitous is that?

Personally I don't think you can ask for more, someone is looking after me. When would it have been found? How big would it have gotten (cos I don't know about you, 6cm seems big enough!) I am very very lucky (maybe I should buy a lottery ticket this week??!)


I'll deal with the rest of the crap as it comes up, and I know you'll all think I'm off my rocker, but please allow me this one indulgence.

Oh, and the GP said I may be able to get a two for one surgery and have my gallbladder out at the same time! Result!
** thinking of calling it Ted the Tumour, what do you think? Got any better names?

Alone and Quiet

It's a little bit chilly and dark as I creep out of bed, past MrC who is snoring (quietly) and tip toe past Fritz, spreadeagled at the top of the stairs.


I carefully walk down the stairs, cringing at the noisy ones, hoping not to wake anyone. Because I want a little bit of alone time, a little bit of quiet. 


MrC springs awake and asks me (in a stage whisper!)  "You okay?"


"Yes, I'm just going downstairs for a hot chocolate" 


"I'll come with you"


"Please don't, I just want a few minutes alone, a bit of quiet time" I can hear the reluctance in his voice, but "Okay, shout if you need me"


So I continue down the stairs and as I open the kitchen door, the latch makes a little pop sound; the dog comes alive and bounds down to join me, tail wagging, just a little bit. But he soon changes his mind. There's no food to be had and quietly makes his way back to his listening post, on the landing, where he can keep watch on his pack.


I think he realises my need for some alone and quiet time


I'm sat at the desk looking out of the blackened window, the curtains are open. But it's not quite dark out there. There's a moon glowing in the night sky and bathing my garden with its grey illumination. There's no wind, so the tree is still, casting shadows onto the gravel path. It helps, to just look, to just think.


Today I was told I have a tumour on my right kidney, found by accident by the radiographer, being thorough. She'd checked my gallbladder and confirmed I had gallstones and continued, as she was there anyway, to give me the once over. And in that darkened room, lit only by the light from ultrasound monitor,with the shadows cast by the examination table, she found it.


So I'm taking some time, to think. Some alone time, to just sit and think, and bring myself back together