Wednesday, 29 December 2010

A Valid Point That Should Not Be Ignored!

7th September 2009

Now I am really angry, why I hear you say?
Well I went to the hospital at 9.30am and I waited one hour before I was seen. Now I am not angry at that, but what happened later.
First warning sign, it had taken them thirty minutes to prep the room. Now that’s ok means they are being thorough. Then I enter the room they prep me up with a gown and I’m told to sit in a comfy chair that can be altered.
They place pillows at the back of me so I am jammed against the mammogram machine. Then the nurse alters the height of the machine and plate so my left breast can sit on it. She takes another plastic plate that slides on the top bit. Only to be confused into how it is attached. So I say hold on and I show her how it slides into place. Once this is done she positions my breast onto the lower plate and compresses my breast ready.
“Ok! What’s wrong?” she says and moves a plastic switch while my breast is still compressed in the plates and nothing happens. She presses a letter P on top no response. Then she turns to the other nurse in the room searching for answers.
“What do you think?” She asks the other nurse in the room.
They start to fiddle with the machine to see if they can get it working. Mean time I’m still sat in an uncomfortable position with my breast squashed. I look at them trying to wish they could read my thoughts somehow or the expression on my face.
“Look let me leave the room” I say calmly “I don’t mind.”
“Oh no you don’t need to do that” one of the nurses replies, “It is probably something simple.” And they continue to fiddle with the machines buttons.
How can two nurses not know how to work a machine that they are supposed to be trained to use? Five minutes later they have not got it working and finally they release my breast from the plates to my relief.
“Let me leave the room” I request again. “Leave the both of you to fix the machine just call me when you are ready.”
I tie the surgical gown they gave me and wait on their reply.
They both finally agree that I should wait outside. I take a seat after all machines do play up it is not their fault. Five minutes later I am called back into the room to compress my left breast into the mammogram machine again. They take an x-ray and then take another. The radiologist is called in, which did my ultra sound biopsy two weeks ago. She checked the picture on the computer gave the thumbs up. Then she changed the type of picture taken so it is shows more detail by magnifying the area needed for the core biopsy needle.
Second warning sign they have a problem with the machine, again no-one can work it. They are playing guessing games including the radiologist on how to get the readings up to do the core biopsy needle position. Now I have a warped sense of humour and I am sarcastic when I am angry. Some people say I am bullish with my approach, but I don’t think the nurses noticed or the radiologist.
“Maybe I should try! It might have male components and needs putting in its place.” I sarcastically slip in. My breast is beginning to ache from the attention it is not receiving.
In the end there were three people in the room and the radiologist trying to work out how to work the machine.
They finally work it out after touching the computer screen several times.
Now I am an easy going patient, but this I find rather worrying. I could feel my stomach doing somersaults with the nerves.
The biopsy is done under local anaesthetic like the ultra sound, but the anaesthetic did not work straight away. The radiologist did the touch test and it felt numb, but when it came to making the incision for the core biopsy needle it stung.
Now I know my breast is still hyper sensitive from the last time and I’m due on my menstrual cycle so my breast is swollen. So I make excuses up for them so things remain calm and the radiologist quickly tops the injection up.
Besides they are feeling unprofessional the fact no-one could work the machine properly in front of me. But then I start to feel sick, which isn’t a good sign especially because I have a core biopsy needle in my breast. I’m thinking do not pass out and fit for gods’ sake. But I was feeling rather warm and sticky which is not a good sign.
Once I had vomited I felt much better, but the mess I made was not so good. Thankfully the nurse was fast to find a sick bowel. I did not fancy the bus ride home smelling of sick.
“Must have been the banana I had for breakfast.” I told the nurses to break the tension.
The room had filled with the odour of bananas. I could not believe the amount of blood that had come from such a small wound.
“Well at least I bleed well.” I said to the radiologist.
Third and final warning sign, one of the nurses replies was, “This is the first mammogram biopsy I’ve done in six months we don’t always do them.” Warning bells went up I felt angry as hell. My humour had kept me calm and now I hear something I wish I had not heard.
What am I a guinea pig? I do not mind students being present or nurses learning, but warn me first pleases!
My breast is just as important as anyone else’s.
I have just had a procedure done with staffs that have little knowledge of equipment and experience. I laugh at the governments’ way of making cut backs to the NHS.
I turned to the radiologist, “What next because I do not have another appointment?”
“Go to the breast clinic and request a follow up appointment.”
I gather my things together and head to the breast clinic feeling really upset and let down over the day’s events.
The breast clinic was closed and they send me to the patients’ services appointment desk downstairs. They said there is nothing until the 23rd October 2009. So I go back upstairs and tell the breast clinic that I’ve just had a biopsy and I need an appointment sooner. The breast clinic receptionist does not have authority to make appointments and gives me a direct number to my oncologist consultants’ secretary because I should have an appointment within two weeks of procedure.
So I go home and ring the number only to be transferred to the same patient services receptionist desk down stairs in the hospital. I put the receiver down and think that’s it. Tears flood down my face with the frustration and the pain I am in. I ring Steve up to tell him what has happened and he agreed it was very unsatisfactory. I ring Sandra my friend up north, she tries to console me even makes the odd joke to break the stress of the situation.
“Can’t you get your hospital changed?” She asks.

8th September 2009

It is 6am in the morning I have had less than four hours sleep because of the discomfort I’m feeling and thinking over yesterday’s events. How have we got to a situation where we are willing to except a second rate standard of care? I know I am not willing to except it, but there are those that are not equipped with the knowledge of what standard of care they should be receiving. Yes, we have to make room for human error, but this is my life and my breasts they are tampering with.

While I was sat in the corridor outside of the mammogram area a Portuguese old man with bowed legs and a walking stick struggled to walk by me. As he passed me the gown he was wearing was wide open and there was no nurse or member of staff to save this man’s dignity. Why not offer the man a wheel chair or a second gown? He was going in the X-ray room. Why allow him to struggle? Maybe it was by choice he chose to walk, but not the loss of dignity surely.
Why allow the public to see his frail bare legs? He had only his shirt barely covering his underwear from view.
Is this the standard of care we except?
We look at the expenses scandal of MP’s and complain, but that is not new it has been going on for years.
Would the public gain anything if we retrieve that money lost through greed? Would the NHS gain anything from that missing money or would it be swallowed into another greedy pocket just waiting for his or her opportunity.
Are we willing to complain and except that public money is being used incorrectly? Yes because it is now 2009 and it has always been in the media domain.

It is not the nurses’ fault that they do not have adequate time to train on vital equipment. When resources are over stretched and underfunded.
I have personally come to the conclusion I personally do not want to be treated at this hospital. Not that the staff are rubbish at their job, but because they do not have the experience to treat me. I have heard from local people that they would not like to be treated at this hospital either. So it is doing nothing for my confidence when staffs make silly errors.
Would the Prime Minister accept this standard of care for his wife? Would the staff be stupid enough to make any medical errors in front of the Prime Minister?
Hell no! There would be a major inquiry to why the incident took place.
His wages which comes from our pockets plus the perks with the title ensures she will get adequate care in a hospital of their choice. It certainly would not be a lower ranking hospital with stories of failures hanging round its head.
So why should I?

After speaking to another friend she advised me to drop in at the Big C hospital in London. The nursing staff there could not do enough to calm me down. The happy go lucky breast cancer nurse I spoke to was really nice and listened to what I had to say. Smiling at Sophia every now and then especially when she requested loudly she wanted the toilet.
She said “Don’t worry we shall get you sorted it is obvious your confidence had been given a knock.” The nurse explained that sometimes these things happen and it is not nice when it does. That the consultant I have is a very good consultant and try not to worry.
I am actually scared now because I am uncertain of my treatment and the outcome.
But in general I am a positive person and for my confidence to be knocked takes a heck of a lot. At least I have the sense to ask and request. Some would just soldier on hoping the nightmare finishes soon.

On the way home I got a phone call from the breast care nurse from the bad hospital. I was right. It is DCIS and she requests I go to there tomorrow to see the oncologist consultant.
I did not know whether to laugh or cry. I felt proud I got the prognoses right, but now I had the treatment to face. All I knew for certain was I was not happy about being treated there. I don’t mind my consultant it is the rest of the hospital that worries me. I ring my husband up holding back the tears as I speak so Sophia cannot see. I was on the central line tube and a person next to me could hear my every word. When I had got off the phone she asks, “You alright love?”
I smile and nod my head whilst looking out the window opposite me searching for answers searching for a place to hide my tears.

This journey I am about to undertake I so wish would dissolve away. My life has had its good points, but I am tired of the knock backs. For once I feel I am in a comfortable spot and all I need is support. Then the word CANCER rears its ugly head to turn my life upside down again. Sometimes you want to become an ostrich and bury your head deep in the sand. The truth is far from what you would really want to accept. Ostriches don’t bury their heads in the sand and neither can I.
One minute you are watching television programs on breast cancer which does not mention DCIS. The next you are actually facing the dreaded diseases yourself. But it is not just the diseases it is your treatment that puts added pressure. The fear of chemotherapy and a mastectomy puts the fear of god into me. What is my life going to be like now? How will I cope? What is the end result?
My father had chemotherapy as part of his treatment. I never saw its affects on him, but Kayleigh has mentioned little details. I could not go up and see him. Something inside had already told me all them months ago I had issues. People did argue I should be at my fathers’ bedside, but understood the reasons why I could not. I know he had attempted to come see me before he passed. The fact my sisters stood in his way frustrated the situation. I could have arranged to meet up on our own, but he would not have been alone. He could never go anywhere without one of them. There was little room for privacy in his life, but he had chosen that life. That’s why I chose to move to London and start a new life. I wanted my privacy back with a fresh start. This meant for that to happen I had to turn my back on my old life.
Dad never knew I had breast cancer he passed away on the 16th July 2009 just short of my thirty ninth birthday.

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