Monday, 22 April 2013

Pop The Cork.. Get in There!

Finally I received a phone call to say I’m being treated at the Royal Marsden. I explained why I wanted to be treated by them and they were more than happy for me to jump ship and join them. It was explained that in a year I may have to leave them once the Herceptin is done, but this will be reviewed then. They are requesting all my notes to review my treatment and to sit down and explain the results. They were surprised that no-one had taken the time to explain anything since finishing the chemotherapy and radiotherapy. That my notes were not present at my last appointment for me to ask any questions was inexcusable.

Every question the Royal Marsden asked I said I could not answer because I did not know. I said to be perfectly honest I’ll be happy just to put this whole mess behind me. I explained my only concerns were from the recurrence and my pathology report from my mastectomy in 2009. That my calls of concern were ignored, and if it was not for my vigilance my recurrence would not have been detected until it was too late.

So now I can breathe a sigh of relief and I meet my new oncologist on the 1st May.
And from there I want to share my first attempt at an oil painting. Yes it is a portrait of me and I’ve entered it into a competition. The title of the painting is... 


‘Contemplation with a big C.’

Thank you Marie Beattie for the title xx







Wednesday, 17 April 2013

Being Pro-Active


Yesterday I spent two hours inside the Houses of Parliament and it was an eye opener. A plumber is employed to fix a leek, a dentist fixes your teeth and a doctor cures the sick, but what credentials does a Health Minister need to be a Health Minister?


Just go to a University and study as a barrister and be a private secretary to the prior Health Minister that’s all. From there you surround yourself with experienced individuals in their chosen field as advisers  With the guidance of these individuals in the background decisions are made. Or at least that’s how I understand it, but I’m open to corrections.

For 30 minutes in a committee room I listened intently as our health minister was quizzed on breast cancer risks, awareness and early detection in the over 70’s. For each question asked her reply at the end was others in that field would have a better reply because she did not want to say something that was incorrect, but if she had experience or interest in the medical field it would have shown in her replies.

The next hour and a half with the other three other guest speakers were no better. To sum the day up there is room for improvements across the board for treatment, awareness and general care, but surely they already know this? And when will we see these improvements? Well maybe next year or the year after.




I actually now understand why the NHS is in a mess.


House of Parliament Toilets.


Saturday, 13 April 2013

Tea and Cake


Yesterday I asked the nurse who administered the first cycle of chemotherapy if I could see my notes. This nurse is a jolly soul with a sweet disposition. When doing her rounds she makes sure everyone is comfortable and takes her time to log down everything. That’s why I asked her if she had logged the issue with my arm and the FEC treatment I was on. She straight away went to the relevant page within my medical notes showing me what she had written for that first cycle. She read back what she had written to both me and my husband. I asked the nurse so why did the registrar say nothing was written down? Why did I have to go through all that unnecessary pain? With a tilted head and a reassuring tone she said I don’t know. 

She personally understood why I had asked for the referral and was apologetic which something no-one else has done since the damage was done. Her reply, no patient should go through unnecessary pain or stress the treatment itself is bad enough. We both agreed it all fell on communication with my oncology team. Then we spoke about my cardio results and if it had been explained properly. She mentioned the 57% was just within the margins of having the Herceptin. That if I have any further chest pains to ring my oncology team and request an emergency appointment for imaging to be repeated sooner.


This is the first time someone has taken the time to properly explain my results with my medical records present. There are still questions that are unanswered like am I now in remission or not, but for now until I hear from the Royal Marsden there is nothing more I can do.

On a more cheery note I had a lovely time in central London today. I went to a Daniel Sandler make-up seminar and came away with a goody bag. And as a bonus I had Tea and cake at the Cavendish Hotel with a bunch of lovely ladies. The breast cancer lottery maybe complicated, but watching a bunch of women with beaming smiles only makes me more determined… too have fun.



The above ladies have/are battling Bowel Cancer and fingers crossed will be doing a calendar to raise awareness. Gina Potter bottom center is a lady I met via my FB account. She traveled to London to be Daniel Sandlers make-up model for the day. The Picture was taken by the fantastic Stephen Potter, Gina husband.

Thursday, 11 April 2013

Finally....


It only took three weeks and a phone call to remind my BC nurse I had not changed my mind about the referral to the Royal Marsden, but finally she found the time to phone me back to say a letter had been sent that day. Her excuse was a recording had been left in a rack somewhere and had been overlooked. To me it dissolves any doubt I may have felt about the decision to move away from the hospitals treating me. Yes I understand the fact she and the team have other patients, but that is not my problem. My concerns are strictly for me and my wellbeing.

I feel a bit like the Lion in Wizard of Oz…I have a roar, but no-one is listening. It is no good when people see you more like a bag puss that is easily muffled, but when you put my back up against the wall my claws come out.

I’ve been told so many good things about the Royal Marsden I know I’m in safe hands.  


Thursday, 4 April 2013

Game, Set and Bloody Match!




Ok so I find myself in a position do I pick up the phone or do I wait.
I’m in a stale mate situation with Mr L holding the cards. I’ve received no confirmation letter or communication with my BC nurse reassuring me of the referral I requested to the Royal Marsden.

When I demanded to be transferred three weeks ago via my BC nurse I was told it would be discussed and a letter sent, but once I put the phone down I felt the tennis match between these two hospitals with me as the bloody ball wasn’t quite over. 
  
In a last ditch attempt I phone my BC nurse up, but hear a phone message saying she’s on annual leave until the 7th. My next infusion of Herceptin is booked for the 12th, so this set could be won by my team.

If I was a difficult patient in any shape or form I could understand being ignored, but my request is a sensible one. Place me under one roof with one team and the situation will be resolved. The fact certain words and actions have taken place in front of me has left me disillusioned about the standard of care I’m receiving. I’m the patient, I’m the one being prodded and poked and I will have my way.

Letter from Plastics:

Dear Dr S,

RE: Ms Sarah Mendoza –DOB: 29/07/1970 NHS Number: *** *** ****
      18 M*** **** ****, Northolt, Middx, UB5 5DR

I reviewed this delightful lady in Plastic Surgery clinic today who underwent left mastectomy and LD/implant reconstruction in November 2009 and capsulectomy in 2011. She had recurrent left breast cancer in July 2012 and underwent chemotherapy and radiotherapy which was completed approximately 2 weeks ago. On examination today her reconstructed left breast was soft upon palpation and there were no signs of capsular contracture.
We shall see her again in 3 months time for review or earlier should the need arise, and we will keep you informed of her progress.

Kind regards and best wishes

Yours sincerely

Mr D

See I am not a difficult patient…

Letter from Oncology

Dear Dr S,

RE: Ms Sarah Mendoza –DOB: 29/07/1970 NHS Number: *** *** ****
      18 M*** **** ****, Northolt, Middx, UB5 5DR

I reviewed Sarah in Dr L Breast oncology clinic today when she attended prior to cycle one of adjuvant Herceptin.

Her baseline ejection fraction on a transthoracic echocardiogram was 57% which is within our treatment tolerances. I have made her an appointment to be seen on the 18th June 2013 preceded by a transthoracic echocardiogram on week commencing 3rd June. All being well, she will continue on Herceptin on a three weekly basis in the interim.

Yours sincerely

Dr P

Being a tennis ball between two hospitals is not a brilliant position to be placed in. The issues you face with the odd grunt and grown is supposed to weaken your disposition, but I’m a Yorkshire women who wants her referral with zero excuses.

Oh and that letter I don’t understand the 57% bit, except that it is acceptable…. I hope!


My daughter playing the piano with her egg band.. I did this for a competition to win a brand new spanking £1000 camera from Jessops.. sadly we didn't win