Angelina Jolie Being Pro-active on Cancer.

I’ve stayed out of the Angelina Jolie debate because I felt there were enough blogs talking about her very personal choice, but I've now seen her in person and I'm kicking off.. Angelina’s decision to have a double mastectomy was not a rash one. It was a pro-active approach to the possibility of her developing breast cancer, and to me that is a thumb’s up.

When I heard Brad Pitt was having the world Premiere of his movie World War Z and Angelina would be accompanying him it was a must for Sophia’s collection. As I waited patiently for the stars to walk the black carpet event a reporter from an American paper approached me. He asked if there were any Americans that would not mind being interviewed. I silently listened on has he asked a question that hit a raw nerve. What do you think about Angelina having a double mastectomy? I butted into the conversation and said it was her personal choice that no-one has a right to judge. I have got stage 3 breast cancer and it is important to get the message across that there is no cure, but being pro-active and investigating the options out there for breast cancer is the best option we have. A mastectomy is not a cure for breast cancer it only narrows the statistic down and I assure you Angelina will have had all this explained to her. I have been fighting this disease to keep it at bay three years the statistic given to me back in 2009 was 2% on a stage 0 diagnosis. I was told to move on after having a mastectomy that it was all in situ and I had nothing to worry about. I was given the statistic of 5% of returning and three years later it was discovered by me not a doctor.

The reporter jotted down everything I said and he said he admired my attitude to this disease. I said it is nothing to do with attitude but beating cancer and putting the correct message out there. He asked me so what brings you here? I said I have a hobby that both I and my 8 year old daughter share to escape the cancer bubble. It costs nothing and we get to meet the stars on the red carpet. Today Sophia is not with me because she has her piano lesson, but she’ll be here maybe for the Superman premiere.

Video Clip of Angelina on black carpet with Brad Pitt

Then Sky news approached me and they asked the same question. And yes I went on another pro-active rant supporting Angelina's choice.

Sky News Clips..

To top this I’m still painting and Mitch Winehouse is now following me on twitter.

Portrait of the lovely Sarah J Harper.. Wife of Doug who developed breast cancer at the age 52

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 1^st 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

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.

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 7^th. My next infusion of Herceptin is booked for the 12^th, 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 18^thJune 2013 preceded by a transthoracic echocardiogram on week commencing 3^rdJune. 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

Break The Trust and You Break The Patient.

I was lucky to win two tickets for the UK Premiere of G.I.Joe. Walking the red carpet and a free night out before my next oncology appointment tomorrow is a welcomed diversion. Sophia was disappointed that she was not going, but the rules of the competition were over 18 only.

As I walked down the red carpet wearing a cream faux fur collar jacket I could not help but wave at the autograph dealers like I was the star. At first they did not recognise me, but my smart appearance did not fool them for long. My friend who I had brought along to experience the furore that I and Sophia have seen so many times thought it was madness. How could people wait hours in the freezing cold and rain? It baffled her because she is not fazed by the entertainment world. I said for some of those people it revolves around money, but for me and Sophia it’s a day out. Most the time we are away from these individuals and have friends that are collectors. My friend still could not understand the appeal, but it is our thing, and away from the cancer bubble.

We walked the sodden wet red carpet into the foyer of the cinema and my friend caught a glimpse of Dwayne 'The Rock' Johnson. I nudged her to get her camera out and snap a picture. Dwayne 'The Rock' Johnson was chatting with David Hayes the British heavyweight boxer. Sadly my friend took too long trying to set her camera up and security moved us on. I was a little faster and managed to get a couple of pictures in the foyer.

Our seats were at the front of the cinema. This meant when they did the intro I would get some excellent film footage on my camera to share with Sophia. And thankfully my friend would be able to take some pictures to show her son. The usual complementary bag of popcorn and bottle of water was waiting.

The following day I believed I would receive some sort of reassurance that my cancer had finally gone, but yet again I was left upset and disappointed. On arriving at clinic 8 the sister started to panic thinking I was there for a port flush. She instantly started to babble on about not having any port needles to do a flush. I said but I’m not here for a port flush that I had an appointment with Mr L.

I booked myself into the clinic and took a seat to wait for my name to be called. One hour and a half later still my name is not called. I go to the reception desk querying my wait. The receptionist went to investigate and returned saying the nurse will call you shortly. I take a seat again and wait a further thirty minutes to be weighed and sent back into the clinic. Another twenty minutes go by and finally I’m seen by a registrar. He is all apologises and explains my notes are missing. Then I’m told to sign a piece of paper for Herceptin to begin. He explains how they have been using Herceptin fifteen years and still have not got to grasp on the side effects. That it can damage your heart, but the heart seems to recover with time. And did I understand all of this?

Well yes of course I understood because thankfully I have other BC ladies at hand advising me. I signed the piece of paper and then explained I was having issues with the Tamoxifen. I was told I had to take it up with my GP and he would refer me onto a Gynaecologist. That there was nothing they could do there. I calmly said ok and left without even trying to get into any further conversation about my concerns. I wasn’t told if my cancer had gone because this man had never met me before. My notes were nowhere to be found, so it was pointless trying to ask. I was sent up to floor 5 to book an echo of the heart to be done in April. I thought to myself well that was bloody productive. As I walk up the four flights of stairs to level 5 I ring my husband up. I tell him in detail what has just happened and he said not again. He wanted to know when I start the Herceptin. I said ops! I forgot about that, so instead of going back to clinic 8 I go to level 6, chemotherapy and ask them. After all it will be them administering the drug every three weeks.

I return home with friend’s texting me, so has the cancer gone? My reply I don’t know because no-one seems interested in telling me anything.

Today I leave a message on the answer machine for my BC nurse to contact me. Two hours later she rang me back asking what the matter is. I said I want a referral to the R M. I want to be placed under one roof where my treatment can be monitored properly. I’m tired of the miss communication and errors.  She wanted me to explain even further and I did not see the point in doing so. We had already been down this road already and I did not want to keep repeating myself. I said look I have two very serious illnesses that impact on each other and no-one is taking into account my stress level. Every time something goes wrong at that hospital my heart sinks. And I should not be having that sinking feeling. I have been treated under several hospitals and bar one instance I have not had any issues with treatment or staffs. She said she understood and that my concerns were being noted. She said I should speak to Mr L and ask for the referral. I instantly said no and the reason I say no is I have only ever seen Mr L twice, once in July 2012 and the next January 2013 for radiotherapy to begin. Again I repeated to her if I don’t care about me then who will. I’m sorry but I want a referral for a legit reason and that is my sanity. I said only twenty minutes back I snapped at my husband because I’m at breaking point. Is that validation enough for you? Not to mention the fact my feet are dry cracked and if my diabetic nurse sees them she will hit the roof. I said Tamoxifen affects and creates Diabetes do you think I’ve not read the piece of information that comes with those pills before taking them. No-one is asking or monitoring me and to top it all are losing my medical information. She asked when the Herceptin starts. Friday was my reply. Oh! She replied. I said look I can wait until I’m transferred. The BC nurse instantly said no which I knew she would. No fool in their right mind would delay their treatment. I was advised to go have my first session and she would sort the referral out for me with Mr L herself.

Result!!!!

Well yes for me, but I should take some of the responsibility for things going pear shaped in the first place. If I had ignored what my GP said back in 2010 about referrals making thing awkward I would not be in this mess.

I cannot help but wonder about ladies that are in a similar position. What about those ladies with silent tears that no-one is picking up on? The NHS is a good system, but for that system to work without error or fault it must be transparent. Consultants, doctors and nurses must all be speaking the same language. Compassion and showing an interest is important to a patient’s recovery. If the staffs show they are not bothered then it creates issues of trust. Break the trust and you break the patient.

Body Image and Breast Cancer

I love taking the piss out of myself. I do not take myself serious as an individual at all. I know I have faults and those faults I tend to fixate on when really I should be using them. So recently I went rummaging through old bits of art work I had done in my twenties and came across a cartoon caricature of myself. Now the original was drawn by some else, but all those years ago I had changed it into various avatars for my MSN because I hated actual photographic images of myself. The original artist picked the faults on my face like the ridge in my nose that had been broken as a child. And the shape of my chin and blew them up BAM! In my face, but in defiance of shying away from the image drawn, I learned to celebrate those ugly parts realising early on that what I fixated on is not important. Actions tend to speak louder than words in my world.

My confidence has grown over many years and a few bashes. This has helped me get past the image I now see in the mirror from numerous surgeries to both breasts. I do not ignore or disguise my scars. I hate them, I resent them, but acceptance of such scars is hard to swallow, but I will not be pulled, pushed, cut or bruised into feeling I am less than the next person because my image does not fit the beauty persona society creates. The kindness of a good heart and the warmth of my soul will always shine that and being a stubborn shit that will not be stopped. I have learned to take me not so serious, but take the good parts of my personality and use them to the max. The numerous natural talents that I hold come in handy when expressing my true feelings to this disease.

And to finish of this blog post I have corrected and improved an image someone posted on my FB page. I thought it needed some extra info added on the symptoms of breast cancer this included links. Awareness is not just about checking your breasts it is about understanding your body and its changes. I believe in the natural instinct that tells you something is not right, the internal kick up the arse that we tend to ignore. 

So please, please if in doubt shout!

Do not leave it because you think you are alright. It is better to face up than ignore these subtle changes that could mean pushing up the daisies or being with your family. In other words, ‘It is better to be safe than sorry.’

Mothering Sunday With Breast Cancer

As I lay in bed on this very chilly Mothering Sunday morning my mind turns to the book Peter Pan. 

Peter Pan

Mrs. Darling first heard of Peter when she was tidying up her children's minds. It is the nightly custom of every good mother after her children are asleep to rummage in their minds and put things straight for next morning, repacking into their proper places the many articles that have wandered during the day. If you keep awake (but of course you can't) you would see your own mother doing this, and you would find it very interesting to watch her. It is quite like tidying up drawers.

You would see her on her knees, I expect, lingering humorously over some of your contents, wondering where on earth you had picked this thing up, making discoveries sweet and not so sweet, pressing this to her cheek as if it were as nice as a kitten, and hurriedly stowing that out of sight. When you wake in the morning, the naughtiness and evil passions with which you went to bed have been folded up small and placed at the bottom of your mind; and the top, beautifully aired, are spread out your prettier thoughts, ready for you to put on.

- J M Barrie

Beating Chemo Blues

Having the Chemo blues is one strange sensation. The shock of going through all this treatment is now sinking in. The only way to describe how I feel is to say I’m at the bottom of a very steep hill, and my mind and body are fighting to scramble up. Reaching the top seems easy, but the fear of the not knowing makes the hill much steeper.

  

The 19^th is slowly creeping up and I will get the results on whether the zapping worked. The ‘If’ of cancer treatment is always there lurking it never goes away especially when you have a recurrence. It sort of shrinks the percentages that the breast cancer lottery feeds on. I did try asking those that were zapping me if it had gone, but their lips were firmly sealed. The fear of knowing that they still could dismantle my MX breast is a path I don’t want to walk down.

To switch my brain off from those worries I have I still kept myself busy.

http://www.ealinggazette.co.uk/ealing-news/local-ealing-news/2013/02/26/give-your-body-an-mot-and-help-beat-cancer-64767-32886058/

Book week meant I had another reason to dig the sewing machine out once again. This will be the third costume in 2 months. The receptionist at Sophia’s junior school said I put certain mums to shame. My reply Nah, I just make it look easy because I have the machines sat gathering dust. But the truth is I don’t want to use the excuse of cancer for her not having a costume. I want Sophia to be like every other child, excited about being her favorite book character. 

Humoring Cancer

These are the everyday sentences that gravitate my way and my replies.  

1.     Your strong

Like most people I’m a brilliant actor.

2.    You look better now than you did last month…

Hmm! I do believe you said that last month. Do I sense a white lie?

3.    You should be taking it easy…

Yes, but I need to breath too

4.    So does this mean you’re done?

Well the oncologist thought I was, but I keep going back because I love her bedside manner.

5.    I like your hat

Yeah I'm auditioning for the new Hovis advert

6.    My Aunt had cancer and died

Sorry to hear about that, but I’m Sarah Mendoza and I'm very much alive.

7.    How do you cope?

I don't... do you?

8.     I don’t know what I would do if someone cut my breasts?

Well I don’t think you’ll have much choice it is that or pushing up the daisies.

9.     I like your attitude

Tell my husband that 

10. I have breast pain what do I do?

Why are you stood here talking to me get to your GP and get it checked?

And I do hear some of these sentences over and over again and my replies remain the same...