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

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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

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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.

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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

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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.

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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.’

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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

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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. 

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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... 

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Do You Own Your Cancer?

As I sat in the corridor waiting to receive the 16^th zapping from the radiotherapy machine a familiar face sits beside me. Your daughter is not with you today? I shake my head saying no not today she is at school. The women smiles and continues to talk about how children today can be so demanding, but never think how those demands take their toll. The conversation continues revolving around family and friends and how some drop to the wayside while others become over protective on the cancer journey.

Then I say well I’ve had my cancer for three years now.

The sixty something black Caribbean women turned to me and said, but you don’t have ownership surely? I look at her puzzled. The correct words are, ‘This cancer’ or ‘the cancer’. To say my cancer or your cancer implies you have some sort of control or responsibility for it being there. And personally I think that is utter rubbish no-one has ownership of cancer.

I look at this woman and for once in three years someone actually made sense. She continued it is not your fault that you use the word my so readily because from young you are conditioned to use it, but there are times when certain words have no room within a sentence.

This woman is right we are conditioned to feel responsible, but truthfully that is wrong. She turns to me surely if we are responsible then why all this difficulty in finding a cure? The women never finished the conversation because it was my turn to be zapped, but she is bloody right.

I think the word ownership is something we all should examine with thought. After all we do not have a copyright on cancer. If someone did then we would know this individual. I did not wake up and say well today I’ll have cancer, but this is what this lovely woman is trying to say. There is no room at this Inn because no-one truly has the responsibility for this disease.

The minute we are diagnosed we are dragged along with the pink confetti adding confusion to our heightened emotional state from being diagnosed. From there our tears are swamped and dulled by the lets be strong beating out loud. And the words ‘MY’ and ‘YOUR’ are used as if we have control over cancer. This in turn develops guilt and the feeling of responsibility of even developing this disease.

But who truly has ownership of cancer people?

WELL NOT ME! L

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Thrombophlebitis And Being Pro-active

I personally draw the line with the relationship of patient and consultant. I have a saying that no-one is put on this earth to instantly like you. I have glitches in my personality and one of those glitches is trust. Whatever anyone says to me I investigate and double check or I play the observer very well. That is why it is important that consultants talk rather than lecture me on what they believe my treatment should be. Yes some of us patients are demanding and fussy, but with the mixture of fear and nerves you are bound to be. You have been thrown into a world i.e. cancer and the instant response is the negative ones. Will this shit kill me! And will this person really be able to save me?

The last few days have been hell for me and friends believe beyond a joke. After me sending the letter off to my MP I had already prepared myself for something to go wrong at the clinic at the big CC hospital.

As usual I arrived on time at the clinic had my bloods done waited 20 minutes and was told Sarah you do not need to see the consultant today. And make an appointment for the 31^st for your next set of tests to be done. I said what is this a joke? I began to rant at the top of my voice. What is the point in having a consultant if you don’t see them. Then I explained on how when using the emergency oncology number in my chemotherapy book. I had developed a lump on my fore arm which she said on the phone was not a problem. I being sensible decided to go for a second opinion, so I went to the big NP hospital who diagnosed a cyst if left untreated would delay my treatment. Not only that the big NP hospital had tried to use that number that night and could not get a reply to double check on my treatment. You lot are clearly unaware of this and not once has that consultant checked my arm since the damage started from two cycles of chemo. My rant went into the clinic and I said it was disgusting you are treating these patients like meat and no one deserves that. The nurse said look let me get the sister to see you and I said no. I said forget it. You clearly do not know who you’re dealing with. I’ve already written to my MP and I will be writing again to keep him informed and tell handsome Mr L he needs to get his act into gear because his name and this clinic is clearly mentioned. He has cocked up and I will be seeing a solicitor.

As I walked down the corridor I bumped into the receptionist from the chemo unit. He said hi Sarah with a smile and when seeing the tears of frustration welling up in my eyes he asked what was wrong. I started to babble with emotion and then said that’s it I’m not having any more Chemo and I stormed away. I phoned my husband mentioning what had just happened. He instantly said Sarah go to A&E, so I did. I calmed myself down and nervously went into A&E and asked if I could see an oncologist to check my arm out. The A&E was fantastic and to be honest I wish my team were them.  I told them I had hit that brick wall of frustration and it was uncalled for. The fact I know I am not the only patient with the same sentiments on treatment says it all too. I said I don’t want to complain, but it has been one issue after the other and it has come to this. They said they will have my arm checked and get the version of events from the clinic too.

When the A&E doctor returned you could see her attitude had slightly changed towards me. She said the clinic had mentioned I had missed two appointments. My reply was clear if I have missed two appointments then pull CCTV footage and I did this with a calm smile. Clearly these people are covering their mistakes and did not expect me to come to you guys. The appointment at the clinic for my forth cycle of chemo was running late. When I say late I mean my appointment was at 8.50am and there were no lights no receptionist to book me in. I am a Yorkshire woman after having my bloods done I walked up to the reception desk said look you are clearly running behind can I have my next appointment for 21 days’ time? The sister had just arrived in the clinic at 9.10am saying really you should see your consultant. My reply was harsh because I said come off it I have not seen my consultant since July, so who are we kidding here. I continued look both my arms are working. Clearly my legs are working because I’m here and my jaws are yapping. Now a few other patients found what I said funny because of the issues in this clinic. I said look there are other patients here and they need you to sort them out I’m not priority and if there was something wrong I’d tell you. I did this all with a smile thinking I would be easing the work load not knowing that after my next cycle my left arm would swell. Clearly I say to the A&E doctor this has backfired on me, but I have been to every appointment issued and on time they are trying to escape their part in this mess. I looked at her I said I am speaking to you clearly and direct I’ve watched you quickly grab a bit to eat I don’t see a consultant sat in an office doing that. You are run off your feet and yes I am angry, but if I sued this hospital then those pressures will not be felt by a consultant but the hospital itself. I have been to several hospitals over a stretch of time and I have developed excellent relationships with nursing and doctors, but I also understand there are always a few bad apples.

The team in the A&E pushed for tests to be done on my arm because clearly there was still an issue there that needed investigating further.  The doctors had to rule out a thrombolytic situation because the lump was very hard. After a few hours and an ultra sound it was diagnosed as Thrombophlebitis.

I went to the Maggies centre that day too and they also inspected my arm out. Maggie’s have forwarded an email onto handsome Mr L clinic suggesting I have therapy on my left arm because the damage is so bad. Maggie’s is a life saver to those who don’t know. They can help bridge the gap with treatment and finances. The Maggie’s team are not just people they were in the nursing profession and understand the glitches that can occur when communication breaks down.   

As for my Chemo well yes I turned up on time with 24 mince pies and an apology to the receptionist for my outburst. They were laughing and joking with me straight away and knew it was totally out of character, but as I was stood there along came another compliant about clinic 8 from another patient and I pulled away shaking my head…

Yes we managed to walk the red carpet at the Jack Reachers premiere and Sophia met Tom Cruise lol

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A Letter To My MP....

Stephen Pound MP,

HOUSE OF COMMONS

LONDON

SW1A 0AA

8th December 2012

My Ref:  MEND01008

Dear Stephen,

Thank you for keeping me updated on the breakthrough breast cancer aims that were brought to your attention. I found the attached letter from Anna Soubry very interesting in the fact it shows she is not aware of the bubbling pan that she sees on simmer among women of my age group. I am a HER2 triple positive patient and have experienced sadly how MDT boards get it wrong i.e. my recurrence. 

January 2009 I went to my GP with a feeling something was not right. At the age of 38 I did not have a lump in my breast which media publish day in day out in fact there were no symptoms to speak of. My GP checked my breast and said Mrs Mendoza you have nothing to worry about. One month later while I was in Egypt my left nipple developed a lesion on the tip. Thinking it was just chaffed nipple I treated it like cracked nipple due to breast feeding. On returning home I purchased crack nipple cream and anti-septic cream. From March-August 2009 I tried to cure my issue I did not know I had developed Paget's. This cancer is rare among women my age group and in a lot of cases can be treated as eczema rather than cancer. When finally returning to my GP in August because I am also Type II diabetic a full set of bloods was ordered. And yes my GP treated my breast cancer as mastitis rather than breast cancer which is another error commonly done. It took two weeks until my GP finally sent me to the hospital on a URGENT after receiving my blood results. The fact that women are not normally sent for mammograms due to density of breast tissue also cropped up during my diagnosis. At Ealing hospital they instantly on the same day after me having a mammogram and it showing mass calcification of my left breast for core biopsies. These biopsies were done via ultra sound and after 2 weeks came back inconclusive. The MDT board were going to release me because to them even though they had not seen me in person. I did not have Paget's or High grade wide spread DCIS lurking within my breast. Thankfully a oncologist at Ealing stepped in and insisted that the core biopsy be repeated but this time with a mammogram. Her words I do not understand why they do these tests via ultra sound because the breast tissue can move away from the core needle. I had to go through the pain of waiting on results a second time which was not pleasant, but had to be done. October 2009 I had my left breast removed and reconstruction done the same day. My cancer was pre-cancer all in situ my lymph-nodes were free of cancer. The results from biopsy at Charring Cross hospital showed it was triple positive to HER2 and neg to progesterone and estrogen. I had a pre-cancerous tumor growing laterally six centimeters and had attached to my peck muscle wall. Showing possible micro invasion with a fat question mark. The MDT board had decided the mastectomy was adequate treatment and no medication was required. 

For three years I was going back and forth with follow up appointments. My right breast for what ever reason had developed mass cysts and was not playing ball. In January I had a lumpectomy done for a suspicious area. At one appointment a registrar in 2011 at Ealing hospital that I had never met before was even going to discharge me. His words but your case is straight forward you don't need to see us anymore. My reply but I'm due another six month appointment. The man in question had not even read my notes, but under protest gave me another 6 month appointment.

July 2012 I'm sat in bed the day before my six month appointment and I feel a 5mm lump on the outside edges of were a mammogram would not detect. I personally thought it was down to scar tissue from the drainage tubes from mastectomy. On going to my oncology appointment the following day and speaking to the registrar I repeated said written words. He had other ideas he believed it was a lymph node, but because my right breast was still not settled he wanted both breasts checked with an ultra sound. In the ultra sound room they found two what looked like cysts and believed them to be harmless. They took biopsy of both lesions and it come back as a recurrence, but this time the results showed Stage 3 cancer with HER2 triple positive and estrogen positive.  

And the moral of this story Stephen well if it was not for me being on my feet and being pro-active over 3 years I would be pushing up the daisies as we say up north. On speaking with my breast cancer nurse on the phone at Ealing Hospital I said I had received better care having a high risk pregnancy. And I know if I had been in America they would of given me Herceptin. Her reply but Sarah we are not in America. 

Stephen I have been back and forth from hospitals for various health reasons since I turned 19 yrs old. And the one thing that sticks in the back of my mind was when a nurse approached me back in 2007. Sarah whatever you do do not fall pregnant or seriously ill in London the care system there is a mess. That maternity nurse had moved from central London to a post at York District Hospital. 

For someone who is only 42 years old I have many stories to tell about the NHS system and how sadly things can go wrong if patients are not listened too and their needs met. 

Only this past two months of my treatment I had another issue arise because on first meeting with Mr Lewanski in July 2012 at Ealing Hospital who is also based at Charring Cross I requested a portacath. His words but you have juicy veins. After years of prods and pokes my veins collapse and it is written on my Ealing medical notes that my veins are awkward, but Mr Lewanski knew better. On my first cycle of chemotherapy my veins instantly collapsed and hated the FEC 75 treatment. The nurse said I needed to have a portacath and she would put in a request. My second cycle approached and on meeting with a registrar at Mr Lewanski clinic he said nothing had been said or written. His words can you tolerate the next cycle until we get you a portacath after all you will be receiving herceptin for a year also. I agreed and the following day in the chemo unit at Charring Cross again my vein started to collapse and became agitated with the treatment. I insisted that the treatment continue and the nurse was concerned and wanted to find another vein in my right arm because they cannot use my left arm done to lymph node removal. My treatment should of taken one hour, but took 2 hours and 40 mins to complete. The nurse said if they do not contact you in seven days for portacath refuse treatment. That I should ring Mr Lewanski office and chase said portacath. As she instructed I after having chemotherapy had to ring up Mr Lewanski office to ask why I had not received a referral for a portacath. The following day a message had been left for my portacath to be fitted in 2 days time. On returning to Mr Lewanski clinic for my bloods to be taken I waited for 1 hour and twenty minutes to be told I did not need to see Mr Lewanski he has not seen the damage to my juicy veins. 

And the Moral of this story well I'm left with two damaged veins and now a cysts because my arm became infected. And Mr Lewanski is not even aware of the infection in my arm which could lead to my treatment being delayed. On ringing Charring Cross hospital last week complaining about my arm the Oncologist who was out of hours said it was nothing to worry about. I saw sense and went to Northwick Park and they put me on a course of anti-biotic. When Northwick Park tried to contact Charring Cross with an emergency number I had been issued they could not get a reply. Northwick Park wanted to discuss the treatment they wanted to place me on due to an issue with a reaction I had with anti-biotics when having the portacath fitted.

My story is not unusual within breast cancer treatment in fact in some places it has become normality. Those that understand what standard of care is acceptable are the ones that are speaking out. Yet due to fear some remain silent because they do not want to come across as nags and just want to return to normality. 

Anna Soubry needs to get out of the office and visit the cancer clinics in my opinion. I have seen women die because young women are not being heard and are receiving treatment too late. She is placing a age on breast cancer when there is no age requirements to breast cancer. My request for both smears tests and breast cancer to be placed together is not to confuse the two illnesses, but to make sure young women understand the importance of early detection just like cervical cancer. As a diabetic I have what I call a yearly MOT. That yearly MOT saved my life because it was those bloods that found my breast cancer. If I had not developed Diabetes those bloods would not of been taken. Diabetes is nothing to do with breast cancer, but has everything to do with breast cancer because with type II they have found a possible link to breast cancer. 

I do not want to sue the NHS for leaving my young daughter without a mother Stephen. I want the NHS to improve and recognize that it needs to improve the system across the board for other young women being freshly diagnosed with this disease. We need support, we need to be heard and not ignored. We have families and friends sat on the side lines without support. I have watched the numbers jump from 28,000 to 48,000 in three years. And they say it is down to early detection, but sadly how many of the 48,000 are left in the cold. 

My stories may also highlight why in some cases people refuse to sign petitions in keeping said hospitals open. If the staffs at said hospitals are not listening to patients and failing to meet their needs across the board then said patients will not back a petition because they have become disillusioned. How can a patient back a system that is flawed and leaves patients feeling unhappy with their treatment...

Hope to hear your thoughts on my reply.

With best wishes

Yours Sincerely

Sarah Mendoza

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