Is There A Choice?

9^th June 2010

Had appointment with my GP this week. We discussed my issues with the hospital I am being treated at. I said I prefer the Big C hospital where I had my mastectomy done. It was explained to me that it goes before a board of GP’s and they decide and the lightly hood of me changing is slim. The other option is to find the name of a breast surgeon that is at the Big C hospital and write a letter explaining why it may help me in my recovery, but I have given it up as a lost cause. So I am stuck with the treatment and aftercare I have got. Yes I am upset and deflated about the whole situation, but what can I do.

I also visited the Maggie centre to relax before my plastic surgeon appointment. Found a book in a book shop before arriving explaining breast cancer and treatments. There is not much I don’t already know, but it is something to read while I drink a coffee.

I end up chatting to a women who has the same cancer consultant as me. I felt awkward when speaking to her.

I honestly can’t explain how I really feel inside. I listen to the forty four year old women speak and the similarities to her story in diagnoses ring out, but she is in a bad situation and her treatment involves intense chemotherapy. That’s when both our stories change and go on different paths. I reassure her saying it will be over soon and you will move on. That was not true, not really because you never move on. Your constantly praying for every appointment to be in the all clear.

Low and behold when I went to my plastic surgeon appointment I was told that my implant is showing signs of being rejected. If it isn’t the cancer it is the fear of rejecting the damn implant. You are told in consultations that the risk factor of you rejecting the implant are possible, but part of you just wants to believe it won’t happen to you. Nine months on and I could end right at the beginning for reconstructive surgery. The plastic surgeon did say they would replace the implant if I am rejecting this one, but what are the odds it could do it again?

Vanity has a price especially in the eye of the beholder.

When returning home I am given a short lecture on how negativity can have an impact on recovery by my husband. Again no cuddle or reassuring words only a cold ice box awaits.

The only person who is having an impact on my recovery is my husband if the truth be known.

What’s wrong am I broadcasting it on Face book where some of his friends can read it?

Well sorry I have a forum of women in a similar situation to mine some with partners that actually want to be there for them. They did not have to ask their partners for support it was automatic. I had to corner Steve and ask can you make it. I hate begging especially to a man. It makes me feel like a nag or an irritant. I will always wait until someone offers at least I know the gesture is genuine.

He moans and groans about a hamstring injury which he inflicted on himself by playing football. Then he asks me to rub the area to ease the pain. My husband shows some interest in my war wound. He will inspect the area say it is healing well, but not once has he said come here let me rub you down. Why do I feel the outsider? Why do I feel the guilty one? Why am I feeling this way?

Little old me is crying inside because the nightmare she is on won’t bloody end, but am I making continue? You would honestly think he would be by my side right this minute comforting me. The fact he let our daughter go to bed at 4pm to make his life easy while I was at the Big C hospital bloody annoys me. What is it with men? They brag what good fathers they are yet they cannot manage to watch a child without letting it sleep. Yes looking after a child is easy if they sleep everyone can see that, but what happened to adult time dohhh!

When I hear his laughter echoing around the house. It honestly well and truly grates on me. His only interest is in his friends and their well fair, not me. That is when I wish I could swop places even for a day just to teach him some compassion at least.

I was suppose to go to the theatre, but I have a dodgy stomach. Most of the costume work is completed just props to finish.

I received a phone call from Willow foundation they are arranging a full day of activities in London for the 29^th July. When they told me what they could arrange I was in tears. Growing up I would always be prepared to be let down. The only happy memory I have of a birthday is when I was five years old and I am not certain that was mine. After that nothing only constant arguing and tears.

But Willow were going to make sure this birthday was something special. I just hope Steve makes the effort to enjoy the day too after all it is his birthday as well. Why do I feel obligated to make sure everyone else is ok? It is my birthday, but I don’t feel it is, not really. For once I am stuck at a junction where I feel I am being torn apart. Friends have told me to forget Steve move on, but you feel that this is your last chance. Damn this cancer and It’s crazy thinking it brings into your life.

The BC nurse rang me back after I left a message yesterday. My tests were clear of any infection or cancer. She is just as confused as me to why my breast is playing the fool. She instructed me to ask my GP to put me on a course of antibiotics to see if that will help. We discussed various other reasons to what it could be in depth. She said I had to only wait two more months and my next mammogram is due. Although she did not want anything nasty to be found.  It may shed some light onto why my ducts are filled with fluid and the pain I keep getting.

We also spoke about the implant and the fact my body maybe rejecting it. Her reply was that it normally takes five years before that happens and this is a bit soon.

These are the last words I would like to hear right this very minute. If I am rejecting the implant early does that leave me in a situation? I just have to put this to the back of my mind and forget what my BC nurse has just said. The facts are I will not know until August/September anyway and things might of settled down by then.

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Up Yer Viva Ladies!

2^nd June 2010

My three monthly check has arrived not that I hold out much hope of getting questions answered. After asking Steve on various occasions about coming with me he does turn up. Well he would look an utter arse if he did not and I had convinced myself it would mean filling for divorce if he was not there. I need support not constant stress on whether my partner actually gives a damn. One of his excuses was that it may clash with a hair appointment he made, but that was quickly resolved because his hair appointment is tomorrow.

Before seeing my oncologist a women asks me to follow her into a room. She was getting women together to do some research. They needed my permission for tissue samples to be released and a blood sample from myself. They are trying to solve DCIS and look for possible connections. Of course I am not going to refuse the research being done. If it means some poor women is saved from going through what I am going through, I will sign the paperwork she holds. We discuss my cancer and my treatment, but with laughter. She admired the fact I am getting on with my life even though it keeps getting interrupted with appointments. We end our conversation with a signature and a shake of the hand.

As I go back into the waiting room I see my husband as arrived. I take a seat and explain what was discussed in the room. An automated nod was his response to what I was saying and one word “ Good.” The fact I had been nursing this man with an injury he incurred on the football field does infuriate me. The least he could do is show more interest in what I am saying, but nothing new.

I am taken to a room to see another one of my oncologists sidekicks. It is obvious I am no longer important, but I had seen this gentleman on previous appointments recently so he is no stranger.

He asks me a few questions about my treatment. I roll my eyes yet again because it was the same questions he asked last time. His behaviour towards the paperwork in front of him was total confusion. Then I blurt out, “My breast is now producing brownish milk.”

He explains he will check that on examination and continues his questions on tests done recently. He mentions the fact my ducts are swollen as if I am nursing a child.

I look towards the window thinking how many more times do we have to go through this questioning. All I want is the pain to go away and I move on my merry way.

When he eventually examined me if you could call it an examination it was a quick stroke and done. I look at the man thinking what was that? At least my oncologist did a full press and prod not him. Before he made a quick escape I pinched my nipple to show him the discoloured liquid sat in my breast. He got quickly excited and said yes we need a sample of that. On his observation the milk is not brown but green. The sample was put on a slide to be checked. Not only that he orders my bloods to be checked for cancer cells and pro-lactin levels. Yes I say to myself, he has shown some sense of wanting to get to the bottom of this. I am told to take pain killers and the test results will be discussed in a meeting tomorrow. He would also send me a letter with the findings and what further treatment if any is required.

As we leave the room Steve said, “I don’t think you have anything to worry about.”

Yes again he may be right about the whole situation, but I honestly don’t care. My bloody breast hurts and I want it to stop.

Everyone was waiting to find out if anything was being done about my breast.

Lyn had been doing her own research on the internet and had found an article.

I did a google search with - GreenGreen tea discharge from nipples and this is what I could find. You may want to do your own google search.

Dark green nipple discharge - mammary duct ectasia

I am 28 with fibrocystic breasts. For the past week my left breast has oozed dark green fluid but I do not have the usual swelling or pain. Could this be cancer? My doctor has ordered a mammogram.

The discharge may be due to the fibrocystic disease. However, such greenish discharge is also characteristic for an inflammation of the breast ducts called mammary duct ectasia which is not usually related to an underlying cancer nor does it put you at greater risk than the normal for breast cancer. Ectasia is an inflammation of the breast ducts that is not caused by bacteria. While it is usually a benign process, it can sometimes look like a cancer on a mammogram and thus will most likely require a biopsy. Also, surgery may be indicated if there is a very persistent, copious discharge, breast pain, nipple retraction or an underlying mass thought to be an abscess or inflammatory mastitis. It is difficult to treat and excision of the inflamed ducts is only about 85% successful. Whether the mammogram is benign or not, you should see a surgeon experienced in breast disease for further management.

So why on earth can’t my oncologist just say what is above. At least that is an answer and I can switch off. Why are women made out to be nutters? All of my symptoms’ are above and it takes a friend to find this not an oncologist.

I have nearly completed the nineteen waistcoats the theatre wanted. So I start the netted skirts and it did not take long to finish them. I must admit they look fantastic and it is going to a well worth event, but something was niggling me. The birthday girl would be left out and I could not have that. So I call Lyn up and tell her about the predicament. She could see where I was coming from straight away. I tell her I will make a pink/black waistcoat to even things up. Lyn thought it was a excellent idea, but I said it was not from me but the BC ladies.

We spoke to a couple of her friends and the writing on the back was to be, ‘Up Yer Viva 40’.

I managed to get the material for the waist coat and I am well pleased. What people don’t realise about this disease is small things make a heap of difference. The fact that a total stranger without a second thought had gone out of her way to do something. Will bring tears, but at the same time a smile.

It took me six hours to do the waistcoat and I put it on Gladis (My tailors doll.) and the skirt and waistcoat looked fantastic. I knew I had to ring Lyn back up and tell her. She said she would give one of the skirts to the birthday girl. I sent pictures of the outfit to Lyn and one of the birthday girls friends to ok it. They were both really pleased and could not believe what I had done. Well the desired affect was there let’s hope the birthday girl likes it.

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New Friends, Fresh Beginnings.

28^th May 2010

Met up with a BC friend from my FB page today. She was so friendly and warm, full of advice about our conditions. We went into John Lewis and had a coffee then went into a toilet and flashed our war wounds. She was impressed with my implant and the scaring, but concerned that they had not done further investigations into my opposite breast. “Maybe it is glandular tissue, but I must admit it does not feel right.” She presses my breast gently. “but what would I know?” she said.

She encouraged me to feel her breasts and I could feel a big difference to mine and her breasts, but I put it down to size that I can feel every lump and bump in mine. If women had a comparison we both agreed it would help. The fact that she did not mind me seeing her breasts and I mine sealed that friendship which may sound strange.

Every time I speak to a women there is curiosity in their eyes. The fear of the unknown and what they are really searching for confuses them. 

We head For the haberdashery department upstairs to check out some material that my new found friend needs. She is going to a cancer event/ birthday taking place outside of London. We search the department for pink accessories and netting to make a skirt. I am upset that I cannot go because there will be loads of other women with BC. I laugh with her about it and think well at least if I make the skirt one of my master pieces will be going. The one thing BC makes you feel is isolated because life still has to go on with responsibilities. If I was single I could decide who where and why, but I have to think about others now and this is frustrating. Why is it that other women seem to have the support of their husbands, but I feel I don’t?

My BC friend (Lyn) can sense my frustrations that I am hiding behind a smile. Like her she can see I have had a rocky ride.

We decide to head for Carnaby street, for a bite to eat and we can shop for bargains.

On the way there we stop off at Liberties and have a peek inside. The prices of all of their sale items were laughable, but it is the brand name that people like to buy not the price. I am fascinated with the wood work inside and its old fireplaces upstairs. It is like something from a Shakespearian play with its balconies. My new found friend knows I like to shop about for new ideas. She said next time we will visit the Albert and Victoria museum for more ideas on costumes. Part of me feels like crying as I pace the old floor boards of this building and I don’t know why. The fact that someone had taken time out to show me around London and things of interest to me was over whelming.

Finally we sit down at a restaurant in Carnaby street. Not before Lyn had done some bartering with the staff. We had a starter or main meal with a desert and a free drink included for £10 each. “If you don’t ask, you don’t get.” She said in her southern accent.

We sat down inside watching the restaurant opposite having a couple being photographed. I had heard of Carnaby street, in magazines and how the rich and famous come to eat, but I found it strange how little old me had become an observer of the people that grace this place. I and my new found friend chuckled at the fact we had got a bargain on our meal while others were most probably paying twice the price. We spent a hour there eating and chatting about work and the various places she had worked in. It felt like a mother hen guiding her chick through the do’s and don’ts without the hostilities in the voice I face with Steve.

Once we had finished we head for Soho and its various shops with brick-a-brac inviting you in. Lyn tries on various bits and bats and we laugh like two teens, but that is what we needed to do to relax. Then we find a shop that supplies theatres and films with accessories. My eyes nearly pop out my head as I look threw boxes of jewellery.

Lyn had asked for a card off the shop owner and placed it in my bag.

I felt like finally I have found someone I can talk too without feeling out of place. I always referred to me as a jigsaw piece who could not fit anywhere. Now this diseases is opening up ideas and doors I would not of followed. It has made me more determined to follow what I want and not just please others.

We walk back to Oxford circus and decided to purchase the bits we had picked in John Lewis, but before that Lyn said we could pop into Harley Street, and visit the clinic she had her treatment at. As we walk up the street I find I feel out of sorts even intimidated. We all know about Harley Street, and its history for treating people. My friend had explained she had private insurance with the company she worked for and this is where she ended up having her treatment. I thought the Big C was a good hospital, but you can understand why people want private treatment. The building was warm and the people were friendly inside. Not at all snobbish or intimidating like I imagined it would be. They greet you with a smile and a cup of coffee or tea. My friend introduces me to the MacMillan nurse who helped her. We sat at a table and chatted about my BC and where I was treated. She handed me various literature which my BC nurse had not taken the time to hand to me. It was all friendly chit chat and totally relaxed. I can honestly understand why women do go private for their treatment. At least Lyn can drop in without an appointment and talk to her MacMillan nurse.

Once Lyn had finished her business there we went and collected the bits she needed from John Lewis. I was so grateful for our meeting and deep down she knew it. The fact is I do feel isolated more so than ever before in my life. I was always a get up and go type of girl. Dealing with situations on my own not trusting anyone due to people letting me down in the past. I was content to be on my own, but was I really just kidding myself?

We left each other at Marble arch tube station to find our way back to the hum drum of life. Who knows how this new found friendship will develop, but I have a task to complete and that is a pink netted skirt.

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I'm On A Positive Run

8^th May 2010

I Fell out with my eldest daughter today over her great aunty. I honestly do not know what is going on in her head. Her point that she put firmly across was, just because they say her great aunty won’t get it does not rule it out. Why be negative? Why not say that is good news?

My reply is how long is a piece of string?

This whole genetic testing is causing nothing but stress. The family cannot respect my decision at all. The consultant and the BC nurse say there is nothing to worry about. The consultant dealing with her great aunty said she is low risk. So their opinions match and this is what I explained, but no. This she thinks I am being selfish about and stubborn. I do not want the genetic test because of insurance and my kids future. Why is it everyone else around me including women who have this diseases agree. My situation is low risk, but high in recurrance due to results.

I received my histopathology report from my mastectomy in October 2009. The notes were to be passed onto my aunty, but she no longer needs them.

Specimen Type:

A: LEFT MASTECTOMY

Clinical Details:

Widespread high grade DCIS left breast. Sentinel node negative.

Macroscopic Description:

LEFT MASTECTOMY: Mastectomy specimen, weighing 170g and measuring 19 x 15 x 3cm, with attached piece of skin, measuring 7.5 x 4 cm and long stitch – lateral and short superior. Posterior surface painted black. The specimen surfaces are intact anteriorly and posteriorly, suggesting that the tumour is completely excised. Sliced into 16 slices from medial to lateral. Cut surface shows an ill-defined, hard, pinkish-grey tumour, starting from behind the nipple and extending for 6.5cm laterally. The rest of the breast shows nodular areas.

Microscopic Description:

Sections show foci of high grade ductal carcinoma in situ, some with comedo necrosis and microcalcification. The tumour starts just medial to the nipple (A20, 21) and extends laterally for 65mm as measured grossly (A22, 49). Some of the main ducts behind the nipple are involved (A22,23,24) and there is overlying Paget’s disease of the nipple with ulceration (A25, A40). The lesion is 0.2mm from deep excursion margin (A25, A40). Foci of possible micro-invasion are present (A30, 32). The breast also shows widespread foci of fibrocystic change. No lymph nodes are identified in specimen.

Final Diagnosis:

LEFT SIMPLE MASTECTOMY:
                       HIGH GRADE DUCTAL CARCINOMA IN SITU< WITH FOCI OF                                                      

                       POSSIBLE MICROINVASION; 65MM; 0.2MM FROM DEEP 

                       EXCISION MARGIN + PAGET’S DISEASES OF THE NIPPLE

Interpretation

Immunoperoxidase stains show that the tumour is ER and PrG negative (0) and HER2 strongly positive (+++)

Results- Comments

Breast DCIS with possible micro invasion: ER-

                                                                     PgR -   

                                                                     HER2 +++

Now do I understand what is written above? Yes and no.

I’ve been advised to chat to the BC nurse by a friend, but the job is done. Do I really need to drag it up any further?

The good news I am not triple negative. The bad news is there was a tumour.

People are showing concern that I am not on any medication because of the HER2 result. They think I should ask why this is? A couple of the women I have been speaking too are on medication for being strongly positive and are concerned.

I am starting to understand more about the type of cancer I had. That the Pagets’ is a rare condition, but I don’t understand the panic in their voices. No-one I speak to has been affected by DCIS and Pagets’ or know anyone. So I have nothing to compare my condition too. Maybe I should go to the Maggie clinic and speak to them. It is a choice and it will remain a private conversation and I will not feel judged.

A women on a forum asked why I did not put Pagets’ first rather than DCIS when writing. I honestly could not answer after all cancer is cancer.

I must admit they have got me thinking about it.

I have found a new forum site which I am comfortable with. They are in control of personal details and the women joining. So you have no cranks coming on upsetting people.

http://www.bcpals.org.uk

There is also a site that organises day trips for people affected by cancer. You can apply only once and it is for 16 – 40 years old.

It is a sad story how this organisation was put together, but I shall let you read it. The ladies and myself said it brought tears to our eyes.

http://www.willowfoundation.org.uk

I have arranged to meet up with a women from the forums I go on. She lives locally so we are meeting in central London and having lunch.  

I have become a very busy lady of late. Throwing myself into designing and making various bits for the theatre has taken my mind off my other breast even though it throbs. I am now displaying my work on face book so people can see what I'm up too. The interest it has generated and comments I have received have been really a boost. The BC ladies are amazed at my talents. So when the director rings me to ask how to imitate waistcoats on black t-shirts. It made sense to me to make and design actual waistcoats from scratch. With a subtle hint at the fact the theatre should start paying me. I know I will not make the money on making theses costumes because of the amount of time I have put into them and the lack of qualifications in this area, but a good will gesture is better than nothing. I just have to wait and see if the director sees it that way.

From putting my pieces up on face book someone requested a dress to be made. I said I would love too, but I am busy right the minute with the three productions going on stage next year. One choreographer friend has requested costumes also.

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I Ain't Disfigured!

22^nd April 2010

My two week break from London ended and I landed on my arse with a bang.

People have a way of saying things that are not required. You find yourself being pleasant when really you want to shout ‘What the F**k?’

A women approached me and said, “Don’t I know you?”

I meet and greet people all over the place. So I gave her a quick explanation of how she may know me. “No” she said. “I know how I know you. You have breast cancer.” She replied “How are you doing? You hear about these operations leaving women disfigured.”

I look at the women thinking hell no!

The truth is the last thing a women needs to hear is the word disfigured. Women are so focused on body image that when you are told your breast will be removed the images you have in your mind are warped.

You are trying to feel optimistic and fortunate that you have beaten this diseases. Yet like every women who has had a mastectomy. You have the reminder first thing on a morning staring right back at you. Your emotions are up and down let alone the anger.

So please don’t use the word disfigured or twist your face at my unfortunate bad luck.

Only the other day I was out and about with my husband. We went to a barbeque and I noticed the man’s eyes were drawn to my breasts each time as I spoke. I felt like shouting “Hey my face is here! Not on my chest.” Now if I had Pamela Anderson boobs I would understand him looking at my chest, but his staring was pure ignorance. They would not dare ask Steve so how does it look? 

It is like being a freak in a circus with people pointing. I am proud, but I feel I should feel ashamed. Why is this? I over explain myself wishing I was home and not in their company.

Maybe I am being over sensitive, but I am annoyed. I find my temper is getting short and I have little patients to be a socialite.

I feel like stripping off and saying, “Yes this is the end result.” But my job description limits me to what I am allowed to do.

I have still yet to get my nipple done and I feel I am on my lowest ebb.  

I received a letter from my aunty requesting a few details about my breast cancer. Apparently for my aunty to get checked they need more information. It is the same information my younger sister requested, but she wanted the genetic testing done.

I’ve just finished a one hour phone call with my aunty. She explained she did not want to go through checks straight away. Explaining how the mind can bring up all sorts of aches and pains.  

I explained to her that I will get a letter from the breast clinic with all the details. It is better if it is from them rather than me playing guess work. The only problem is if my aunty has breast cancer then there could be a direct connection. Then my younger sister and older need to get tested urgently, but she did reassure me that she thinks it is a false alarm and it is better to end speculation altogether. Yet I still have to ask why she has to go through all this trouble. If she has doubts why can’t she just have a mammogram? The NHS makes things so difficult for women and families. You do not want to create panic, but you have no choice because you need information. My aunty was apologetic for imposing her request on me, but my reply was direct it gives answers so no apology is required.

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More Bad News

5^th April 2010

The smell of sea air brings back a flood of memories. Redcar is not much different to Scarborough my home town. It has a promenade and arcades like Scarborough. I watch the tide roll in and out on the beach with the cold sea breeze. The excitement running through Sophia is plain to see as she dashes back and forth collecting pebbles in a bucket. Once upon a time I had that innocence and excitement for new experiences. Now I feel deflated and numb with no real path. They say get on with your life now your treatment is done. It is easy to say than do in this frame of mind.

All my mum wanted was to retire and go on holidays. To live comfortably, but mother nature has other ideas. It is strange the very two people that argued over money cannot enjoy the proceeds. My dad has passed away now, but now my mum has been rushed into hospital. The explanation into her condition is her spinal cord at the top of her neck has pressure building up on it. So it means an urgent operation is needed to correct it.

The doctors said that there is a possibility that the injury mum received from the accident in 2006. Could have triggered the slow pressure build up on the top her spine. She already had problems with her bones because of an hereditary condition. So the accident could of added to the problem. So it is not a real answer, but a possibility to her problem. 

What else can mother nature through our way?

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Dangers Of Forums!

29^th March 2010

I went onto my FB account to see Steve had put me as his wife. I sent him the request ages ago. Men don’t seem to understand small things mean the world with this diseases. Maybe this is his way of reassuring me.

My treatment is not yet finished and until it has, my life is in turmoil. My confidence has been given the biggest knock ever.

Last night I returned to the Macmillan chat room out of curiosity. Some of the old names are still there because of their treatment.

I had not taken on board that people will go on there and make up a profile for attention. We were discussing how they will make up a story like:

My boyfriend has develop prostate cancer and only has months to live.

So in revolt we all typed up the hospital we are attending and consultant treating. Those that were not genuine soon vanished. So the warning is there when going on chat rooms. The attention seekers are out in force for whatever their reasons, all be careful.

Why Macmillan don’t have some sort of vetting system in place is something I question. I have noted it is not just one cancer web forum but all have the same problem. These people make a nuisance of themselves leaving people feeling vulnerable.

One women as we were discussing this problem in open said “I wanted information on my husband’s condition, but I think I have changed my mind.” She left the chat room with a polite thank you for your time.

Yes there are dangers on any forum or chat room with invasion of personal information. But these people are after attention and someone to talk too. Which I find very upsetting for those who are genuine.

Letter arrived from Plastic surgeon appointment I had on the 1^st March. They certainly do have plans for my left breast.

Dear Ms S

Re: Ms Sarah Mendoza – DOB **/**/**** NHS Number: *** *** ****

       **, M*** **** Road, Northolt, Middlx *** ****

I reviewed this lady in Mr H clinic today some four months following left mastectomy with reconstruction using LD flap and implant.

I understand that she awaits further investigation to a lump in her right breast, which she tells me she is receiving under your care. However, she was a little unclear about the current management plan. I would be grateful if you could let us know your thoughts, as this may have a bearing on our plans for her left breast.

Surgically she had no problems. All her wounds have settled down and healed well. In terms of shape and volume, she has a reasonable result.

I have therefore given her an appointment for three months’ time to be reviewed in this clinic and look forward to hearing from you in the meantime.

With kind regards.

Mr T

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