Defining a Breast Cancer Diagnosis

It is ten days into my first session of chemotherapy and my mouth is feeling like a rough badgers arse. I have a sore on the corner of my lip developing. I've had my bowel movements play up for seven days until senokot came to my rescue. Thrush oh, yeah bloody thrush jeezzzz! I hate thrush. Plus I can’t ignore a tender itchy head also. To sum it up the side effects of chemo are slowly creeping into my life. Yet I still maintain a smile!!!

On speaking with my BC nurse she says, so Sarah when did your treatment start. My reply exactly three years ago today. She said, Oh no back then that was not a true cancer Sarah. No your treatment now? Now I am thinking Mmm! hang on if it weren’t a true cancer what does recurrence actually mean.

Oxford Dictionary time: happened again or repeatedly..

I am such a sarcastic clever arse when people treat me like an idiot. Maybe I should hand the dictionary to my BC nurse next time.. mmm now would I do that?...
Of course I would.. I like to see faces to upturn with frustration...

This is why being a part of the breast cancer lottery within a world of jargon creates anger. Anger because how can you say the start of my treatment actually has no part in a recurrence of stage 3 cancer. I bite my lip with a smile and go up stairs to add a few pounds to the Macmillan coffee morning. On returning home I look at my friend and say, I am just a damned Guinea Pig with a large price tag mounting. If I had lived in America no insurance company would insure me. She tilted her head and agreed because she is from America. We are so lucky in the sense we have the NHS in the UK, but sometimes when I check past blog postings even I have doubts. I know it isn’t the NHS that is the problem, but the constant pressure for cut backs that lead to failings in treatment. My blog is three years of do they? Should they? Have they? Could they be messing up?

I was told when moving to London by nurses who had moved from London. Sarah whatever you do don’t get pregnant whilst you live in London and if you do be on the ball or get back up north. Now for two separate nurses to say that on two separate occasions away from each other says a lot about the NHS system in London.

My BC nurse does have a habit of putting her foot in her mouth at times.
By her saying, but your first lot of treatment did not involve cancer would make anybodies eyebrows raise. The evidence and test results with the word recurrence tell a different story. Were they trying to make savings? Could more of been done to prevent the recurrence? Well plenty people did say why weren’t you on Herceptin on such a strong HER2 result? Even if it was just pre-cancer surely that warranted you having that drug as a precaution measure. The fact Herceptin is advised on a strong pre-cancer diagnosis and has advantages on preventing a recurrence leaves question marks on my treatment I don’t doubt, but while a patient is seen as a mounting pound sign. We are indeed in a dark place.....

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Chemotherapy & Meeting Kylie

I cannot count how many people have approached me and said, but Sarah you should be taking it easy. With having an eight year old daughter those words are not easy to follow. The usual chores mixed in with my usual routines are what makes me tick. Today I spent some time chatting to one mum at school about my treatment. The staff at my daughters school were listening in with interest because I’m so to the point about cancer. She was confused like many others on how my breast cancer could still return after having a mastectomy.

I sat her down and said understand first on having my mastectomy I received no chemotherapy or meds after. She then tilted her head with the instant WHY? I said my cancer was pre-cancer in situ, but high grade. They were hoping that they had cleared all the margins, but in 5% they can miss a bit. With DCIS they do not treat you with chemotherapy unless it has developed into lesions. My Paget’s had developed into a lesion, but again was pre-cancer.  To sum it up my team and I had thought we had knocked it on its head. Then she said, but you have a recurrence... Yes that is because the chance that a cell may remain whilst slim is a possibility, so if I sum it up it is the same cancer in the same place which now needs aggressive treatment i.e. chemotherapy. Then she said but don’t you feel frustrated because on seeing you each day you would not even believe you are going through what you are going through? My reply, But life is frustrating if we did not have glitches or a point where we have to put up a fight then what? I continued the conversation with other mothers and teachers listening on. And all have found my matter of a fact approach fascinating. Whether I like it or not I’m in this for the long run. Just like I have been in it for the long run with my diabetes which to be honest is what I am concerned about.  Diabetes is the dark horse which is unpredictable at the best of times.

The side effects of chemotherapy have been minimal so far, so in between tablets and snacks to ease the nausea I’m ok. The only issue I had with my initial infusion was a reaction after having one of the drugs. I had burning in my sinuses and head followed to a blanket of fog going across my sight and headache. They said on the next infusion they will take their time on giving me that particular drug. Before that there was the usual vein issue which is the norm with me. Medical staff on seeing my fat juicy veins instantly believe this will be easy NOTTTT!  Took several attempts to get the canular in and a tube of warm water. The chemo nurse also said because my veins are hyper sensitive to the drugs they will be putting in a request for a tube to keep the veins open. This mean it will need flushing once a week if fitted.

On the whole I’m fairing well, but it is still early and I know my symptoms are going to increase with time. Rationality tells me do what you got to do with moderation, but knowing me I will be fighting it. I won’t be doing anymore premieres with Sophia, but that doesn’t mean I won’t be planning ahead with her for the near future. It was lovely meeting Kylie Minogue as the final one for now though. Although Sophia could not attend because of school and my appointment at the big CC hospital for my assessment she was pleased to add her autograph to her collection. Kylie was really cute, sweet and dinky in her long black sequined gown.

Film footage and pictures on Sophia's blog.... link on the right hand corner..

 

 

Spot me in the background with my new hair mmmmm!! lol

 

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The Dreaded Confirmation Letter

The morning clunk from the . confirming my up coming treatment...

Dear Miss S,

Re: Mendoza, Sarah. DoB 29/07/1970 Sex F NHS **********

       18 M*** F*** Road, ******** Middlesex *** ***

Diagnosis:

1.         Left mastectomy and LD reconstruction October 2009 for wide spread high grade DCIS with micro invasion.

2.       3mm recurrence in reconstructed left breast with C5 axillary node August 2012 (Grade 3, ER 6/8, PR -, Her2 +++)

Many thanks for asking me to see this 42 year old youth worker whose history is well known to both of us. She underwent left mastectomy and LD reconstruction in October 2009 for fairly extensive high grade DCIS of the left breast with small areas of micro invasion. She remained well for 3 years thereafter but noticed a small nodularity in the left reconstructed breast which was subsequently biopsied confirming a recurrence of her disease. An excision of the area has confirmed a 3mm grade 3 invasive ductal carcinoma with excision complete but the margins being positive but HER2 staining was strongly positive. Despite there being no lymphovascular invasion a separate left axillary node also noted C5.

Mrs Mendoza who came with her husband and daughter is a type II diabetic although only diet controlled since the age of 19. She has two daughters aged 22 and 8 and in addition has a loop diathermy for CIN of the cervix in 1996.

Clinically her wounds have healed well and she will receive adjuvant FEC 75 chemotherapy which will commence on the 18^th September in view of the Grade 3 nature of her recurrence and her HER2 positivity

She will receive a total of 6 cycles of chemotherapy followed by adjuvant radiotherapy to the reconstructed left breast and thereafter a year of adjuvant herceptin coupled with Tamoxifen which she will take for a total of 5 years. Her longer-term outlook is excellent but I do note that she is peri menopausal with her mother having reached the menopause at age of 36. I have warned her that it is very likely that her periods will cease with the chemotherapy.

With many kind regards

Yours sincerely

Mr L

All I’m going to say is roll on tomorrow morning J

 

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Time to Kick Cancer Arse !!!!

My way of dealing with the ups and downs of prods and pokes is to go in search of a distraction. These small projects create a smile because I know people get enjoyment out of them. The past two weeks have flown by because of a child’s birthday party. To distract me from my upcoming treatment I built a princess tower or as I call it, my tower of strength.

 

Not only that I built a piñata and baked forty-eight cupcakes and designed the sleeves for them.

 

Plus ran up six table clothes to match the theme of the party.

Note to oneself do measure the drop from ceiling to floor next time Sarah!!!!

 

My friend said but Sarah your doing too much. My reply was, when going through the mastectomy in 2009 I did one hundred or more costumes for three productions and a ships wheel. Plus various other props just to get my mind round what I was facing. They helped me to stay focused on what was truly important and that is life itself not the doom under-note that cancer creates. We all fear, fear itself to stop doing what gives us pleasure is to lock yourself within a mental prison which could lead to a downward spiral. When I receive my chemotherapy I cannot say how I will fair, but I will stick to the same routines I have maintained from the very beginning. This is my way of dealing with the deck of cards I have been dealt. I am not a fool of course I will listen to my body, but I will remain Sarah. My image may change, but not my outlook on life... Now let’s kick cancers arse!!!

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Hair Today, Gone Tomorrow...

Yesterday I spent the afternoon at Bloomsbury with Sophia. Having my hair cut short wasn’t too bad, it was quite liberating. The fact the chemotherapy had not taken my hair meant I was taking some control back on how I was going to face my treatment. Family, friends, parents and teachers all said, Hey you suit short hair. The fact that Sophia was there helping the hairdresser to divide my hair in ponytails made it more fun. Personally I think I made the right decision and for once a women has got paid to get her hair cut. How strange!!!!.......

 

 

Bloomsbury paid me £30 pounds for my hair. I could of negiotated, but like I said to friends to be paid anything was better than watching it drop out. And the staff at Bloomsbury were lovely with encouraging Sophia to put my hair in pigtails. Sophia even got the dust pan and brush and started sweeping up the bits of hair whiles they were restyling. 

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Patient Advocates - Where Do We Fit?

A handful of us patient advocates from Northeast Voices for Error Reduction are just back from this year’s Maine Patient Safety Academy. It was a day-long series of seminars and presentations. Topics ranged from engaging physicians in patient safety, to preventing patient falls, to the waning effectiveness of antibiotics. About 150 medical folks attended from all over the state. There were nine of us patient advocates.

Christian John Lillis of the Peggy Lillis Memorial Foundation
(PeggyFoundation.org) speaks about losing his 56-year-old mother to
C-diff infection 6 days after she took antibiotics for a dental visit

We were invited after one of us, retired RN Kathy Day from Bangor (who lost her father to a MRSA infection) asked organizers if we could take part. She'd attended last year and felt we could learn from each other. Consumers Union (a branch of Consumer Reports) Safe Patient Project supplied travel funds. We all re-arranged our schedules and drove hundreds of miles to Portland, from as far away as Buffalo. (Yes, we're that eager to help drive the conversation about involving patients in their care: “Nothing about us, without us”.)

The invitation did not necessarily come with the certainty that everyone (or even the majority) of attendees from the medical profession would be enlightened about where we patient advocates fit in, what we can offer, or how to approach us. Like newly-made acquaintances invited to a longstanding family reunion, there was, if not wariness, a certain awkwardness, seen when speakers would preface remarks by asking for a show of hands who was in the audience. “Physicians? RNs? PTs? OTs? Social Workers?” More than once, someone in our group piped in (when it was apparent they wouldn’t ask), “Patient Advocates”? (Since this was our first time attending, I'm thinking this was understandable.)

I found the stage play at the end of the program, with actors interacting as various members of the medical team recreating actual events, the most enlightening presentation of all. This is where the true degree of dysfunction and poor communication within medical “teams” was brought to light. Keynote speaker Suzanne Gordon, author of First Do Less Harmproduced this eye-opening look at how staff who now operate in parallel but separate silos need better “team intelligence” – training to better communicate, trust, and support each other (what a concept!).  Though seeing the full extent of the problem was disturbing, I always feel it’s better to know the enemy. The “enemy” is self-centeredness, poor communication, lack of mutual respect, and not believing others can learn or do better. This is what sabotages the best efforts of well-meaning clinicians and puts patients at risk. This is what we all have to combat every day…as a team. And it’s the patient advocate’s challenge to demonstrate that without incorporating the patient’s point of view, this team can never be complete.

The patient safety movement is like any wave of social change…from civil rights, to gender equality. It requires a change in an entrenched mindset and an acceptance of a group that had historically been seen as “other” to be thought of as "equal" (not in terms of training or role, but in terms of respect) within the culture. This movement needs both its noise-makers to push the envelope, and its conciliators who respond with exceeding patience in the face of comments made in ignorance (which, by definition, is uninformed). Emotions fuel responses. How can they not? We have lost people we love to medical harm. We are impatient. Others die every day, even as well-meaning people at summits and conferences talk about why, and how to fix it.

But let’s look at the positives from this event: we patient advocates were invited. We got to present a panel discussion. We were given a table in the lobby to display our books and projects. (Yes, literally, a seat at the table).

In the world of provider and patient/family engagement, the relationship between us is still in its nascent stages. We patient advocates, like medical professionals, have different life experiences, approaches and temperaments, and unique gifts to offer...but common goals. We need to get to know each other. Sometimes our interactions may be tentative, or clumsy, or less than they could be.  But each overture, each interaction offers us an opportunity to build trust, respect and relationships. 

Just like that newbie at the family reunion. If we work at it, maybe some day we won't be newbies any more.

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Another puncture to add to the rest :-)

Everyone has their own way of dealing with cancer. The ride you scarily jump on board leaves so many different scars both physically and mentally. I now have yet another puncture to add to the rest just to get this disease placed back in its box, but how many more?

I’ve become very robotic in the way I jump on that surgical bed to face yet more pain. My team are always apologetic beforehand, but in the next breath they admire my calm no tear approach. The whole procedure of having a marker put in place took 10 minutes. They numbed the area with a local followed by a quick nick with a scalpel. They insert what looks like a large hollowed out knitting needle to where the lesion sits between MX Recon and peck muscle within the armpit. It was a difficult area to reach because of vital blood vessels supplying recon, but with a little patience the marker was soon in place.

On returning home I received a phone call from the hairdresser who I had booked my appointment with to have my hair harvested. Bloomsbury told me that they would have to reschedule my appointment. Now I had already spoken with my BC nurse about harvesting and had promised to get the info for her. I thought by using me and my situation we could go undercover and check the place out, but that plan had changed, so has a last ditch attempt I explained my predicament and how I was researching there establishment for other BC ladies going through Chemo. When I had explained all they said that my appointment will remain. The only issue with having my hair cut short is it hasn’t been this short since I was fourteen...

 

My friend said on seeing this image, ‘Sarah you were one ugly duckling, but you turned into a beautiful swan.’

 

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It’s All About Moderation and Listening To Ones Body...

Scouring the internet is one way of making sense of the rollercoaster ride that is about to begin. Certain fragments of the conversation that took place stand out. Like me asking what type of chemotherapy will I be on? Answer: FEC followed by radiotherapy, Herceptin and Tamoxifen. What do I know of my results? Plenty in fact too much. What did the oncology team tell me of my results prior to arriving in handsome Mr L's office? Oh gosh laid on that bed before the core biopsy was like being invisible because the debates were quite in depth. Has it been explained I will lose my hair? What am I a frigging idiot. Part of me at that point wanted to say yes I am female, but I’m from Yorkshire. Vanity is not my priority, but the little girl who is sat beside me piped up, but mummy you can have a funny hair (meaning wig). I had already explained to the team I was having issues with Sophia and the whole cancer thing, so I said look lets move from that area of the conversation and he agreed. (Sophia's concerns were I would be made fun of if I lost my hair by her school friends.) As I looked at handsome Mr L direct in the eyes and say yes but, my husband arrives. And I continue what I was about to say, there is nothing you have told me that has not already been mentioned several times. Then to his surprise I say. I know through having a copy of the medical biopsies from my mastectomy breast in 2009 that the cancer before was HER2 +++. Handsome Mr L turns to my notes and tilts his head, and replies yes, but this time it has also developed into oestrogen positive too. This of course was something new along with being told there were three areas not two on the MX breast. Handsome Mr L said my case was both puzzling and complicated. Puzzling because in their eye to have this sort of recurrence is rare, but complicated because of the change in the cancer and HER2. Mr L was surprized at how I had discovered the cancer, not the first time this has been mentioned, but the fact it was so small.
He pulled out a ruler to show me a comparison in size, but Doh I do costumes and design props. I actually have a ruler in my beside table and i use both inches and centimeters. He continued we are hoping to get you a further ten years if not more. My reply was hey I am watching women with three times reoccurring cancer and if they can fight it so can I.

The realism of a cancer diagnosis is you are a guinea pig in all aspects of treatment. Like no two births are the same, no two people are the same with their particular cancer. To compare your diagnosis to another is naive, but it shows there is hope out there.

On leaving the office for the third time the BC nurse that is not my normal BC nurse makes excuses up for her not being able to chat with me. My thoughts were hey don't worry about me I've got a forum of ladies that can fill me in, but I actually replied hey I already know, you go about your business and deal with those that need you. Yes there was sarcasm in my tone.... Yes she may of been busy and over stretched with time, but I am good at blagging my way through lifes glitches... and so can many other women.... As a friend said we know when someone actually does not want to listen, so some women who are sensitive to such responses. Do have a tenderacy to dismiss an individual rather then beg for attention.

On returning home I had several visits and phone calls to deal with. Each were trying to reassure me in their own way. The fact is it is me who has to fight this disease or at least keep it at bay. They are observers  which cancer will leave a long lasting imprint on, so I have not time for pity or doubt. I have no time for emotional tears or negative imbalance in my life. The first thing a friend wanted to know Sarah are you still going to the premiere tomorrow. She knew me too well of course the answer is yes and every premiere thereafter. But you will be too sick.. Oh no I said don’t be daft.. she knew just because I have cancer doesn’t mean I’ll stop my exploits. After all in my world it is all about routine and not four walls.

1.     Tomorrow Anna Karenina World Premiere attending Jude Law, Aaron Taylor-Johnson, Keira Knightley, and Matthew Macfadyen confirmed to walk the red carpet.

2.    Wednesday music video to be filmed and I assist as well as appear in.

3.    In between I am designing props and helping to organise a child’s birthday party. Damn fairy castle piñata is looking good..... or at least the child is excited about it from what she has seen and helped me to cover with tissue paper..

To sum it up..  cancer has not beaten me yet... It’s all about moderation and listening to ones body...

 

not complete, but getting there...

 

 

 

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