Tuesday, 27 November 2012

Another Cancer Viral Video.. or Not!

The last four days have been an emotional roller coaster for me. The side effects from the chemotherapy have left me rather drained, but the outburst of comments from doing the video have kept me smiling. I have always stood by the fact music can lead to people looking at their personal issues with a new found prospective. The shadow that clouded their every move can receive a sharp boot with a defiant smile as its replacement.

‘Our interpretation within its lyrics as helped people view the song from a different angle. Before the video had been done the song was like any other song easily forgotten.’

That was the words from a complete stranger who had said they thought ‘Try’ from P!nks new album had more of a link to the journey they was on until now. Apparently from now on when hearing that song it will be heard in a whole new light. Well to me if it raises awareness to the internal struggle that breast cancer or any seriously ill parent faces when facing their child’s questions then Hooorahhhh!

My reasoning for doing this video is easily explained. I wanted to highlight the day in day out torment parents are facing with breast cancer. While it is seen as my young daughter waving that pink ribbon high with a smile. That is what you want to see, what society wants a cancer family to look like. Please everyone note that I am in a flimsy white gown with zero protection from the cold. That coldness and isolation is something never expressed on a viral cancer video. Lukas had gone in hunt of a location away from people so it would show the isolation. Cancer patients and their family/friends are supposed to be full of smiles and fists in the air, but that is not the reality I walk. Our children, family and friends know the truth. They hear us crying at night, they experience the anger and frustration; they go to their beds with the same isolation of the unknown. And it is they that face the aftermath of our journey.

To me the system that should be supporting us is sadly failing on more than one level. Personally I have not even received a phone call to ask how my treatment is going from my breast cancer team. The only contact I now have is with the Chemotherapy unit.
I have given up seeing anyone from the big E hospital because as long as they have my bloods what is the point. 
My young daughter is receiving support from her school, but I had to chase that support just in case issues came about. The words of reassurance given at the beginning by my team never came into play. I am just another number that sadly could fade away if I was silenced. Enhance our involvement in this video.... 


See, here's the bloody, bloody truth 
You will hurt and you will lose
I've got scars you won't believe
Wear them proudly on my sleeve
I hope you'll have the sense to know
That sadness comes and sadness goes
Love so hard and play life loud
It's the only thing to give a damn about

Personally I hope P!nk can back what we have done because Sophia is a fan of her music…. And these words are motivation to keep looking ahead..

Friday, 23 November 2012

Sharing Breast Cancer Awareness With a Difference

A friend of mine approached me two weeks ago. He said Sarah I have this song and I want you to hear it. Well I instantly burst into tears because the lyrics were so moving. He asked if I would like to do a video with Sophia using this music. Now Lukas my friend wanted this video to be about awareness not pity. And he did not want people getting upset just in case he got it wrong.
To me the words explained the journey of not just cancer, but life itself. As a parents we spend most our time protecting our children. teaching them the skills to move on, but sometimes those very children become the carers without even realizing it. The video is about a mum wanting her child not to worry about illness, but the hidden reality is we just don't know what is waiting around that corner. 

On the 18th November Lukas arranged a make-up artist Cee-Cee who filled my crevices. Then we went in search of a location the first one was water logged to poor Lukas annoyance because he did not want me out in the cold too long. The next location for the shoot had too many houses in the background and we wanted it to be PVT. Finally after 30 minutes of running round we settled on a location that Lukas had used before. I felt like a total idiot walking down in a white evening gown at 12 in the afternoon but hey…

The ground was still sodden and the white gown had a ring of mud round the base within 1 hour of filming. All was required from me was to lip sync the words. I had two weeks to learn them because of the timing with Chemotherapy. This was my decision because I did not know how my next cycle would go and the weather was changing fast. I and Sophia are not very tuneful in fact I’m a cat so I was happy to lip sync.
Three hours felt like five minutes it passed so fast, but Sophia had a marvellous time with the pink ribbon wand. Ricky another friend who was there kept crying because he could relate to the treatment I was on. The words say it all for me…
Ricky and Cee-Cee thank you for giving your time on such a special project xxx
Lukas I love ya! Because you are a very talented young man with a dream and the comments left on this video and on my FB page say it all xxx

MUsic from P!nks latest album an un-offical music video with credit to P!nk

Monday, 19 November 2012

My Body, My Voice And 100% My Damn Choice!

Last week I read a posting on my FB page from Nancy Point’s blog. The posting was all about the decision of wearing or covering our heads or not during chemotherapy treatment.
I respect why other women feel the need to go down the route of wearing wigs, but people should also respect that some of us are not interested in wigs. Personally I just don’t feel wearing a wig will help me in any way. In fact I know the wig would end up in the bin. Just like the mastectomy bra's and swimming costumes that I found old fashioned in design.
This particular conversation I have noticed keeps cropping up. And some people I know feel by leaving my head bare I am drawing attention to something that should remain private. That the pity me badge was firmly fixed to my chest and it makes people uncomfortable, but what about my comfort? And there reply, but it means no-one knows you have cancer. Apparently by leaving my head bare people will gawp and whisper, but that just proves what sad lives they lead if they even have time to talk nonsense... 

Is the embarrassment so hard to bare?

The breast cancer lottery is not just about cancer, but how those receiving treatment for cancer look for reassurance or acceptance within their peer groups. We are vulnerable already, so the slightest comment of disapproval can lead to a door firmly slammed shut.  

If I was bald with tattoos and a nose piecing no-one would give a rat’s arse, but because I am seen as a so called “NORMAL” individual I should behave accordingly to the image they would like to be in contact with. Yes I cover my head when approaching Sophia’s school because I do not want her to be bullied, but I personally feel I am being bullied.

For crying out loud it is my body, my life, my choice on how I deal with the side effects of chemotherapy. I find my journey and how others “THINK” I should deal with this temporary side effect quite selfish. The pressure applied to fit into a specific jigsaw when I know I don’t fit is tremendous, but I will not be swayed. In other words you know where the door is…..

My bald head is not important to me getting past the treatment is. People should stop looking at the side effects of the treatment as something to blush and feel shame about, but more being apart of my damn survival. 
The hair loss is temporary, the scars I carry are not. It is all about choice not pity to why I do what I do. I personally do not hide the reality of cancer because why should I? It is there and I don’t have an issue with it.

My body, my voice and 100% my damn choice.

To me by pressuring a person into believing covering is the best option is a pathetic excuse due to society’s visual pressures of acceptance. I was always a defiant rebel who chose the easy route when it came to appearance. Facing the mirror each morning struggling and tormenting myself with a mop of fake hair is not important to me. When receiving treatment for cancer I should not feel pressure or shame, but support on this very rigorous journey. We live in a democracy and we should respect personal choices and stop bullying!

Now on to my 4th cycle of chemo… without hair!

Thursday, 15 November 2012

Cancer, But So What!

My usual two miles to school and back is always an eye opener especially when people take their time to walk and talk with me.
As I walk with another mum home we talk about my high spirited attitude and how she found it uplifting because I am always laughing. Apparently she admired the fact even though I’ve had issues I still managed to joke about my treatment. My reply was because people make decisions not cancer. Cancer hates laughter or so I’ve been told… raising my now thinning eyebrows…
I have learnt to avoid the tears and feeling like life is unfair I must remain realistic in some way. Yes tears, anger and fall outs with this cancer treatment come with accepting and understanding the conveyor belt I now share and I don’t shy away from showing it. It is not everyone else’s cup of tea because tolerances differ, but with me I will not let my treatment drag me down that deep dark silent rabbit hole of despair. Whereas others do need that extra support to vent, I have decided I don’t. I have been there and done that and it did not help to solve my situation… so I laugh and joke it is my way of dealing or coping… it’s not something to be admired... it’s who I am…
I don’t need my husband to accept my scars or friends because I know their opinions mean nothing. Friends come and go, and so can my husband if he feels I’m not good enough I have plenty replacements in the side lines. I don’t shy away from speaking my mind or expressing my opinions when others would sooner I remain silent, but that is who I am. If I did things any differently both my treatment and my personality would implode then I would not be laughing would I.
I explain to her how I have a strong image of me sat in a chair grumbling wishing I had done that, and the fear of knowing the only reason I didn’t was because I was busy trying to keep others happy. That story is something I dread because if you are not careful it can so easily happen. I don’t care about what idiots think because my priority is to my young daughter and myself. I cannot control cancer, but I can control the time I have and being a miserable buggar is not me.
I personally see everything very simplistically which means I don’t waste my time on the word NO! I am a very kind nature stubborn self-opinionated person with personal goals set out and these goals are not welcomed by everyone, but so what!

She smiled and agreed with what I was trying to explain to her. Yes I say to her I have cancer but cancer is cancer it won't wipe this beaming smile off my face. The clock is still ticking and it all falls down to me in how I use those seconds. Besides the 282 bus could hit me tomorrow have you seen the way they drive on this road… she laughed and gave me a big hug of support…

Thursday, 8 November 2012

Breast Cancer Rant!

I went to my GP appointment to sort the white cell injection out. On taking my seat in his office the conversation went straight into the complication of administering this injection and why people should not have that responsibility. Look Sarah if I give you the injection if anything goes wrong you can sue me. (Yes he was serious!) It was explained only the hospital that issued it should take responsibility for my care. The district nurses will not help because I’m under the big CC hospital rather than the big E hospital. My GP understood why I wanted a nurse to administer because of the unpredictability of the fits not the actual injection itself. I explained how the injection is prepped already and it has a self-administering needle. Once I had explained all of this my GP said he will administer the injection. The fact I had to travel for an hour to get the big CC hospital was to him out of the question. And at least if I did have a funny turn it was in a surgery not with someone who might panic.

On returning home I’m still pretty upset about how I had to go through all this stress for something that seemed so straight forward. Then I remember I have to reschedule an appointment I received for the big E hospital due to it clashing with my chemo session. Straight away I get through to my BC nurse and she says oh your half way through treatment you must be feeling it now in a jolly voice. I go into a sarcastic rant of well with the last week I’ve had I’m surprized I’m even bloody standing. I mean handsome Mr L had me waiting in his clinic for one hour and twenty minutes, only for me to be told you can go on your merry way. I mean he has not even said hi or bye since the damn damage done to my arm which could have been prevented if he had listened to me. She in reply tells me handsome Mr L did not even turn up for a meeting for the breast cancer group to inform them he would not be there. This left a group of women extremely upset because they had turned up to ask him about chemotherapy and the ups and downs. I reply well this man needs a boot up his righteous arse. And then I tell my BC nurse about the white cell injection saga and the portacath. Then to hit home how truly disappointed I am with my treatment I say, I have received better care with my high risk pregnancy and I’m bloody serious. I explained how I believed there had been a major cock-up and it all falls down to not receiving Herceptin. As a way of getting a reaction I say well if I received my treatment in America with a HER2 triple positive on biopsy results I would have received Herceptin. The BC nurses reply well we are not America…

So the question is… would you go for a second opinion if someone had offered to set it up for you?

Tuesday, 6 November 2012

Error of a Recurrence

Since my recurrence diagnosis I have literally been left out in the cold. And my Yorkshire humor is my only solace when discussing my day to day feelings. I have not seen any of my so called oncology team since deciding my treatment. The only contact has been with nurses and two registrar's who I made clear too... you mess with me and I will mess with you... and trust me my next appointment that is exactly what is going to happen. 
How can a group of people who say you can trust their judgement on your treatment be so bloody blasé? 
Thankfully with the support of my friends and family that are close and far I’m dealing with this anger the only way I know how.
There is something that I innocently said to my husband after returning from one of many breast examinations that is bugging me. I remember telling my husband a year or so ago about these sweeping examinations of my left MX breast by the registrar’s that they were not thorough. On conversation I said Miss S did a better job on checking.
My obsession with my remaining right breast meant frustratingly I remained the talk of the MDT board. Every appointment I would say and what about this and what about that? Questioning their every move and with those questions they had to investigate, but only on two occasions did they actually check my MX breast with an actual hands on full breast examination. And each time it was Miss S that did that very thorough examination.
At one point only a year ago an emergency registrar that was brought in thought I no longer needed the six monthly breast examination appointments and was going to discharge me. It was only because I stepped in and said actually if you read my notes I had my mastectomy 2009 and I am due another six month appointment that alarm bells started to ring in my head. On checking my notes he actually said he did not see the point because my case was straight forward, but referred me anyway.

Someone has strongly suggested I go for a second opinion, not only that but offered assistance in finding that second opinion. The temptation to actually take up on that offer to finally get to the bottom of this mess is tempting, but the pressure to also remain quiet because I want the journey to just disappear is also there.

Friday, 2 November 2012

Over Diagnosis, Where Does That Leave Us?

Currently there is a buzz within the UK papers about over diagnosis of breast cancer. I was diagnosed with DCIS and this is one of those pre-cancers that have always remained under fire. DCIS has three grades and without having a core biopsy my diagnosis high grade wide spread DCIS would not have come about. My diagnosis would also have slipped through the net if my oncologist did not request a second lot of biopsies done. As far as the medical board were concerned my DCIS was harmless and I could go on my merry way, but Miss S was not happy with the results.
I have had many a discussion with ladies saying ‘Well your cancer isn’t a cancer!’. Well my reply is now if my cancer was not anything to worry about why have I developed a recurrence? 
My results from back in 2009 and my continuing concerns that maybe my follow up treatment was being too relaxed are written all over this blog. I have had friends being apologetic in one breath, then saying you was right Sarah and they should have listened. This of course is a bit late because my DCIS has now turned into stage III breast cancer. And not once was I in search of the chemotherapy ride. To me my blog has become a warning to other women and men out there facing breast cancer. Yes while catching my breast cancer early at a pre-cancer stage it is priority we iron out the treatment process. 

So where am I left on the Breast Cancer Lottery?

Well I must fight on personally, I have no choice. After all it is stage III and in my notes it says treatable, but I will never be truly relaxed.

This is an email I received from Breakthrough Breast Cancer

Dear Sarah,

As you may be aware, the results of an independent review into breast screening services have been published, with widespread coverage in the media.

The review was set up because of differing opinions about the risks and benefits of breast screening. As a valued supporter, we wanted to share with you the main results of the review, and what we think about it.

The review has confirmed that screening saves lives. In fact, it saves 1,300 a year – a huge number which shows the benefits of the service.

However, the review also showed the downside to screening. For all of those lives saved, around 4,000 women will be over-diagnosed. This means that those women may be diagnosed and treated for a cancer that may not have caused them harm in their lifetime.

We are working together with Breast Cancer Campaign and Breast Cancer Care to provide a unified voice on this issue. As the UK’s leading breast cancer charities we are supporting the work of an expert group looking at the information women receive when invited for their screening appointments and we call for this to be available as soon as possible.

While this review highlights the risks and benefits of breast screening, all of the breast cancer charities support breast screening. The service was set up for good reason and has been shown, by independent experts in this review, to save lives. For this reason we encourage all women to attend their screening appointments.

More information on this issue is available on our website with our full statement and videos here with a Q&A here.

We hope this provides clarity on what is a complex subject.

Sadly it highlights the confusion and urgency needed to resolve this complex situation of diagnosis and treatment. 
My diagnosis was the right path to go down, but my follow up treatment as in medication such as being put on a course of herceptin for a result of HER2 +++will always leave that dark shadow. 
As I keep saying no two breast cancers are the same, our diagnosis is tailored to the individual, not to the group.