Monday, 31 December 2012

One Step to Cancer Free 2013...

The pond has become a wishing well with the fish like sharks protecting its treasure trove of wishes never to be repeated.

My visit to the big CC hospital on the 31st December reveal sometimes stomping your feet and speaking to the right people actually works. I don’t know if my MP or just those few people that I vented too intervened and opened my team’s eyes, but it looks like I am finally being heard. I saw handsome Mr L at the clinic and we spoke openly about my arm and he assured me that it will be sorted. The arm has yet again flared up with the Thrombophlebitis, so he could see for himself how much pain I am in. Handsome Mr L has put me on an even stronger course of anti-biotic to try and clear the inflammation. He is also arranging therapy to get my arm back to normal which he says is achievable.
We spoke about the next route of treatment which means five weeks of radiotherapy for 30 minutes every day. The reason for five weeks of radiotherapy and not three is because of the reconstruction. The threat of damage to my lower part of my left lung which is said will only be 1% is the only issue that will arise from this therapy. No matter which way I look at it each therapy will leave its own individual scar which I have to live with. The other issue is my recon will become deformed and may harden which then will require tweaks. All the issues that could arise were clearly explained in full and now I feel comfortable again. There is no need for me to see PAL or feel neglected any longer. The stress of the last few months has subsided, but. .. And there is always is that but… 

The sister at the clinic was not a normal smiley self and I do believe that maybe she was the one who had to explain how my condition had not been picked up sooner.

When I spoke to my husband about the tension he said well of course. The sister is the eyes and ears of the clinic and she is the one who sees you before any consultant. If you had been complaining about your arm and a person at the Maggie Cancer Centre had to step in then that is embarrassing for the clinic. Thrombophlebitis is rare and when it occurs someone has not been checking you correctly. 

I do hope this is the last of my issues with this treatment, but who knows all I can do is stay positive and take every day as it comes. Roll on the New Year and my final cycle of FEC 75… 

Friday, 28 December 2012

Prevention in Hope of a Cure..

We all talk about New Year resolutions of sort’s this time of year, but the resolution of hope is something that echo’s stronger than ever. Hope is something I grasped onto from the very beginning whilst combing through the internet for one little bit of info that will end the nightmare before it even began. Yet the reality that many fear after years of treading the positivity cloud and seeing many lose their brave fight. That hope is a mere illusion that hides the silent tears.

Hope is all we have; hope is what keeps us going. Yes and hope can be replaced with despair when yet another face fades away thanks to cancer.

Cancer is so complex we are very much a long way from finding a cure a researcher told me this year. It could be ten years or thirty who knows before a cure is found. The truth is more and more money is being ploughed into early detection that’s how complex cancer truly is.
Cancer patients are surviving longer now than ever before, but nothing is mentioned about those women that put themselves threw new drug trails for that word HOPE!
I am personally grateful to those ladies that selflessly and silently do their part without receiving a thank you. These women are the ones behind a lot of the research into finding better target drugs until that illusive cure is found. And not one receives a payment for what they do… unlike the corporate drug companies that rely on their help.
Prevention in hope of a cure for cancer is the path men, women and children currently face. It is a harsh reality, but the truth behind the cancer lottery… let alone the breast cancer lottery.

Happy New Year!

Tuesday, 18 December 2012

Sorry No Bucket List here!

I love this bucket list excuse behind me taking Sophia to premiere events, but there is no bucket list. Why pay £150 to go to a concert to see Katy Perry and not actually see her one on one? I’m a cheap skate of a Yorkshire woman and I want Sophia to actually chat with her, so I avoid paying the £150 and take her to a premiere which costs nothing. Not only that but she gets photo’s and an autograph. Does that sound crazy? Not to me because Sophia has walked seven red carpets and had a whale of a time meeting people that she sees on the big screen.

A bucket list I think sounds rather final in this cancer bubble. It makes the bucket list like a get out clause for doing things that we really want to do, but fear being judged for doing so. Maybe I’m wrong, but I do think I’m right on this one. I write this with bemusement written all over my face because people always need an excuse for getting excited, so they don't break the mould society finds acceptable.

Personally when I take Sophia to meet Tom Cruise or any other star I’m not looking at a bucket list, but at the long term affect it will have on her. My blog maybe full of glitches and mayhem with me chasing my treatment, but in general my focus is my young daughter.

Mary Poppins did not have a bucket, but a carpet bag of dreams. I’m adding a little spice and excitement away from breast cancer for my young daughter. And I am fully aware of what people might think or say, but guess what I’m doing it because it is free and she loves it. I don’t need the words ‘Bucket List’ to hide behind for my little adventures with Sophia. My daughters’ confidence has grown and grown since starting this hobby of ours. If that isn’t a good positive I don’t know what is…

As for my chemo treatment well only one more left then radiotherapy begins… 

Thursday, 13 December 2012

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 31st 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

Saturday, 8 December 2012

A Letter To My MP....

Stephen Pound MP,

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

Monday, 3 December 2012

Neurotic Cancer Patient.. NOT!!!!

The label of just another “neurotic” patient yet again strikes hard. This word does not even have to be directly said to you. It is just the fact that an individual’s tone of voice or actions can actually lead to this assumption when you are not being heard.
One of the chemotherapy side effects is the urge to sleep. Yesterday I fell asleep and woke with my forearm throbbing and found fifty pence sized lump. Now this nasty lump could have been there before I fell asleep I honestly cannot remember the if’s and what’s, so like a good little patient I ring the emergency number in my chemo book for the big CC hospital to get advice. I had gone down the list of things they say to look out for in the book. And it does not mention anything about lumps on forearms. Straight away I get through to a female out of hours oncologist who we’ll call Miss B. Now on speaking with Miss B I straight away had the feeling what I was saying was not actually being heard. I explained how this lump had developed on my forearm where the veins were damaged from chemo. After a very brief conversation on the phone she said well it sounds like just damaged veins which will sort themselves out.
I placed the phone down and for a minute or so I inspected my arm further. Straight away I say to myself nope this is something that needs checking one on one, so it meant a visit to a different Hospital to get a second opinion. It is 7pm and off we go to the big N hospital like a family outing.
Chemo patients know the worst place to hang out is an A&E department, but ten minutes later on arrival I’m taken into the emergency department. After two hours of waiting finally I’m seen by clever Mr C. on closer inspection he diagnosed a cyst. Now cyst are not an unusual side effect of treatment in fact they are one of the must look for issues that can develop, so why didn’t this out of hours oncologist pick up on this? Did I explain the symptoms wrong? Well I did say it was a hard prominent circular lump.
On waking this morning I decide to ring the chemo unit to update them of last night’s events. Their reply well you can make a complaint to your oncologist at the next appointment. My reply look I’m tired and all I want is this treatment to be finished so I can move on.
A cyst and a damaged vein Whooopppieeee!

But the truth be known how can I actually complain to handsome Mr L when he too is echoing the same behaviour. Your team is the extension of who you are. I understand that handsome Mr L has other patients to attend, but I can’t help having the opinion that I am just a number when it comes to meeting a cancer patient’s needs; this includes one on one emotional support which develops trust between you and them. Mistakes can happen, but this was a mistake that could have determined and still can receive my next cycle of chemo. 

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. 

Tuesday, 30 October 2012

Breakthrough Breast Cancer Westminster Fly-in

When I walked into Westminster and confronted one of Stephen Pounds caseworkers. I went into a rant of look at my arm and why I had turned up late to our meeting. I was apologetic and angry because I knew I had to go back to the big CC hospital with a smile tomorrow for my 3rd cycle of chemo. I had waited one hour and twenty minutes to be told by a nurse your oncologist does not need to see you because your bloods are ok and you look fine. You are OK? 
This of course put hell into me because I have not seen handsome Mr L since he told me my veins were fine. I personally wanted Handsome Mr L to see the damage he has helped create just because he would not listen or pay attention to my notes.
Breakthrough Breast Cancer Westminster Fly-in has been an eye opener. 

The three aims they are focused on…


1.     Increase awareness of the signs and symptoms of breast cancer through our Touch Look Check breast awareness message.

2.    Continue to drive early diagnosis and make sure eligible women have access to the best possible breast screening services.

3.    Make sure that everyone with breast cancer has access to the right treatment for their type of breast cancer at the right time.

I had to think of a way to put at least one of those aims which is important to me across. Being a diabetic I have what I call a MOT. This MOT involves having my eyes, circulation, full bloods and weight checked along with blood pressure. The full blood’s was how they picked up on my cancer.
Why can’t we bring in something similar when we have a smear to educate young women the importance of early detection. This would be ideal because you can then introduce them to the TLC campaign. As I explained to the caseworker for Stephen Pound you would not climb in a car without a MOT. Why then would you climb into your own skin? This young man’s eyes lit up and he replied you have got a point there.
Then I asked why can’t cancer patients in London have a free oyster card? Those with disabilities, over 65 and children do. I highlighted the importance of choice and how that card can help in easing the stress of travel. I explained how fatigue during treatment can leave you helpless. Again the caseworker took notes and agreed it would help.
Yes again to implement these aims cost money, but I have a target. I also mention about setting up something for those young women with children affected by breast cancer and the transition. During the last three years my young daughter has had a lot of questions and zero out let. Maybe it is me and maybe I’m not looking in the right places, but the journey of cancer treatment is not family friendly when it comes to reassurance. Our little soldiers are being bombarded with Kick cancer! And various other television campaigns and this had led to more questions from my young daughter.
On leaving the caseworker gave me a hug and requested I stay in touch. I said to him, look I'm ok, but those that are out there silently suffering aren't ok, that is what we are trying to point out to you. 

Thursday, 25 October 2012

Gossip and Cancer

With my youngest daughter currently I’m a protective lioness in the way I behave. With the whole bubble that we currently share it is more about routine rather than tears. Every now and then yes I do loss my temper with the day to day chores (i.e.) Sophia cleaning her room and doing her homework, which as a parent if we don’t keep up with children will neglect.
Meantime I still walk the mile and half to school and back. To me I must keep that part of our routine up. It not only help’s her, but me too. I’m not one for fuss; I’m a northern bird who believes in start how you intend to finish.
To me that finish line is just out of sight and no-one can help in speeding that process up. I’m realistic and say it as it is, not how others on the side lines so want it to be. And trust me I have heard enough and seen enough to realize the only words that count are mine, so when I’m told from another mother that had gone in my defense where she had heard a one parent say to another outside the school gates ‘What’s her problem?’ and my friends reply, ‘She is having a change in look or she is going through cancer. I’ll let you take your pick!’ It really did upset me. I had kept my bald head hidden from view once I had shaved. Sophia had made it clear she was not comfortable with the other children seeing my bald head, so I had been wearing woolly hats because the weather had turned cold, but today it was warm and my head was itching. I and another parent had decided to walk that mile and a half together up to the school and she said take that hat off let your head breathe. Don’t let others bother you, you look ok. Then she said I had a shaved head up until my late twenties sod everyone else. I said ok, but I insisted the hat will have to go back on once I reach the gates because of Sophia. At that I walk past these two parents with my bald head and the parent who approached me to tell me what had happened overheard the comment.
Yes I could do something to settle the gossip once and for all (i.e.) wear a t-shirt in bright neon lettering maybe, but that is what Sophia wants to avoid. She does not want to draw attention to what her mummy is going through. At seven years old she had already clocked up that adults are not very forgiving with their comments and their children likewise. She had gone through a year of hell last year at school due to bullying and things had just settled down. For me to draw attention to my situation could put her back to square one. She had learnt to put certain peers in their place and ignore, so for me to react would be to her detriment. I making a scene and walking away could put Sophia back to square one. One child had already gone up to her asking about me and saying your mum has get breast cancer after her mother had heard the conversation between me and the receptionist at the school. And Sophia smartly told her yes so what my mummy has breast cancer, so what! Sophia walked away to avoid getting into further conversation. She openly told me all of this when walking home from school the conversation starting with she had a bad day. I knew it would not be long before the playground conversation turned onto me and it could not be avoided. The cups of coffee, cups of tea syndrome, has begun. I just hope by my friend putting them two parents in their place does not have repercussions in the playground for Sophia. Otherwise the Lioness will have to come out bloody roaring and no-one wants to see that because I am not a southern softy.

The visual affects of cancer treatment we should not feel ashamed of, but before I started my treatment I knew someone who literally locked herself away whilst her eldest daughter took the responsibility of walking her sisters to school. Yes the treatment was partly to blame, but part of me wonders whether she may also be trying to protect her children from unwanted attention.

 Took Sophia to the premiere of  the new bond movie where she met director Sam Mendes... Yes it was naughty of me, but you only live once...

Saturday, 20 October 2012

Mr MP You Have a Meeting With Mrs M!

Finally I have had my portacath fitted ready for my next cycle of Chemotherapy. It took a phone message left on handsome Mr H secretary answer machine first to get the ball rolling. It is a shame that a cancer patient has to resort to such nagging methods to get the job done, but the thought of the alternative i.e. another vein collapsing is something I would not want to wish on my dearest enemy. 
On the 29th-30th I will be attending the Westminster Fly-in 2012. Previously I have always avoided such invitations, but after three years of sitting on the side lines gathering up bits of info about treatment and how my treatment has gone thus-far has led me to one conclusion. If I had a high risk pregnancy I would be receiving better care. Those are strong words, but I have personal experience in such matters. My last pregnancy I had a team of individuals all I knew on first name bases and they were there if I needed them. I had a list of direct numbers to call if I had doubts or questions. There was only one grumble when an idiot who did not deal with my pregnancy normally sent me on blue lights to Bradford hospital which I can assure you was dealt with. In all the team of people I had made me feel relaxed and I trusted them which is important.
With my current situation my Macmillan nurse is in the big E hospital, while my Chemotherapy is in the big CC hospital. I was asked at The Maggie cancer center do I have a Macmillan nurse at the big CC hospital I said No!... And when discussing in detail about how I requested my nurse in the big E hospital if she could enquirer about the portacath after my first cycle her reply was she was not part of the big CC hospital. To sum it up it was all down to me to make waves to get the portacath fitted.

What infuriates me about this whole situation is some patients don’t have the energy to ask. Some patients are so depressed with the whole situation they remain silent and except what is thrown at them. I have had the advantage of being around some very courageous strong women over three years and know I must DEMAND a portacath, but be polite and direct. Yet I still ask why? Why should I as a cancer patient resort to a phone call? After all I had told them well before my treatment started that my veins were naff. And it was written on my big E medical records that my veins were not obliging. This still left me with two veins damaged in my fore arm which are now extremely painful.

What people don’t understand about me is I am the type of person who will not make that phone call just to see what happens. I like to play with fire, but I knew this was not something I should play with.
To sum this week up Lord help my MP... I have a heap of look this is what I have seen and experienced and I don’t understand why this is happening in the NHS???? 
I have witnessed the pros and cons of having an excellent support system. Why is a high risk pregnancy so different to having cancer except there are two lives not one involved?
Yet a cancer patient has to except the cards and not moan... Well sod that! Sorry Mr MP you is in for a long ride with Mrs M! 

Friday, 12 October 2012

Relax in Chemo-land Ha!

My chemotherapy has had to be altered to a lesser dosage because of the white cell count, but on my second cycle they still had to use the veins in my hands because the request the chemo nurse mentioned on the first cycle was never forwarded on or in my notes. The second cycle took over two hours to complete because the vein started to get irritated. I was determined to get this second cycle done, so insisted we continue with the vein they had access too. To me it did not make sense using a different vein while there are still two tubes on the table and the next vein might not even play ball either. The nurse was not happy about doing this because you could clearly see my vein was not happy, but once I had the 5-fluorourcil, epirubicin and cyclophosphamide I could get out of the hospital and chill.

My second cycle of chemotherapy and a Neulasta injection the next day to boost my white cells done. Oh the joys of the breast cancer lottery!. Thankfully the registrar oncologist as requested for a chest portacath to be fitted. It is just a shame it has taken this long to actually listen to what I have been saying from the very beginning, but I was advised if I hear nothing from the big CC hospital to ring them. They say you should relax during this treatment, but by the looks of things there is no such word in chemo-land.