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 31^st 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. Thrombophlebitisis 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… 

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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!

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The Best Christmas Letter You'll Ever Read

Back when our youngest was seven years old, we were as crazed as any two-parent family who worked outside the home while raising three kids. Mornings were such a mad dash I actually showed up to work once wearing two different-colored shoes. Just getting dinner on the table was an Olympic event. Worse, our middle child, while she adored her big brother, had taken a distinct dislike to her little sister, and relished every opportunity to show it. For all the times we caught her in an eye-roll or a mean word, I knew there were dozens of snarky moments we missed.

The holidays loomed, filled with obligations, to-do lists, and long lines at the post office. 

The only thing missing was any spirit of Christmas.

One day, shortly after rescuing the guinea pig from the heating vent where she'd been chased by the dog (don’t ask), I called everyone to the kitchen. Adopting my best don’t-mess-with-me “mommy” voice, I told them this Christmas we were going to do something new. Each of us would write a letter to our family. We would say what we loved about each and every member of the family. No negative stuff (sternly intercepting older daughter’s furtive glance at little sister). We would read the letters out loud on Christmas Eve, after a dinner we would all pitch in to cook together.

The moaning began right away, and didn’t stop. For the next two weeks I’d ask in a steel-hand-in-velvet-glove kind of way “how’s that Christmas letter coming along?” Sagging shoulders, massive sighs and moaning rose to a new art form. The kids probably wouldn’t have followed through except for their dad. Jim's Greek ancestors knew a thing or two about standing tough and being obeyed. (Which was pretty funny, considering privately he grumbled more than anyone).

The youngest skipped around happily, eager to share what she’d written. With her babysitter’s help, she had dashed off her letter a week before Christmas. My letter was done early too. (Gotta say, just thinking of what I would write to these four people put a smile on my face, through what would normally have been the most stressful days of the year.)

December 24^thbegan the final countdown. Jim (fortified with a smidge of Irish whiskey) and the older two kids were in separate rooms, finishing up a letter they were by now convinced would be conspicuous by its absence.

We sat at the dining table, with white tablecloth, candlelight, the “nice” dishes, the works. In the middle of the table sat a small pile of envelopes. Christmas music played softly. The logs in the fireplace crackled and settled. After dessert we cleared the table, leaving only candles and the envelopes. The youngest, invited to begin, grabbed hers from the pile, took out her letter, and proudly read what she loved about her sister, her brother, her mom, and her dad. Her sister went next, each person listening raptly as we heard nice things about ourselves from the people who knew us best. By the time mom and dad read their letters, smiles had become tears.

The next year it took less convincing to get everyone to write their letters. As the kids grew, and their writing skills and life experiences expanded, they even got a little competitive. Whose letter would be the funniest? The cleverest? Which would make mom cry the hardest? There was the year our outwardly tough-and-capable middle one told us about the struggles she was having with friends at school. The time our youngest told us how powerfully traveling made her appreciate things about home. The year the oldest came home from college having just lost his friend to a hit-and-run driver. When his turn came to read, his voice dissolved. He let us in on a deep pain I think he would have otherwise worked to “control”. How must it have felt to have his whole family stand to wordlessly embrace him?

We don’t get to choose what bad thing in life might befall us. But imagine falling asleep at night knowing you’ve said all the things you “wished you would have said”?

I now have a box of letters going back 14 years. Our daughters could not be closer. I wonder what role those letters have played. Some day I will put all the letters together, in order, a formal chronicle of a family growing up together and figuring things out along the way.

Or maybe I’ll just keep them in the box. There’s plenty room for more.

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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… 

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Thrombophlebitis And Being Pro-active

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

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

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

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

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

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

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

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

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

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A Letter To My MP....

Stephen Pound MP,

HOUSE OF COMMONS

LONDON

SW1A 0AA

8th December 2012

My Ref:  MEND01008

Dear Stephen,

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope to hear your thoughts on my reply.

With best wishes

Yours Sincerely

Sarah Mendoza

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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. 

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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.... 

Quote

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..

This Video

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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 18^th 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

And here is the Video.. please have tissues ready..

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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!

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It's here: Drafting National Agenda for Patient Advocates

Cross-posting with Regina Holliday...an invitation. Please comment and share!

Dear patient advocates, e-patients and caregivers,

We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

Regina Holliday painting: will all groups
pitch in their ideas and help?

The more of us take part, the more we can accomplish and more impact we can have. Thanks!

Background:

In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants. 

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.

The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.

We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.

The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

One side of whiteboad filled in by participants
during Partrnership With Patients event in KC

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.

Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.

Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.

PWP Notes: (I’ve taken some liberty with order to organize it better)

1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2)    We need bullet points and consistency of message.  Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3)    Potential suggestions of these 5 priorities:

a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.

b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.

c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.

d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4)    How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5)    Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6)    How do we develop/deploy patient “market power”?

a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”

b.    Should we host an online petition to represent our numbers? 

c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?

A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.

Next Steps: We’ll be creating a survey through Traitwise.com (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.

Possible, sample questions:

1)    Do you want to be part of a national patient advocacy group?

2)    What should this group be called? (choices a,b,c?)

3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)

Cleanliness

hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

Data access

Demand access to your data by USB, CD or download, etc?

Dignity

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?

 

Transparency

Yelp for providers, resources like faircare, HCHAPS awareness and hospitalcompare.gov etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)

5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?

6)    Should they be paid? By whom? (choices)

7)    How much time can you devote to this cause in tandem with your own work? (choices)

8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).

9)    How much do funding limitations impact your capacity to offer the above?

10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We look forward to hearing from you! Please post your ideas in the comment section below, or at ReginaHolliday.blogspot.com

-Pat Mastors and Regina Holliday

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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…

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Medstartr: Where The "Crazies" Are

Entrepreneurs in general are known to share five “C” traits: Commitment, Confidence, Creativity, Courage and Collaboration.

But in medical entrepreneurship, the other “C” might be for "Crazy". There are so many disconnects, agendas, and bureaucracies in health care, you'd have to be nuts to go there, right? But  when an unfortunate medical event hits home, you're driven by the crazy notion you can make it better for patients. 

Look at some of the folks posting projects on Medstartr.com, a brand new crowd funding platform where medical entrepreneurs pitch for funding from the world at large:

•  Regina Holliday, young art teacher and mother of two who lost her husband to kidney cancer. She was frustrated at the pace of government efforts to include patient voices in policy-making. Within a couple of months she’d crowd-funded the first-ever national conference on partnering with patients. It took place in Kansas City within three months of the project’s posting.
•  Two sisters who lost their mom to breast cancer and got mastectomies (after learning they had the breast cancer gene too) couldn’t find a bra that fit their newly reconstructed bodies. So they’re creating one that makes them feel as comfortable as any dual-breasted woman.
•  Me. After losing my father in the hospital to complications of a C.diff infection, and seeing how unprepared and ill-equipped patients are to engage in their care and help keep themselves safe from infection, I created a “portable patient advocate” that clips on the bed rail called a Patient Pod. My hope is to get them in the hands of patients sooner rather than later.

As Florence Nightingale said, “Apprehension, uncertainty, waiting, expectation, fear of surprise, do a patient more harm than any exertion.” Who would have thought  I'd wake up every day thinking along the same lines as Florence Nightingale? But the truth is, when you have a devastating personal experience, you can't help but imagine the next person walking in your shoes, and want that person to feel comforted, safe and in control when you or your loved one did not.

Ken Schwartz learned this. He was a lawyer working in health care. forty years old and married with a young son when he got devastating news out of the blue: advanced lung cancer. He’d smoked an occasional cigarette in college and law school, but he had been living a smoke-free, healthy lifestyle since then. As he wrote in the Boston Globe, early on in the diagnosis and treatment process:

 …the nurse was cool and brusque, as if I were just another faceless patient. But once the interview began, and I told her that I had just learned that I probably had advanced lung cancer, she softened, took my hand, and asked how I was doing. We talked about my two-year-old son, Ben, and she mentioned that her nephew was named Ben. By the end of our conversation, she was wiping tears from her eyes and saying that while she normally was not on the surgical floor, she would come see me before the surgery. Sure enough, the following day, while I was waiting to be wheeled into surgery, she came by, held my hand, and, with moist eyes, wished me luck…

Ken Schwartz

      This small gesture was powerful; my apprehension gave way to a much-needed moment of calm. Looking back, I realize that in a high-volume setting, the high-pressure atmosphere tends to stifle a caregiver’s inherent compassion and humanity. But the briefest pause in the frenetic pace can bring out the best in a caregiver, and do much for a terrified patient…I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rulebooks, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them.[i]

Ken Schwartz died of lung cancer less than a year after his diagnosis. But his legacy lives on in the foundation he started shortly before his death, the Schwartz Center for Compassionate Healthcare at Massachusetts General Hospital. Dedicated to strengthening the relationships between patients and caregivers, it also stands as a poignant testament to the power of the human touch, and human kindness, in affirming our basic humanity.

The projects on Medstartr.com above reflect and affirm this basic humanity. Others you'll find there--IT solutions and technologies, for instance-- also serve this goal. We can’t ensure a nurse is always there to comfort us, or a physician has the time to really listen, but solutions that carve out cost efficiencies, inform patients, cut wait times, and make critical information easier to find just might free up more bandwidth for our providers to focus more on the human needs of the person in front of them. That could do a lot to reduce a patient’s apprehension, uncertainty and fear.

Florence Nightingale would certainly approve. And if  Medstartr projects had existed in her day, she’d probably find a way to fund them. 

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[i] Ken Schwartz, “A Patient’s Story” Boston Globe Magazine, July 16, 1995.

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