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.