Wednesday, 27 March 2013

Never Under-estimate a Patient Survey







Q11. When you were first told that you had cancer, had you been told you could bring a family member or friend with you?

1.    Yes
2.    No
3.    It was not necessary
4.    I was told by phone or letter
5.    Don’t know/ can’t remember

When I received my results from my first lot of biopsies in September 2009 at Ealing hospital I had my five year old daughter with me. This was because it was the summer holidays and being new to London I knew no-one who could help. It would have been nice if someone had taken my young daughter to one side whilst it was explained, but no attempt was made. I was in tears and my young daughter was the one consoling me.
My diagnosis of recurrence in July 2012 by same BC nurse was done over the phone. It was an urgent phone call to get me back to Ealing hospital the following day.

Q14. When you were told you had cancer, were you given written information about the type of cancer you had?

1.    Yes, and it was easy to understand
2.    Yes, but it was difficult to understand
3.    No, I was not given written information about the type of cancer I had
4.    I did not need written information
5.    Don’t know/ can’t remember

At no point have I been given information on the type of cancer I have. The type of cancer was discussed verbally and then I was left to do the research on the internet to fill in the gaps. The mastectomy took place at Charring Cross hospital October 2009. I requested my results a year later and that is how I found out there was a question mark to the possibility of micro invasion. This I believe lead to my recurrence as my treatment in 2009 did not involve radiotherapy or any other treatment as mastectomy and recon was supposed to be sufficient.

Q16. Do you think your views were taken into account when the team of doctors and nurses caring for you were discussing which treatment you should have?

1.    Yes, definitely
2.    Yes, to some extent
3.    No, my views were not taken into account
4.    I didn’t know my treatment was being discussed by a team of doctors/nurses
5.    Not sure/ can’t remember

On consultation I mentioned my veins were not happy and would like a port fitted I was ignored. It is clearly written on my medical notes that my veins are hard to access. The consultant said I had juicy veins. I found his reply/attitude to my request very manipulative and condescending. It was more what he wanted rather than patient comfort.

On the first cycle of chemotherapy the vein used instantly reacted to FEC 75 and started to shut down. The nurse administering the FEC took three hours and said she would make a note and pass it on for a port request. If this side effect was rare I would understand, but it isn’t for FEC.
On returning to clinic 8 for my review before having my next cycle to be told to grit my teeth by a registrar for the next chemo was again inexcusable and inappropriate language to be used. On examining my arm you could clearly see an issue was developing. Apparently there was no mention in my notes of the nurse request. It was also mentioned by the registrar, he did not understand why a port was not fitted before treatment started because I would be receiving a year of Herceptin infusions.

After my second cycle and again the vein shutting down I was told by nursing staff in clinic 6 to ring my consultant if I hear nothing about a port being fitted. Ten days later as instructed I had to ring my consultants’ secretary leaving a message asking if they could chase the port up. Two days later I received a phone call to have my port fitted. I strongly question the fact that a patient should have to phone when it should be clearly communicated between staffs that a problem is there. Thanks to all of this I developed Thrombophlebitis of the right fore arm which should never occur. I understand that FEC damages the veins, but I’m a type 2 diabetic and my circulation is important. And not once has anyone taken the effect of this treatment and my diabetes into account. In fact it has been left to me to shout which is wrong.

On returning to clinic 8 for review for the third cycle of FEC I again had to wait one hour and thirty minutes. When I was eventually seen it was by a nurse not a registrar. Clinic 8, were unaware that I had developed a nasty case of Thrombophlebitis because I had received treatment at Northwick Park Hospital. I had tried to get help at Charing Cross via a phone call, but was told by the emergency Oncologist on call that I did not have an issue. Thankfully I saw sense and went to Northwick for a second opinion as the problem was getting worse. At clinic 8 without checking me over they said I did not need to see the registrar and everything was fine. I angrily protested in the clinic at my treatment thus far and went down to A&E. The excuse clinic 8 gave to A&E was I had missed a couple of my appointments. My reply was pull CCTV footage it will tell a different story, so no my opinion is not taken into account because all this mess was preventable from the very beginning.

Q21. Were you given the name of a clinical nurse specialist who would be in charge of your care?

1.    Yes
2.    No
3.    Don’t know/not sure

At no point in Charring Cross hospital have I received a clinical nurse. When enquiring about anything I have been told I must speak to my consultant or BC nurse at Ealing hospital, but they are not treating me Charring Cross is. When turning to my BC nurse at Ealing hospital I have been told to vent my concerns to Charring Cross hospital.

I have received zero emotional support or reassurance from any medical staffs at either hospital for eight months now.

Q27. Did hospital staff give you information about how to get financial help or any benefits you might be entitled to?

1.    Yes
2.    No, but I would have liked information
3.    It was not necessary
4.    Don’t know/ can’t remember

The Maggie Centre has been my means of support throughout my treatment. When I needed help to ease the impact travel had, they arranged a grant payment from Macmillan. At no point was I told by my BC nurse or any staff members at either hospital I could receive financial help. It fell down to another breast cancer patient and a Maggie representative to help.

Q28. Did hospital staff tell you that you could get free prescriptions?

1.    Yes
2.    No, but I would have like information
3.    It was not necessary
4.    Don’t know/can’t remember

Thankfully I already receive free prescriptions because I’m diabetic, but again I only found out recently when filling in the Macmillan grant form that I could receive help. Considering my journey with breast cancer started in 2009 again the information should be made clear to patients.

Q58. Did hospital staff do everything possible to control the side effects of chemotherapy?

1.    Yes, definitely
2.    Yes, to some extent
3.    No, they could have done more
4.    I have not had any side effects from chemotherapy
5.    I have not had chemotherapy

My reason is explained in Q16.

Q60. While you were being treated as an outpatient or day case, were you given enough emotional support from hospital staff?

1.    Yes, definitely
2.    Yes, to some extent
3.    No, I would have liked more support
4.    I did not need emotional support from staff

As a day patient Registrar’s do not know who should be responsible for my emotional care especially when being treated by two hospitals. As a patient I have been sent on a mouse chase for something that should be there without an issue. I understand this could fall down to finance rather than patient care. Hospitals work on a budget and the explanation given is I am an Ealing hospital patient.

Q62. The last time you had an appointment with a cancer doctor; did they have the right documents, such as medical notes, x-rays and test results?

1.    Yes
2.    No
3.    Don’t know/can’t remember

At my last appointment in clinic 8 I was left for one hour and thirty minutes until I approached the reception desk. It was explained I would be seen by the nurse shortly. After seeing the nurse and being in the clinic for now two hours I saw the registrar. He apologised for the long wait and explained they could not find my notes. I could not ask the registrar any questions about my care because he had never seen me before and had zero knowledge of my history.

Q66. Have you had treatment from any of the following for your cancer?

1.    Physiotherapist
2.    Occupational therapist (OT)
3.    Dietician
4.    Speech and language therapist
5.    Lymphoedema specialist

The above question is laughable to me because I requested a Physiotherapist for the Thrombophlebitis, and I was left to sort out the mess Charring Cross hospital created on my own. The fact that I was being treated as an outpatient because my main hospital was Ealing hospital left neither hospital wanting responsibility for my care. The excuses coming from my BC nurse to avoid aftercare in my eye were inexcusable because all I wanted was advice from someone who knew what to do nothing more. I was not given a leaflet or explanation the only people willing to advise me were at The Maggie Centre and they wanted me to see a Physiotherapist. 

Other Comments

Was there anything particularly good about your NHS cancer care?

No, not really I have found patient care and clarity at both hospitals to be terrible. The excuses by my team have left me feeling neglected. To me communication is so important, but when your notes go missing or the individual you are seeing has zero knowledge of your history at hand it falls on the management to why.

Was there anything that could have been improved?

As you have read there are a number of improvements that clearly need implementing.

Any other comments?

My treatment was done between two hospitals Ealing and Charring Cross. Treatment took place in 2009 and a recurrence developed in 2012 of same cancer. Thankfully with the help of the internet I have knowledge of how to manage the problems I have faced, but still it should not fall on a patient to resolve a medical issue, but qualified medical staffs. 

To be perfectly honest my whole experience past and present has left its mark. That is why I have requested a referral to the Royal Marsden hospital. The full extent of the issues I have faced and misuse of words when explaining avoidable issues by staffs has resulted in me requesting this referral. For a BC nurse to say I should complain to PAL because another patient who could not speak English had also received bad treatment, and they were using the language barrier as the reason to why mistakes were made leaves doubt. Not only that but for this BC nurse to say put it in a complaint to help this other patient because I was English and they had to listen to me is a sad and bad position to be placed in.

From the very beginning of my treatment and hearing the words, but we don’t have control over our nursing staffs my high alert button was switched on. You cannot treat a patient in this day and age and expect them to remain silent if they are unhappy, but so many still do. The health/rights of a patient should never be compromised, under-estimated or neglected.

........................................

So people fill out these forms and speak out if there is an issue. It may seem like a waste of pen ink, but staying quiet will not correct the issues within the NHS. I think we will be seeing more of these forms to help correct the mess the NHS is in. Five minutes of your time is worthwhile in trying to improve NHS patient care. I know I sure the hell have had my rant and I know I could of said more in the comments section, but I think the question section says it all.
My criticisms of my treatment are not dismantling the NHS dream, but make sure what has happened to me cannot be repeated. The Nightingales in the NHS need our support to get things back on track and make long over due improvements.

Monday, 25 March 2013

Herceptin is a Pain in the Heart...


My first Herceptin infusion seemed to go without a hitch. Well at least that’s what I thought until five in the morning. I woke with slight chest pain, but hey-hoe just another glitch to be dealt with. In an attempt to divert my attention away from the dull pain on my left side I do some house cleaning followed by doing piano practice with Sophia. And did it shift it oh no.
By the afternoon I felt totally drained and left with the attention span of a goldfish. I had to submit to the fact that this issue was not just going to fade away. And not getting it checked out would be totally stupid. The registrar before signing the consent form had explained it causes issues, but it was one infusion. To find reassurance I turn to my FB page and ask a simple question.

Has anyone else had chest pain with Herceptin?

I had already headed for hospital and did not see theses replies until I returned home.

KPD: it is very common. I had lots of twitches in my chest and shooting pains. I had my heart scanned every few months. It is good to have them check it out.
SF: Yes I did too  always worth checking out x
JCT: Yes always have it checked hun, may be nothing but better than worrying xx
DLB: Yes… I had some heart function issues as well! Good luck Sarah!

In hope of resolving the pain I headed for the Big C hospital A & E. Several hours later in a last ditch attempt to solve the pain the oncologist Doctor on call gave me a Nitrolingual spray for under my tongue. Within five minutes the relief was instant. We still don’t understand what caused the pain, so further investigation has to be done by a cardiologist team. The explanation given by the registrar was my symptoms were not the norm for Herceptin, but I’m puzzled by this response because the four ladies that replied to my question say something totally different. It seems that these twinges or just a common side effect of this drug, but I still have to have the cardio check me out before the next Herceptin.

Thank you to those lovely ladies that left their messages of reassurance on my FB page it means I’m not alone and it was not just psychological.

Wednesday, 20 March 2013

Break The Trust and You Break The Patient.


I was lucky to win two tickets for the UK Premiere of G.I.Joe. Walking the red carpet and a free night out before my next oncology appointment tomorrow is a welcomed diversion. Sophia was disappointed that she was not going, but the rules of the competition were over 18 only.

As I walked down the red carpet wearing a cream faux fur collar jacket I could not help but wave at the autograph dealers like I was the star. At first they did not recognise me, but my smart appearance did not fool them for long. My friend who I had brought along to experience the furore that I and Sophia have seen so many times thought it was madness. How could people wait hours in the freezing cold and rain? It baffled her because she is not fazed by the entertainment world. I said for some of those people it revolves around money, but for me and Sophia it’s a day out. Most the time we are away from these individuals and have friends that are collectors. My friend still could not understand the appeal, but it is our thing, and away from the cancer bubble.

We walked the sodden wet red carpet into the foyer of the cinema and my friend caught a glimpse of Dwayne 'The Rock' Johnson. I nudged her to get her camera out and snap a picture. Dwayne 'The Rock' Johnson was chatting with David Hayes the British heavyweight boxer. Sadly my friend took too long trying to set her camera up and security moved us on. I was a little faster and managed to get a couple of pictures in the foyer.


Our seats were at the front of the cinema. This meant when they did the intro I would get some excellent film footage on my camera to share with Sophia. And thankfully my friend would be able to take some pictures to show her son. The usual complementary bag of popcorn and bottle of water was waiting.


The following day I believed I would receive some sort of reassurance that my cancer had finally gone, but yet again I was left upset and disappointed. On arriving at clinic 8 the sister started to panic thinking I was there for a port flush. She instantly started to babble on about not having any port needles to do a flush. I said but I’m not here for a port flush that I had an appointment with Mr L.

I booked myself into the clinic and took a seat to wait for my name to be called. One hour and a half later still my name is not called. I go to the reception desk querying my wait. The receptionist went to investigate and returned saying the nurse will call you shortly. I take a seat again and wait a further thirty minutes to be weighed and sent back into the clinic. Another twenty minutes go by and finally I’m seen by a registrar. He is all apologises and explains my notes are missing. Then I’m told to sign a piece of paper for Herceptin to begin. He explains how they have been using Herceptin fifteen years and still have not got to grasp on the side effects. That it can damage your heart, but the heart seems to recover with time. And did I understand all of this?
Well yes of course I understood because thankfully I have other BC ladies at hand advising me. I signed the piece of paper and then explained I was having issues with the Tamoxifen. I was told I had to take it up with my GP and he would refer me onto a Gynaecologist. That there was nothing they could do there. I calmly said ok and left without even trying to get into any further conversation about my concerns. I wasn’t told if my cancer had gone because this man had never met me before. My notes were nowhere to be found, so it was pointless trying to ask. I was sent up to floor 5 to book an echo of the heart to be done in April. I thought to myself well that was bloody productive. As I walk up the four flights of stairs to level 5 I ring my husband up. I tell him in detail what has just happened and he said not again. He wanted to know when I start the Herceptin. I said ops! I forgot about that, so instead of going back to clinic 8 I go to level 6, chemotherapy and ask them. After all it will be them administering the drug every three weeks.

I return home with friend’s texting me, so has the cancer gone? My reply I don’t know because no-one seems interested in telling me anything.

Today I leave a message on the answer machine for my BC nurse to contact me. Two hours later she rang me back asking what the matter is. I said I want a referral to the R M. I want to be placed under one roof where my treatment can be monitored properly. I’m tired of the miss communication and errors.  She wanted me to explain even further and I did not see the point in doing so. We had already been down this road already and I did not want to keep repeating myself. I said look I have two very serious illnesses that impact on each other and no-one is taking into account my stress level. Every time something goes wrong at that hospital my heart sinks. And I should not be having that sinking feeling. I have been treated under several hospitals and bar one instance I have not had any issues with treatment or staffs. She said she understood and that my concerns were being noted. She said I should speak to Mr L and ask for the referral. I instantly said no and the reason I say no is I have only ever seen Mr L twice, once in July 2012 and the next January 2013 for radiotherapy to begin. Again I repeated to her if I don’t care about me then who will. I’m sorry but I want a referral for a legit reason and that is my sanity. I said only twenty minutes back I snapped at my husband because I’m at breaking point. Is that validation enough for you? Not to mention the fact my feet are dry cracked and if my diabetic nurse sees them she will hit the roof. I said Tamoxifen affects and creates Diabetes do you think I’ve not read the piece of information that comes with those pills before taking them. No-one is asking or monitoring me and to top it all are losing my medical information. She asked when the Herceptin starts. Friday was my reply. Oh! She replied. I said look I can wait until I’m transferred. The BC nurse instantly said no which I knew she would. No fool in their right mind would delay their treatment. I was advised to go have my first session and she would sort the referral out for me with Mr L herself.

Result!!!!

Well yes for me, but I should take some of the responsibility for things going pear shaped in the first place. If I had ignored what my GP said back in 2010 about referrals making thing awkward I would not be in this mess.

I cannot help but wonder about ladies that are in a similar position. What about those ladies with silent tears that no-one is picking up on? The NHS is a good system, but for that system to work without error or fault it must be transparent. Consultants, doctors and nurses must all be speaking the same language. Compassion and showing an interest is important to a patient’s recovery. If the staffs show they are not bothered then it creates issues of trust. Break the trust and you break the patient.

Sunday, 17 March 2013

Body Image and Breast Cancer


I love taking the piss out of myself. I do not take myself serious as an individual at all. I know I have faults and those faults I tend to fixate on when really I should be using them. So recently I went rummaging through old bits of art work I had done in my twenties and came across a cartoon caricature of myself. Now the original was drawn by some else, but all those years ago I had changed it into various avatars for my MSN because I hated actual photographic images of myself. The original artist picked the faults on my face like the ridge in my nose that had been broken as a child. And the shape of my chin and blew them up BAM! In my face, but in defiance of shying away from the image drawn, I learned to celebrate those ugly parts realising early on that what I fixated on is not important. Actions tend to speak louder than words in my world.

My confidence has grown over many years and a few bashes. This has helped me get past the image I now see in the mirror from numerous surgeries to both breasts. I do not ignore or disguise my scars. I hate them, I resent them, but acceptance of such scars is hard to swallow, but I will not be pulled, pushed, cut or bruised into feeling I am less than the next person because my image does not fit the beauty persona society creates. The kindness of a good heart and the warmth of my soul will always shine that and being a stubborn shit that will not be stopped. I have learned to take me not so serious, but take the good parts of my personality and use them to the max. The numerous natural talents that I hold come in handy when expressing my true feelings to this disease.

And to finish of this blog post I have corrected and improved an image someone posted on my FB page. I thought it needed some extra info added on the symptoms of breast cancer this included links. Awareness is not just about checking your breasts it is about understanding your body and its changes. I believe in the natural instinct that tells you something is not right, the internal kick up the arse that we tend to ignore. 



So please, please if in doubt shout!

Do not leave it because you think you are alright. It is better to face up than ignore these subtle changes that could mean pushing up the daisies or being with your family. In other words, ‘It is better to be safe than sorry.’

Tuesday, 12 March 2013

The Cost of Herceptin


Every time you walk into an office with a consultant waiting to greet you. The firm hand-shake and smile leaves questions. I knew the radiotherapy could create extra issues down the line, but when a consultant goes through the gritty details of what if. All I want to do is bury my head in my hands blocking my ears. I do not want to be the individual that falls into that dark hole they are describing. I look at this man direct in the eyes and say with a smile, ‘but that isn’t me, I know it could be, but fingers crossed that will not be the case.’

‘Well you do realize radiotherapy can affect the reconstruction a year from now. It is very complicated because no-one can predict the outcome.’ He says


My implant has a ten year shelf life and it has already used four of those ten years. Thankfully recon is changing by using stomach fat and skin avoiding the traditional implant, but for a few skinny creatures with zero fat to spare the implant is the only option. Even while I sat in that room discussing the possibilities of the damage done and how I had options. The consultant’s main comment was about my slender frame which limited those options.

‘Being skinny and having breast cancer has its complications.’ I repeat to a friend. She said, ‘look Sarah don’t feel down you have come this far don’t look at the negatives’, but in my eyes not far enough. When talking to my friends I don’t want to create a pity me story in their minds, but three years playing the same record can create scratches. The cancer may have been beaten into remission, but the torment of the mirror remains. You are searching for consistency and trust in strangers eyes. Then the words you heard only an hour ago of did you know so and so passed away today she was only forty-seven causes the mercury of fear to rise.

Recently I was informed Herceptin is being studied. The length of time and the cost of this treatment are under fire. The pharmaceutical company insist it is right for Herceptin to be taken for a year no more or no less, but at the cost of just over £40’000 to the NHS per person means it is being investigated. HER2 is amplified in 20% of breast cancers cases. Those with a HER2 positive result have a hard time in the survival statistics. That is why you become reliant on this drug doing its job. Chemotherapy, radiotherapy kills the cancer cells, whereas Tamoxifen and Herceptin could prevent the breast cancer from returning.


Herceptin is administered every three weeks via intravenous unlike the daily oral consumption of Tamoxifen. Tamoxifen costing less than £800 over five years starves cancer cells of oestrogen, whereas Herceptin binds the cancerous cells preventing the erratic growth. I will have eighteen Herceptin treatments at a cost of around £3000 each. You can see why the NHS has started a yearlong study on Herceptin and its benefits.

This means that Herceptin could be reduced to a six month course in the UK rather than the year the drugs company advice. This is not the first time Herceptin and time frames have come under scrutiny. Of late the pharmaceutical companies have had to explain on a number of drugs produced for cancer and cost. Yet it seems these drugs companies have the final say when it comes to treatment and health care. This of course generates the theories on whether the cure is out there because of the amount of money that could be lost.

Personally I have an appointment to visit the Breakthrough Breast Cancer Research Lab on the 10th October. It is a long way away from this visit, but sometimes it is better to wait than rush these things. 

Sunday, 10 March 2013

Mothering Sunday With Breast Cancer



As I lay in bed on this very chilly Mothering Sunday morning my mind turns to the book Peter Pan. 


Peter Pan

Mrs. Darling first heard of Peter when she was tidying up her children's minds. It is the nightly custom of every good mother after her children are asleep to rummage in their minds and put things straight for next morning, repacking into their proper places the many articles that have wandered during the day. If you keep awake (but of course you can't) you would see your own mother doing this, and you would find it very interesting to watch her. It is quite like tidying up drawers.

You would see her on her knees, I expect, lingering humorously over some of your contents, wondering where on earth you had picked this thing up, making discoveries sweet and not so sweet, pressing this to her cheek as if it were as nice as a kitten, and hurriedly stowing that out of sight. When you wake in the morning, the naughtiness and evil passions with which you went to bed have been folded up small and placed at the bottom of your mind; and the top, beautifully aired, are spread out your prettier thoughts, ready for you to put on.

J M Barrie

Thursday, 7 March 2013

Beating Chemo Blues


Having the Chemo blues is one strange sensation. The shock of going through all this treatment is now sinking in. The only way to describe how I feel is to say I’m at the bottom of a very steep hill, and my mind and body are fighting to scramble up. Reaching the top seems easy, but the fear of the not knowing makes the hill much steeper.
  
The 19th is slowly creeping up and I will get the results on whether the zapping worked. The ‘If’ of cancer treatment is always there lurking it never goes away especially when you have a recurrence. It sort of shrinks the percentages that the breast cancer lottery feeds on. I did try asking those that were zapping me if it had gone, but their lips were firmly sealed. The fear of knowing that they still could dismantle my MX breast is a path I don’t want to walk down.

To switch my brain off from those worries I have I still kept myself busy.




Book week meant I had another reason to dig the sewing machine out once again. This will be the third costume in 2 months. The receptionist at Sophia’s junior school said I put certain mums to shame. My reply Nah, I just make it look easy because I have the machines sat gathering dust. But the truth is I don’t want to use the excuse of cancer for her not having a costume. I want Sophia to be like every other child, excited about being her favorite book character. 

Friday, 1 March 2013

Humoring Cancer


These are the everyday sentences that gravitate my way and my replies.  

1.     Your strong
Like most people I’m a brilliant actor.
2.    You look better now than you did last month…
Hmm! I do believe you said that last month. Do I sense a white lie?
3.    You should be taking it easy…
Yes, but I need to breath too
4.    So does this mean you’re done?
Well the oncologist thought I was, but I keep going back because I love her bedside manner.
5.    I like your hat
Yeah I'm auditioning for the new Hovis advert



6.    My Aunt had cancer and died
Sorry to hear about that, but I’m Sarah Mendoza and I'm very much alive.
7.    How do you cope?
I don't... do you?
8.     I don’t know what I would do if someone cut my breasts?
Well I don’t think you’ll have much choice it is that or pushing up the daisies.
9.     I like your attitude
Tell my husband that 
10. I have breast pain what do I do?
Why are you stood here talking to me get to your GP and get it checked?

And I do hear some of these sentences over and over again and my replies remain the same...