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.


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.


  1. I agree with you Sarah. Everyone in the medical profession should be caring and compassionate. That does not mean that they have to be all over you, but that they should be caring for the whole person and not thinking of you as another cancer patient. How you have a better outcome when you see Mr L.

    1. Thank you Patricia.. I so hope my situation is resolved with no more glitches. It is hard enough going through the treatment.. to have the added stress of knowing your team might not be on the same page as you just adds to that dark hole your in.. Hope your safe and well xxx