My cancerversary present…..

As some of you may have realised by now, for every rubbish thing that happens, I book a treat for myself to do something nice for me or for the family. There are no rules any more in life ….. well there are….. Sal’s rules!!! I’ll come onto my own treat later but the pharma world had its own surprise for me today!

I received 3 nice fat bills in the post today from the hospital. Not just one, not 2 but THREE!!! I was all confused and took my confused brain the entire day to figure it all out.

I have private healthcare…. luckily!! I don’t get it free, I have been paying for it myself for over 20 years. Like you pay car insurance, I pay for my health insurance as I am more important than a car!!! I can’t stress this enough at why you should have private healthcare. I’m not saying NHS isn’t good enough but frankly some drugs are just not available for NHS patients which I will never ever understand or get my head around.

When I had breast cancer, I was piled with the most agressive treatment I could have. I was given an anti sickness drug called Emend at each cycle. It costs Β£900 every 3 weeks. I was never sick. The poor cancer patients on NHS, didn’t get this drug.

I could debate for a whole year on this. All these charities, billions and billions raised yearly for research and treatments and prevention….. but for those who suffer cancer….. give them the frikkin Emend! Just send a few less leaflets and advertise on a few less billboards, it can save a person’s suffering for months or years during treatment….. right???

So now I am in this position and not too happy about it! Somehow I missed that I need to pay for both of my drugs. Herceptin and Lapatanib! I’m not sure how, I guess I was just shocked that I had to pay for any drug, I probably missed the rest of the conversation and so did Gurveer!

So here we are, two fat bills slapped onto my porch this morning. The third was my excess on my policy so I will let that one go!

So here’s the thing….. my cancer cells have a receptor for herceptin. The HER2 receptor, therefore I need Herceptin to attach itself to my stupid cancer cells to prevent them growing, dividing…. whatever.

The clinical trials have been done in breast cancer patients and those with stomach cancer. They did not do a clinical trial with bile duct cancer patients as there weren’t enough of us.

My thoughts, yes we havent done a clinical trial but the drug is taken and it targets the cancer cells that display the her2 receptor. How does the drug know whether the patient has stomach or breast cancer. It doesn’t. It works on a cellular level. The drug doesnt know if your name is Sal, Bartholemew or Kawalpreet….. it just looks at your cells and does its job so why the barriers?

Why do all the breast cancer patients get the drug and I don’t ? Not only do I have to have cancer for the second time and have had non stop suffering for the last two years, get a stage 4 and have to pay for my own drugs…… like WTH !!!

What even is this!!! Its 2019!!! All this research, millions and millions, then a mum of two with stage 4 is forced to work through treatment to cover the high cost of the drugs if she wants to stay alive!!!

OK that is my rant !!! I need to let it go and sign some cheques because my body can’t afford to be mad. And then I need to put in some extra hours at work. These are high cost drugs and will mount up to thousands. I need to concentrate on me and my health. I will work on it without getting emotionally caught up in it all and I will try and be productive!!!

I am taking part in a panel discussion at the end of the month in London for this exact issue and my voice WILL be heard. To what avail….. who knows but I am not going to sit back on this. I will try my best to figure this out and make it better for any patients that come behind me.

Bloody ridiculous!!!

So I have contacted one of my dear pharma friends and we have exchanged details this evening as I was writing this blog. I will now pursue another pharma company to try and request this drug on compassionate use.

I am too flabbergasted to fill this blog with pictures. This is the last thing I bloody needed….. I could write a whole book just how wrong this all is.

Hey Ho…… just another day in the life of a cancer patient.

How my chronic fatigue ran away when I opened those letters today !!!!

5 thoughts on “My cancerversary present…..

  1. I too have private healthcare but didn’t activate it with my Breast Cancer treatment as the NHS were so quick and thorough that I didn’t feel I needed to. Guess I was the lucky one as I had Emend on the NHS after my severe sickness to the first FEC chemo, they were amazing and did everything they could to make the process as easy as possible for me… no cost was considered.

    I agree that it’s unthinkable that you should have to consider costs when you clearly need the life saving treatment and only wish that everyone could get the treatment that they need wether private or NHS. Hope you get some help from your Pharma friends.

    Love that you turn everything into a positive thing to do with your family x

    Liked by 1 person

  2. How much of a coincidence this is! Was thinking of you yesterday and how you would fund all your treatment hence the text re: Individual Funding Requests.

    Why those who shout the loudest get heard in this society? You rock Sal… others will benefit too x

    Liked by 1 person

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