Epitheliod Hemangioendothelioma…

At first you think there’s no way I can even remember that, let alone pronounce it! Once you get used to it, it actually rolls off the tongue quite nicely.

And now for the education bit.. let’s break it down a little..

Hema – blood

Angio – blood vessel

Endo – inside

Thelia – cellular layer or surface

Oma – tumour

I blatantly stole the following quote off of someone else’s page but I think it explains perfectly, just what EHE actually is..

“A rare and unique cancer like no other that affects the lining of blood vessels. It can appear almost anywhere in the body but prefers the liver, lungs and bones. The cause is unknown and no proven treatment exists.”

It’s weird. When you think of cancer you think of treatments. Chemo. Radiotherapy. Operations. Immunotherapy. New drug trials. In this modern world the list is actually quite exhaustive. But to be told there is NO treatment that is proven to be effective, it’s actually quite scary. How can that be?? The reality is, that because this cancer is so rare we just don’t know enough about it. Yet. I can only imagine that this is what it was like years ago for the most common types of cancer as we know them now and fingers crossed, as we continue to advance medically we will one day know more. That is partly why I started this blog. To raise some awareness, tell our story and hopefully, despite cancer, make you laugh.

There was a lot of anxiety waiting for the results of the CT scan but thankfully it was all clear. We spent the next few weeks searching Google, desperately hunting down any information we could find when we stumbled across a Facebook page for the EHE foundation. Through them, we were recommended to a specialist at the Royal Marsden, Dr Robin Jones. Just knowing that there was a specialist in this type of cancer was a huge relief.

At our next appointment with the consultant at Southend we told him what we’d found out and asked him if he would refer us to this specialist. The look on his face was like all his Christmases had come at once! If I could read minds I would have sworn he was internally saying..

“Thank fuck for that! This woman and her rare cancer have been giving me sleepless nights!”

Within a matter of weeks we were on a train heading to South Kensington. Me and the wife love a little road trip so decided to make a day of it. I’m not sure it’s best practice to be sat in a bar drinking wine prior to a hospital appointment but when you can officially pull the ‘cancer’ card, you can pretty much get away with anything. Plus, when in Kensington it would be rude not to darling!.

The appointment was like a breath of fresh air. Finally someone knew what they were dealing with and how best to proceed. We cannot fault the breast clinic at Southend hospital. They have been absolutely amazing throughout this journey but we were now getting the answers we desperately wanted.

The wife was honest with them and said she felt like a fraud. The consultant laughed incredulously and reassured her that in no way should she ever feel like that. This cancer can be unpredictable and they do not take it any less seriously.

We left the Royal Marsden with a plan. They were happy with the clear margins from the lumpectomy and they were happy for Southend hospital to undertake yearly mammograms for the next 5 years. However, due to the primary tumour being found in the breast there concern is that it could easily spread to the lungs, so every 3 to 4 months they will do chest x rays at the royal Marsden. They call it surveillance. I call it an excuse to drink wine in a posh Kensington bar every few months.

We left the hospital and not wanting to break with tradition we headed to the pub for drinks and a debrief. It had to be a Wetherspoons though. Kensington is far out of our price range.