Normality in the Perry household sounds a lot like this. Papa bear gets up at 05.30 gets ready and leaves for work. Nanny bear comes over the road to look after the youngest cub and get her ready for school, whilst simultaneously reminding the teenage cubs to exit their pits. Nanny bear takes the youngest cub to school. Mama bear arrives home from night shift and collapses into bed, forgets to set alarm and almost forgets to pick up youngest cub. There’s some last minute dashing around for dinner and tomorrow’s packed lunches. Teenage cubs come home to their pits, leaving only to scout out food and grunt occasionally. Papa bear eventually gets home and spends the next hour with mama bear catching up and handing over. Mama bear gets ready and leaves for work, leaving papa bear starfished and asleep in bed.
It’s organised chaos but somehow we make it work. We had been told it could be at least two months before we had any further news so we jumped back into our hectic world and did our best to forget.
Anyone with or affected by cancer will tell you that this is easier said than done. It never goes away completely. It lurks. Waits. Unexpectedly tapping you on the shoulder one day saying “Hi! I’m still here, don’t be forgetting about me!”. As if you’d ever let us.
We were obviously very confused by this latest turn of events and naturally other people were as well. They had questions, as we did, unfortunately there were no answers. This is where we started to understand how complicated cancer can be. It’s not black and white. Its not always simple. It’s not all the same. It’s a sneaky little fucker. Some people, however you try and explain it, will never understand that.
“So what’s happening then?”
“We don’t know yet we are still waiting”
“But your not having chemo or radiotherapy so it can’t be that bad”
“I may still need treatment at some point, they don’t know yet”
“Oh.. I just don’t understand?!”
Neither do we Carol. Shockingly not all cancers come with a guaranteed bald head and a head scarf.
Christmas came, went and not too long after we welcomed in 2019 we had a call. Results were in.
This time we got the bus to the hospital. There was definitely going to be alcohol after this visit.
As we were led into the room our consultant was there, a healthcare assistant and the head of nursing. Interesting.
“We know what it is. It’s an extremely rare tumour. It’s not a ‘breast cancer’, it’s classed as a vascular cancer which just happens to have formed in the breast”
“Does it have a name?”
“Yes. It’s called epitheliod hemangioendothelioma”
Try saying that after a few vodkas.
Not for the first time, we had many questions, but again there weren’t really any answers he could give us.
The recommendations had come back that due to the rarity of this type of cancer/tumour being found in the breast, an urgent CT scan would be arranged to confirm that this was still a primary tumour and hadn’t spread from anywhere else. Great. Also, due to the type of cells that cause this tumour we were told that chemotherapy and radiotherapy were no longer an option as in the past they have proven to have had little to no effect against these types of cells. The good news however, was that compared to breast cancer, the prognosis was considered to be a lot better. They were still waiting for confirmation that everyone was still happy with the clear margins from the lumpectomy so it was goodbye for now and we’ll see you next to discuss the results from your CT.
The head nurse led us into the bad news room where we tried to digest this turn of events. In her own words…
“Your results and diagnosis came through on Friday and we have all spent the weekend researching it because no one here had ever heard of it”.
That really doesn’t inspire the greatest amount of confidence if I’m honest!
We were literally told to go away and Google (which goes against everything I tell my own patients) but that due to its rarity, there was little information to be found even on the Internet.
We hadn’t even left the breast clinic before the wife was on the Internet. The nurse was right, there wasn’t much to be found apart from it being very rare. So rare that it only accounts for 1% of the cancer population.
“I always knew I was unique” said the Mrs.
“Trust you to be difficult” I replied.
That afternoon we got drunk and went to see Benidorm live at the cliffs pavillion. We laughed so hard our ribs hurt and our jaws were aching. Fuck you cancer. Rare or not. Just absolutely fuck you đź–•
Mr&MrsP and the big C 