The hospice and cancer Terminology

There is a whole group of words used around cancer that frankly, I just can’t bear….. at all.

Like previously if a muggle uses one of those words to me, I would get quite annoyed. It is a sensitive subject.

I have now decided to grab those words by the balls and explain why ‘cancer folk’ may not like them either.

Its a scary topic, from the word go, your oncologist and medical team have a job of delivering the worst news ever treading so carefully in not sending the patient into a massive mental downward spiral.

Every patient is different, every case is different. Some want to know every single detail, some don’t.

Patients often get annoyed with really stupid statements that friends use. Sometimes, they are not really stupid statements…. they are stupid people!!! Im just saying!! It’s been done many times…. oh my aunt had breast cancer….. she died! Yes really helpful you moron. Go away now. People don’t say that about Bile Cancer cos they are like …. you what????

You will be surprised how suddenly everyone changes around you when you are diagnosed. First time…. second time…. doesnt make a difference! Some folk just can’t handle it. That is fine. If I never had cancer, would I know the right thing to say? Would I know what to do to help a friend? Who knows? Therefore, I don’t get annoyed with those who I know genuinely care about me.

There are a handful of clueless folk walking around who honestly just need to get with the program or just stay indoors!!! Whatever their age, I just don’t think they have any life skills or experience !!

There was one the other day, I have to share!!! Started again with, “All clear now?” Followed with “But, I thought breast cancer is normal”. Honestly…. this was said to me last week. For a start, I don’t have breast cancer and if you think going bald and having your boobs chopped off and daily radiotherapy for 3 weeks and survival tablets for 5 years is “normal” ….. you really need to crawl back into your protective shell and very swiftly move arm’s length away from me for your own safety!!

I digress, I was supposed to be talking terminology:

Prognosis

Is just a horrible word. It even sounds crap. A prediction…. someone’s guess… based on years of “research”. Anyway just a rubbish word. My medical team never offered it and I never asked. Sorry but one size doesn’t fit all!

Terminal

Unless I am at at the airport, I’d rather not hear this word. I challenge anyone to explain it to me. I ask each and every one of you…. are we not all terminal or are there some folk amongst us that will live for a million years …… yep so we are all terminal really aren’t we?

Remission

“I’m in remission”. I really just don’t know what this word even is!!! I guarantee some folk that use it don’t actually know the meaning. I just googled it …. a temporary diminution of the severity of disease or pain. In my opinion, I don’t think it really helps much.

Luckily, none of my entire team have ever used any of these words with breast cancer in 2013 or with bile duct now!! I think that has been a vital part contributing to my strength!

Ok…. so now the point of today’s blog!!

Hospice

What does that word mean to you? To me, it meant end of life care. When you are too sick to be looked after at home. People are moved into a hospice so they can have a bed and 24hr care. Well, it is not that at all….. you can go to a hospice at anytime during or after cancer treatment for help or advice on various things.

It can be complimentary therapies, counselling, seeing a nurse, meeting other cancer patients or just somewhere to go for a ‘cup of tea’!!

So anyway, when Zoe and I were at Penny Brohn, we mentioned how difficult it was to get help anywhere….we have been trying for a few months now. I’ll expand on that point in another blog or we could be here a while!!

So PB said we could get all this at our local hospice. We both looked at it and were like….. nah…not doing that. Neither of us were ready to visit a hospice just yet. Hospices are for really sick people right?

2 weeks on and neither of us have managed to get an appointment for complimentary therapies…… however over the last few days we both did manage to get an appointment with our local hospice, today…. on the same day!!!

I managed to park up on the road outside the hospice. For a start there are over 20 or more Addison Lee cars everywhere so I had to park and walk. I really thought…. I might need to have a word…. seriously, there is a hospice here. There was loads of space further down the road where these taxi gymnasts could park! It would mean the patients dont need to park as far! Anyway!

I thought of messaging Zoe to tell her I’d arrived and then taking a picture but I was all a bit bent out of shape with the whole ordeal so I did neither.

As soon as i got in and sat down, there was a book and I opened it!!

It immediately made me smile and i progressed to taking the picture!!! This was the picture Zoe did at PB!!! It was all connected!! I suddenly felt at ease and continued with my appointment!

I have managed to book in for reflexology next week but it is in Uxbridge which I am glad about as I am not sure about how I feel about frequenting the hospice.

We were both quite brave today and it turned out to be better than we had anticipated! I didn’t take a picture of the hospice today….. but Zoe did!!