Sunday 23 April 2017

Autism and Cancer Treatments

About 1 person in every 3 will have a diagnosis of cancer, at some point in their life.
That applies to 1 autistic person in every 3 also.

I did.  In early 2011, I was told that I had an aggressive type of breast cancer.  I am talking about it here because many healthcare teams currently lack knowledge of autism.  And the success of treating autistic patients relies on teams knowing enough to make it doable for us.  And knowing that we may respond differently to medication - but that's another topic.

I'm not a great fan of using me as an example.  But, this is important.  It may save a life or two.

The journey, for me, started with a 14 month endurance course...through painful and scary test after test, scan after scan. An operation to put in a chemotherapy-delivery-device under my skin.  Eight lots of very powerful chemotherapy.  (Which, oddly, I didn't find so bad).  Surgery.  Radiotherapy.  Herceptin given in hospital every three weeks. (This supposedly milder drug hated me).  All the visits to maintain the under-the-skin port.   The re-tests, re-examinations, re-scans.

I was left with the usual end result; total hair loss, exhaustion, nerve damage from the chemo.  The possible long term effects of all of that treatment are still fairly unknown to medics.  Mine have included a heart that has developed an electrical fault... permanent nerve damage to hands and feet, pain from the surgery, an absolute dread of anything medical...and (to add to the excitement) last year, a further local tumour,  caused probably by the radiotherapy more surgery.  That one was rare enough that it had to be diagnosed by the sarcoma specialists after many weeks of testing, in case it was an even more dangerous form of cancer.  Thankfully it was not.  Three months of sickening dread.  I'd run out of ways to 'do cancer'.  I just couldn't imagine how to do it all again.

Breast cancer doesn't have a 'cure'. A lot of cancers don't.  No sensible team member is ever going to say, "You're cured!".  The best they can say is, "No evidence of disease", because a lot of cancers are good at hiding, for years.  If you've not been a cancer patient, there isn't a way to explain the emotional impact.  You're not cured.  You go from year to year with more re-testing to see if it's back.  

More research is emerging on PTSD, on possible long term cognitive difficulties, on long term pain and other side effects.  We have almost no research on how that alters when the person is autistic.

It's long journey.  It starts with that first shock of the possibility of cancer...and it continues for the rest of your life.  Yes, the odds of the cancer returning get lower and lower, which is good.  I had a lovely team, at the start, which is also good.  But I can safely say that the net effect of all of it was so traumatic for me that I wondered whether it would have been kinder to have just killed me.  I've wondered it a lot, actually.  I am of course pleased to be alive so that I am with my loved family and friends.   But...even so....

That may sound like a terrible thing to say.  In fact, some friends have been outraged.  Yet, it's true.    And we have to understand autism to realise the double impact of much of this.  At the time, I got through a lot of it on 'automatic'.  Autism's ability to not process emotional impact at the time can be a blessing.  But, it catches up with us eventually. Well beyond the timescales most medical teams expect.  And beyond the timescales that friends, family and supporters expect, too.

The picture shows the difference between a medical room that others might see, and the medical room as I see it.  It can only show one element - the colours.  Under fluorescent lighting, it looks like a strobe light, a kaleidoscope of colour to my vision.  Autistic people process sensory information differently.  Each person will have their own profile for this. The noise in a hospital, deafening.   The smells, overpowering.  Standard checkups involving a lot of prodding and examining, which registers (for me) as intense pain.  Things are already difficult for others are torture beyond words for a lot of autistic people.  Torture that so often ends in PTSD-like end results, and someone who can no longer engage with healthcare.

Especially in a system that is so vague.  "Come in for an appointment at 9am, Ann".  Except, sitting in reception at 9am, there are still five people to be seen before me.  I'm under fluorescent lighting, in intense noise, intense odours, dreading the random, unknown examinations ahead of me....desperately practising what to say, what to remember....and the clock now shows 9.15....9.20.....9.25....9.30....9.50....10.15....10.20...10.40...the panic is beyond explanation.
My brain is now unable to remember words and ask good questions.  I'm now in 'total automatic' mode.  "How are you, Ann?"  "Fine thanks"  "Any problems?" "No, none thanks".
Those aren't the correct answers.  

I'll repeat that again - those aren't the correct answers.  

Those are all my brain can remember, and all I dare case someone does something else painful to me, whilst I am already now in intense pain. The thing is, I mask.  I don't shout, scream, run, or look angry.  I mask.  Like most autistic people, I have learned that I must smile and be nice, or bad things happen.  Smile, be nice.  Smile more, be nice more. Smile and smile.  And the worse things get, the more I smile. The more jokes I try to make. 

The only indicator is my blood pressure, which starts to go 'through the roof' to use a phrase.  It has to be catastophically bad before you will see me in tears, or totally non-verbal.  The teams saw both.  But, they see a lot of people in tears and didn't realise that was a sign of catastrophe for me.  They were unaware of autistic difference and my profile.

Teams, if you have an autistic person in your clinic, and you have left them there way beyond their appointment time, you will usually get total nonsense as answers.  If you are relying on those answers, heaven help the outcome for that person.

We need to take autism seriously.  As seriously, in hospitals, as we take someone being a wheelchair user or Blind.  Yes, I'm very well aware that my friends who use wheelchairs, or are Blind, also often have a tough time.  But often there is some understanding of what a wheelchair is, and that it can't go up stairs... and what 'blind' means.   I lost track of how many times I said, "I'm autistic", and the medical person just stared blankly at me.  "What do you do, then?", said one, confusingly.   Er.....mmm..... <wondering if there should be a special song and dance involved>

I have had 20 minute discussions with receptionists who say, "No, there's no way you can wait in a room without fluorescent lighting.  No, we can't contact you if you wait outside.  You can't access the toilet block because the smell is making you keel over with sensory assault?  Too bad. There's no way I'm letting you use the accessible one.  That's for wheelchair users."  "No, you can't have first or last appointment...".  "No there's nothing on the system to say you're autistic or what you need....Well, you may have sent it all in three times, but it's not here".  All whilst standing in sensory hell.  By the time I have negotiated that, I can't speak when I'm in front of the doc.  If I can, we're back to 'automated answers' again.   Almost everything is a battle.  And a battle autistic people are not set up to win.  I'm grateful for a GP who understands.  But, getting to see that could be weeks.  

I often had to train the staff, as well as being the patient.  Whilst terrified, and in pain, and sometimes non-verbal.  The staff were often very nice.  That's not the point, though.  This isn't a neurotic attitude; it's sensory pain and social exhaustion resulting in intense brain overload.  A physical outcome, not something in need of reassurance.   Sometimes 'very nice' is its own problem.  A comforting hand on an arm can register as intense pain, for some of us.  It helped me...but the teams simply had no idea that it might have been a problem.  Nor the intense eye contact, the 'reassuring' soothing chatting...

The heroes, on medical teams, for me, were ....The breast care nurse.  She was fabulous.  She knew I liked hugs.  She hugged.  It was like an oasis of care and humanity, in the middle of sensory hell.  (No, I don't like being hugged by total strangers.  I knew her, I trusted her).  And my surgeon, who is a total star.  And my original oncologist, who was simply so kind and reassuring.  

There are 'hospital passports' available now, so that we can write down what helps, and give those to each person we see.   Search online for 'autism hospital passport'.  But....if you're a cancer patient, every visit could mean seeing 3-10 different people each time.  3-10 different people who each have to read the document, and take note of it...whilst looking after all the others.  Guess what happens, in reality.

We need teams to have proper training on autism.  Truly we do.  Not just for cancer, of course, but generally.  Teams that include the front line staff, the first-contact people.

Too many autistic people die very very early. We know this from the Autistica charity research recently.  On average, 16 years early.  Too many cannot access healthcare, at all.  It can be as inaccessible as putting a clinic for wheelchair users at the top of a flight of steps.  

None of us need to have a much greater chance of dying from cancer.  Or anything else.

Let's work together to find the best answers.
An appointment system that allows us to have a set time...first appointment?
A safe quiet place to wait.
Or a text to say, "Come in now  -  the doc is ready to see you".

Or a known trained contact who can interpret and assist.

I am glad to work with hospital staff, providing training and answering questions.  The team at Autism Oxford UK does a lot of this kind of work, using autistic professionals who can speak at first hand about our experiences.  Other good autistic training teams exist, of course.

If you want to save a third of the 2 million autistic people* in the UK from a horrific set of experiences with cancer, or other major health conditions, make that call.  Look at your budget.  Authorise that training.

Did I learn anything from having a very deadly form of cancer?  Yes.  I learned who my real friends are.  They're still in my life.  

I learned that actually, it doesn't matter if you're not young with a size 10 perfect body.  And people who are only interested in you if you fit that profile are not friends at all.  Now, I get to each birthday and think, "Wow!  Made it!"

I learned how precious every single day of life is.  And that sometimes pain and fear actually is unbearable...and that's OK to admit.

I learned how unshakeable my faith in God is, no matter what the likely outcome (and how important it is to offer autistic people their choice of following a good faith, if they so choose).   

And I learned not to take nonsense from people any more.  Because every moment of my life is a moment I never thought I'd see.  Who knows how much life may be still granted to me. Lots, I hope.  But I don't know.   I know I won't waste it with people who just want to waste my time and use me or my autistic friends for their own 'agendas'.

It's led to some good decisions.

Would I go through it again.  No thanks.

Thank you for listening.

*Yes, it really is about 2 million.  See the US research showing it's 1 in 30 children whose parents have been told their child is on the autism spectrum.  Ask teachers - there's about 1 in every class of 30. There always has been.  But we were rubbish at diagnosing it.