cancer & aspergers

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I am experiencing great difficulty with radiotherapy having been re-diagnosed with cancer after five years in remission.
After seven of the designated 28 sessions, I am in strong aversion/avoidance mode and want to stop the treatment permanently.
The professor in charge has given me a couple of days of to make up my mind.
The reasons for my negative reaction to something which is supposed to save my life appear to be:
1. My heightened bodily sensitivities as an aspie;
2. The lack of logic about being pumped full of toxic material, my immune system to be destroyed (hopefully just temporarily), and my hair made to fall out, in order to get well. Like Hello?
3. The lack of information given to me before it started - all I had was some information I downloaded from the internet and a booklet by my local cancer council, both of which were sanitised and clinical. In other words, not the real deal;
4. I had no one to go with me to my first appointment with the radiology professor. I was still debilitated and unable to think clearly and be assertive after the surgical biopsy two weeks prior.
5. Fear and anxiety associated with stories I am hearing now about the risks associated with this form of treatment, e.g. other organs being damaged, the cancer moving somewhere else, and even the radiotherapy causing other cancers that surface 10-15 years later.
5. No medical officer I have dealt with in the hospital knows anything about AS. A registrar told me he thought it was an 'excuse'.
I am 64, diagnosed AS four years ago, a couple of months after my surgery for uterine cancer.
At that time, it appeared to have not spread to my lymph nodes, but it had and this is where it is now.
This is all happening in Sydney, Australia.

I had cervical cancer last year and had to go through a hysterectomy, 25 external radiations, 3 internal radiations, and 3 chemo treatments so I have an idea about how you feel. It was such a relief to have it be over. I have to do my first post treatment pet scan in a couple of weeks and just hope it's clean. I don't want to go through all that again.

Maybe you should read "Making the Cut" by Mohammed Khadra, then try "The Patient", also by him. He is an Australian doctor who wrote this semi-fiction based on his experience becoming and being a doctor in Australia. It is very readable (one chapter made me cry like a baby) and eye-opening. I suggest reading 'Making the Cut' first because it is a better read anyway, and will give you a a fright, as well as a heads up.
When I read your post, I thought of 'The Patient' and really didn't want that to be you.

I really don't like the approach they take to cancer, and hope they come up with something better soon.
I am also really sorry you are going through this.

My wife was treated for cancer last year, with chemotherapy every two weeks for six months and then two months of radiation. It was an ordeal for sure, but now she is still clear (waiting on latest PET scan results). The chemotherapy involved a dna toxin that kills your fastest growing cells, meaning the cancer of course, but also things like hair. Her hair actually came back as a light brown vs black before the treatment.

My coworker's sister on the other hand is sadly is in stage 4 lung cancer and her body didn't repond to treatment and they have ceased since last July. Since stopping treatment they didn't think she would make it past December, but she is still going, seemingly unaware of it. It has since spread to her bones and brain, causing symptoms akin to Alzheimers and they warn that she could break her leg easily through a simple fall (with her being in her mid 40's).

There was one particular lady at the center who has gone through colon, breast, and now brain cancer and is still going with treatment and has maintained relatively good health otherwise and a number of years of remission between them (5-15). Due to this, I would suggest continuing the treatment if the doctors are optimistic of the outcome. It is a very rough process with possible lasting side-effects, but the alternative is not very good either.

Thank you to everybody who responded to my post.
Each of your comments was a special gift for me.
My overall impression was how truly amazing some human beings are.
How they will fight to the death to defeat death.
Maybe at age 64 I'm just not motivated enough to do this.
I'll definitely read those two books.

I am sorry you are going through this. A couple of days to make such a decision seems so inadequate. I am 64 also and I don't know what I would do, but you are already one quarter of the way through it so I would think that continuing it might be best. I wish you well in whatever decision you make.

Chemotherapy is intended to kill rapidly-dividing cells. Cancer cells are rapidly dividing, but so are some normal cells, such as hair cells and some types of blood cells.

OP I can't begin to imagine what you are going through. It must be terrifying. 64 isn't that old these days, and I think if you can, you should take the treatment. You could ensure you have an ultra healthy diet, lot of fresh fruit and veg smoothies, drink lots of filtered water, listen to calming music and meditate and your body may get the strength to deal with the chemo. Don't give up. Sometimes you have to go through the storm to come through to the calm on the other side. If you don't try you will never know what might have been. It's also really important that you stay mentally strong, if you give up your body will follow suit. I truly wish you all the very best of luck and hope the treatment cures you.

Thank you for more kind words of encouragement.
I'm trying to work out what role having Aspergers has played in the predicament I'm in.
I think it was responsible for enabling me to be led by the nose by doctors.
For just doing as I was told.
As an aspie, I am not assertive.
I can think for myself, but am not good at doing this 'on my feet', when dealing with other people.
Even though I had been previously advised by a counsellor that I could choose not to have radical treatment, I did not raise this with the oncologist.
She simply directed me to the radiographer, as if it was a foregone conclusion that I would want to have radiotherapy.
So I was not given the opportunity to make an informed choice about my treatment, or lack of it.
Another aspect of being vulnerable as an aspie, a self-isolating recluse, was not having anybody to be with me when I was with these doctors.
That made it easier for them to make decisions on my behalf.
I have found that people who don't know anything about AS think aspies are either mentally defective or have a mental illness.
Maybe this is why they have taken it upon themselves to make decisions on my behalf.
In other words, they have acted out of ignorance.
I often feel like a pioneer as an aspie in Sydney.
Having been diagnosed late in life, I am at the coalface, well in front of the large wave of aspies who were diagnosed in childhood and who are now in their late teens/early 20s.
The current ignorance about AS among doctors will be forced to improve dramatically once they hit the scene.
Meantime I am very much on my own.
That's why I appreciate your support.

I am sorry that you have to go through this. I went through chemo in 2006, so I was just a little older than you. A big part of my personality was/is a little professor. And I just shut that down and did what I was told. I asked no questions about what would happen, what I should look for, how am I doing, when will we know something, any extra things I can do... none of that. And I never even Googled my cancer. I tried to be friendly, and not anxious or depressed with my doctors, nurses, and my family. I just figured I would just scare myself, and maybe vex my caregivers if I displayed my know-it-all side.

Well, you are not alone. At WP we are routing for you. I hope you are able to continue to get the support and advice and knowledge you need to get you through this thing with peace of mind.

Thank you again.
I think I was being the 'little professor' at first, just following orders, intending to do so until the very end, 28 sessions over 5-6 weeks.
But after the first three sessions, the negative bodily sensations started happening, a scrambled brain so I couldn't think, energy escaping through my feet, and a strange smell.
I also began hearing negative stories about radiation (not necessarily true) that set off fear and confusion.
By the fifth session, I was starting to feel very aversive and avoidant.
I voiced these feelings to the radiography staff and to the professor, wanting to try and resolve the situation before my avoidant behaviour became permanently locked in.
Being a public patient, I am in the hands of interns, medical students, who are not appropriate people to assist me.
I think I need to get a second opinion through my GP.
What has occurred to me as a result of this experience is that hospitals need to have an on call advocacy service for patients with disabilities.
There is an on call service for people who need interpreters, and an advocacy service could operate the same way.
There is no support at all for adults with Aspergers in Sydney.
The peak autism organisation, based near where I live, only assists children.
There is a dedicated Aspergers association in Brisbane, so it might be better there.

I cannot give you any practical advice, but I'd just like to send you a word of encouragement from Perth. I thought my life was tough (it really is due to ostracism etc), but I can't even imagine how hard what you are going through now could be. I hope you stay strong and overcome this difficulty.

I thought Sydney would be more progressive in autism-related issues. Perth seems pretty behind. I'm yet to be diagnosed. I tried to find some local groups/organizations etc, but I can't find any. Queensland seems to be pretty good.

It is very stressful having cancer treatments. You have no control.

I'm not sure what you want from the people who are handling your treatments though. Like I mentioned, I asked no questions... and that worked okay for me. I don't think telling my caretakers that I had Aspergers would have changed anything. But if I told them that I was feeling depressed/anxious, and avoidant... that would have changed things probably, but I don't know what they would have done... probably given me drugs to calm me down.

I lost my sense of smell... and pretty much taste too, but they slowly came back over the next couple of years, and in someways more sensitive than ever.

Just to let all you supportive folks know that things might be looking up.
When I finally heard back from the oncologist late yesterday (Thursday) afternoon, after telling her secretary last Monday morning I wanted to speak to her, she told me the radiologist could refer me somewhere else.
That sounded like the best option.
Being always in the hands of students because the consultant was always in meetings or overseas made me feel like I didn't matter, as well as unsafe.
So today I went to the radiology oncology section of a new hospital near where I live, and asked if I could be shown around to familiarise myself with the place.
I think I was traumatised at the other hospital, so this was a good idea, to prepare myself.
They were very nice and gave me the name of the doctor I need to see.
The radiologist at the other place had told me I had to speak to him today, to tell him what I wanted to do, so I left two messages for him but he did not respond.
As far as I'm concerned he is the weak link in the chain.
Aspies can be very intuitive and perhaps that was what was happening when I started to feel avoidant.
It felt like a warning that I was in danger.

I'm pleased to report that I'm now out on the other side of the storm that has been erupting around me for the past couple of weeks.
I have good news and a valuable insight.
Two weeks after quitting radiotherapy because I couldn't get any medical staff to sit down and tell me about possible side effects, I went to another hospital.
I was intending to continue the radiotherapy, but only after I was given some straight answers about the possible outcome.
The much more professional radiology oncologist I saw there told me I had done the right thing.
That my form of cancer, only experienced by 5 per cent of women, was incurable, and that radiology would make no difference.
Studies had been done that had proven that.
I'm now joining a clinical trial that involves taking a tablet daily for hormonal reduction that reduces the size of the tumor(s).
Now that I've had some time to process what was going on at the other place, I realise I was forced into the radiotherapy and treated like a dumb animal instead of a human being.
The medicos were making all the decisions on my behalf instead of discussing them with me.
Did this having anything to do with the fact that they knew I had AS?
Because it is in the DSM-4, did they think I had a mental illness and was not capable of making my own decisions?
Alternatively, it may have resulted from the new regime that was put in place after a very approachable professor left whom I always saw.
Instead I had to see medical students, with the radiation oncologist popping in for a couple of minutes to say her bit.
At no time in a year and a half did she sit down with me in her office and have a one to one talk with me.
The moral of this story for me is:
1. Be aware when this type of thing happens and challenge it; don't be unassertive.
2. Always have someone capable with me when I see senior medical staff.
I'm much happier now, no longer overwhelmed by anxiety and confusion.