Author Archives: Genesis Light Foundation

(Written from the view of the patient)

Hallucinations Experienced By Patients

After brain surgery many patients experience some or a lot of hallucinations. When we speak of hallucinations, it can be described as sensory experiences. These experiences appear real but are created in the patient’s mind.

A couple of examples are:

• Hearing voices that no one else can hear. These voices can be those of friends, family members, strangers, nursing staff, and the like. You can even hear an entire conversation or even think you are having an actual conversation with someone who is not there. The voices can be neutral, kind, angry or rude.
• The person may also hear someone walking in the hallways, or hearing repeated sounds.
• Seeing images and people who are not real. You could see things such as animals walking around; people you may know or haven’t seen in a long time; imagine being in a completely different room, environment or time.
• They can experience an entire event or situation that can cause stress, paranoia, and worries.
• Experiencing vertigo. Your spatial awareness of your body, feeling touch or movement in your body.
• You might hallucinate the touch of someone’s hand on your body.
• At times the person may feel that bugs or flees are crawling on their skin.
• The person could be infatuated about time.

Regarding brain surgery and post-op recovery Hallucinations are generally caused by:

• Medications.
• Seizures.
• Epilepsy.
• Brain cancer.

There are a couple of things family or friends can do to assist their loved one if they can see the person is hallucinating:

• Stay with the person and do not leave them unattended until they are properly assisted.
• At times, in severe cases the person may experience fear and paranoia that can lead to dangerous actions or behavior. It has been known then that medical staff would then need to use soft restraints to protect staff and the patient from hurting themselves and others.
• The person may need a personal care taker who has experience with brain patients.
• On a daily bases the person needs to be assured that they will be okay.
• The person needs to be informed about their actual situation so they can better understand what is happening to them.
• Always try and be honest with the person while they are having an hallucination – make them aware of what is real and what is not.
• Explain to them the logical reality. Many times the hallucinations are very illogical, and so the person needs to be made aware of this fact.
• Assure them of where they are and what day it is and what they are doing there.
• Give them coping strategies, particularly for when they’re feeling scared or paranoid.
• Make sure the person gets enough sleep.
• Do not appear as being afraid or shocked about their hallucinations.

Patient who have brain cancer, may experience long-term effects of hallucinations. In these cases doctors will suggested medication treatments, counselling and other treatment plans.

When the person is left untreated, or un-counselled, the person can end up with server depression and may even think they are untreatable because there is something wrong with them – when this is not true. Assure the patient that they will come right and that everything is fine.

Most of the time brain surgery patients are not well informed before surgery of these post-op challenges such as medication-induced hallucinations. Information is power – it can save a lot of people from unnecessary stress and anxiety.

(Written from the view of the patient)

A Story Shared – Challenges Faced & Overcome

For 20 years I was sick, not knowing what was the matter with me. 10 years ago I was diagnosed with depression, fibromyalgia and burnout. I saw every possible doctor, which meant more medication. 

After more tests were done in November 2021 I was diagnosed with cervical cancer. At first it was a shock. I was not prepared for this. At age 15 I had lost my Mom to cancer. Many images of the past returned where I saw what my Mom had to endure. Now it was I, at age 45, I was notified that I will need to have surgery done to remove the cancer – a procedure called a radical hysterectomy. The reality that I will no longer be able to have kids was something I needed to work through and process by myself. The surgery was a success. However, the Oncologist still wanted me to go for further treatment. That was a huge challenge for me.

After the surgery I was still dealing with not being able to walk properly; no lifting of heavy things;  or driving my car.. It was hard. I was fully dependent on others. I felt robbed of my independence. Even though I had an amazing support system around me, I still felt robbed of my life. Funny enough I never asked the question: “Why me?” I kept telling myself I’m not just a cancer survivor, I’m a cancer overcomer.

Treatment started – 5 chemo sessions and 29 radiation sessions. During the treatment sessions I told myself, “I’ve got this.” Or so I thought … The nursing staff, doctors, and other cancer patients were absolutely amazing. They became my extended family. The cancer lounge became a safe space where age, race, sex and where you come from, didn’t matters. There was no judgement, only just love and support.

After a few chemo and radiation sessions, the side effects started. Something I was not prepared for. Nausea, diarrhea and fatigue kicked in. Something you cannot explain to others. You have to be near a bathroom 24/7.

I became very weak with chronic fatigue. I struggled to have long conversations with friends and family. My dad struggled to understand it. Dad has been in denial since the first day. Isolation started to creep in. Financially it was tough, as I had not been prepared for big expenses. At one stage I had 3 panic attacks which was a first for me.

After surgery and treatment, I slowly started to return to society. This is the time when I needed people the most. Re-entering into society was hard. After 3 months of a totally different lifestyle I had to adapt. At first it was a shock to the system.

One important lesson I learned was to pace myself. Start small and everyday add a little bit more. Go for a short walk in a beautiful tranquil place. Hug a tree. Listen to motivation talks.

People expect that everything returns to normal once you have completed all your treatments. That is not always the case. Don’t feel guilty by saying NO to things and to people. Listen to your body. Give your body enough resting time and be gentle to yourself.

(Written from the view of the patient)

Feelings of Abandonment By Patients

After brain surgery many patients experience feelings of abandonment and rejection. There are a couple of medical reasons for this:

• The brain has experienced surgical trauma and swelling.
• Disrupted sleeping patterns.
• Chemical impact of all the diverse medications used during and after surgery.
• Logical thinking is temporarily or permanently impaired.
• Temporary short term memory impairment – thus they forget that people came to visit them.
• Hallucinations cause by swelling of the brain and the medication. These can be positive or negative hallucinations. Also these hallucinations can be experienced as both visual and audible.
• Experience fear and anxiety.
• Physical weakness due to surgery and medication.

The emotions are very real to the patient.

How to assist the person:

• Remind the person to be patient with their healing process and allow them to have time to heal.
• Allow the person to rest and sleep as much as possible in the first 3 months.
• Assure them that over time they will heal and come right. They must not worry. They need to know they will get better.
• Keep reminding them of the truth and the logical context of their thinking. In a constructive and kind way help them realize if something makes sense or no sense. Especially if they experience hallucinations. It does not benefit the patient to play along, otherwise they will not be able to distinguish between what is real and what is not real.
• Make sure to tell the person what time period they are in, where they are, and why they are there.
• Help them feel safe and protected and cared for. Use positive words and have a positive attitude.
• Treat there emotions with respect and assure them of the truth, and that they are loved.
• Gently reassure them that there is nothing wrong with them. As the brain heals and the swelling comes down, they will feel better.
• Give them constructive motor skill exercise and goals to work towards, according to their ability at the time.
• Make sure they have mental and cognitive exercises and goals.
• Repeat the above every day if need be – so be very patient with the person.

The events after surgery can also bring about the emotions of abandonment and rejection – these events may be the following:

• No family assistance.
• Isolated from friends or family who live far away or abroad, and cannot, or choose not to come to assist the person.
• Family or friends don’t know how to communicate with the person. They may not understand what is happening to the person’s changes responses. (Ignorance in this regard.)
• Family or friends do not know how to interact with the person anymore.
• Not having a safe place to recuperate and rest.
• No one to assist with monitoring medication intake and physical wellbeing.
• Financial burdens and bills.
• The lack of basic counselling.