Amanda Neil

Amanda Neil - Profile

Sadly, Amanda passed away on August 22, 2011. She was surrounded by her husband and family. Amanda was an inspiration to anyone who had the chance to meet her. She will be greatly missed.

Name:Amanda Neil

Age:36

Hometown:St. John’s, NL

Do you work? I am currently not working because of ongoing chemo treatments. I was 32 years old when I got my first diagnosis.

Your Cancer experience:

How did you find out you were sick? What led to the diagnosis?

Near the beginning of 2007 I went to my family doctor thinking I had hemorrhoids. She gave me ointment that had no effect. I went back to her a couple weeks later and she gave me suppository to try that didn’t work either. The third and last visit another couple weeks later she gave me a script for something else that just took the edge off the pain but didn’t really have much of an effect beyond that. So she sent me for a colonoscopy which took several months to get.

Finally after about five months of pain and discomfort (and trouble going) I got my scope. I remember it was on a Wednesday. The doctor (Dr. B) said there was something going on for sure and she set me up for another test for the Friday (MRI, I think). Then on the Monday I had a Flexible Sigmoidoscopy. While in the recovery room the doctor came out to check on me and talk to me about the procedure, and what he saw. He said that he suspected that the problems I had been having were because of large tumor around my colon wall but would not or could not confirm this until the biopsy results came back a few days later. This all was happening a week before I was supposed to be on vacation.

A few days after the flex sig, I boarded a plane from Toronto to Newfoundland with a stopover in Montreal. While I was in the Montreal airport I got a phone call from Dr. B who did the first scope. She told that the biopsy results confirmed that it was in fact “advanced rectal cancer” and when I returned to Toronto, we would start a treatment plan.

I was traveling by myself and to get this kind of news over the phone and in a strange city like that was a real shock (like getting hit by a freight train). I just sat on the floor against a wall and I started to cry uncontrollably. I was by myself in the world that day, so alone and scared.  A kind lady saw me crying on the floor, gave me a little packet of tissues and tried to talk to me a bit but I was just too upset.

The first person I shared this news with was an Air Canada employee who bumped me up to first class so I could be alone with my diagnosis. The nice thing about that was I drank about five glasses of red wine and by the time I arrived in NL that evening I was feeling a little better. I rested or tried to compose myself for when I met my family at the airport. My sister asked me if I was ok because it looked like I had been crying. I took her aside and told her the story of my day. The worst day of my life!

I had just started a new position with my job and was in the process of ending my relationship with my boyfriend (we lived together for five years). I was looking for a new apartment and I was feeling pretty good about life then I get a huge kick in the butt (literally) with cancer which means I would be off of work (with no compensation) and my plans for moving out would be put on hold for a while.

What was/is your diagnosis?

Rectal Cancer

What year was it? What was your age at the time?

In which Hospital(s) are/were you treated?

Princess Margaret Hospital and St. Michael’s Hospital in Toronto

What were your first thoughts when diagnosed?

I thought “Why is this happening to me and why now.” I was starting to make positive changes in my life and things were looking up.

How did your family react?

My sister kept her cool though I could tell it was upsetting for her to hear my news. Once my luggage was collected and we were in the car leaving the airport, my sister and I told our parents about my news. I don’t remember their reaction but I know it was a shock for them, too.

How did your friends react? Were you treated any different?

Friends and family I think treated me a little differently for a while but once they saw I was getting back to my old self, they followed my lead. My family still tends to coddle and fuss over me a little sometimes but I think it’s because I live so far away from them and they don’t see me very often.

My friends have been very good about keeping things normal and I am glad I can talk to them openly about my situation and experiences. They are always looking out for me. With chemo I could not have anything cold to eat or drink so if we were out for dinner, they made sure I had no ice in my drinks and stuff like that. Everybody has been very good at helping me stay positive through it all. And one of the most special things was when one of my best friends spent part of New Year’s Eve with me in the hospital. They brought hats and noise makers and everything!  I was pumped up on lots of drugs and antibiotics and stuff but it was still a special night.

My ex was a little supportive but not really emotionally there for me (why we broke up in the first place).

What did your treatment consist of?

In September, I had a laparoscopic procedure to move my ovaries.  To preserve fertility, they are now sitting up near my kidneys and out of the field of radiation. This is a one-way trip for the ovaries.  I woke up on the maternity floor after what was supposed to be a day surgery, which was depressing for me.  I stayed overnight because of some complication the surgeons encountered but went home the next day feeling tender but ok.

Starting sometime in October, I began what was to be five weeks of daily radiation at Princess Margaret Hospital and slow infusion chemotherapy at the same time through St. Michael’s Hospital (all my surgeries would be here as well). This was to shrink the tumor which was measured about eight centimetres, or taking up about 80 per cent of my rectum.  The tumor had shrunk down to about two centimetres and then I was ready for the big surgery.

In December, I went home again to visit my family.  My grandfather was very ill with cancer also and when I saw him, I knew he would not see the New Year.  My mom came with me back to Toronto and was with me when I had my surgery on Dec. 12th of 2007.  The surgery went well though it was a bit of a challenge (location of the tumor).  They were able to save my sphincter and I woke up with a stoma I called Toni. They say it’s temporary, but today I still have my little pain in the butt friend Toni Stoma.

On December 23, I got a call from my sister. The only words she said were “I love you” and I said “he’s gone isn’t he.” I knew my Grandfather had died that day. I don’t know how I knew but it was a feeling I had. I was too numb to even cry, with my own prognosis unknown and my critical but seemingly stable condition.

I was starting to feel better and was healing up nicely when Toni started causing trouble. She wasn’t working and it was making me more sick. I ended up with a tube down my nose to my stomach to keep it drained and after about a week or so it was determined I had developed a fistula (perforation or hole inside my small intestine) and everything was draining into my abdomen. I was rushed to the OR for emergency surgery a couple days before Christmas. I had developed an infection that had become necrotizing and it was starting to turn septic. Despite the surgery and the Vac system I was hooked up to, the infection was still spreading so on Christmas Day I was rushed again to the OR for more surgery to clean up more of the spreading infection. By this time I had a pic line through which I was getting my nutrition and all medication.

My mom snuck me a small jar of peanut butter and I would have a small spoonful once in a while and I was allowed to have gummy bears because they would just dissolve, so that was my big treat on the good days.

After two full months in the hospital, I was finally able to go home. I started more chemotherapy that lasted about a year. Then I was given the OK to go back to work. For the most part, I don’t think I was really treated any differently. My co workers were very helpful and understanding in getting me up to speed and back on track with my duties.

What is your current medical status?

I have been on chemotherapy for a year now with no end in sight. My surgeon had decided that my ostomy is permanent so Toni is here to stay. It has been a very emotional journey at times in good ways and bad.

How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?

Not long after I met my husband (we got married on May 28, 2011) I found out that my cancer had spread to my bones with the primary spot being in my left hip. Rob and I met in the late summer of 2008 through eHarmony.  We met face to face for the first time in September of that year. I was living in North York (Toronto) he was living in Whitby (45 minutes east of Toronto). On our second date, I told him all about my cancer story and he said that cancer was not what defined who I was. He stayed around and we had a lot of fun together over the next couple years. Then he started talking about getting married. I was so happy that he was able to see me and not my illness. A lot of people would have run the other way because of the potential liability and stress and negative side of cancer. But he saw beyond that and that’s when I knew I had chosen the perfect person for me.

Nobody’s perfect but we are perfect for each other.

Just after I started my chemo last year, I had a major run in with one of my housemates that made me very upset. Rob was with me this particular evening (having picked me up at the hospital after work on my chemo day). I was so upset by things that I could not even speak, I was shaking and could hardly even breath I was so stressed by the incident. Rob spoke to my landlord and then told me I was moving to Whitby to live with him, away from the insanity of my former housemate. He wanted to take care of me and make sure I was in a safe and healthy environment. That’s when I knew he was the one for me, and that he truly love me despite my issues.

I feel that my life has changed because I physically cannot do all the things I want to do and because of chemo, I don’t have the energy nor sometimes the desire to do some things and with ostomy, I have limitations. I have gone through periods where I get leaks around my pouch and have had to change multiple times a day where my skin has been so sore and I have been afraid and hesitant to go out and do things with friends for fear of getting leaks. It’s like wetting your pants but worse—poop stinks and will ruin your clothes. I carry a change of clothes with me nearly everywhere I got just in case and a couple of pouching changes.

I find that I get depressed more easily about things that I cannot do or am afraid to do because of my illness—swimming, and certain other physical actives. Playing sports, riding my bike, skating are all things that I need to be careful about because of ostomy and the cancer spot on my hip. There are days I can barely walk because of stiffness and pain in my hip. I hate having cancer; I try to be all happy and positive on the outside but on the inside, I am often feeling depressed and it’s hard to be smiles all the time when you are crying on the inside.

Before the diagnosis of my bones, I had started back to work, I was in my new apartment, I was eating right and making healthy changes. I had started going to the gym twice a week with a trainer and was really feeling positive, I was losing weight and feeling good. Then I started having pain in my hip. This second diagnosis was harder than the first because I was feeling so good and making such positive healthy changes in my lifestyle. I really felt that I was being slapped in the face for wanting to be healthy. I went back to radiation treatment for the spot on my hip and started my current round of chemotherapy.

Did you attend any support groups during your challenge?

After my first diagnosis, I did seek out support groups and found one with Wellspring that was for young adults. It was hosted at Sunnybrook which was very close to where I lived at the time. I went to a few meetings but the group was very small and soon it shrunk to no group. I think that support groups are a good idea because you meet people who can relate to your situation and help you learn or understand things better sometimes.

How are you connected with Young Adult Cancer Canada?

I found out about YACC on Facebook, though it was by a different name then. I checked out the site and discovered the organization was founded by Geoff Eaton, whom I had gone to school with in NL. Then I joined up right away because I believed that it was a great group with a great purpose and he was doing a great thing with it!  Thanks, Geoff!