Dealing with my needle (make that all things 'medical') phobia

Yeah, so if ever there was someone unsuited to being a cancer patient, it is me. Those that know me well will understand this. 

Just to give you a sense...

When my GP told me he suspected cancer I immediately imagined having chemotherapy via an IV line and I passed out on the spot and hit my head on a table in the surgery. Apparently I was out for 2 minutes and when I woke up there were ambulance folks there. In an abundance of caution they had to take me to emergency, where I sheepishly discharged myself shortly after getting there. Super embarrassing.

This is not my 1st fainting experience. Let me share some illustrative examples. 

  • I once fainted on top of a very petite little Chinese nurse at a pathology center when I was doing a routine employment screening blood test. She hadn't taken me seriously when I warned her I had a "thing" about giving blood and when she passed me the test tubes of my warm blood to check the details on the labels, I collapsed on her. I woke up with her pinned underneath me. Her mistake !

  • Another time I was at a family reunion event and an elderly relative (Gordon Carlin) was regaling me with a very, very, very detailed story about his knee replacement surgery. I nearly passed out and had to sit down and put my head between my legs.

  • Another time I went to visit a relative (Michelle Carlin) who had a home dialysis machine. She lived in a walk up apartment in Mount Maunganui and as I got to the top of the stairs I was confronted by my worst nightmare - her blood passing through a web of plastic tubes in the dialysis machine. I passed out right there on the landing. On future visits she would put a blanket over the machine for me.

  • Oh, and then there was that time in the Broadway Medical Centre, perhaps my most public display. I gave my usual warning to the male nurse. He chuckled, as if to say, "I'm sure you're not that bad". Silly him. We were having a great chat about something as he went about his work. In my mind I thought, wow Scott, you're doing so well with this. Moment's later I woke up and several people were lifting me onto a bed using a sheet (and sniggering as they did it). Apparently I'd collapsed forward into the doorway that led into the adjoining (very busy) waiting room.

 I'm writing this right after getting back from the 1st of what will now be (at least) fortnightly blood tests. You'll be proud of me, there was no fainting, because they let me lie down. Combined with the chemo I've worked out that I can basically expect to have some kind of needle experience once a week for the foreseeable future. Holy shit. 

I've been listening to a needle phobia hypnosis track on Audible. I'm a semi convert to hypnosis after I went to a hypnotist that a friend recommended. My friend reckoned this guy had cured their smoking habit. I got him to hypnotize me to go to the gym more (don't laugh - it worked for a while). Reading about NLP techniques in a professional context also helped me be less skeptical about the whole hypnosis thing. And I "loose time" every time I do it...so it must be doing something right ? 

You'll laugh at this. I went onto Youtube to find something that might help. I did a search for "overcoming needle phobia" but just looking at some of the thumbnail images in the search results made me feel so dizzy I had to walk away from the computer and put my head between my legs. The Audible search results were so much safer. 

I plan to drink lots of water before each test, and I'm going to buy a dumbbell to  try and make my arm veins more juicy (not to mention further aiding my impending cancer buffness). My nightmare is when a nurse tells me he / she can't find a vein and proceeds to spend 5 minutes tapping and squeezing my arm. 

So, you get the picture. This cancer thing is a challenge for anyone, but for someone with my, ummm, condition, this is going be particularly tricky. I'd welcome any tips.  

 

 

 

Understanding a Stage 4 Diagnosis & Prognosis

First a quick reminder on the four stages of cancer diagnosis: 

  • Stage 1 - this usually means that a cancer is relatively small and contained within the organ it started in.

  • Stage 2 - this usually means the cancer has not started to spread into surrounding tissue but the tumour is larger than in stage 1. Sometimes stage 2 means that cancer cells have spread into lymph nodes close to the tumour. This depends on the particular type of cancer.

  • Stage 3 usually means the cancer is larger. It may have started to spread into surrounding tissues and there are cancer cells in the lymph nodes in the area.

  • Stage 4 means the cancer has spread from where it started to another body organ. This is also called secondary or metastatic cancer.

This is very hard to write but it's really important that my family and friends understand this reality. I'm getting a little tired of the "you'll be fine" and "oh my friend had that and he's fine now" emails. Stage 4 is a different ball game because the cancer is deemed to be "metastatic".

Not very long ago, a stage 4 colon cancer would be deemed terminal. Today there are odds for survival, but I need you to understand that the official published odds are not good...at all. 

Survival rates are provided on curves that look like this: 

F4.large.jpg

As you can see from this particular study, only 10% of people with my stage 4 diagnosis are alive after 5 years. 

Now I am guy who likes data and I need it to process a situation, and I'll confess that this data scares the crap out of me. However I've learned that there are several factors that make the interpretation of these medical stats for the purpose of deducing my individual prognosis very problematic. 

  • New innovations - innovation in cancer treatment is proceeding at a rapid pace. For example one of the chemo drugs I'll be on has only recently become available. Therefore these stats, which are generally always at least 5 years old, don't reflect the latest treatment technologies.

  • I'm not the average bowel cancel patient - Bowel cancer normally hits people much later in life and so the stats are generally based on a very different average patient profile. This is significant because, for example, I'm able to tolerate more aggressive chemotherapy.

  • Every case is unique - The characteristics of every cancer are unique to each patient. For example while I'm am technically in stage 4 my liver tumours are very small.

So, how should you think about my prognosis. Well, you should know that the published odds are very bad, but my doctors are encouraging me to think about my odds of surviving this more as a 50/50 bet (I'll talk more about what "survival" of a stage 4 cancer really means in a future post, but think of it simply as being alive in 5 years....not forever). 

I've been discussing my personal strategy a lot with my family over the last week. I'll write more about this later but I'm essentially developing a dual track mental model to get through the next few months. On the one hand I have to be optimistic (studies show your mental attitude has a huge impact on treatment success), but on the other hand I need to be pragmatic and prepared for the worst, given there is at least a 50% chance of it eventuating. Going down that path of thought is profoundly challenging for a father of three beautiful young children, but I personally think I must go there to get through this. 

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The Treatment Plan

I've been getting lots of questions from family and friends about my treatment plan. I think I have enough information now - after many scans and specialist meetings - to share the plan. There are three components, which I understand are the standard fare for a cancer like this however my doctors tell me that because of my young age and the advanced stage of my cancer they are going to hit me with the most aggressive combination of these treatments

Starting August 14 I'll be doing both radiation and chemotherapy.  This is intended to: (1) shrink the primary tumour to make surgery easier; and (2) halt the growth of the small tumours that they found in my liver, before surgery. 

All of my treatment is being done at the Macquarie University Private Hospital

Radiation

My radiation treatment will last for 5 weeks. I'll just go into the hospital once a day, 5 days a week, for about 40 minutes. The treatment itself is very quick. It's actually pretty amazing. I had to go in yesterday to get small tattoos for the machine lasers to align to every time I visit. 

Note exactly what my machine looks like, but it will give you an idea of what they look like.

Note exactly what my machine looks like, but it will give you an idea of what they look like.

Chemotherapy

My chemotherapy is going to be "very aggressive". My oncologist tells me the combination of drugs I'll be receiving is not that common but they think I can take it because I'm young and otherwise perfectly healthy. I found this super interesting as I had never heard about this before, but apparently we need to designate a bathroom for me because my urine will be so toxic it may cause harm to other family members if they come into contact with it. Crazy right ? For those that are super interested, here is the cocktail I'll be on: 

These will be administered via IV every three weeks and daily tablets. I'm not entirely clear on this but I think this first course of chemo will run for 8 weeks. It will need to stop 3 weeks before my 1st surgery to allow my body to purge the chemo drugs to make surgery safer. 

Surgery

After the chemo and radiation treatment I'll go in for the 1st of two surgeries. This first surgery will likely be done laparoscopically to remove the primary tumour in my colon and the surrounding cancerous lympth nodes. They'll then allow me a couple of weeks of recovery time before putting me on another course of chemotherapy, to keep the liver tumours under control. After a decent recovery period, chemo cycle, and 3 week chemo rest, I'll be booked for a liver resection to resect segments 5 & 7. This will likely be followed by more chemo. 

As you can see, this entire treatment plan encompassing radiation, chemo and both surgeries will stretch into late 2017 / early 2018. 

 

Our July Surprise

It's July. After months of limbo we're finally settling into our new Sydney routine. After 3 1/2 years in California we'd made the difficult decision to move back to Sydney, primarily to be closer to family. I actually moved the family back in January so that Ada, our eldest, could start school with all the other kids. I then worked back in California until March, split my time between Sydney and Mountain View in April and May, and finally relocated permanently to Sydney in June. I'd taken a couple of weeks of paternity leave in June (our son, Ellis, was born in December) and then started my new role with Google Australia on July 10th. We'd been excited about buying an acreage on the outskirts of Sydney to create a family farm with my parents & Madés' mum, and after spending most weekends in June and July scouring Sydney, we'd begun to settle on Kurrajong as our preferred location (our second tier options included Razorback & Mount Somersby for those interested).

Life was great. And here's how quickly it turned to shit...

  • July 20th - I visit my GP because I'd become concerned about some bleeding. He thinks my description is worrying enough to book me in for a colonoscopy.

  • July 24th - I do the colonoscopy at a day surgery and the doctor tells me right after the procedure that he can see a cancerous legion in my sigmoid colon. He tells me to visit him at his surgery later in the week for next steps (once he gets biopsy results back to confirm).

  • July 27th - Legion seen in colonoscopy is confirmed as being malignant by the biopsy results. I'm referred to a gastro intestinal surgeon to have the legion removed. I'm also asked to have CT scan before I visit the surgeon.

  • July 28th - Luckily I married into a family of doctors and we get a personal referral to one of Sydney's best GI surgeons, Prof John Cartmill. Prof Cartmill agree's to see us the next day. He reviews the CT and colonoscopy results with us. The CT seems to show the cancer might also be in nearby lymph nodes how it appears to show now further spread. He orders an MRI and a PET CT Scan.

  • August 2nd - I do both the MRI and PET Scan in the morning and meet Prof Cartmill at 2.30pm in the afternoon to review the results. He tells me that the PET Scan, which is much more sensitive, has picked up two cancer spots (what they call "secondaries") in my liver in segments 5 & 7 and has confirmed the presence of cancer in several of the lymph nodes surrounding the primary tumour (we're not calling it a legion anymore) in the sigmoid colon.

For those that don't know cancer well (I didn't), there are four stages. 

  • Stage 1 - this usually means that a cancer is relatively small and contained within the organ it started in.

  • Stage 2 - this usually means the cancer has not started to spread into surrounding tissue but the tumour is larger than in stage 1. Sometimes stage 2 means that cancer cells have spread into lymph nodes close to the tumour. This depends on the particular type of cancer.

  • Stage 3 usually means the cancer is larger. It may have started to spread into surrounding tissues and there are cancer cells in the lymph nodes in the area.

  • Stage 4 means the cancer has spread from where it started to another body organ. This is also called secondary or metastatic cancer.

So, within 2 weeks I've gone from the good life to what initially seemed like stage 2 cancer diagnosis and then a stage 4 cancer diagnosis, and let me tell you stage 4 is very, very different to 1 and 2. It's not good, but more on this later.