The Surgery

It’s been a week since I have had the surgery to remove the large tumor that has been invading my skull/nose for the last 8 months or so. I couldn’t be happier that it’s out.

Don’t let the picture fool you I actually was in hysterics (a good mix of laughing and crying..mostly crying). That the surgery was over. In total the surgery took four years..I mean hours; HOURS. I lost a total of 3 litres of blood that was recycled through me as the surgery progressed. The vain that had been feeding the tumor was about 10x the normal size of a vain.

The tumor put up a fight, it was not eager to come out so a lot of cutting had to be done in order to fully removal the tumor. The surgery first began with going through my left eye (hence the black eye) were the vain feeding the tumor had to be cut off to prevent further bleeding. Once this was done the rest would be done through my nose.

To end the surgery there was a small hole in the lining of my brain a.k.a. the dura that had a small hole that had to be plastered with a bit of cartilage from my ear. Basically what I am trying to say is that everything that COULD go wrong DID go wrong.

It’s been a hard week to say the least. I am incredibly weak and most of the time suffering with dizziness, headaches, etc. that make daily tasks difficult. But, all that aside I am alive, I am relatively health, and I am tumor free.

Doctor to Doctor

The amount of doctors I have seen in my time in England is probably the most I have seen in my entire life. As with anywhere you need a referral to get to a specialist doctor. I began with registering myself as a “temporary private patient” with Kieran’s local GP. We immediately got referred to a local specialist as this was out of the scope of the GP to handle directly.

Going to the specialist we both had high hopes for some answers and maybe shed a bit of good news. Unfortunately, we were not met with either. We were told by the local specialist basically this was out of his scope, and no one in the local area would be able to assist us with us. (£200 or $260 US to be told that no one could help us). Frustrating to say the least.

With this obvious blow, and having another day without answers. We went directly to A&E where we were told that there are no specialist in the area Kieran lives in that could handle this surgery. We decided to drive down to Oxford to see if anyone there could at least refer us to someone who is a specialist in the area of my specific type of tumour. A couple of hours later, I registered with Oxford and was told that I would be contacted within the week to schedule an appointment with a specialist.

A week passes, and I finally have a set appointment with a specialist with Oxford. When arriving to the appointment the ENT specialist who saw us, was very confused as we didn’t bring any CD’s of my scans. (We were not told to bring in anything, and everything being on my phone would be sufficient enough). Without this information they unfortunately, could not help us any further.

Every turn seemed like a dead end. The only saving grace through this process, was my doctor I originally had in New Zealand. He was able to recommend a doctor here in London that had more than enough experience to handle this operation. We are fortunate enough to have an appointment booked with her this Friday for a consultation and then a surgery date booked for the 6th of February.

With all the bad news that seemed to be surrounding us at the minute, I couldn’t be more thrilled that I have a date to look forward too finally being healthy (and to putting all this far far behind me).

https://www.gofundme.com/life-saving-help-urgently-required&rcid=r01-154818443462-580adb3f04f84133&pc=ot_co_campmgmt_w

The Emails

Christmas came and went- it was the first Christmas both Kieran and I have had in awhile that involved family, Christmas decorations, and it being colder than 20c/70F. Full of the holiday cheer and too much food, we both ended the day on a high note.

To give a bit of background, I had luckily taken out insurance in New Zealand for the year just incase anything happened (plus it is a requirement if you want to do a working holiday in New Zealand for U.S. citizens). I was fortunate enough to get the first initial coverage of the ‘polyp’ covered. But, as we quickly found out it was something drastically different, insurance refused to adjust the cap they initially set out for the ‘polyp’. In their exact words it was the same “MASS” so the cap would not be adjusted.

Fast forward to a couple days later and the emails began. To make a long story short the plan for the removal of the tumour was into two parts. First being an embolisation to be done in the Auckland public hospital, to be followed up a couple days later with the full removal of the tumour to be done in a private hospital. (If you’re questioning why- the New Zealand system is very specific of where a doctor can and can’t work. The doctor to do the embolisation can only do so in a public hospital, while the doctor to do the removal of the tumour can only do so in a private hospital..confusing I know).

The emails began with an a double whammy from the public hospital and New Zealand immigration. The public hospital contacted immigration (they claimed because they didn’t have any contact details for myself so they thought to go to immigration). In doing this they found out obviously I was out of the country, plus I was on a working holiday visa. This is where things began to go south, immigration then began to email me saying I now became a “health risk” to their health care system, and basically my odds of getting into the country were slim.

With this massive blow we contacted the New Zealand immigration as soon as we could- an hour on the phone later we were still no clearer on if we could get into the country. Basically, they could not assure us that we would be able to get into the country, unless I had proof I had the money in full for the two surgeries. (Even with the proof they said they still could not guarantee entry).

Kieran and I made a decision it was best to stay in the U.K. until we could have a solid answer of wether I can enter New Zealand. This began another list of hurdles we faced.

The Lump

To keep it brief, my name is Jordan Wilson I am a 26 year old gal originally from Texas. About 2.5 years ago I decided to take the leap of moving across the world to begin a working holiday in Australia. With lots of travels in-between the most recent spot I have found myself in Auckland, New Zealand.

This story begins in Auckland. I began to notice a lump on the left side of my nose while staying in New Zealand. That lump began to make it very difficult to breathe as it was blocking my nasal passages. I began with going to a doctor in Auckland that confirmed what I had been thinking- it was simply a ‘polyp’ that needed removing.

Many discussions with insurance later- the ‘polyp’ was set to be removed on 13th of December with a 20k cap set on the surgery. Waking up from surgery, I immediately had the ‘gut feeling’ something was off. Kieran my partner immediately called me to tell me he was on his way and that we would talk about what happened when he got there. Obviously anyone would take this as a bad sign.

The word “tumour” immediately fell out. Gut wrenching, head spinning, I’ve never felt so sick. I am only 26, my body isn’t suppose to do this, this isn’t suppose to happen. It was almost like I had been betrayed by my own body. But, my doctor was in good spirits which immediately lifted my own. A later date in January was set to remove the tumour and I was immediately referred to another doctor who was an expert in the area of my specific/rare sort of tumour.

Mean while- life was going on. Kieran and I had plans to visit the U.K. for Christmas (as kieran likes to make expensive promises). We planned this months before the lump had come about. But, with my doctors and insurances written permission. They didn’t see any reason of why the journey still couldn’t be made. This began quite literally the holiday from hell.