Apparently, had I not had health insurance my total costs this year would have been $116,547.81.
The orchiectomy was almost $9,000. My second surgery, the RPLND, ran almost $30,000.
Chemotherapy ran upwards of $3,000 a day, and each CT scan ran as much as $6,000 (and I had like 5 of those this year). Throw in all the doctor visits and medications…and yeah. Crazy.
What’s even crazier is that Humana gets $72,114.32 worth of discounts, meaning they paid a total of $41,281.89.
I’m super lucky I was still living at home when I got cancer and under my mothers insurance plan…If I hadn’t been, I would be completely screwed financially right now.
Cancer is fucking expensive.
(this is really kinda interesting because your treatment was pretty much the same as mine)
HOLY SHIT. Also, God bless the NHS.
My left arm hurts. I discussed it with the Maestro yesterday - I have a new cord (look up “fascial cording” if you need a further explanation) and it runs all the way down to my damn wrist. But my hand is numb, my arm aches and it’s a bit swollen. So I am being scheduled to go in for more PT and lymphatic massage -and, I am assuming, to assess if I may have lymphedema (which is basically swelling caused by the removal of lymph nodes - it can be horrifically painful if you don’t catch it early - and if I have it I will need to wear a lovely *NOT* compression sleeve in order to get it under control).
But - of course - I am convinced it’s cancer. Because after you have been diagnosed with cancer and done a shitload of treatment (which I am still doing) - you automatically assume that any ache, pain, spasm, twitch, or glitch is cancer. I had a great talk with one of my doctors about all of this yesterday. And she assured me this kind of thinking is not abnormal for cancer patients and survivors. Cancer is a traumatic life event and dealing with the aftermath of it can be as painful as dealing with the disease itself. Sometimes moreso.
There is no guidebook on how to move on after cancer or any other debilitating disease. No rules. No cut sheet with a list of “to do’s”. There is advice - sure. But often that advice is coming from someone who hasn’t even ever had cancer. And as a young person dealing with this kind of diagnosis, I have (hopefully) many years of fear and worry ahead of me.
But I hope there are days ahead of me when I don’t jump to the absolute worst conclusion when something hurts. Because - let’s face it - as we get older, shit starts to hurt. But right now, everything is cancer. And it’s awful. Just absolutely awful.
This. Just this. I spent a LOT of my time in Norway freaking out because I thought I could feel lumps under my ribs and in my abdomen. I actually considered, and had a long talk over dinner with my family, getting on a plane and flying home just to get a scan and put my mind at rest.
Even now I’m in all clear territory, my throat hurts and the back of my mind goes “maybe it’s that lymph node in your neck” or my abdomen is stiff, and I think something has gone wrong with the scar. And when I’m tired when I come home in the evening I wonder if I have good enough reason to be tired or maybe the fatigue is creeping back in.
On the topic of compression gear, I’m in a compression sock for 6 months, wooo. Fortunately it’s the winter months, but wearing a very tight stocking that takes 5 minutes and lots of struggling to put on ain’t great. But at least I got purple ones! Usually only for private patients but I asked nicely. Was given an amusing leaflet with pictures like these to illustrate the fabulous range of colours on offer :P
My name is Ellie Cohen and I beat cancer.
I had been at university for half a year when I started to think there might be something wrong with me. I went to the doctor and explained that I had had several kidney infections over the past few months and although they were easily treated with antibiotics, they kept coming back. I was also getting tired all the time. Too tired to ride my bike home from lectures, and I’d end up falling asleep when I returned home in the early afternoon.
The doctor examined me and told me I had a “lump”. “Probably an ovarian cyst” she said, and she referred me to a gynaecologist. The gynaecologist examined me and sent me for two ultrasounds and a blood test for ovarian cancer. The test came out normal but the scans were inconclusive, so I was booked in for an MRI. A couple of days afterwards I got a phone call asking me to come in to the hospital for some extra blood tests.
My mum travelled to my university to come to the consultation after the MRI. It was a beautiful warm spring day. We sat down in the gynaecologist’s office and the first thing she said to us was “I’m afraid it isn’t good news.”
The scans showed that I had a large mass on my right ovary. They also showed enlarged lymph nodes and some fluid built up around the mass. This, along with the extra blood tests, suggested that I had cancer. I broke down in the doctor’s office.
My mum phoned my dad, I phoned my girlfriend, and also rang my best friend who happened to be coming to stay with me at uni that evening. The first people I told in person were my housemates. One came to my room to show me a bubble wand he’d just bought. He said “I have bubbles!”, I said “I have cancer. But screw that, let’s go play with bubbles!”
In the weeks following I had a CT scan, further blood tests and a biopsy on my tumour to rule out the possibility that I had Lymphoma. I moved back to London to live with my parents. I had considered trying to continue with my studies and finish the year, but it became clear that was not a possibility because of the intensive chemotherapy I was going to need to fight this thing. The chemo was going to make my hair fall out, and I decided to hold a fundraiser where I got my hair cut into a mohawk, for Cancer Research UK. (this fundraiser ended up raising a grand total of £3000!).
I had my first consultation at the Royal Marsden hospital. The professor explained that I had dysgerminoma, a rare germ cell tumour of the ovary. (this was why the first blood test for normal ovarian cancer hadn’t worked) It was stage IV, meaning that it had already spread to another part of my body – in my case, lymph nodes in my neck and abdomen. I had a tumour the size of a brick on my right ovary and another, smaller, tumour on my left ovary. My Ca-125 level (a marker in my blood) was at 900, when a normal level is lower than 35.
The day after my consultation, we got a phone call from the hospital telling us to come down ASAP. I packed bags and drove across London on the back of my dad’s motorbike. I was put on a ward for lung, gynae and breast cancers, where most of the patients were over the age of 50. The nurses on this ward were fantastic and really helped me to get through the rough time I had in hospital. I saw so many different doctors, nurses and social workers in the first couple of days that I lost count. There was a second CT scan and a canula inserted into a vein in my arm that I would receive my first round of chemo through. I was going to have BEP chemotherapy (Bleomycin, Etoposide, cisPlatin), and because the drugs were very harmful to the kidneys I had to have 6 litres of water daily through my IV, plus antihistamine, diuretics and anti-sickness drugs.
It was a lot of drugs and each round of chemo I would have to come into hospital for 5 days to have drugs pumped into me 24/7, and come in for 2 outpatient doses as well. A round of chemo lasted 3 weeks, and the time I spent out of hospital was largely spent recovering. The chemotherapy reduced my blood counts making me weak and prone to infections. I was often taking 12 pills a day and occasionally over 20, and I had to have a lot of injections as well, which I was taught to give myself. I was also given an injection to put my ovaries to sleep, so my periods stopped and I started to get menopausal hot flushes. I ached all over, I had ringing in my ears, changes to my senses of taste and smell, mouth ulcers and my hair started falling out after the 1st cycle. For a while I wore scarves and hats when going out because I was worried about people staring at my bald head. Scarves get annoying after a while so now I mainly rejected the scarf in favour of rocking the bald look.
I had a total of 4 rounds of chemotherapy, which brought my tumour markers down to a normal level. The tumours shrunk to a fraction of the original size. After I finished chemo, I rested for a couple of months and then had a midline laparotomy (major surgery on my abdomen to remove tumours/scar tissue for analysis). I restarted my course at Uni shortly after, and then had a second surgery to remove some lymph nodes from my neck right after my january exams. Pathology from both surgeries showed no sign of cancer and I am now 100% cancer free as far as anyone can tell! My consultant has always been confident that a complete cure is possible, and I may even be able to have biological children in the future.
I couldn’t have fought this without the incredible support I have had from my family and my friends. My mum, her work colleagues and several of my friends ran the Race for Life for me. I have had days where I’ve cried and I have been angry and frustrated. I’ve been scared and I’ve seen my friends and my parents being afraid for me. However, I think that there are always options. The option to be miserable about everything and the option to stay cheerful no matter what life chucks at you, and the second option sounds to me like the better deal by far.
*Since I wrote this back in July I have had the surgery. It went fantastically well, and I got the news that the pathology revealed everything they found was dead! I’ve been given the green light to go back to uni and I’m very much on the mend. The mohawk event has raised £3000 for Cancer Research so far.
**When I had the surgery, it turned out the large tumour was on my right ovary (the one that was removed). It had collapsed and fallen onto the left side.
Further update: Still in remission in 2012, had 6 lymph nodes removed from my neck on 06/02/12, and my most recent tests were all clear!
Had my little trip to the hospital yesterday. Yet again it’s all a bit up in the air…if you’ll remember from last time, I’ve had plenty of being poked in the abdomen etc. and ultrasounded/pregnantscanned and yeah, still have a lump that’s about the size and shape of a mango just floating round my abdomen. And the MRI showed all these enflamed lymph nodes and one of the blood tests came up high with some sort of germ cell marker so we thought we knew what was what. Off to the ovarian cancer specialists I went. On the way I had a CT scan and the blood tests were examined again.
There are 3 major markers for germ cell. Two of mine are normal, one is elevation up the wazoo…but all three of them should be elevated which makes things a little more complicated. Then the CT scan showed angry lymph nodes going all the way up to my neck. It seems like we may have discovered the problem is in my lymphatic system and is nothing to do with my ovaries.
Just as a side note, I had no idea what the lymphatic system actually does apart from enflamed lymph nodes = something’s up. My grasp of what it does is still very patchy, but lymphatic system is lymph nodes all connected around your body, and they release the T and B white blood cells that fight off infections for you.
Anyway, now they think I might have lymphoma. It is a cancer, but it isn’t, kinda falls into the same category as leukaemia. The type I may have is more common in young people. There’ll still be chemotherapy, and it will be hard going, but the doctor also said things that reassured my parents, like how it’ll make the cancer melt away. For now, to get a proper diagnosis they want a biopsy (mini bit of surgery where they take a little bit of the lump out, so they can look at it under a microscope), and a bone marrow sample to check it hasn’t spread there. They took another blood to check for correct clotting. I’ll hopefully get a call from the hospital telling me when my biopsy is some time this morning.
As for the rest of my life, it looks like once I get a diagnosis it looks like I’m going to come home to London for treatment, and stay there with my family. At least until September. I hope that I’ll be able to have a fresh start with the first year all over again, and if I am still unwell, I have already passed all the the first half. Hopefully by January I’ll be well enough to get my second term done properly, because I’ve probably missed about a third of that due to illness. This means having all new people on my course as well. I’m a bit sad about that because after spending about 20 hours every week with all the same people you get to know them all pretty well, there are people I’m gonna miss hanging out with all the time. I’ll still have my house with my friends, and they’re some of the most awesome people in the world.
So right now I have to wait, for the hospital to know what is going on and to get a diagnosis. I have to enjoy the time I have left to spend up here with all the amazing people I’ve met so far. I’ll probably leave my room full of my personal effects cos I just got it how I like it, and I may still come up and visit (doubt I’ll be able to get the money back on the room just because I’m not living here!)
The rest of the day yesterday was good, I spent lots of quality time with my parents, got some new tops and a pair of jeans and a really, really shiny pair of saucepans. My dad bought me a massive amount of pot roast from home which is seriously the most amazing food EVER. My parents want to come up for every single little hospital appointment, but clearly they can’t, which is another reason why it’s important I get home as soon as we know what is going on.
Didn’t quite mean to make this post so wall-of-texty, but never mind. Now time for tea and a Pokemon watching marathon (woo!)