My name is Kim,
Well actually it isnt. Ive decided to write this blog under a pseudonym, not to protect myself or my family, because I dont intend on writing anything massively controversial or rude, but because there are people who dont need to know everything about my life. So why am I writing a blog, on the internet, where anyone and everyone can read it?
The reason is because I have cancer. For the second time in two years. And there are some things about cancer and the treatment, and the experience as a patient that many people need to know. You may think you dont need to know it, but when you or one of your loved ones gets cancer, you and they may be very glad you had some insight into what its like.
I read a great article a few days ago, called Cancer Rant, and it was on the craigslist forum: Click Here to View It basically lists and details a good range of experiences and stupid comments made by people to a cancer patient. Please read it, because whilst Im sure to have my own rant up here at some point, I dont know if it will be as eloquently written as that one.
Because of the pseudonyms and I know family and friends will be reading this, any comments made will be moderated, and if mentioned, real names will be changed to the appropriate psuedonym. I’m sure you understand.
I intend on writing about my experiences of treatment the second time around, because it is one thing I did not do last time and I wish I had – careful what you wish for! To start with, Im actually going in for surgery tomorrow (2nd Jan 08), to some lumps taken out, for another formal diagnosis, and then treatment will be decided – I am not really looking forward to it.
A little bit about me I suppose would help.
I had a very normal childhood – it was great in fact. I grew up in the red desert sand, with my family, including my two older brothers, Michael and Anthony, running a muck in the neighbourhood. My brothers and my parents have always been musical, but from a very young age, Ive been a dancer. Ive danced my entire life – calisthenics, ballet, ballroom, irish, indian, bush, hip hop, etc, and I even though Ive always been active and friendly, Ive never been the most popular kid around. Ive always had friends, but at highschool, after we moved to the city and I ‘lost’ my childhood friends, I never had a large group of close friends. I instead prefered to get to know everyone in my year, and above (thanks to my brothers), so whilst Ive always had a large circle of friends or acquaintances, Ive only ever had a few very close friends. I know now its partly because I used to shut myself off from people, but I wont go into that right now.
Always fairly good at school, despite being late even though we lived around the corner, a 5minute walk. I excelled in art, photography, music and whilst i did alright in maths and biology because of my interest in wildlife, I never did that great in science subjects. The single fail mark (F) I ever received during school, was in Year 8, in woodwork. This was because I had glandular fever, and that teacher was the only one in the school who did know know it.
I still passed high school, even with a 48% mark from my English Literature teacher who couldnt handle that I had an opinion of my own and refused to write what she wanted me to write. I still got into university, and then continued onto a better course and have recently graduated from it. I was married two years ago to my gorgeous husband Nic, and he’s just gone back to university again himself.
Prior to the wedding I had gone to the doctor for the usual female checkups, and had mentioned a lump in my neck. The doctor’s reply was, “Oh we dont have time for that right now, you’ll have to come back later”. I figured if she wasnt worried about it, then I wont either. I still want to go back and slap the stupid woman.
Last year – actually no, since its now 2008, its not anymore… In 2006, a few months after our wedding, I took up some new activities and braced myself for a killer final year at university trying to get my folio together. However, I always felt too tired, and lethargic, and just not into what I needed to do. I lost a bit of weight, and put it down to the new exercise I was doing. One night I was massaging my neck and verbally expressed a concern that the lump in my neck had gotten bigger. Nic almost leapt across the room to feel it, and then sternly told me to call the doctors. I called, meekly, and asked for an appointment, with a doctor different to the last time. There were no appointments available, although when asked and answered as to what it was about, a lump, the receptionist found a place for me that night, for which I am very grateful.
We went to the doctors and were sent off for blood tests and an ultrasound on my neck. Within the following few days, we went to these, and went back to the doctors for the results towards the end of the week. The blood tests were normal, minus a slightly raised ESR count (indicates possible infection), but the ultrasound showed not only one large lump, but several more. I could see the alarm bells ringing in Nic’s head and the doctors (I should mention that Nic is studying human biology, movement and kinesiology subjects, so knows a bit about the working of the human body), but we were told that she didnt want to freak us out and think that she thought I had cancer, but she was worried so she was referring us to a specialist head and neck surgeon. We got in for the following Monday.
I had to tell my parents. We walked home, freaking out… and I shelled myself. I was scared and whilst I cried a lot on my husbands shoulder a lot (literally – his shirts wouldve started sprouting leaves if I had watered them too much more), I kept a lot inside… it was my way of dealing with it I suppose. We rang my parents. My mum decided to come over to look after me, and be there for the appointment. I love my mum, but like any child living independently, it can be frustrating to have someone fussing over you when you feel it isnt necessary. But I was glad she was there.
The Monday came, and we were told that I either have cancer, Hodgkin’s Lymphoma (the ‘best’ cancer to get, and the same as Delta Goodrem, although I was assured I wouldnt get the same fame as she had :S ), or a thyroid problem. The doctor did a needle biopsy on the lump then and there – this basically involves sticking a HUGE needle into the lump in my neck, and moving it about within it, to get as many cells as possible to make a diagnosis. I was to ring on the Friday to get a diagnosis, which would be combined with a PET scan and a CT scan.
Can I just interrupt this and say two things: When you’re being faced with a diagnosis of cancer, you dont CARE that its a ‘good’ type to get – and whilst its probably told by doctors to reassure patients, its still a shit thing to say to someone. And two, I now personally believe that ringing up for a diagnosis over the phone is shit, and should be banned. Being told that it looks like Hodgkin’s, and you’ve got to have some surgery to get some lumps taken out, and having to think of questions then and there to ask is NOT the best way to treat your patients. I rang up 5minutes later when my brain started coming out of shock and functioning enough again to think of questions, and the doctor had left and I had to wait all day to get them answered.
So I had the surgery, and had every known side effect to the general anesthetic known to man, which I felt awful about, not only because i physically felt awful, but because my dad had joined my mum and they put us up in a very nice hotel for the week. It was so I could recover in peace and not worry, but I felt bad because I couldn’t feel up to spending time with my dad.
Around this time Nic and I were thinking about moving back to our hometown. Being across the other side of the country to my family and potential support network would be tough during chemo, and I wanted hubby to continue study since he had just gotten into the course of his hearts desire. Through working with our universities and such, we were given the go ahead – Nic would be transfered to a similar course at home, and I was able to finish my final year via correspondence.
We were given the final diagnosis and then met with an oncologist – I remember his actual name, but to me he will always be Dr Big-Desk-Syndrome. I named him that because he sat on his side of the desk, we sat on ours, and if we wanted to know anything, we had to ask – it was like getting blood from a stone. I never really liked or trusted him. At our second meeting we told him of our decision to move back home, and he agreed to write us a referral to the hematologist/doctor there.
So we moved back. My neck scar healed well, and we enjoyed a great drive across the country and back home.
My new doctor was great. Dr Bowtie – the first words he said to me were “Im going to assume you know nothing and tell you everything”. I loved him from that point. He was straight, to the point but gentle, and a fantastic man. Plays guitar too, gotta love that.
I started chemotherapy in June 06. I am going to go deeper into that treatment in later posts, because this is reaching mammoth proportions, and I never intended it to be. But let me leave this first post with this comment…
My life is just fine – I love my life, but what I dont like is not being able to enjoy it.
