Tuesday 30 October 2012

The details...it's cancer

I don't quite know why my mind keeps going back to this, but I keep remembering how bad I felt for the doctor who told me it was cancer. She was one of the more junior surgeons. She had taken a look at my scar, talked to me about the droop of my lip, and then she brought up the pathology report on the computer. She left the room for what seemed ages to "just speak to the senior surgeon". Which had happened at several previous appointments, so no alarm bells were ringing yet! Steve and I sat there waiting, laughing about something. I can't even remember what. Knowing us, it was no doubt something inane and completely silly! Both doctors came back and she sat back down in front of the computer and just said, "It's not good. It's cancer." Oh my goodness, even just typing that makes me feel sick all over again. That rush of adrenalin. That numb sensation that just washed over me. The thought that I surely just misheard her. And then, crazily, how horrible it must be to have to tell someone that. Like it wasn't even me who was being told!

The senior surgeon went on to tell me that my case would be sent to the specialists at the Royal Adelaide Hospital where it would be reviewed at a Multi-Disciplinary meeting. He said there may be more surgery, radiotherapy, chemotherapy or a combination of any of those. He said they don't often come across cancer of the salivary gland so he couldn't tell me more than that.

Steve and I walked out in a fog of emotion and just sat in the car for ages. We drove home in silence. Telling Ryan and Matt was worse than being told it was cancer in the first place. We all sat on the couch hugging and crying. I'm really not sure how long I sat there with my boys like that. I don't think I can ever recall a time when I've experienced such intense emotional pain. I've been through some really hard and challenging times in my life, but this, this was excruciating.

I have to remain strong. Strong for Steve. Strong for my boys.

The details...the lead up

I've just had a thought....I haven't mentioned any of the details...I think maybe its because the details actually scare me. Let me start with the lead up to the details as that's less scary!

I've had a lump in my neck for ages. 15 years actually. It started as quite a small and painless lump. Maybe about the size of a pea or smaller. My doctor had said that it was very common to have slightly enlarged glands after an infection or glandular fever so I never really worried about it. The lump slowly grew and in the last 18 months the rate of growth really sped up and the lump was causing a bit of pain throughout my jaw, cheek and neck. At this stage it felt like it was about the size of a walnut.

After Nate was born in October last year I thought I should get it checked out. The pain had become a constant presence. After the lump didn't respond to a course of antibiotics my GP sent me off to see an ENT surgeon. I had ultrasound scans followed by CT scans. They thought it might be a blocked duct. Although no blockage was evident in any of the scans they didn't seem to be concerned and told me it was very common to have an infection or a small stone, like a kidney stone, in the duct. More antibiotics were prescribed to specifically target the infection they thought was causing the blockage. Still no change. The ENT suggested a procedure needed to be done to clear the duct. He would go in through the duct under my tongue with a tiny tube and camera to clear the duct. That was done back in May this year. I distinctly remember waking up from the surgery and feeling the lump in my neck still and my heart sinking. The ENT had said this procedure was successful in about 80% of patients and the other alternative was to remove the gland. I didn't really want that to happen as I, rather vainly, didn't want a great big whopping scar on my neck! More antibiotics were prescribed. I might just throw it in here that I don't react well with antibiotics so I was a bit annoyed at having five rounds of them! Of course, that didn't work and so surgery to remove the gland was scheduled.

The actual surgery itself went well. I did have a few issues with nausea afterward which meant instead of just one night in hospital I spent two. The surgeon commented that the gland was bigger than we first thought, about the size of a kiwi fruit (why the reference to fruit I'll never know, don't think I can bring myself to eat them again without feeling a little sick!) and it was quite hard and was very much embedded in my jaw. There was still no suggestion of anything more sinister than just a non-functioning, infected gland. I was disappointed at the size of the incision (you can see it on my pictures page) and also concerned about some droop on the right hand side of my lip. A little bit like I'd had a mild stroke. The doctors felt it was just due to the nerves being squished with the swelling and would right itself within about six weeks.

A follow up appointment to remove the stitches and check on that droop was made for a week after the surgery. The stitches came out well and the surgeon was impressed with his handy-work (as they so often are!!) and felt it was healing very well. He also felt there was a very slight improvement with the droop but would check it again a week later. The pathology results weren't back yet, which they weren't concerned about, just a matter of routine.

That following appointment has become a blur. I still feel nauseous whenever I remember the doctor telling us that it wasn't good, that it was cancer. We didn't find out then what sort of cancer but we did find out the margins weren't clear and there might be more surgery. They told us that my case would be referred to the specialists at the Royal Adelaide Hospital where it would be reviewed in a Multi-Disciplinary Meeting. I had another CT scan scheduled to check for evidence of the cancer spreading. The waiting to find out more was horrible. I lost over five kilos in a week and my GP prescribed tablets to help me sleep.

.......on to more of the details.....

Monday 29 October 2012

Emotions

The rollercoaster of emotions over the last few weeks is taking its toll on both Steve and myself. I'm really not sure how to feel, what to say, or what to think. I fluctuate between a distracted calmness, to anger, to tears and fear. I want to cling firmly to the optimistic hope of beating this cancer, of being one of the positive statistics. So often, though I find myself thinking on the reality that is lying out before me.

I was talking to someone earlier this week who has also battled cancer, breast cancer. She commented how she had been afraid to hope for the best for fear that it wouldn't happen, but also afraid to think about the worst case scenario for fear of making it happen. How much of our thinking really influences our health? I'm really not certain. They say laughter is the best medicine. What if even a smile is hard to muster up?

Thursday 25 October 2012

Waiting....

I'm tired of waiting. It's exhausting.

We waited for what seemed like eons in the hospital waiting room only to be moved to another waiting area (really, it was just a corridor!) before being moved into another little room to wait even longer to see the doctor.

After what she told me in that little room I know I will now get very used to waiting rooms.

Three weeks ago today she told me I have cancer.

Then there was more waiting.

Waiting to get results of a CT scan to see if there was any evidence of the cancer having spread.

Waiting for the specialists at the Royal Adelaide Hospital to have their Multi-Disciplinary-Meeting where they would discuss my case and determine the best course of action.

Waiting to find out the result of that meeting.

Waiting to see the Oncologist.

Now waiting to start treatment.

Three weeks seems to have been a very long time but at the same time it has gone by so quickly. I'm now so very aware that time goes by all too quickly.