Cancer diary
Some may think it odd to write this to a blog. But I’ve discovered others who have been through it have done so and in doing so, have provided me with a source of information and experience not gained anywhere else. It helps more than those not going through it can know. And in addition, writing about these kinds of things is a therapy in and of itself and provides an outlet that is a lot kinder than bending the ear of a support person! I wrote a book that was published some years ago when my then-partner died from it. I’ve often been asked for copies of it from both doctors and surgeons and that happens even to this day. So I’ll probably blog that up on here as well; there is a lot of information in there from experts that may help you you and yours are going through this.
Jan 23 – It’s been a tough two weeks. To go from sitting there planning my 50th birthday for the following day, lifting my hand up to my face to scratch an itch near the joint of my jaw and ear – and finding a lump the size of my fingernail, to waiting to see a specialist tomorrow and trying to work out where to from here hasn’t been easy.
I had planned on seeing my doctor that Friday, to question what might be the cause of a number of irritating problems that had surfaced in the past two months. Night sweats, which seemed to be on the wane, an increase in the weekly headaches to almost daily ones, an ongoing major pain with my tailbone that made getting up off a chair painful and just a general overwhelming tiredness that saw me become the most unmotivated individual I’d ever met. Some of it I’d put down to symptoms of the menopause – at almost 50, my ‘power surges’ had been little more than triple A battery flashes true, but all the same, the countdown to crossing the bridge between the years of being a fertile woman to being a ‘woman of wisdom” (which sounds better than old crone!) had indeed happened. I’m still thankful that my little pipsqueaks of heat are just that and not the imitation Niagara Falls some of my women friends have to put up with.
But the lump changed that.
My doc was good – looked at it, realized that it made my face very slightly asymmetrical, asked me the usual questions about pain – there was none – which ruled out that it could have been an infection. That was the Friday before my 50th party – so, while knowing I had a biopsy to look forward to as soon as could be arranged (which wasn’t easy because on January 8, many medical people were still on holiday) it was pointless worrying too much about something that could easily be nothing at all. My time with Allen, my partner who passed away some 13 years before through having rhabdomyosarcoma, had taught me the futility of worrying about something you didn’t have enough information on.
I got through the 50th, had a blast as we so often do with these things and on the Monday, the day I actually turned 50 in reality, I got a call from the hospital saying my biopsy, a fine needle aspiration, had been booked in for the following day. I duly presented myself up there and the pathologist who was on call from Waikato Hospital whisked me straight in, no waiting. Which for me is a good thing, I hate the thought of needles at the best of times but I am always very fearful of anything to do with my head for some odd reason, so coupling both wasn’t an easy place to be in. He was an expert however, doing around 600 of these things a year he calmly said. The needle stung, much like a bee-sting, when it first went in, given that there are many facial nerves in the general spot, but once into the mass, it didn’t hurt, I could feel the pressure as he jiggled it around for the 15-20 seconds he needed and that was fine. Biopsies? I thought.. pffft, no problems. He told me it would take until the following Monday before the rest results came through and I shrugged and said, well what’s a few more days.
Except that it wasn’t. The very next day, around 8.30 that night, I got a call from my doctor Sharon Lovegrove – who, it must be said, did well to ring, because she was on holiday for three weeks.
The first of the results had come back she said. Yes, it was a tumour, but if there was some good news, it was thought that it might be a pleomorphic adenoma in my parotid salivary gland. There were still more tests to be done, she said, to find out whether it would be benign or malignant, but she assured me, most of these kinds were benign and to wait and see what the rest of the results were before I started to get too worried. It would however, have to come out. Benign they may start out, but they usually end up being nasty. She was a bit vague, telling me I would really have to wait and talk to my specialist. So, armed with Google and a long time senior journalist’s ability to research, I looked up what it was they thought I had.
Yes, this kind of tumour often are benign. They are, research on several sites all said, slow growing, usually roundish and fully enscapulated – usually – which means they are easy to remove. Although a reasonably wide area has to be excised because they do have habits of recurring. And I discovered that whatever the doc tells you about the operation, those who have been through it all have one thing to say.
“They LIED”.
The common consensus is more pain than you are told, more issues with facial nerves than you are lead to believe, the inability to eat anything other than soft food for about three to four weeks (talking and chewing are difficult when your jaw joint has been hammered during an operation) and that pain is a constant companion as the battered nerves come to terms with what’s been done – and that can take up to four months to come right.
It seemed an awful irony that there were some odd twists in this – here I am with a tumour in much the same place as Allen’s, although of a vastly different type; we found out on a January 8 that he was terminal after having been in remission for 18 months. I’m rather hopeful those are the only dateline twists we will share…
For the first week and a bit, I was ok. Until I realized that instead of being slow growing, as the benign tumours are, this one was starting to make its presence really felt so that by the time almost two weeks after the biopsy had passed, it is now three times the size it was when I discovered it and is developing into my neck and behind my ear, as well as further out into my jaw.
It’s become painful and if I turn my head to the right, I can feel the pressure of it inside my neck. In addition, the headaches are worsening. I had a right bitch of one this morning that I woke up to at about 3am, feeling like I wanted to vomit as I winched my way up the hall in the way that intense pain can make you feel.
I am uneasy about it and am pleased they have acted so quickly on this, much quicker than I actually expected given my experience with the public health system in the past. So it is good that I get to meet my specialist Mr Back for the first time tomorrow afternoon, followed by a mountain of further tests they have planned for me three days later. Ultra sound, MRI, CT, x-rays….
*sigh*.
So how do I really feel about it? And how are others coping?
It’s funny what goes through your mind at different times. Everyone says, “be positive!” Of course I am going to be positive. But my time with Allen taught me quite a few things and one of them was, “You can’t be positive all the time.” There are times when I will wake up and the tears are there before I get much of a chance to think why. Or one thought will lead to another and before I know it, I’ve walked myself into a severe case of the frights. Yes, I can get impatient as well and with the pinging headaches I get so often these days, along with the dratted tailbone, it doesn’t take much for that to happen. I try and curtail it; I am married to a man who could potentially find all this more than he can handle and I’m very aware of that fact, just as I am aware that his support during this should be one of the underpins of my getting through it. I’ve been through this from having had Allen go through it, I am so very aware of just how freaking hard it can be for a cancer sufferer’s partner. And in knowing that, as well as knowing Ken as well as I do, he has yet to test the strength of his backbone to the degree this could test him both as a man and as a husband. It is never easy to try and hold in what you feel in order to keep the boat in relatively safe waters. And of course I know it’s not healthy; but it’s the same old chestnut in that you learn to live with what you cannot change.
Each of us are different in how we handle things and I guess I am lucky in that I learned a long time ago that if you cannot change something, then stressing about it isn’t going to help. And at the moment, I can’t change what is happening in my face – and I don’t know anywhere enough about it to be able to get a handle on whether or not I should worry about it more than I am.
So I have days which are fine and where I do not think too much about it and other days like today, where I have woken in fear and it has remained with me for the day. I invited us to tea at my sisters tonight, just hoping the usual laughter would make it fade – but the weather is lousy and Ken says he can’t be bothered going out in it, so I’ll go on my own. A lot of the fear is knowing I see my specialist tomorrow afternoon and that backed with the aggressive behavior of the tumour in the past few days isn’t helping the situation at all.
Jan 25 – Our health system can be hilarious at times. Like it was yesterday. I get to see my specialist who has no knowledge of what I am there for, has no records of the test results and has to ring my on-leave doc for a verbal ID, who then decides that some of the tests I have been booked for aren’t appropriate and has to reschedule those he thinks are… in between trying to answer a series of phone calls from a harassed sounding registrar AND who doesn’t understand when you gently, then forcibly tell him that in being a woman, you know your face quite intimately thanks to all the gloop we spread on it most days and that the lumpvery definitely was not there a month ago. (He still doesn’t agree with that – my point is, if it was, it was not ‘feelable’, therefore it’s growth pattern is not the usual for a PA.) Why is it some medical experts can’t take the time to actually a) ask questions and b) listen?
I do get told the operation will be a major one, around five hours under and there will be a reasonable recovery time of around three weeks for the surgical part and up to four months for the facial nerves to settle. But as I watch him talking on yet another cellphone call chewing his fingernails for all their worth, I’m starting to have serious misgivings about all this…
