I am sitting here worrying about my six month check up, due early next month. I know that worrying about it won't change anything, but that doesn't stop my brain from whirling at a great rate of knots. All the 'what ifs' rushing around inside my head, preventing me from sleeping at night or concentrating on anything during the day.
I think back now on the road I have travelled and shake my head in disbelief. Have I really endured this? Surely it must have been someone else. No, I don't think so. It is all so raw, and the tears are always ready to fall.
How did it all start? Can I even remember a time before the big C entered my life? If I try really hard, I can.
Some six years ago, I started to feel unwell. I was I thought well on the way through menopause, when all of a sudden after almost a year of being period free, I started bleeding again. I went to my GP who assured me that this was simply my age, a normal part of menopause. I went home relieved, but not entirely reassured. The bleeding stopped and life returned to normal.
A year later and the same thing happened again. I returned to my GP who once again told me it was nothing to worry about. He did blood tests to check my hormone levels, said they were fine and once again, "It's just your age." This same thing happened twice more over the next two years, with a second GP.
Then, in November of 2009, the bleeding started again. After having been told so many times that it was 'normal' I ignored it until in early December I started gushing like a fire hydrant. I honestly thought I was going to bleed to death right there and then.
Another visit to yet a third GP and I was informed that this had nothing to do with my age and it certainly wasn't a normal part of menopause. She arranged a barrage of tests and put me on a couple of different medications to try to control the bleeding. Transexamic Acid and Norethisterone seemed to help in combination though neither worked on its own. The problem was that this combination didn't work for long, and soon the bleeding started again.
By the time the doctor had managed to secure me an urgent appointment at the Gynecology Clinic I was having to take nine Norehisterone tablets a day. I didn't realise at this time that this was an abnormally high dose to be taking, all I knew was that I had almost every side effect listed on the product information sheet.
I turned up for my appointment at the clinic, where the gynecologist asked me all the usual questions, or at least I imagine they were normal. She then asked me "Have you considered the possibility that you might have cancer?" I replied that the thought had crossed my mind, and it had, on numerous ocasions. She then told me that I required an urgent hysteroscopy and D&C. She left the room and returned about five minutes later and said "I'm sorry, but we can't fit you in until March 19th". I couldn't believe it. This was supposed to be an URGENT test to determine whether or not I had cancer, and I was expected to wait for two and a half months? This had to be a joke. It wasn't.
I asked if I could have some literature about the types of cancer it could be. I was informed that I wouldn't be given that sort of information without a definite diagnosis. This was turning into a nightmare.
During the next two months the side effects grew worse, and by the beginning of March, the bleeding was so bad again that I was rushed to the emergency room at the local hospital. I told the doctor that not only was I bleeding but I had chest pains radiating down my left arm. I was also so dehydrated from fluid loss that despite drinking four to five litres of water a day, my lips were cracked and bleeding and I had to be put on a drip to rehydrate my body. My blood pressure which was normally around 105/70 had climbed to a frightening 203/180. When the doctor asked me did I want to be treated for the bleeding or the chest pains, I thought I must finally have lost my mind. Surely no one could be quite that stupid. I looked at him and said "Don't be so bloody stupid. If I was brought in here after a traffic accident with two broken legs you wouldn't ask me which one I wanted fixed!" He decided to phone the Gynecology Clinic and ask them for advice.
The mental genius there told him to increase the dose of the Norethisterone from three tablets three times a day to four tablets four times a day. Now I experienced an exponential increase in the number and severity of side effects. I seriously thougth I was going to die.
Three days before I was supposed to go for my tests, I was bleeding heavily again and back in the emergency room. This time the doctor said "You're having your procedure done on Friday, what do you want me to do about it?" In absolute frustration I replied "Well you're the fucking doctor, deal with it!" She dealt with it.
Friday arrived and I was in the Day Surgery ready for my hysteroscopy. Due to the fact that I have a horrendous history with general anaesthetics it was decided to do the procedure with a local. I asked the surgeon if I could have a screen so that I could watch the procedure. He asked if I was sure. I told him that it was either that or I'd have to tell corny jokes. He gave me a funny look and said "Do I have to laugh?" and I replied "Not if you're holding something sharp!" At least my sense of humour was still in tact.
I got my screen. I also got a theatre full of medical students. Just what I needed!
I had to stay in the Day Surgery for longer than expected because they were having trouble getting my blood pressure down. When they finally got it down to a level where they were happy for me to go home, the nurse started giving me the usual discharge info. "Make an appointment to see your GP in about two weeks. You'll receive a letter from us with an appointment to discuss your results, in about six weeks." Then, "Oh, wait, they've given you an appointment for next Tuesday." That was it. I knew it was going to be bad news. If it was normal to have to wait six weeks for this appointment and I had one in two days, it didn't look good. Besides, I had been watching the screen. Now I have no idea what a healthy uterus is supposed to look like but I was pretty sure it wasn't supposed to look like what I'd seen. I am also quite adept at reading upside down, and I could read the recommendation at the bottom of the theatre notes: Recommend immediate total hysterectomy.
I turned up for my appointment on Tuesday, only to be told "I'm sorry, but you have Grade 1 Endometrial Cancer." She went on to explain what this meant, but I really don't think I heard anything she said after that one sentence. I'm glad my sister was with me, because she was able to tell me afterwards what else was said. I know the doctor arranged an appointment with the Oncology Clinic. I vaguely remember asking for the long awaited literature, now that I had a diagnosis. "I'm sorry, we don't have any. You'll have to Google it." By this stage I was convinced I had been transported to a parallel universe where nothing actually made sense.
I went home, and Googled. I think I checked out every site which mentioned Endometrial Cancer. It helped a bit. The problem was that none of the sites answered the specific questions I wanted to ask, so I continued to play the waiting game. In the mean time, the side effects from the medication were getting worse and worse. I was putting on weight hand over fist. I was suffering hot flushes twenty four/seven, my skin was breaking out, I had hives, I had migraine headaches which lasted for four days at a time, you name it, and I had it. I was by this time also experiencing "rage" attacks to the point I was afraid to go to the supermarket. I though that if someone dared to jump the queue, I might tear them to pieces.
Finally, I arrived for my Oncology appointment, and what a difference. I couldn't believe this was the same hospital. Everyone was so kind. From the consultant right down to the receptionist. I was finally being treated like a human being instead of a number. I remember the consultant saying to the resident "This is disgraceful. You can't treat people like this!" These wonderful doctors then explained everything to me. They answered all my questions, and even a few I hadn't asked. I was given a date for my surgery, and I left feeling better than I had in months.
I continued my efforts on Google. I looked up hysterectomies and found videos of the procedures, which I watched. I just needed to know as much as possible about what was going to happen to me.
May 10th arrived and I was bundled off to surgery. I was too worried about my history with general anaesthetics to think much about the procedure. When I finally woke up, well sort of woke up, I was told that my cancer was Stage 2, and that I would require radiotherapy.
I stopped taking the medications and in the five days I remained in the hospital after a radical hysterectomy I lost six kilograms at the same time all the side effects I had been experiencing disappeared. I felt healthier the day after my surgery than I had in months, I guess that says as much about my state of mind as it does about my health. I left the hospital and stayed with my sister and brother in law for the next four weeks so I wouldn't have to do too much in the way of house work.
In mid July I began five weeks of external beam radiotherapy which made me so ill that I couldn't eat anything and I ended up losing another fourteen kilograms in a matter of weeks. Through it all I managed to hang on to my warped and twisted sense of humour and I'm sure it was just this that kept me sane. Once I had finished the five weeks I had two brachytherapy sessions. Now these were a riot. I remember the first one, vividly!
Firstly the Radiation Oncologist inserted the applicator, which was then attached to this contraption on the treatment table. It looked like something out of a torture chamber, but never mind. Then the nurse attached the end of the cable to the applicator and the physicist came in and attached the other end of the cable to the machine which contained the source. It was like bloody Picadilly Circus! Every man and his dog seemed to be in there. Of course when the Oncologist said "Now when the machine starts try not to move." my sense of humour went into overdrive and I replied "Of course, we wouldn't want me to enjoy the process would we." Dead silence. Then the laughter started. Both the doctor and nurse were in stitches. Then I was left alone, with a radio and the radioactive source for company. I endured two of these sessions, then freedom of sorts.
I was still too sick to eat properly and even now my appetite hasn't completely returned. My IBS which hadn't caused any symptoms for more than twenty years was back with a vengeance. Now I was back on the antispasmodics and the pills to prevent the diarrhoea. Was it never going to end?
Today, the IBS has settled down somewhat, but I'm still having to take the medications now and then. I have to be careful what I eat or drink, for instance orange juice is out of the question at the moment, because it just goes straight through me. All in all I'm now feeling much better, except for the nagging worries about those upcoming tests.
Coming next... the emotional struggles
