I gained a lot of information from surfing the net... however I found a lot of "worst case" personal experiences. Since I found my own experience to be fairly positive, I thought I'd add this blog as part of the information available.
BACKGROUND - The finding out
I've had several years of what I call my "physical pain phase" where I had pains in various parts of my body, mostly in my back. Sometimes my feet hurt too, especially after a whole day on my feet delivering training, but thats because of my weight. Not that its less important or anything (I've been constantly losing weight at the rate of about 1kg per month for 2 years or so) but the ones in my back seemed unsolvable. I went to a specialist who gave me medicines to kill the pain and they worked, but they'd come back, I'd go to an emergency room, get pain shots and afterwards visit my specialist who gave me another round of painkilling meds. About a year ago I not only had pain in the middle of my back, I started throwing up. That drove me to the nearest emergency room, and they advised me to undergo a scan. I discovered I have gallstones, and they act up when I take foods too rich in fats / oil.
After the surprise and fear, my husband (God bless him) searched the net while I was still in hospital and discovered that contrary to the advice that I was getting at the time, gallstones do not necessarily require surgery. I can to some extent minimize the possibility that I will experience any pain at all by controlling what I eat. I have been doing that for one year, and my gall bladder has only acted up about 4 times within this time. At the same time I am in the waiting list at University Hospital, where my condition is considered minor and they'll call me up for an operation when they have a free slot. I was called up once into the third slot of the day's operations, but did not go through with the operation because the other two before me ran over time. The surgeons told me this at the outset, so thats okay. After all, I'm doing alright and I don't mind it at all since its not life threatening.
But I still had pain in my lower back, on my right side. And the pain was spreading to my right hip. I was told that I have a slipped disc, and went for physiotherapy. THEN I started feeling pains in the lower part of my abdomen, again on my right side. When it persisted off and on for about 3 weeks, on 20th February 2011 I saw a doctor (not via emergency room this time), she did a scan and told me that I have a large cyst with a "worrying" solid component in it and that I should arrange for an operation ASAP. She gave me a referral to University Hospital, and I obtained an appointment at the UH gynecological clinic for the next day because I was in pain (if not it would have taken 2 weeks).
THE OPERATION AND HOSPITAL STAY
On the morning of 21st February I saw the doctor, was scanned again and told that my cyst was 18cm long, and I was immediately scheduled for emergency operation. Now, this is not a normal thing at UH to be able to go into operation immediately, so that was worrying me a bit, because I took that to mean that this is a major serious thing. I was wheeled in for operation at 2.00 pm. I was told that the operation started at sometime after 3.00pm (I had no idea what time it was because I wasn't wearing my watch of course). My husband tells me that when I came out of the operation, I smiled at him and spoke. I don't remember any of that, I guess I still hadn't fully came out of anesthesia. My first memory after the operation was when I was already back in my hospital bed, and I said a few words (I don't really remember what I said either) to my 2 cousins and my brother, after which I fell asleep again.
I was hooked up to a morphine dispenser. I had it for 3 days and I absolutely loved it. There was a button I can press any time I feel pain. I was incredibly worried that I couldn't reach it or the call button when I needed it during those times when my husband was not at my side, so I had him attach both of them to my left hand using my watch strap. That worked, I could reach both buttons any time I wanted, but when I fell asleep (which was often) I sometimes pressed them by accident. I might have driven the nurses rather nuts, though I don't know for sure... they were very nice throughout. I did suddenly itch all over on the afternoon of the next day, which I was told was a reaction to the morphine. I was given an injection and the itch went away almost immediately. That morphine dispenser was a wonderful blessing. It doesn't hurt too bad when I'm just lying down doing nothing, but it hurts to cough and sneeze or even laugh, and I couldn't stay lying down in one position for the whole day. For one thing, my back got stiff, and for another, I had to eat so I had to sit up for that.
Ever since the operation, I had a catheter in me so I didn't have to go to the bathroom to urinate, and there was also a "drainage" tube inserted to drain out blood and stuff which might have accumulated inside after the operation. On that second day after the operation, I was starting to take an interest in things again, and the main thing I was of course very interested to know about was what my incision really looked like. Since it was under my navel, I couldn't see most of it very well, and it was only on that second day I got the brilliant idea of getting my husband to take pictures of it with my phone cam.
While in hospital, the doctors visited regularly on their rounds of course. I discovered that my cyst was called a Chocholate Cyst or Endometrioma. I was told that it generally inhibits those who have it from getting pregnant, so that now its out I have a greater chance of pregnancy than before. However, the tests on tissue samples from the cyst as well as areas surrounding it will take some time, and I would not know for sure whether its cancerous or not until I go for my follow up on 16th March.
3 days after the operation, I was partly mobile. I wasn't jumping around by any means, but I could get out of bed, and I took a walk out of the ward with my husband in worried attendance, carrying my urine bag and the drainage bottle with me. Having accomplished this, I soon found the catheter and drainage tubes taken out soon after. It was rather painful taking out the drainage tube, but I that was to be expected. After all, it was all the way inside of me and went through my body tissue and not through an existing orifice. It was done very quickly so it wasn't too unbearable. Since all seemed to be progressing well, I was pronounced ready to go home on Day 4 after the operation.
CONVALENCENCE AT HOME
I was intending to drive home. Since I wasn't expecting to be warded immediately on the same day I went to see the gynecologist, I of course drove my car to the hospital, so I thought I'd just drive home again. Luckily for me, my husband and my mother convinced me to take a cab instead. My husband chose a comfortable, new-looking cab with Airport stickers to take me home. He just stood in the cab line and let go other cabs that didn't look so good. It was a good thing he did that, because even though the cab driver drove very smoothly (Airport Taxis are usually very good at this -- it probably has to do with the clientele they usually serve) every small bump on the road seemed to communicate with my tummy. I guess I would have still been able to bear the pain, but it would certainly have been an extremely painful experience had I decided to drive myself home. Somehow, neither my husband nor I thought to ask the Doctors whether I could drive, or when I could safely do so. In any case it was only when I got home and managed to get on the net and read up on some stuff about Endometrioma that I discovered I wasn't supposed to drive for the first 3 weeks.
The first few days at home were rather challenging. At that time a full bladder was rather painful which woke me up even in the middle of the night, and I couldn't get out of bed without help so I had to wake my husband up so he could help me.
I was very careful about food. No molluscs (octopus and shellfish), crustaceans (shrimp and lobster), or albacore tuna (ikan tongkol / ikan aya) because traditionally they are known to wreak havoc with wounds (cause itching and sometimes worse). Nothing from the gourd family, because they are traditionally known to cause excessive gas. No red meat either. I stuck to carrots, daikon (lobak putih), yardlong beans (kacang panjang), anchovies and scomber (ikan kembung). My husband usually cooks them with black pepper, garlic and onions (all being known to be efficacious in illness), and sometimes with oyster sauce. I didn't think there were really any oysters in oyster sauce so even though I had an embargo on shellfish I thought it was safe to use that (actually, I never thought of it till I was writing this and in any case it didn't seem to have done any harm). There are of course other stuff that I could take, but I stuck to those because I like them best. For variety, I took oats with milk (mixing them with mango so its not too bland), and wholemeal bread with jam, and later on, when I got tired of jam, with beans in tomato sauce.
I took some supplements: 2 tablespoons a day of Gamogen, which is an extract of sea cucumber, traditionally very well known to be good for healing wounds, although if wounds heal too quickly, the scars can be much more pronounced; and Snakehead / Snakefish (ikan haruan) essence, also traditionally well known to be good for healing wounds. I have to confess that I missed out taking the fish essence most of the time because it tastes horrible, though I was very regular about the Gamogen. I also took honey ginger (halia madu), one tablespoon a day in hot water, usually with lemon and sometimes in my milo. I had been regularly taking honey ginger even before the operation, because it relieved my period pains and muscle aches. Traditionally, ginger is believed to release gas from being trapped in the body. Since I was passing gas a lot (I had been urinating but not passing solid stool for the first 2 days at home, even though I was eating) I guess it was effective. On the days that I actually forgot to take my honey ginger, I had more pain especially at night and most towards the early hours of the morning. I imagine this to be because the gases were "stuck" somewhere in me and needed the help of the honey ginger to get out (this is only what I imagine yea... I have no idea what is actually happening).
In any case, things were progressing well. I can feel the pain lessening from day to day. I had trouble when I ate too much, especially during the first 2 weeks at home. Bowel movements caused me pain too. Especially approximately 1 hour before its time for me to defecate. Because of this I tended to eat a little at a time and drank lots of water. When I ate rice my husband boiled it soft, almost to a porridge. I basically made sure that my stomach wasn't too distended and that I had soft enough feces so that it would come out without much trouble. That worked quite well. Coughing and sneezing was very painful even though I did as the nurses taught me and held my stomach in with my palms while sneezing and / or coughing. However, all pains progressively became less. Tenderness around the incision area persisted for some time... even after all the bruising disappeared. In the beginning sitting up and walking also gave me some pain, but all the aches and pains did grow less as the days passed. I could practically feel the improvements in pain level from day to day. Now, at the time of writing, I no longer experience any of those pains, although I still feel sort of a "tension" at the incision itself. Yesterday I dared to wear my jeans (earlier, the rough jeans cloth was uncomfortable against the incision and the skin surrounding it) and it felt fine.
THE FOLLOW-UP
So my follow-up was scheduled for Friday, 16th March. As usual, its always a good idea to get there early so that I'll get the earlier numbers which means I get to see the doctor early, so my husband and I started off from home at 6.45 a.m. and arrived at University Hospital (UH) a little before 8a.m. Yeah we got the early numbers, though there were already people there before us.
When I saw my doctor, I was told that yes, the analysis showed that the cyst was cancerous. He classified it as stage 1C. So since the cyst had burst while it was still inside my body, I should go for Chemotherapy. I understood from him that I would be undergoing 6 sessions of chemo, approximately 3 weeks apart. I would experience some nausea and weakness from which I would recover within a week, and after which all would be normal again until the next session of chemo.
Before I could go for chemo though, I needed to get a CT Scan. My doctor personally called Radiology, he was fully intending that I should get the CT Scan done that day itself. I really appreciated his efficiency and his way of getting things done quickly. Unfortunately since I have an allergy to aspirin, I had to take some pills first before I get to the CT Scan. So I was given 30 tablets to take 10 each on Sunday 6pm, midnight, and Monday morning 8.00 a.m. and that I should not eat or drink anything except plain water after midnight.
THE CT SCAN
I came back bright and early on Monday morning 19th March for the scan. I took my last batch of 10 pills while waiting for my number to be called. I had to change into the hospital blouse, which tied in the back, but the nurse was kind enough to tape all the gaps closed because I had to walk around a bit with it on. The lady who inserted my needle for the CT Scan dye kinda freaked me out a bit. I guess she was a doctor or a radiologist or something, I'm not sure. She was nice (they were all nice), but she was explaining to me the CT Scan process, and she told me that there was a 0.001% chance that my heart or lungs could stop (!!!) if I had a severely adverse reaction to the dye, and I had to sign a release form that I understood this could happen. I was so totally not prepared to hear that LOL. I mean, I've heard people die from operations, and I certainly know people die from advanced stages of cancer, but from a CT scan? So I was like.. "Well, you'll have people around who would try to restart my breathing or my heartbeat if that happens, right?" And she was like... "Well, yes... but we can't guarantee that we'll be able to do it..." :O I tell you... 0.001% is one in a THOUSAND. Thats rather high when its my life we're talking about... I seriously considered walking out at that point, but then I remembered that I've never even heard of anyone dying from getting a CT Scan done, and I'm sure I'd hear of it if it ever happened to anyone I know or anyone my friends / relatives knew. So I kinda quietly concluded to myself that the nice lady probably omitted a few zeroes, so that its probably closer to one every 100,000 or maybe even 1 in a million. In any case I said never mind, I'll still get the CT Scan and I signed their form.
I had this dye inserted in me through my... ah... anus. That didn't hurt much but it was a weird experience lol. The nurse who did it was very nice and polite about it. In fact, everyone was nice, friendly, polite... everything you could wish for in a medical establishment. After that I had to wait a bit before going in to the CT Scan room, then finally I was lying down in that machine, waiting for the warm feeling, any itchiness, nausea, dizziness, a bitter taste in my throat that could last a whole day.... all of which I had been told I might experience. I felt a very very very slight tingling warmth in my hand when the dye went in, and thats it. The whole thing took less than 5 minutes and I was surprised that it was over so quickly. I must say I was very cheerful afterwards, I could hardly stop myself from laughing for no apparent reason. I guess the "heart stopping" thing worried me a bit more than I was willing to admit even to myself.
PRE-CHEMO
My Prof (my Gynecologist is an Associate Professor so I call him "Prof") had asked me to send him a text message once the CT Scan has been completed so he could immediately follow up on it. His initial explanations on the effects of chemotherapy was rather diametrically different from what I had previously conceived it to be that I just had to ask more questions. That meant another appointment to see him, but this time he asked me to meet him at the Oncology ward at 10a.m. on Thursday 22nd March, which actually means I don't have to queue for a number (is he cool or what?). I did not know until I got there, but the place where I saw him is where chemo was done. It took a huge load off my mind when I saw several ladies with the drips connected and they did not show any obvious discomfort at all that I could see. I was also relieved to know that the chemo I would be going through would not have any permanent effects on my fertility, even though I might find that my menstrual cycles would stop while I was undergoing chemo. Any such effects would dissipate within 6 months from my last chemo session after which I could start thinking of having children, although it would be advisable to wait for 2 years, just in case I have a recurrence of the cancer. During that consultation I was told to come back on the following Monday so that they could complete tests I'll need to go through so that they can calculate the amount of chemo medication that I would need, as well as making sure that my kidney functions are normal etc etc. I couldn't help but laugh when the nurse handed me a bottle of approximately half gallon size. I thought she wanted me to fill it there and then, but apparently I need to store up a whole day's worth of urine for them to test.
Storing up urine in a bottle is funny lol. I'm a GIRL and its not so easy for us to pee into a bottle ;D But I solved the problem and the urine was duly collected. Monday, 26th March my husband and I went to hand in the urine sample, get my blood samples taken, my weight and height measured so that my chemo medication can be calculated. Apparently the dosage depends on my size. The staff nurse in charge scheduled my first tentative chemo date for Wednesday, 28th March.
Coming back from all the sampling, I stopped by the eXfuze office to get a batch of SEVEN PLUS CLASSIC. Testimonials from all over the world says that it dramatically helps the body to heal from injuries, fight off or minimize the effect of diseases including diabetes, high blood pressure, etc. It also builds physical strength, including our body's natural immunity to infection. Since one of the side effects of chemotherapy is a lowering of immunity to infection, I started taking double doses of it and I plan to do that at least until I finish my first bottle, and, depending on the situation, I'll consider continuing taking double doses throughout my chemo.
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