Update #3

Last week I had a scare. For a couple of weeks before that I had some pelvic discomfort, sharp jabs, low level localized pain. Since I still suffer from sudden urges to urinate, I thought that my problem was bladder related. But then last week I started to have a pinkish discharge, almost the kind I had before the onset of spottings.

I immediately set up an appointment with the oncologist and went to see him a few days later. He examined me VERY thoroughly -- front, back (for a couple of days I was sore during BMs :)) but luckily he concluded that all he found was a mild inflammation at the end of the vagina, in the area that was affected by the radiation. He said that this is not uncommon, it can show up even months after the treatment. He seems to have been right, the symptoms are slowly receding...

Update #2

I am getting busier and busier since I had a good look at all the projects that got postponed due to the illness. Luckily I am recovering very quickly. Sometimes there are days that I hardly even think of what has passed. The elimination processes are more or less back to normal. The most annoying aspect that is still there is the urinary urgency. Even that happens only when I stand up from lying down or sitting for a longer period. I am working on it, though, twisting my legs together and holding it in tightly until the feeling of urgency is gone. At that point I still feel the need to go to the bathroom but I am in control.

I have my first follow-up appointment tomorrow. I will ask whether they think if I still have some remnants of an inflammation. Another issue I must solve is the rash on my arms, souvenir from the CT scan dye. This week-end it was particularly bad. It flared up and my arms right now are covered with hot, red welts again. I MUST see an immunologist about them!

Update #1

An important milestone: I had the first normal bowel movement in over a month. I did have a few more softer ones during the day, but that first one of the day felt goood! It also put my mind to rest as far as my concerns about possible chronic colitis go. I mean, there is always a chance that some degree of unusual bathroom habits may linger on, but today was already close enough to normalcy with which I can live.

I still have bladder sensitivity, urgency, and vaginal burning (I did not use the dilator - ahem, dildo - yet). I also still have the occasional moments of weakness, a sensation akin to near fainting. And the rash on my forearms, originally triggered by the CT scan dye two months ago, is still alive and well. Yesterday I actually developed some dime size welts which are still there, although getting paler and not itchy any more. If I get better in a few days I will go see my family doctor. Maybe we should consult an immunologist...

Brachy 2

I finally have not only the second brachytherapy session but the very last radiation session behind me! A grrrrreat relief...!

The session itself seemed a bit shorter than the first, but then it may have been psychological, due to the familiarity the second time around. After the session I also had an instruction session as to how to use the dilator provided, just in case I develop vaginal stenosis (tightening of the dear little canal until completely shut - as a result of some serious inflammation). Well, I will consult my husband to see if we could use a more natural methods of keeping the opening accessible... :)

During the day on Friday I experienced some weakness and decided to do some grocery shopping and prepare extra food so I can rest. I just about finished when the kids dropped by to see how I was and to congratulate me for surviving the treatment. Seeing all the food resulted in an impromptu dinner party, and everything disappeared as fast as if we were hit by a cloud of locusts. After which I heard the following remark: "See, I told you there is always enough good food at Mom's..." Bless their souls, it WAS a nice little party!

As a result of the celebrations, on Saturday we had an "hors d'oeuvres day", having toasts, spreads, omelet, salad. I also did some web search about possible long lasting post-radiation problems, and the thing that popped up most prominently was hyperbaric oxygen therapy . The theory is that increased availability of oxygen to damaged cells can increase the chances of healing. I gave it a thought: a session in the pressure chamber costs on the average around $180. The research suggests that there is improvement by repairing damage to the bowel and rectum. Since I managed to reduce the side effects to my bowel, I may not really need oxygen therapy. Instead I do deep breathing exercises several times a day, whenever I remember to do so.

The breathing exercise is quite simple. I exhale forcefully, then breathe in, taking in a nice amount of fresh air, hold it for a few second, exhale fast and repeat. The emphasis is on the "hold it in for a few seconds". This may not be as effective each time as a pressure chamber session, but I hope that doing it dozens of times during the day may cumulatively be of similar value.

Brachy 1

Yesterday I had the first session of brachytherapy. It was relatively easy, except for the ignominy of having a tube shoved up into my privates... The radiation is not supposed to worsen the bladder or the intestinal problems because the affects of the irradiation (as they said) has a tiny range. Yet, at the end of the session they held up a Geiger counter against my belly and nodded, indicating that it was the right amount that I got administered. That made me suspicious, after all if it can be measure outside the body then it must have some effect on the surrounding organs.

The rest of the day was not different than the previous days in the past week. I do feel weakened, although my muscles themselves are obviously not weaker. Today, almost 34 hours later I was suddenly hit by a low level pelvic floor pain, almost like a menstrual cramp, making my teeth hurt and making me slightly nauseous. Plus, since then I feel a burning sensation all along the vaginal walls. I will have to ask them tomorrow to have a look. I suppose this is the inflammation that may (will?) cause the stenosis (the narrowing of the whole vagina)...

Day #25

That's it! Last day of external radiation.
Tomorrow I will have the first of the two brachytherapy sessions. After my session this morning I met both the technician who will administer the intravaginal treatment and my regular doctor. I got all the preparatory explanations of how things will unfold. The radiation source this time is iridium 192 grains. They also warned me that this time there may be a bit stronger side effects. This made me look for all the possible long term effects and I am not exactly happy with what may possibly stay with me...

Day #24

Ahhh... I am sooo sick and tired already of these treatment sessions. Almost a month and a half already!

I mentioned to the girls about the cracked hemorrhoid that is still bothering me. They suggested sitz-baths, which I tried this afternoon but I found it to be ineffective since the crack is not external, it seems to be a bit higher up where the bathwater cannot really reach. I really hope it will heal soon because it is quite painful.

BTW, the girls also warned that Vaseline is not a good idea for a sore anal area. They suggest that it is better not to use anything, just wash often, possibly after every BM.

Weekend #5

This was another long weekend, but God knows I need them. Even so I was overly weak, definitely the weakest during all the treatment. Otherwise the other symptoms did not get worse, BMs are the same, my bladder is actually somewhat better, and the rash on my arms is getting better - the bumps are still there but not red and not itchy.

On Saturday we went to a restaurant with some friends and after the meal we decided to take a short walk. I forgot that my urges for elimination are sudden and furious, and I got caught after a few blocks. I rushed back to the restaurant as fast as I could, but I had to stop a few times, crossing my legs and sucking in my guts. By the time I got back to the restroom I was beet red and drenched in sweat. Another lesson learned... :)

Day #23

If it was not for the two extra days (the long week-end and tomorrow's machine maintenance day( I would be finishing tomorrow. Like this, I have now three days off and then another two external radiation sessions, followed immediately by the brachytherapy. I feel now the negative impact of this whole treatment very strongly. Although I managed to avoid the diarrhea part, I am exhausted, I have pains in the lower abdomen, urinating is now quite painful, and most of all I suffer very much from the rash that covers both my arms.

I went to the nursing station after today's session to ask for advice, but they seem to be non-plussed about it. They agree that it is quite unusual to still have the rash from the CT dye after well over a month, but when I voiced my concern about the possibility of it being psoriasis, they said: "it would be the first in medical history for a CT dye rash to turn into psoriasis". They feel that once all the treatments are over it should get better on its own. They suggested Aveeno lotion to control the itch, Benadryl for when it gets really bad, and some hydro-cortisone cream topically to reduce the bumps. Well, I happen to have Cortate at home (inherited from my late mom-in-law), 1% strength. I tried it today but, while I had it on, I experienced a major flare-up, as far as I guess from eating some chocolate wafers (two offenders - chocolate and wheat gluten). Hmmm...

Day #22

It is now clear that if and when I suck my guts up, away from the beams, I greatly reduce my intestinal woes. Today I did so and all I had to deal with today was the extra gas combined with the small soft plugs. Unfortunately I was still in a lot of pain because yesterday the straining produced a small fissure in one corner of the anus. Not only did it bleed and did so even today a few times, but every time fecal matter gets near to it, it burn like hell. So I try to just hold everything in.

On the other hand the tweaky, tear producing pain in my bladder returned. But if i have to choose between the pain of the anal fissure and the bladder tweak, I choose the latter. I just hope I will not end up with long lasting (chronic?) cystitis. For now I have one more day this week because on Friday they will be doing some maintenance work on the machine. This means that I will have two more sessions next week to complete the set of 25. Plus the two brachytherapy appointments. Arghhh...

Another further development is that little parts of the rash on my arms started to become dry and and scaly, which indicates a developing psoriasis... Now that is what I reaally need to complete the picture... :-P

Day #21

In spite of all the precautions the symptoms of radiation sickness are catching up with me. Because of the overly sensitive bladder my son suggested to maybe let the intestines protect it a bit, not pull them out of the way just for one day, or else I may end up with severe chronic cystitis. I felt that he has a point, so today I let everything stay in its natural position. Well... within hours I started to run. By now my hemorrhoids are swollen, I feel raw, even though I washed myself carefully after every washroom visit. On the other hand, my bladder is really a bit more relaxed. The pain is not as sharp as it was yesterday. The burning sensation that I felt as a result of abrasions after the sizing has subsided by early evening today, so at least that is out of the way. Except, I will be anticipating it after the brachytherapy.

Tip: do not use baby bottom creams for the raw anal area, like Zincofax or Penaten. They may actually make things worse. The best is to just use a simple petroleum jelly (Vaseline).

Day #20

The symptoms of radiation side effects started to catch up with me. I may have reduced the enteritis problem but my bladder is getting a lot of abuse instead. Now I have sudden urges, painful voiding, and overall sensitivity in the whole lower abdomen.

I also had my meeting today with the doctor who will do the brachytherapy. I was measured and given some information about the procedure. The measurement involved the insertion of a tube quite similar to the one that will be used during the treatment. It produced some minor abrasions both inside and outside in spite of big gobs of lubricating gel, probably because of increased sensitivity of the whole area. This then made peeing a bit more painful by producing a burning sensation around the labia.

I found a good site where they explain the usual amount of radiation one is given both for the external and the intravaginal radiation treatment.

Weekend #4

On Saturday I had a very bad allergic reaction to something. My arms are still covered with red itchy welts, actually the arm itself is swollen. The morning started with a couple of very urgent BMs, of almost diarrhea consistency, but then by noon I was perfectly OK. Whether the two had anything to do with each other, I have no idea. Otherwise I felt quite strong all day, except for a short period while sitting in the hot car for some 20 minutes, waiting for my husband.

Today the day started the same way, with the explosive BMs and then fine for the rest of the day. But the pelvic floor seems to be more sensitive than usual, my belly is extended a bit, and urinating is quite painful. It is not the urethra, I do not have an infection, but as the bladder collapses it produces a painful tweak. The only way I can reduce this somewhat is by stopping and restarting the flow, releasing in two or three batches. I have the impression that the whole floor area is inflamated, causing a general sense of malaise.

I found a few articles on urinary problems during and after radiation: [1], [2], [3].

Day #19

A hard day today... For some reason I was not as successful with my tummy sucking as usual and the result was an almost full blown diarrhea. Of course, I wash myself after every BM, yet the anal area is still quite sensitive now. I also had a rash problem, scratching my arms resulted in lots of red bumps. And I developed odd dry spots, one on my neck, one on my right wrist. About dime sized and just as itchy as the bumps. After all the scratching now it looks slightly raised, red, flat and shiny. I also had lots of weak moments even coupled with slight nausea, so I had to lie down a lot.

Day #18

This was a relatively quiet day. Apart from the bouts of weakness there was no gassiness, no rash. But the pelvic floor is definitely inflamed and it makes urinating uncomfortable. Every time, as the bladder collapses, it produces a twisting, squeezing sensation that brings tears to the eyes.

Day #17

Arghhh... the problem with being gassy! You have to make sure that you let go of any of it ONLY in a washroom. Hold it in even when you are somewhere outside in the open. I had one today that clearly felt like a regular tiny wind, I did let it go, except it had a little soft plug preceding it which then ended up on the underwear. Lesson learned...!

Day #16

I still have this problem with the sudden faint spells, a sudden draining of strength. My older son teases me that it is "radiation sickness", which is of course true in a tongue in cheek way. Although there is no diarrhea, I am again very gassy, and as a result I go to the washroom often (6-7 times today) and pass little soft pellets.

A small tip about the time of day you should request the sessions to be/ If you ask to have them anywhere after 10am, you run the chance of them running behind schedule and you have to wait a lot. Which is not very comfortable, given the fact that you have to drink a lot an hour before so you have the radiation with a full bladder. Best is to have it somewhere between 8 and 9am.

Day #15

AS happy as I was over the weekend, after today's session I experienced all kinds of problems. Right after it was over I felt sharp jabs just above the pubic bone area, lasting for about an hour. I was very gassy all day, and I had unusually many moments of weakness. Not just tiredness, it was more like being close to fainting, even while I was sitting in an armchair.

I thought my technique is good enough to make me sail through the whole five weeks feeling perfectly fine, as if I did not even get radiation. My body says otherwise. Now I face the rest of the treatment with a certain degree of dread. So let's see how things will unfold in the next days...

Weekend #3

I must confess I start wondering whether all the symptoms described in those documents all are produced by the enteritis. And now, since I solved that problem, I hardly have any symptoms. It is awfully late now, I will continue this blog entry tomorrow, but i intend to summarize here the technique of not getting your intestines get irradiated and thus not develop the symptoms.

Day #14

Had a very tiring but good day. Our younger son had his birthday today and I cooked and baked, with only the occasional tiredness spell. Absolutely no sign of gastro-enteritis. I only feel a rumbling low level pain around the pelvic floor, similar to a period.

Day #13

My bumps got itchy again today. I also get the waves of weakness more often. And both yesterday and today I had bouts of palpitation. Not bad, if I lie down right away it stops in a minute or so. But it is a sign that my system is generally getting over taxed.

Day #12

Still no diarrhea... But my bladder is obviously starting to get affected. I feel pain when voiding, and I have to go more often than usual. Otherwise I am still functioning quite well, doing all the household chores, going shopping, etc. What I noticed already during the first week was that about two hours after the session the inflammation sets in and I feel quite off for the next couple of hours. Therefore I requested to have the sessions really early. I have them anywhere between 7:30 and 9:00. But this way the reaction is over and done with by lunchtime and I am relatively alright for the rest of the day.

Day #11

Today I had an unusually bad urticaria incident. Both my arms and around the collar area on my neck the little bumps that have been lingering ever since my CT scan reaction, have flared up, turned red and made me scratch furiously for several hours. Unfortunately I ran out of Benadryl and, being a kind of anti-medication person, I opted for just riding the attack out.

I have absolutely no idea what causes these flare-ups. I did have a slight sensitivity to wheat, eggplants, chocolate before, which manifested in small bubbles on my fingers (dermatitis herpetiformis), but I keep away from all of these. The bumps now cover a large area on my arms from the elbow down, plus around my neck. And they did not disappear. Even when they are not itchy, I can feel them when I run my fingers along these areas, and if the light shines on my arms at a certain angle, they are actually visible.

If anybody here reading this could shed some light on this lingering problem, I would very much appreciate your input...

Weekend #2

Just as a quick explanation: the dates always show the following day because I only get to my computer after midnight. And this time it was a long weekend, Monday being Simcoe Day here in Toronto.

Anyway... The weekend was a mixed bag. On Saturday I failed to have even one single BM. So, in my wisdom, I had a big bowl of All Bran and two plums before going to bed. Not a good idea! Then again it may have been in combination with a mild stomach flu, because I also had a scratchy throat, but in any case I developed stomach (not in the belly!) cramps and a LOT OF gas, which then resulted in lots of washroom visits involving small balls of soft fecal matter.

Otherwise I feel all right, except for the occasional wave of weakness. But a short lying down takes care of that.

Day #10

Wow! I applied the same technique today and to my amazement the diarrhea stopped altogether. This means that I am lucky enough to have been able to suck my bowels high enough out of the way so the radiation does not touch it any more. I will have to discuss this with my doctor, but logically I cannot see any problem with it. I had everything taken out, basically they are radiating the pelvic floor, where the cervix used to be. There is nothing else left there that I would potentially "suck away" together with the bowels.

Now, this does not mean that I am totally symptom free. I still have coming and going pelvic pain, like during a period. Also, if I get frisky and overdo things physically, occasionally I have a wave of loosing my strength, making me feel like a collapsing tower of cards. If I lie down, I can recover in a few minutes

Day #9

I had an idea today and I decided to give it a try. It is obvious that the inflammation of the bowels was getting gradually worse. So I was thinking of ways to get those bowels somehow out of the way. When I got ready for the session, I decided to "suck" the lower part of my abdomen higher. I exhaled, pulled the diaphragm upward and used the muscles of my lower abdomen to try to push the bowels up, out of the way. Whether it is as a result of this action or a coincidence, later in the day the frequency of my BMs improved I will try to do the same tomorrow to see if this really works.

Day #8

Nothing new today. Everything more or less the same as yesterday. Maybe a bit more tired... but that could also be because all this week I have my sessions at 7:50 in the morning, which means that I have to be up by 6:45 to drink the prescribed amount of water so I will arrive with a full bladder. And getting up this early is a bit too early for me... I am a night owl by nature. :)

Day #7

The most dramatic development today was the slowly rolling-in diarrhea. It still isn't of a liquid consistency, it is more of a soft stool, but it comes in explosive batches mixed with gas, and quite often. At least ten of them today. The result is a sore anal area, for which the best treatment is to wash after every BM.

Another development is that elimination, both nr 1 and 2, are a bit painful, just like it used to be during my periods. So I just "let go", trying not to push. Otherwise I am still not tired or nauseous. I can still go about my daily business as usual, as long as I am in the vicinity of a washroom...

Day #6

The sessions seem to be getting even shorter, just one buzz from each of the four angles. It makes me worried, though, that given the total prescribed amount of radiation, each buzz must now equal twenty of the shorter buzzes of the eight angle sessions. I would have liked to discuss this with the doctor today, but he was very much behind. Even after I was told that I am next and was ushered into an examination room, I still had to wait over half an hour for my turn. He asked about the side effects, and he said that he was happy that I still did not develop nausea and diarrhea. Then, after a few sentences, he stood up, said good bye and left.

From the technician girls I found out that we are using intensity modulated therapy, that the linear accelerator produces high energy x-rays which then "sterilizes" the area the radiation covers.

After the session I did have the low abdominal pain again, and a funny feeling in the vaginal area, a cobwebby sensation as if the vagina became very dry, which of course is not the case. The sensation lasted about an hour, gradually diminishing. I also had several bowel movements over the day, looser than normal, even though I do not take milk of magnesia the night before any more.

Day #5 and Weekend #1

I had the last session of the week on Friday afternoon. The new set of angles made quite a bit of difference in the side effects. It is obvious that having a wider area irradiated creates more collateral damage. I developed a low, rumbling abdominal pain, something not unlike an oncoming period. The effects of the bowels manifest not so much in loosened stool but an increase in gas. Today (Sunday) I embarrassed myself by passing a little whistle during dinner, at the table... I had to reach for something across the table and... oops...

But the biggest problems are a) I am tired and b) I don't seem to be able to get rid of the food sensitivity problem that I developed after the CT scan. I am definitely sensitive to gluten, but today, for example, I did not have any wheat, yet I have quite a dramatic attack. Just like during the reaction to the dye, both my arms, the outsides, are covered with bubbly hives, and the same for the front area of my neck. We are out of Benadryl, so I took a Reactine, but it did not do much. I am still scratching furiously as we speak.

Tomorrow I have a session scheduled with my oncologist and I will bring the issue up, although I did talk about this to him on Thursday and he did not seem to know what to say.

Day #4

A new development today. My oncologist called me into his office to let me know that they change the administering of the rays from eight to four angles, but (as far as I understand) by using wider angles. He sounded a little fuzzy... I will see him again on Monday and will clarify some of my thoughts on the issue. For now I did not find anything specific about the benefits of some angles over others, just an article in The Journal of Medical Physics on intensity modulated therapy. But I also found a great factsheet at the National Cancer Institute, where they explain the whole radiation process in great detail with proper explanations. Yet, my questions are not answered there. Till Monday then...

Otherwise I am still all right, I did not have any nausea today (that earlier one was probably due to food issues), and no diarrhea yet, although I do seem to have a minor leakage problem. :)

Day #3

Nothing much today.
Now I am positive, though, that the rash is caused by gluten sensitivity. I had a freshly out-of-the-oven pita bread, and within half an hour I was covered with urticaria around my neck and on my lower arms again. I believe the CT dye reaction must have ultra-sensitized me. At least now I know what to avoid...

Day #2

Last night, about four hours after the session, I became slightly nauseous. I did find it a bit odd to have such a side effect right on the first day. Now I think that maybe it was just a coincidence. The reason I think so is because I also developed a rash around my neck area and along my two lower arms. Although the rash felt very much like the one I experienced when I had the bad reaction to the dye after the CT scan, albeit at a much smaller scale, but it was also followed up by a small bout of diarrhea this morning. For that I blamed the milk of magnesia I have to have every night, even though I am a very regular person, going every morning like a clock and sometimes having another BM later in the day. In any case, today I clicked the three things together only in the afternoon, hypothesizing that I may have reacted to something I ate last night. The problem is that I am nauseous again, even though today I was very careful with my food. So we shall see in the days to follow...

The radiation session was much the same, but my arms got tired sooner than yesterday from holding them across my chest. I also would have needed to scratch soooo badly at one point... But I survived!

Background story

So why do I need radiation at all?

Obviously there is cancer involved. As my nick name suggests, I am a female (FECHO = Female Chauvinist.. :). I am in my 60s. In late 2010 I developed some vaginal spotting, which after imaging and a biopsy turned out to be caused by a spot of endometrial carcinoma, stage 1A. Radical hysterectomy was recommended, the removal of the uterus, ovaries and cervix.

The surgery was remarkably non-traumatic, they have done it by using laparoscopy. Just a few little holes on the abdomen, and I was up and out of the hospital within 24 hours. No major pains, just minor discomfort during the first few eliminations. I was up and about within days.

The bad news came a couple of weeks later when they let me know that according to the lab's findings the tumor was very close to the cervix and entered the glandular area a bit, between the uterus and the cervix. This automatically upgraded the cancer to a Stage IIA, which then results in some recommended post-operative treatment, even if there are no visible signs of metastasis.

I did a CT scan which showed no local spreading, although they remarked that there is a small spot visible in my right lung which can be anything, so we are supposed to keep an eye on it. (Sheesh... fingers crossed...) I reacted to the dye quite badly, though. Two days later I started to develop a bad rash. First it started under my breasts, then it spread all around the chest area and down my spine - that strip looked the worst. Then around my belt area and my lower neck, like a wide collar. And finally along the outside of my arms. I had to take 2-3 Benadryl pills per day to control the itch, which lasted some 4-5 days. After that the itch returned only in the late evening hours for a few more days, not needing pills, but the rash itself was visible up to the 6th week.

Now, with all this behind me, I am ready(?) to face the delights of a set of 25 radiation treatments, spread over 5 weeks. Last week they did the local CT scan and tattooed my belly with three small pinpoints. And today, at noon, I will have my first radiation. I checked the side effects out on the net and I am scared out of my wits about them. So I decided to keep a diary here, both for myself and for the benefit of anyone else who happens to pass by because of his or her search due to similar fears. I very much hope that in the long run this blog will provide more reassurance than causing further anxieties.

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Alright, first day down!


Since the procedure is a standard set of motions to go through, it is apparently rare to have to sit around and wait, they are mostly right on time.

Before entering, they quizzed me about the milk of magnesia and the half quart of water that are part of the preparations. The monster of a machinery is standing alone in the middle of a big room. I did not have to undress, just pull up my dress and push down my panties a few inches as I lied down on the table. The two girls who man the machine (pun intended) just covered me with a large paper towel thingy. They centered me according to my tattoos, and they gave me a large rubber ring, placed on my chest, to hang on to with my hands while staying still.

The big machine goes around the body stopping eight times (the composite photo here shows these positions), administering the rays from those eight different positions. Each time you hear them because the machine emits buzzes of different length, shorter, longer, with the pitch and intensity of a telephone ring. Between 12 and 20 of them from each angle. Overall it is not too noisy. So all in all the whole session is closer to 15-20 minutes, plus the positioning before, and the getting off after.

Naturally, I did not feel anything. They warned me that later I may feel a bit tired but that did not happen. I even went shopping, cooked, all the usual chores. But about four hours later I had a short bout of nausea, about half an hour long. It sort of crept up upon me so I am not even sure if it was caused by the radiation, or the earlier anxiety, or because I ate something funny... In the end it stopped when I lied down.

That's about it. I'll be back tomorrow.