What it's like to go off tamoxifen

My five years are up. So I was told to go off tamoxifen.

Now I hear that many women are being told to be on it for 10 years. Why not me? I had no side effects  - except for the brief period when I was on the generic - and to be truthful, am feeling worse now. Not quite hot flushes but often quite hot...(although it becoming summer here....).

Anyone know any more about the 10 years on tamoxifen? Who goes on it and why?

Would appreciate some info.

I have finished my five years on tamoxifen

On Monday I took my last Tamoxifen pill. I also saw my oncologist, The Tango Man, and I am fine. And once again I was so overwhelmed with gratitude that I hardly discussed anything with him, and nothing re tamoxifen, beyond asking him to recommend a new gynaecologist and gastro doc (love mine but think a year down the line of having intense bloating problems is a good enough reason to get a different opinion).
The only thing I did discuss re Tamoxifen was how awful I felt on the generic when they ran out of Kessar - well it was unavailable for a short while in South Africa - and he said it was perfectly possible.
I adore that man and would be most upset if he retired anytime soon. I am so grateful to him and quite simply adore him.
Am seeing the new gynaecologist tomorrow - i got a cancellation - and although I think this means the medical aid won't pay as it is two visits within a year, tough shit. I didn't trust the last one; she wasn't at all thorough, not examining my boobs and when I questioned that, said: "Oh but you had a mammogram.."
You do not say that to someone who found a lump less than two months after having a mammogram and ultra-sound.
Anyway, let's see what this one is like. I liked and trusted my previous gynae until he butchered me for no reason. Well he believed I had cancer but I don't like the way he went about things and doing a radical hysterectomy for no reason....
Anyway...am still ..well, actually am worse, re the death of my friend (not cancer related). Been reading her recent emails to me, looking at lovely pics she sent of us together when she was here in January, reading her mail of "see you soon" when she let to go back to the US and all the ones since, and cannot believe she is no more.
It is very hard to accept death. All death. This was very sudden. She was 50 and was about to turn 51 four days later. I still do not know how she died as her husband will not discuss it. Not with me, not with her father and not with her brother. He said it was an accident. I have searched the internet for a mention - police must have been called out - aah, maybe I should search for paramedics instead - but it is all so mysterious and meanwhile I mourn the loss of my friend.
One day I will look back on our happy times of friendship but for now I am kinda paralysed with misery which is blady ridiculous.
Anyway, sitting here in my pajamas and gown on a Sunday afternoon but guess that is ok.

Is generic tamoxifen the same?

After about six months of being pretty stable, my arm is swollen. I have gained weight. I feel quite tired. And today I had to blast the air conditioning in my car even though I knew it was barely hot outside....
That in particular got me thinking: is this generic tamoxifen I am on causing these side effects? I usually taken kessar which apparently is nolvadex. At the moment it isn't available in South Africa so am taking tamoplex. Second month now.....
Anyone else notice any difference with generic tamoxifen? Or am I imagining it?

No cancer; just a fibroid but had hysterectomy

I had the hysterectomy on Monday morning. Have not had the written report yet but my gynae had had a conversation with the pathologist who told him there was no malignancy; just a fibroid.
I feel a bit shellshocked. I was so sure I was doing the right thing. My gynae had told me: "You are playing with fire". He really thought I how cancer or pre-cancerous cells. My history of breast cancer and being on tamoxifen had pointed him and everyone else in that direction. Now he has told me: "The fibroid was causing negative cells".
On Thursday the gynae told me: "Five doctors approved of this procedure".
I exploded.
"Five doctors? Who?"
I then pointed out that the GP had agreed with him but that I would never speak to him again cos he told he I had endometrial cancer and got it all wrong. And that was approving of the op; that was agreed with the gynae when he informed him.
My oncologist spoke to me before I saw the initial pathologist report. Once I found out the report suggested a D & C only, not a hysterectomy, the oncologist did not return any of the three messages I had left him. I think he felt he had spoken to me. And I didn't have cancer; why did he need to speak to me?
The pathologist who did the initial report had told me it was drastic, he just needed more tissue but recommended I do it.
He too suspected cancer.
I believe the gynae thought he was doing the best thing.
Oh and the 2nd opinion doctor, the head of what-what at Wits University, just threw the textbook at me, suggesting two things (all indicating cancer) that had they been an issue when I was diagnosed four years ago, the oncologist would have dealt with them.
So really it was the gynae.
Now I have had it. And I wonder why.
The Yoga Man, my dear friend, says "six weeks isn't so long, you'll be fine" but I feel like someone who had a vague threat of breast cancer in the family and had a double masectomy (I know many in America do that; I don't).
I feel the drastic surgery I had was unnecessary. The night before the procedure, on Sunday night, at 10pm, I had second thoughts. Let me change it to a D &C , I thought. Let them tell me it is cancerous or pre-cancerous.... and then.
This is radical.
Anyway. I tried to post my blog from my phone but need to check that facility; it didn't work from hospital.
Will be home for about a month. Lots of time to write, I guess.

Going ahead with hysterectomy on Monday

After an exhausting day -  which involved much angst and questioning (interrogating really) of both my gynae and to a lesser extent the 2nd Opinion Doctor (whom I really didn't like as he threw the textbook at me which didn't really impress me at all), and also a long chat to the pathologist whom I adored (thanks to my gynae for organising that) - i decided to go ahead with the total hysterectomy on Monday.
Will discuss this in my detail later but need to do lymph massage and also need to wake up early as was out the office for so long today (about 4 hours at the hospital argueing and organising and....)
Anyway, about 95% certain I have made the right choice, which wasn't an easy decision.
Dunno why but when I get sick, it is never straightforward. How to treat my breast cancer when there wasn't a primary tumour (the pathologist told me that happens in 2% of cases) presented me with conflicting suggestions and treatments. And now this. How to deal with and treat a case of markedly atypical endometrial cells suspected of endometrial neoplasia (and the differing interpretations of what neoplasia means) when you are on tamoxifen has been a most perplexing dilemma.
I hope to God I have made the right decision but I do know: had I chosen a D&C as suggested by the pathologist and had it been fine, not sure I could have sat out another six months waiting for an endometrial biopsy.....

Feeling ok - just a bit fat

What a blah headline I have given this post. (OK, now added "just a little fat"). Don't feel blah, feel fine. Having got over the endometrial cancer scare (see previous posts) I am feeling fine, just trying to deal with the over-eating which started with the scare. Been a long time since I overate for emotional reasons.
Hoping things will calm down and have contacted the dietician although can hardly afford another appointment (R1000 for an hour.....will try for a 45 min one).
Have always had a weight problem but never been obese. Got everything sorted when I was diagnosed with a thyroid problem - more than 10 years ago - and although it was overactive (Graves' disease), I was told afterwards that I was one of 10% of people who gained weight. I remember one week I gained 4kg. It was one of the worst weeks of my life. So out of control. Went shopping that Saturday and was shaking a lot. From the thyroid making everything in my body work too fast. Bought about 4 -5 pants suits, mostly in fabrics with lycra and short jackets. I never wore them. I kept thinking I would lose the weight. I didn't. In fact, today am about 16-18kg heavier than when I got diagnosed with thyroid. But today am 2kg heavier than normal, and intend to lose 8kg. Which will make me 8kg heavier than when I got diagnosed which would be fine for me.
I am pretty obsessive about it. I weigh myself every day. Watch what I eat but, thanks to the tamoxifen, the minute I eat lots of protein, I gain.
Today's weight is 1kg more than when I was diagnosed with cancer almost 4 years ago - and the only reason I remember what I weighed is that The Tango Man, when I asked whether I would eat more or just get fatter from tamoxifen (the latter, he said),  yelled at me: "You weren't thin when you walked in here; you weighed X"!
Anyway...not the end of the world..... off to a party just now... it's not lunch but well, it's from 2pm so dunno what it will be. Not a cake fan - other than Christmas cake - so just have to make sure drink enough water today else will nibble things.
I am so grateful my D&C results were ok. Got myself into a real tizz re that.
PS: I know my picture is fuzzy. My hairdresser took it when I had my hair cut last week. Need The Yoga Man to take another but he is out at the moment. Have never put my face on this blog..... maybe I should.... 

I am fine

I have had a month of hell ever since my six-monthly endometrial biopsy known as a Z-sampler revealed atypical cells.
Then, for various reasons, waited three weeks to have a D&C to investigate further, which I had on Monday. Got the results today. "Good news," he said. "No cancer, no malignancy, all fine.
"Nothing to worry about" he said.
He said he had scraped the uterus and the cervix. Then he used terms I didn't understand. I was in Cape Town today, and on campus at UCT, the reception kept cutting and so I didn't hear everything he said. But I ditd hear him say there was mild inflammation. I asked why, and he said it was hormone something or other, caused from the tamoxifen. I asked him to send me a copy of the report.
I cannot begin to describe the relief. I cannot wait to get back to normality, not living under a cloud of anxiety, not knowing if I needed a hysterectomy, not knowing if the tamoxifen had caused cancer, not knowing if I was going to go through it all again.....
I am fine. And it feels good. 

At last: out-angsted

I have been horribly anxious. In fact, developed flu as a result (or so my GP said, when I visited him in a panic on Thursday about whether or not I would be able to have an anaesthetic).
Luckily, now just a mild sinus problem and the GP said I am fine for an anaesthetic.
As reported before, I am on tamoxifen which can make you prone, although the probability is low, to endometrial cancer. Every six months I have this excruciating test in the gynaecologist's rooms, and this latest one came back with "atypical cells". And on Monday I am having a fractional D&C to determine if those cells are pre-cancerous, cancerous, or ok (for now?).
I just did a last - I hope - reading of all the dramas about it all, and now it's up to God/fate/whoever/whatever.
I pray I am ok. That it isn't cancerous or even pre-cancerous. My gynae said that if the D&C shows cancer, I will need a hysterectomy within a week. If it is pre-cancerous, within three weeks. Maybe not needed at all.
"The probability (of cancer) is not great," he said.
I sat there glumly.
"The probability of getting even to this stage was small. Don't talk to me about 'probabalities'," I said.
"You are being so negative," he said. And I was shocked at that. Because during all this cancer shit and trauma in my life, I haven't been at all negative but really, I was told "Oh if it (tamoxifen) does cause anything it is very slow-growing and we will just cut it out" - neglecting to mention "and half your insides too!"
Anyway, I now have to stay calm.
It will take until about Wednesday (so I am expecting it by Thursday) to get the results.
Then I will know.
I cannot worry any more. Hope I stay this calm.
Earlier today thought: Shit, might as well just take up smoking again (haven't smoked for just over a decade but really miss, although not constantly), and gonna just take drugs and give up.......
But now. Now I feel ok. I hope I am ok. Hope. But been reading on The American Cancer Association website and atypical cells can mean it's ok. I hope and pray. Now all know that worst case scenario isn't only a hysterectomy, but also radiation, removal of lymph glands in the pelvic area and so lymphedema is my legs.
Cannot go there. Haven't done lymph massage on my arm for a week, since I got sick, and although am better now, not doing it in case I am still underlyingly ill and it brings it to the fore. Can just wait till after the operation. Then I will deal with that again.
Actually, am smiling now. It is the end of the month and I was getting hassled because two bills which should have been emailed had not arrived. Duh. Checked tonight. Not only had the bills arrived, but I had paid them both. That shows how hassled I have been. Haven't felt the same since the doctor phoned me to say the test results were not good. Now have to wait a few more days to see if I can relax and be happy again. But I have to be happy. Have to relax. If not, I will just ruin my own life.

Deranged day

Oh dear. Just saw my last post was entitled traumatic day or something like that. Suffice to say, between the two postings have been ok. Today was plain kak.
Well, not all of it. Somehow January/February and September are my big test months and it is now clear to me that I don't cope with trauma, tension and pain of tests.
Today was the painful one.
Had three medical appointments today. Started off seeing The Lymph Lady and my arm was ok-ish - up 0.5cm in two places if I remember correctly. She said as long as it doesn't creep up continually, I am fine. Haven't had to wear the compression sleeve for about a year, since I last went overseas and did a long-haul flight, so generally it's been much better.
Then went straight to the opthamologist (across the road in fact but such a busy one, that I spent five minutes driving there instead!). 
Have a stigmatism in one eye, and had HUGE problems when I had thyroid problems as had thryoid eye disease too and ended up having an op to remove excess skin but even today my own eye protrudes and I don't look anything like I used to look, but got over that long ago.
Anyway, I wear glasses for driving at night and increasingly for movies, theatre, all shows... after much much deliberation today with different lenses, it was decided to keep my glasses as they are. And don't need for reading.
All well and good.
Then had to go for Z-sampler test. This, along with an MRI scan, is my worst. It is a scraping of the endometrial lining to check for endometrial cancer, which the Tamoxifen anti-breast cancer pills can cause. For some people it is excruciating. I am one of them. Now I use a Voltaren suppository beforehand but when phoned today to check how long before the appointment was told 30 minutes. I took it 45 minutes in advance but when I asked the gyncaecologist today when is the right time to take it, he said 90 minutes to two hours....
It was so sore that I think I kinda pulled his hand as I told him to stop it. Was less sore afterwards - that was the Voltaren working, he said - but bled so much - this is expected and they give you a panty-liner - that had to get a pad. Haven't checked since to see if I am ok.
Look, I am grateful - said between clenched teeth - to have access to top medical care and to be able to have such a test regularly. But it did cost me R1700 which is a f..fortune and the medical aid hasn't been paying for it (had discussion with doctor's receptionists this time and gonna fight it big time when it happens again now) but I felt so sorry for myself afterwards to have to endure such agony and spend so much money that I have been eating non-stop ever since (a few hours now) and spent just a little more than that on two pairs of exorbitant but fab shoes.
Deranged.
I know I will be fine tomorrow but sometimes it is all a little bit too much to bear.

E-x-h-a-u-s-t-e-d

Dunno what it is but I am exhausted. Well, guess I know why but am still battling with it. First it started cos went back to the dietician cos my weight was creeping up again (tamoxifen) and I gained 2kg. She cut my protein down further ie no protein at lunch and at supper, say 125g white fish.
I became wrecked so added a little bit of protein at lunch and then had minimal at supper. Sometimes felt so hungry that just one biteful more of protein helped.
But I have mostly lost the weight I gained. Well, up 04kg from my usual maximum. I first lost it all, then was tired so ate more, then gained again, and now it's been creeping down again.
Now I think I am tired because I don't have one second of quiet/down time. I am on a major campaign to change one aspect of my life (not related to health, or my weight for that matter, although on a big campaign to not only keep my weight down but to lose 10kg - (ha! ha! ha!). Anyway, what this means is that when I get home at night, and this is usually after going somewhere, so it can be anywhere from 8pm to 10.30pm or later, I then sit down to tackle working on that. Been going to bed at 1am and waking up at 6am to do lymph massage, then dealing with a busy, crisis-driven day at work where I have to make frequent quick decisions, then rushing off at 6pm to go to some or other function, then home and .... oh I forgot about pre-work gym 3X a week.
Plus I agreed to interview this author and haven't finished reading the book, which I HAVE to do this weekend as the interview is on Wednesday, plus I tried to start another blog, unrelated to cancer but linked to my frequent going-out to shows and exhibitions and restaurants.... (eg this week did the theatre awards, the symphony concert, fashion week followed by dinner, and then dinner tonight) but have done two feeble posts to learn the formatting (it's a different template to this one....) . Oh, no wonder I am wrecked. Must take a deep breath, which in a way is what this blog posting is about... this is my deep breath.

Damn the doctor

Had a Z-sampler test on Monday. It tests for endometrial cancer, cancer of the uterus, which can be caused by the tamoxifen tablets I am on. The stats for tamoxifen preventing breast cancer returning are far higher than the chances of contacting endometrial cancer, so for me it wasn't an option, although I know there are women who won't take tamoxifen.
Anyway, the test is ghastly. According to the doctor, and his assistant, some women find it unbearably sore; others don't. I am one of those who do. It is like a pap smear X 50 although this time there wasn't prolonged pain afterwards, even though it did hurt a little the next day. And it bled a little, even the next day. Oh, and the doctor said that next time I can take Voltaren suppositories to numb the abdominal area, and I willingly took the script for it because I can still drive myself there and back; I just won't feel the intense pain. (I have the test every six months.)
However, was super pissed off that the doctor didn't phone me with the results. I had to phone him today, which I did, and I know he phones back at the end of the day. At 4.50pm I realised he hadn't phoned so I phoned again, only to be told he was busy - but still there. By 6pm I got the answering machine. So I phoned the emergency number, thinking: for me this is an emergency. I have had cancer. I need to know I am ok. If I am not ok, I also need to know. I thought: if he is cross with me for abusing the emergency number, f.. him. For me it is an emergency.
He didn't phone back.

Been kinda chilled

Been trying not to spend all my time on the computer and to read more, plus also trying not to obssess re my health, so have had a few days break from blogging.
Healthwise am ok, although:
* went to the GP over my swollen glands and oral thrush. He acknowledged both and suggested I go for a diabetes test - at some point. My thryoid doc has suggested that too, but in October when I see him next, so will do it then. Luckily my mouth now seems fine. Went and bought that dreaded yellow gunge Mycostatin, used it once, and now the problem seems to have gone away. Thank goodness. Seems crazy to think I could have type 2 diabetes when I eat so damn healthily and exercise....So far, so good though;
* went to see the gastroenterologist about having a colonoscopy. It seems that the familial link is not really there, that those that have that type of colon cancer get it by 40 and my mom and her two siblings were in their late 70s or 80s when they died. Not sure how old my uncle Harry was though when he was first diagnosed but I know he had it for years and pretty sure was 80-something when he died.
Despite that, doctor agreed that I should have one. Dreading it. Cannot bear the thought of anything being wrong with me. Two things were hilarious though. As I cannot risk having blood pressure taken or a needle used on my left arm, which is high-risk for lymphedema, he suggested I wear a tag on that arm to remind him!Also, when he asked about my eating habits, I was horrified at how I knew exactly what I ate, down to having had 750ml of water that day already, one cup of green tea, one cup of chai tea... etc etc.... I explained: twice I have gained weight without eating more: once when I had thyroid and gained weight uncontrollably even though my thyroid was overactive and I should have got skinny; and more recently from tamoxifen although that is now under control. So I am hyper aware of everything I put in my mouth, both good and bad, and without feeling guilty, am just very aware...
Miss Daria and her blog, Living with Cancer. Strange that....I so enjoyed her positivity and her wonderful what-can-I-do-about-that-problem attitude to everything.
Meanwhile, am very busy. Lots on the go, what with Dance Umbrella and symphony concerts and, oh, work of course.In fact, the only reason I am at home tonight is cos the author's talk and dinner I was meant to go to was cancelled. Toyed with movies but then thought that a quiet night might be a good idea......

Z-Sampler all ok

Got the results of my Z-Sampler - the horrible, horribly sore test/scrape for endometrial cancer - and it's all normal.
Monday going to see the doctor re having a colonoscopy. He wanted to do the procedure straight after the consultation but as I have never had one before, wanted time to prepare myself for it. Colon cancer is in the family and my mother was diagnosed with it about five days before she died - felt the lump on the Thursday night, saw doctor on the Friday, had a colonoscopy on the Monday, was told she was a perfect candidate for an operation, which was then scheduled for the following week - and died in the early hours of the Saturday morning, days before the scheduled op. Strange indeed.
Be that as it may, have had one other niggly health hassle. Got oral thrush over the weekend. Just like I had when I had chemo - although then it was worse as it spread to my throat. Had ceremoniously thrown away all that dreaded yellow gunge (Nycostatin) dotted around my home and workplace and work bag and gym bag quite recently, but had mouth wash recommended by the oncology centre and although it had expired in October last year, used it and two days later, it was gone. Feels like it is now back, but only slightly.
When I looked on the internet for causes of oral thrush, I felt suicidal but I know going to the internet for medical info, rather than respected websites, is dangerous so will wait and see.
The Yoga Man says I am obssessed with my health. Trying not to rush to the doctor for the slightest thing but it did save my life, I am sure, that I went to the doctor the same day I felt the lump, despite having had a mammogram and ultrasound less than two months before....
Anyway, cos am trying not be health-obssessed, have held off making an appointment after the gynae on Monday remarked that it seemed the ganglion on my hand was not a ganglion and I should see a hand surgeon, going on to recommend some. I cannot have surgery on that hand as it is the side which is high-risk for lymphedema but will ask The Lymph Lady on Monday for her opinion - she specialises in hand rehab..... one of her specialisations.
Otherwise, am very well. Chuffed to report that have kind of kept my weight down - am now up half a kg but now 1.4kg more than when I was diagnosed two years ago so not so bad considering I am on tamoxifen - and went to the symphony concert last night and off to three art exhibition openings tonight and then to a friend for dinner.

The dreaded Z-Sampler

Last time I felt I had shrieked so loudly, I felt the whole of Linksfield Clinic - well, at the very least those on the ground floor buzzing around the coffee shop - must have heard me.
This time I thought it might be a bit better, cos I had had it before, and so was prepared and after all, I kept thinking, it's not like it goes on for ever.
Well, I just remember saying to The Prof (my gynae), "please stop!"
But of course he had to finish the procedure. And my tummy, below the belly button, did hurt like before, but not so badly.
Basically the Z-Sampler is like a pap smear but of the uterus. And it hurts like hell. Well, for me it does. But I need to have it done because tamoxifen can cause endometrial cancer and they need to monitor it. I get the results on Wednesday.

Jubilation

Last night I dreamt about The Tango Man, as I was scheduled to see him today for my three-monthly check-up. Also in my dream was L, my old school friend, who recently had a right breast masectomy after a recurrence of breast cancer 11 years after she had a lumpectomy, chemo and radiation.
Anyway, don't remember much about the dream other than it wasn't a nightmare and people watched me interact with The Tango Man from raked seating, which might have been outdoors, an experience I wasn't that comfortable about not being private.
The raked seating might be because I like theatre but cannot remember watching a show in such a setting recently, apart from Maynardville outdoor theatre in Cape Town but which has loose seats rather than the scaffolding of my dream. And I think I dreamt about him because I was so anxious about the pending appointment but was not really articulating my feelings, apart from on this blog.
Anyway, I am all fine. I knew my mammogram and ultrasound were ok, and my muga, but did not know the results of the blood tests. So all very happy. Well I was so happy afterwards I told the nurses: I could cry. But I didn't.
I enjoyed my encounter with The Tango Man who has turned out to be far more amiable and less intimidating than expected. As The Yoga Man says, he cannot be too friendly if he thinks you gonna die. Put another way, he warms up when he knows you're ok.
Besides gushing about how grateful I am that I am ok, and saying I will do whatever he says, even swing from the chandelier - then adding that I didn't think I could actually do that, to which he added that he didn't think so either! - this is what he answered to my questions.
I explained that I was fine, but wanted him to know a few of my side-effects/symptoms, because I think it is important to document things (so he knows what % of patients experience what), plus I had a few questions.
1) SWOLLLEN GLANDS IN MY NECK: He said they were soft glands and clearly a viral infection. He was unconcerned. Relief, cos when I felt them upon waking up on Saturday, it intensified my anxiety about today's visit, so much so I did not even write about it.
2) NAILS: My nails are thin and keep breaking. Herceptin or tamoxifen? Last time he had said herceptin as the trial for oral herceptin reported soft nails as a side-effect. Today he said tamoxifen should make my nails stronger. I then dismissed it, saying it would clearly improve, and I could live with it.
3) EYESIGHT: Had noticed my eyesight was deteriorating, not least when I went for my driver's licence renewal. Was it the meds? He seemed non-committal about answering that but said I should have my eyes checked. No, well, fine. No problem.
4) TAMOXIFEN WHEN MENOPAUSAL: I told him L, my old school friend, had said she was told that tamoxifen was not for menopausal women (have not had my periods since the chemo). He smiled, as if to say that was not true. So I am ok, right? Cool.
5) METALLIC TASTE IN MOUTH: I had had that recently. Meds? No, he said.
6) HOT FLUSHES. Wanted to tell him I was still having hot flushes from the tamoxifen and they seemed to be getting worse, but no big deal. He wrote it down.
7) ASPIRIN FOR BOWEL CANCER: My sister had asked me to ask him re aspirin as a preventative for bowel cancer. He said it didn't work if you had a predisposition towards it. I do as it's in my family. But if I wanted to take it, not more than 3 to 5X a week but to be aware that it had its own problems, such as causing bleeding and... I won't take it then, I said, as he seemed not to think it was a great idea (that's when the swinging from the chandelier comment came up).
8) THE MUGA AND EXERCISE: I asked him not to shout at me like he did last time ("Who said that doing more exercise would be good for you?" he had screamed when I had asked if I could do more cardio as walking to the shops from work was more energetic than what I did on the treadmill). Well, surprise surprise, he said I could do more. "You're fine, all your tests are fine, your bloods, your muga, your....". My biokineticist had said I was doing about 65% of .. and this I am not sure.. but it relates to my heart rate, and he said I could up it to 75%. So I want to do what I usually do on Friday and measure it, and then up it 10% accordingly. Was ecstatic about this. Now still thrilled, just a little tired.
9) THAT HORRIBLE TEST AT THE GYNAE:As tamoxifen can cause endometrial cancer, I had to have that horrible test of the uterus. I explained that there had been a discrepancy which we had discussed before: he had said it only needed to be tested once a year; the gynae had said every six months. Then he said, fine, do what the gynae says, and I said great, cos going next week.
Then we discussed my having a colonoscopy. Well I said I hadn't booked one yet but he had said I needed to have it within six months, and I said I was anxious about it. They put you to sleep, he said. It's the result, I said. You are having it to be preventative, he said.
And that was that. A brilliant visit to The Tango Man, whom I trust implicitly and adore and respect. I think it's important to have a doctor you trust. I am lucky. And lucky to be well. On Friday, international cancer day, it will be exactly two years since I started chemo.

Today is two years

Today is two years since I was diagnosed with breast cancer in the lymph. Two nodes. Four chemos, radiation, 17 treatments of herceptin and now on tamoxifen. And fine..... Got annual Mammogram and ultrasound on wednesday - and so nervous that brought it forward by a few days cos can't bear the tension, keep thinking: if the result is bad, if the cancer is back, I'm doomed cos 90% of my treatment has been preventative - chemo took cancer away 100% - but meanwhile, got other things on my mind. Lol!!! Woke up covered in bumps. Been to doctor, been for blood tests - might have german measles! Hilarious!

PS: Watch this video. First watched it on Daria's livingwithcancer.blogspot.com  blog

what you call it

I know I tend to talk about "when I was diagnosed" rather than "when I got cancer" but I was still surprised when a friend wrote me a message on facebook talking of her "malignancy". She had said she was having a lump removed and her lymph nodes biopsied. Post-operative, she spoke of the lymph nodes being "clean" and said this meant "the malignancy was contained and easy to treat. Happiness all round."
Malignancy, I thought. So she did have cancer.
I was telling The Yoga Man about how she was just so cool about it and wasn't it just amazing;  he was less impressed. "Hmmmph!" he muttered. "You also say you breezed through your treatment. Breezed through? Hmmmph!"
It's true. I do say I breezed through it because that is how it feels now in retrospective. I had four chemo treatments and yes, I lost my hair, and yes, I did feel k*k, especially after the first one, and yes, I did get progressively worse in my immune-compromised week post-treatment but four is hardly a lot, in fact it's the minumum you can have for breast cancer,  and then when I had radiation I was ok, always waiting to get tired like they told me I would, and only getting exhausted between the second last and last session. And yes, I know have the threat of lymphedema and that is a big issue and yes, I did feel sick from the herceptin treatments but I survived it and it feels ok now. I am grateful to be finished the treatments and just hope it all worked and keeps the cancer away forever.
And yes, I do get hot flushes from the tamoxifen and yes, I did gain weight from the tamoxifen but am losing it again, and yes, my nails are shitty and so weak and thin it is scary, but yes, it does feel that I breezed through it.

still relieved

Am still relieved that I am ok after this week's tests, the post-herceptin tests. Had a chest x-ray, an abdominal and pelvic scan, a muga scan and a myriad of blood tests. My muga is down. To 60 when it was in the 70s pre-treatment so the treatment has affected my heart but as it is still within normal range, I am fine. Another example of why being healthy and relatively fit is important. As bizarre as it sounds, if you are healthy and get cancer (yes, it can happen, I am proof), then the treatment is easier.
The Yoga Man berated me for my facebook posting. I wrote that I had breezed through treatment and was now 100%. He said neither are true. But really, in retrospect it does feel like I breezed through treatment and only having four chemo sessions was nothing. Well, a little. And compared to having cancer, I am now 100%. Yes, it is a reprieve for three months when I see the oncologist again (and have to have blood tests but no more scans till January). But I feel so much more relaxed inside me.
And yes, have some side-effects from the tamoxifen I am on, and yes, it's all fine when I am not experiencing them (like at this second). but really, can cope.
Less sure about my arm. Yes, will admit that the thought of lymphedema throws me into despair. Will actually go so far as to say was depressed about it last week. And I am not a depressed person. Funny that. Always thought I was a misery till I got cancer. My mom used to say to me - smile, and see if your face cracks - but really, I might not smile a lot but even if I am miserable, and even when I wake up I sometimes feel like I don't want to get up, once I am up I am as bouncy and cheerful and energetic - to the point of driving people around me quite crazy.
Last week was an exception. Was depressed about my arm. couldn't sleep, had terrible thoughts and was pretty uptight right through my birthday weekend in Durban. I feel as if lymphedema is a disability and I don't want to wear a compression sleeve. Don't mind sometimes; but not permanently. Unfortunately, if I develop lymphedema - am borderline now - I won't have a choice.
The Yoga Man commented how it's bizarre that my looks and image are important to me, yet I keep getting illnesses that affect my looks. First got thyroid with thyroid eye disease and my eyes bulged and were puffy, so bad that I often wore dark glasses and once it settled down, had an op to have the excess skin removed. Eye still bulges now but no longer hassled about it. Yeah, I don't look the same but it's ok.(Oh, and hardly incidental, but both the thyroid and the cancer treatment have made me gain weight.)
Now I have an arm problem. The irony this week was that now my 'affected' arm is thinner than my other arm, but that was from wearing the sleeve and from having that special tape on.
Have not been able to do lymph massage all week, but have worn the sleeve for more than a week now and guess what? Have survived. But part of why it's ok is that I am pretty sure that when I see The Lymph Lady again on Wednesday, she will tell me I can take it off. Hope so. She spoke about wearing it one day on, then one day off until I determine how my arm is.
Let's see.
As my blocked nose does not appear to be getting better - not serious, only an issue cos of the lymph and my arm - she has now said (sms-ed her yesterday) that I must do two days of half-the-time lymph massage, then see how I am. Going to wear the sleeve till I see her this week. Luckily it is not too hot here in Joburg - actually surprisingly cold - so wearing long sleeves is not so bad for now. Took out all my longsleeved cotton t-shirts (I never wear tailored shirts although I do have one in my cupboard), and just wearing those. So far ok.
Sjoe - but that was a long stream of consciousness. Still want to write about what The Tango Man said about exercise, but will leave that for another day.

tomorrow a week....

Always hesitant to write anything either on facebook or twitter or this blog which might bring in a huge outpouring of emotion as a response. Am not looking for sympathy. But cannot deny that tomorrow a week is the day I go for all my tests to see if I am ok, to see if all the preventative stuff I have been taking is working. And I am feeling damn scared.
My preventative treatment has consisted of radiation - when I had it, my cancer had disappeared completely so it was purely preventative - then tamoxifen and herceptin.
Now my biggest side-effect - well the one that takes up the most time and energy is the swelling from the radiation, because it can block lymph glands and then you have a problem. Worst case scenario is full blown lymphedema and having to wear a compression sleeve.
At the moment my arm is up. Cannot tell if it's worse than last week or the same. Just hope it's just the same and that I don't have lymphedema which, after the thought of the cancer returning, is my worst health nightmare.
I have been doing manual lymph drainage massage twice a day (in the last month or so, some days only once) for more than a year... since the week I finished radiation.
Oh I do sound all woe is me...but feeling a bit apprehensive. Would be damn unlucky if all this hadn't worked.
Anyway, no more miserable feelings. Lots to do before then. Not least tonight's lymph massage....

tamoxifen, thyroid and weight

My weight has been creeping up badly since I started taking tamoxifen. This was to be expected. The Tango Man had told me I would gain 5% of my body weight which for me amounted to about 3-4kg. When I asked if I would eat more (cortisone does that, for eg, and you don't even realise it at first cos you just feel hungry and are responding to a need), or just gain weight, he replied: "Just gain weight". Ok, fine. So when I gained the first kilogram or maybe it was two, I wasted no time and went to see a dietician I was told had dealt with this kind of problem before.
I didn't like her but then that's no big deal. I have never met a dietician I did like although I did meet one whose diet worked - but she had a baby and stopped working. Anyway, what was a big deal was that this one didn't weigh me although I saw her a few times, and she also had the distinction of being the most expensive dietician I have ever been - think about R750 or so for an hour session. The medical aid covers about half but that's another story - for Friday's appointment at the gynae they are paying back R409.40 of the R1440 I paid. But generally they've been great.
Anyway,this dietician, let's call her The Anal Waif, told me to eat a plate of raw foods ie veggies and salad stuff, and she was not hassled about carbs such as carb vegetables like beetroot and butternut which I love, and I could eat fruit too, another natural carb which I love. But I had to eat minimal protein. So none of this large piece of fish stuff, with salad on the side. No, no. Rather a salad with a little piece of fish on the side.
Ok, fine. I kinda kept to it - well, I was aware of it even if it was not always possible to stick to it religiously - when the weight crept up.
I gained 4kg. That is, I went up 4kg from my pre-diagnosis weight. All fine. That was the prediction.
Then, very recently, I gained 2kg. I became uncomfortable and my clothes were getting tight. Tried to think back to what the dietician said. Tried to up my water intake. Then this weekend I lost just over a kg. Whew! Felt amazing.
But was concerned. Until this weekend's loss, my weight had been the same every day for week, done to the gram. That is very typical - well, for me - of a thyroid problem, the thyroid gland controlling one's metabolism. Plus my eyes started getting sore and I remember the thyroid doctor saying if my thyroid ever went out of kilter again, I would probably recognise it from my eyes - I had thyroid eye disease when I had an over-active thyroid (hyperthyroidism).
So I went in for a blood test on Monday. Won't go into detail of how the nurse struggled to take blood from me as my veins are so damaged from chemo and my left hand cannot be used because it is at risk of developing lymphedema. Got the results today. Negative. Thyroid is fine. Am using lots and lots and lots of Tears Natural so my eye - especially the slightly bulging left eye from the thyroid - so much happier there and maybe can be spared some money from going to the opthalmologist.
Oy vey. Written too much again.