to wear or not to wear that damn sleeve

The Yoga Man thinks I have adult asthma. It's much worse than the childhood one, he says, which just goes away.
Don't you think you're being a bit dramatic, I ask. It's just flu, only been a week.... I mumble.
Exactly, he says. Dramatic. That fits you.
Bloody hell.....
Anyway, the fact is I am still sick. Would normally not give a damn. Yes my chest feels tight, yes my voice is not that great (it sounds gravelly) but I mostly feel fine.
The trouble is that I cannot do lymph massage when I am sick. And the days are passing and I am not getting better.
Is this tight chest caused from Herceptin, I wonder. Or am I just being neurotic. (Only last night read Joanna's blog, Life has its ups and downs  which referred to how, once you're had cancer, every little niggly pain becomes a major calamity.)
But my arm is not feeling great. So do I wear the sleeve? Wear it, says The Yoga Man, who doesn't think the sleeve is a big deal at all. Not sure I have the courage. It fills me with despair. Will see how I feel tomorrow. Just pulled up the sleeve of my t-shirt and looked at my arm. It looked fine to me. Will decide tomorrow. Maybe I will stay home tomorrow - again - (did so one day last week too) in an attempt to shake off this lurgy once and for all - for the sake of my arm and my anxiety re lymphedema.

panicky moment yesterday

It's been wonderful weather here in Joburg. In fact, the weather here is generally wonderful: very moderate, mostly warm although can get down to momentary minuses in weather (but then only for part of the day, such as early morning/nights) and I don't enjoy the summer rainfall and thunderstorms.
But when it's hot, I tend to wear white; it's cooler. Yesterday put on a white skirt and a t-shirt I haven't worn in ages: white with a black floral print.  It has three-quarter sleeves. So I was most unhappy when it started to "pull" on my left upper arm. After about five minutes, I changed to a cap sleeve plain white t-shirt but my upper arm still felt a little heavy.
Haven't got dressed yet today (still wrapped in a kikoy, a cotton Kenyan wrap ) so have no idea if arm is swollen or not. Even when it is swollen, at the most it goes up by 0.5cm so it's often difficult to tell plus I have developed a distorted perceptin of my arm. It always looks swollen to me. Sometimes I look at it and it appears huge.
Anyway, what upsets me is that I am trying so hard to be calm, an unhassled person. Then have an incident like my t-shirt appearing tight, and I feel in despair that I might have to wear a compression sleeve. It is the thought of that, the reality of that tight thing squeezing my arm, not letting me wear all my summer clothes in this lovely weather but having to boil in long-sleeved tops and being so restricted in what I can wear, which drives me crazy and turns me from a normal person into an anxious, unhappy monster.
Not that I spent the day moping. Far from it. Was so busy - breakfast with friends, then shopping for an engagement present, then to the Oriental Plaza to get some fabric and trimmings for something I am having made, then to nursery with The Yoga Man to get lawn for between the tiles, then some brief reading before dashing off to fetch my friend to go to Dance Umbrella - saw amazing Nigerian-born, Paris-based Qunus Onikeku  (see the video and photos of his work & his blog) - then out to La Cucina di Ciro for dinner. So hardly miff. Now off to an engagement party and have a hefty report to read for a work lunch tomorrow to discuss how best to turn the research into a story.
Not sure if going to try the t-shirt again now. Seeing The Lymph Lady tomorrow anyway.
Oh and must add: delighted, delighted that six months post Herceptin, my nails are now tough - like the rest of me!

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.

more about people quitting tamoxifen......

I enjoy the newsletter I get from 
 About.com: breast cancer . 

The one that arrived today has More about people quitting tamoxifen and the like....

Maybe I am just lucky and haven't had bad side effects, although I think I have had shitty side-effects, but I am so adamant that I do not want the cancer to return so will do what it takes.

The main focus of the article, but not the comments on it, is about co-payments being so expensive. I have to be honest that I am not aware of what I pay for it every month, if anything. Whatever it is, it does not have an impact, unlike my lymph treatment for borderline lymphedema, the cost of which I am super-aware of.

Anyway, these are the comments I posted below the article:

"I am on tamoxifen. Think it’s been nearly 18 months now and I wouldn’t dream of discontinuing it. The truth is that I have no idea if I have a co-payment on it (I live in South Africa and our medical aid, what you call health insurance, is clearly different) but no matter what it cost, would beg, borrow or steal to get it.
Yes I have had side-effects but am tolerating them. I am having 6 monthly checkups – which hurt like hell – to see if I have endometrial cancer (although the oncologist disagreed with the gynaecologist and said only yearly checks were sufficient); went to a dietician and have lost 4kg of the 6kg I gained despite not eating more; and tolerate the hot flushes – a residue of thyroid problems in the past is that my temperature is wonky and I am often freezing or boiling, but I tend to deal with it by wearing cooler clothes than the weather dictates and carrying a soft wrap in my handbag for when I am cold.
I am grateful that there is something that can help in preventing the cancer from returning. I just hope and pray that it works. (I also had radiotherapy as a preventative treatment plus 17 treatments of Herceptin.)"

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.

Am I unnaturally calm?

The manual lymph drainage massage I have to do involves touching various parts of my body, from the lymph nodes on my neck to those in the armpit. Yesterday I felt this kind of thickening at the bottom of my left breast, the same side where I had cancer in the adjacent lymph nodes.
Today it was still there.
Now I happened to have an appointment with The Thyroid Doctor, whom I adore, and I told him about it. (I found it kind of amusing and interesting that he asked me how I was dealing with the problem I had had last January. "Oh, the cancer!" I said.) Anyway, he examined me and said it was "something" but nothing serious, or something like that, and that if it was a lump he would have sent me for an immediate biopsy.
Then later this morning I happened to have an appointment with The Lymph Lady (and incidentally, my arm is fine, thank goodness. I told her: if I have to wear a compression sleeve, I might wear it for one week then I am going to wear it one day on, and one day off, which is about the most daring I have ever been re treatment, but luckily did not even have to contemplate that, although she does want to see me next week again.)
Anyway, she felt it and said she didn't think it was anything serious but I should get it checked out.
Now I had tried to phone the oncology centre earlier but had not got through to the treatment room, where the nurses are (who are the first port of call, as one cannot ask to speak to the doctors.) Well, after The Lymph Lady, I just drove to the oncology centre. There Joyce, the most experienced nurse, examined me and said I wasn't imagining anything, there was something and that she could even feel it when I was sitting rather than lying down, which is usually the easier way to feel anything. But there were no doctors there today. I did not ask why.
And so that is a very long-winded way of saying I am seeing The Tango Man tomorrow, have an appointment at 2.15 and despite spending some time reading the American Cancer Association site for some answers as to how one identifies cancer in the breast, I feel calm. I finished the preventative treatment herceptin about two months ago, maybe three, and well, I don't know really. I hope and pray I am ok, but I feel I am ok. And I will say what I always say: whatever happens, I will deal with it.

this is a very important day for me

Had my final herceptin treatment today. And it wasn't too bad. Got a vein which worked after only one abortive attempt (veins are messed, always been bad and now post chemo which burns your veins it's even worse and, with the threat of lymphedema in my left hand, can only use my right hand).

Anyway.....had the day off work cos worked the late shift on Saturday so said I would come in early. So arrived at 12. Bought cakes - little ones - for the nurses and other staff at the oncology centre, but had thought of waiting for all my tests. But then decided it was worth celebrating every milestone. And finally reaching July 4 2010, the day of my 17th and last herceptin, the preventative treatment.

Now just have to pray that it worked, that, as The Yoga Man said today, "Let's hope it all becomes a distant memory".

On August 10, I am scheduled to have a chest and abdominal scan, a muga scan , which is done in nuclear medicine and tests the rate at which the heart emits and is being done to see if the herceptin has affected my heart. The other scans are to see if it has affected my lungs, and if it has affected my abdominal area, ie, if it has spread. And I need to have blood tests.

I am amazed to say that I thought I had not had an abdominal scan prior to starting treatment. Well, I had. The receptionist today showed me the results of my tests - everything was clear. I remember reading that but didn't register that it was the abdominal area. That was on January 21 2009.

Anyway, then on August 11 I see The Tango Man. At 14.45pm. Then, although I will have opened all the envelopes to read the results, I will find out if I am ok.

PS: The nurses said one client was so excited to have finished her herceptin treatment that she sang the national anthem. I guess it is a prayer, the anthem, God Bless Africa.

a taste like a leaking filling

Scheduled to have my last of 17 herceptin treatments on Monday, so it's nearly three weeks since I had the previous one, yet got that yucky taste in my mouth last night. Not as intense as in the past but tasted like I would imagine a leaking filling would taste like, if there were such a thing. A metal taste. Enough to lead to my eating too many Chinese ginger chewy sweets but I always feel desperate to get rid of the taste.

Anyway, all gone by morning.

Like what Julie Goodale had to say in her latest blog posting,Fitness for survivors:"We didn't control whether we got cancer; we can't control how our treatments affect our bodies. But we can control what we eat and if we go for a walk, or ride a bike, or run, or lift weights, or dance...."

Here's to dancing, and having fun!

One more herceptin to go

I had my second last herceptin treatment on Monday. Strangely enough have had no side effects so far - and it's Wednesday now. Can rememeber only one other treatment after which I also had no reaction.
Saw the oncologist last week too. Unexpected visit. Not The Tango Man - he was away - but his partner, The Secretary Bird. Very nice lady. Have had pain in the spot where my cancer was, in the lymph area on the side of my breast below the armpit. The biokineticist said it was most probably muscular and I kinda felt that it was linked to the radiation I had - yet completed about a year ago - and The Secretary Bird said she could feel no evidence of disease but if it, the pain/burning, is still there when I finish my herceptin (July 5 is my 17th and final treatment), then I should go for a scan, which she said the radiographer had advised anyway (to go six months after my previous ultra-sound, which was in January).
Getting kinda anxious. Look, am totally and utterly delighted to have no side effects this time, although I always feel as long as it's working, who cares, but it really is wonderful to not feel bad. But I do know that after the next treatment, I will be sent off to do that scan plus other tests - off the record heard it included a chest x-ray, another muga, and an abdominal scan - and to return to see The Tango Man with the results a month later. What happens if I am not ok? The Yoga Man says deal with it then, but it is a scary thought. I know if the herceptin and tamoxifen have not worked, then I am truly fakked because at this stage especially it should all be fine.
Well, if it's not, and the cancer has spread, then I know I have to have left breast masectomy plus will probably have to have chemo again. More than before. Makes me feel sick at the thought. Was ok the first time but want to be well now.
Must say, was intrigued when I was the oncology centre on Monday. There was an 81-year-old woman there. Not that I would have thought she was that old but the nurses told me: "Doesn't she look well for someone born in 1929?" they said. Whatb amazed me is that she is starting chemo next week. The Tango Man often treats patients of that age with chemo, the one nurse said. Guess they must be pretty strong - physically and emotionally - to deal with it. Go for it!!
Oh by the way, my nails are totally messed from the herceptin - splitting, so thin and look practically as precarious as to when I was on chemo - eg the one looks like it could split vertically. But I worked hard and then dashed off for a buff & paint on my nails today and although one split a little during yoga this evening (just a coincidence, they certainly look much, much better. So you see, one makes a plan and deals with things.

more on herceptin and hair tinting

My old school friend, Christopher, read my previous posting about herceptin and hair tinting and sent this response to me via facebook. I find it so fascinating htat have decided to repost it here. Oh and by the way, he is a professor of chemistry I think it is (cannot remember now) in the US. Either way, he is someone I respect and trust:


Saw your "From Under my Hat" musings about use of tints / dyes / colourants. I would side with your former head nurse, and encourage you to wait. The chemicals in these processes (those needed to facilitate penetration of the colouring agent, as well as the colouring agents themselves) are rough on living cells. Anything that can promote penetration into hair will promote penetration into cells. Also, anything that gets into the hair can travel along it on the inside and reach the root. The dividing cells in the root already took a pummeling from the anti-cancer drugs, so it would be best to pamper to them for a while.

reading breast cancer blogs

Actress Lynn Redgrave died after a seven year fight with breast cancer. And six years ago her daughter and her published a a book about their fight/recovery/whatever.
Depressing. She was ok, then she wasn't and died.
Then somehow from reading up about her, got started on cancer blogs. Got onto an hreceptin side-effects forum/quick poll again and was quite horrified to hear one woman write: "I have my last Herceptin infusion on 3/5/10. The last 4 treatments have had the worst side effects for me."
Yesterday was my fourth last treatment and today is the first time I have missed a day of work because of side effects. Yes, once I left work early the day after cos I felt so bad and the one time I had the bad taste in my mouth I nearly went crazy.
I find reading cancer blogs so sad. Like when their family members come on and continue it cos they have died. Hate that.
Oh well. Going to get on with things now - i mean practical things like reading my book, packing my bag for tomorrow and so on.

got whacked this time

Didn't go to work today cos was still feeling whacked from the herceptin. It's funny. Every time I have a different reaction. Feeling much better now but did take some panados earlier.
But glad I am at home cos spent most of the morning feeling ... well, as if someone had whacked me over the head. Not a headache. Just exhausted. Thought of my colleague who spent three months away from work on sickleave. Don't think he was on his sick bed. Just wasn't at work. Do know he was in hospital for some of that time but really. Decided there was no need to push myself again and again and again....
Here's another great post from Julie Goodale, the cancer exercise fundi from New York whose blog I follow - it really speaks to me! This time it's about a study - well a collation of other studies - about the benefits of exercising post breast cancer.

had herceptin today

It was my fourth last herceptin today and please god all will go well and that will be the end of treatment. Was chaos today. They did not have me down for an appointment and so they had to use someone else's herceptin (she is due in later in the week) and so I ended very late because they dilly-dallied about it all.
Anyway, not feeling great. Tired and irritable. Going to sleep soon and it's only just after 9pm. They told me today i am the only one who has side effects from herceptin. Oh well.

my arm is swollen

I don't wear tailored clothes. No shirts, no jackets, only t-shirts (often with lycra) and jerseys (jumpers). Today, however, I am wearing a long-sleeved t-shirt made of organic cotton. No stretch in it. It is quite a loose top. But there is no doubt, I realised in the course of the day, that it is slightly looser over the right arm and feels like it's pulling a little on the left arm, the side which is at high risk for lymphedema since I had radiation for breast cancer. So, although I thought my arm was fine - albeit sore quite a bit - it clearly is not ok. Well, not 100%. Seeing The Lymph Lady next week but she just phoned to change the appointment so it will be after my next herceptin treatment as opposed to before. And herceptin is not very good for swelling either. Oh well, just wanted to note this.
Met a girl at a launch tonight, young, say in her 30s at the most, and it turned out (from the person she was with, who knows me, asking me most pointedly how I was) and then this girl and I both discovering we had thyroid (although she takes 3X the dose of eltroxin I take) and what-what, that she had cancer three years ago. Lymphoma. Says she is fine now and sees the doctor once a year. Said she had chemo and radiation. Now my friend says... "Humph! She says she is fine? Ask her boyfriend. Bet she is not ok. Bet she has niggly side-effects that change her whole life." Ja, side effects. One gets used to them but they are there. Like I live with the threat of lymphedema all day and every day. And although I am a little tired now and would love to get into bed and just read, and then sleep, still have to do my manual lymph massage, my second of the day. But I am fine. It's just different.

Feels like years since I have written...

Sjoe! Feels like years since I have written but it's only two weeks. Been busy. Went away after my last post - a week's holiday in Cape Town - then came back and worked like an absolute dog, writing travel stories and working super hard cos my boss was away. But cannot complain as he did my work while I was away for three weeks recently (two weeks in Monaco and French Riviera to do a travel piece for work, then Cape Town for holiday...). Anyway, started to realise that work can be like a drug. On Saturday, before 8am, I had already sms-ed two contributors, changing things for this week. Then had to force myself to relax. Luckily, that wasn't too hard! Lol!!
Then went away this weekend. Well, only for one night to Valley Lodge in Magaliesburg, where the Portuguese team is staying for the World Cup 2010 - although not without controversy read article. Was fabulous. Then ate at Forum Homini today, which was supposed to be sensational but wasn't the best. They have this ridiculous 6 course tasting menu and hell, my friend said after a while: "This is getting tedious" and we were happy when it came to an end and we could leave. Two courses were really nice - mushroom soup and the springbok (each portion is really tiny) but the rest... and it was annoying that,as it's a set menu, you need to state beforehand what you eat and don't eat. I did so on the phone and said my friend does not eat meat, but eats fish although no shellfish. When I arrived today, saw the eating preferences next to my booking. But that's where it stopped. They kept asking my friend: "So you don't eat chicken?" and "Calamari?" to which we said no but they still brought a salmon dish with calamari. They seemed totally unprepared for these preferences and I found the fact they were flummoxed slightly annoying. Well, pretty annoying: why pretend you can cater for different preferences when you cannot? And my best moment was when one of the restaurant managers seemed surprised when we said foie gras was meat. "It's not meat!" he said. "It's liver!" I said. "But we just use the oil," he said, as if that was therefore irrelevant. Phuleeeze!!
Anyway, the meal with tip cost about the price of a bottle of perfume but knew about that beforehand, wanted to go and not sorry I experienced that.
So guess if I am writing about all this, then it means I am ok.
Yes I am I guess. Have vacillating bad taste in my mouth but it seems to be getting better. That is from the herceptin. Still often concerned re my arm (am at high risk for lymphedema following radiation for breast cancer)which hurts a little but does not seem swollen, except for maybe at the elbow a little, and not so happy re my weight which is a little up (thanks to the tamoxifen too....).
But otherwise very well. Feel energetic - want to move and do things and find sitting at my desk at work pretty confining after walking so much when I was overseas.

Relieved to report that all is well

Had an appointment with The Tango Man. Standard three month one. Couldn't help feeling a little anxious before but all is well. Afterwards remembered a few more things I could have asked him but really, all that matters is that I don't have cancer.
What he did say though is:
* the bad taste I had from herceptin is possible, as it is chemical;
* that i must watch it if have muscle pain again, but didn't sound overly concerned;
* that my badly splitting nails, now so short they hurt, could at a guess - and he hates gambling, he said - be from the herceptin (I asked whether it was the herceptin or the tamoxifen). He said that they are working on an oral drug which is the same as herceptin and they have reported it causes problems, cannot remember the exact description now, on the sides of the nails. But the drug is still in the trial phase.;
* that it is good I was able to do more cardio when required - ie when I was overseas now and walked a fortune;
* said I would be able to do more exercise once I finished herceptin and that might also help me lose weight; and, he said that
* the reason two of my pairs of winter shoes are tight is because I weigh more. From my thinnest during chemo - but I had throat thrush and could not eat solids apart from soft boiled eggs for days!! - I am now 6/7 kilos heavier. Tamoxifen, I say. I think I weighed a little less during chemo than he says but it was interesting how I never got thin, even when I could not eat solids. Since tamoxifen, have gained 3-4 kilos, it varies. Got weighed at him straight after a sushi lunch with 500ml water, but wasn't prepared to sit there hungry while having herceptin.
Oh, the one nurse said that every day they discuss the patients they will see that day and I mustn't worry, my prognosis is fine and I will be fine. Then was, well, am, very sad to hear that the head nurse has resigned and is leaving at the end of this month. Gather, from someone else, that she had a fight with The Tango Man who is know to be pretty impossible but is becoming friendlier each time I see him.
Another nurse resigned the same day - so something must have happened - but was talked into staying on.
The not so great news is that my arm, which has been giving me slight swelling problems since I completed radiation, was up everywhere today, by anything from 2cm to 5cm. Have to see what happens next week. The Lymph Lady says it's not from the travelling; the head nurse at the oncology centre said that sometimes lymph problems take a month to settle down after a flight.
Off to Cape Town on holiday for a few days. I know I have just been away but that was a work trip - this one is leave. The entire company was forced to take all leave owing by the end of March. This week has been deferred from March to April cos of trip to Monaco and south of France.
Oh, the other bit of good news is that I miscalculated: finish herceptin early in July, not at the end of July. Today was herceptin number 13.

fitted for flying to france

I am sitting here with a compression sleeve on my left arm. Oh, nothing radical has happened although my arm did feel heavier as from yesterday, following herceptin on Friday, number 12 out of 17.
That is why I am wearing it now, reckoned it could only help, but the reason I even have a compression sleeve - number/size 2 - is that I am flying to Monaco and the French Riviera to write a travel piece for work. Leaving on Tuesday night. And the deal with The Lymph Lady is that if I went overseas - I live in South Africa - I have to wear a compression sleeve on the plane.
Was kinda horrified when I heard from The Sleeve Man (and was amazed to find out that his two-man practice is so busy, fitting sleeves, prosthesises (sp?) etc)that I have to wear it not only for the flight, but until I go to bed that night. So, in my case, arriving in France at 6am, catching a connecting flight to Nice I think it is, and so will be wearing the sleeve until I finish cavorting around Monaco, my first destination, late that night.
Must say though, that wearing it is not so bad. It has been hurting around the elbow but it is not such a fakking nightmare. And at least it will be wintry where I am going.
Also wasn't so charmed when The Sleeve Man measured my arms, both arms, and found my left arm was 1cm thicker along the middle upper arm and a whole 2.3cm thicker at the top. Damn.
More worrying, however, it that my arm felt thicker yesterday and today. When I put on a cardigan at work last night (was doing the midnight shift), it was tight around my left upper arm, a horrifying feeling. But seeing The Lymph Lady on Tuesday before I fly out - have not seen her for about a month (well it feels like that but is probably only about 3 weeks) as she was at a conference and then I had to cancel seeing her last week as the appointment clashed with the only time the entire week The Sleeve Man could see me.
Anyway, won't be updating blog while on my trip cos not taking my laptop and cannot update it from my phone as won't have internet access on it, as only doing SMS (text) roaming....
I guess I could take my laptop but really, it is not such a portable one, more designed for home use with a wide screen which is great for writing assignments, and anyway, with the hassle of being unable to carry anything heavy with my left arm or over my left shoulder cos of the lymphedema risk, don't need anything else to carry - already have my fab new purple luggage which consists of a large 50cm bag and a matching smaller one, all on wheels of course, for the cabin.
So wish me bon voyage!
Oh, and nearly forgot. They told me at the oncology centre that cos I am on tamoxifen, I am also at risk of developing a clot so am on ecotrin, which is essentially a coated aspirin, for a few days before, then during, plus a few days after my trip - plus have to wear flight socks during the trip...
But what the hell. Will all be fine. More concerned about acclimatising myself for the colder climate and leaving in warm weather and arriving in cold and so how to juggle clothes on the plane, than anything else......

no full body massage if you've had a tumour?

THE SICK PATIENT: It's been a bit of an information overload day. Most distressing of all was when I asked about the girl who had been so sweet to me, chatting the oncology centre, wanting to know what cancer I had and talking about how her treatment for melanoma wasn't working too well. She was really attractive and young but did not realise until today that she is 24. She is dying. Last time I was there I asked about her and was told she had pneumonia from the compromised immune system and was in hospital. Oh, she has recovered from that but ... they phoned her husband while I was there and he apparently said she is alive but very bad. Cannot walk. Her mother had come out from the UK and he thinks it's time she went to hospice. The nurse told me that it had spread to her brain and lungs and she had had to stop the radiation when it didn't work, and then had to stop the IV chemo when that didn't work either. I am very upset. A very pretty, very sweet, very friendly girl - "one of the nicest ones said the receptionist" - and now she is dying.
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CANCER AND ANGER: On my way into the centre today bumped into a friend of a friend. Had heard last night she had had a lumpectomy and was starting chemo today. Well she does not need to have chemo, just radiation, she said, but when I said she was lucky, she didn't seem to hear me. She is so angry. Angry she has cancer and angry cos the radiation oncologist she is seeing told her: You could have a heart attack - all the treatment is on the left and it's going to affect your lungs.... (doctor sounds like a rude nightmare).I was told that these days they do everything to avoid such damage but then again, have been banned from cardio. Was astounded at how angry this woman is about everything and could not remember if I had ever been like that. Asked The Yoga Man who said yes, I was still angry especially about things one should eat/not eat cos I feel I was eating healthily already and that I am also angry cos I won't support things like Shave-athons where people shave their hair off in support of those who have cancer... He said, and this I understand, if you have an accident and are hit by a car, does that mean you're going to stop looking left and right when you cross a road? Good point that, I think.
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TUMOURS AND MASSAGE: I was the only one at the oncology centre this afternoon. Don't know why. But anyway, it gave me lots of time to chat to the nurses. And was amazed at what Erica, the head nurse told me. If you have had cancer which involves tumours, as opposed to a blood cancer, then you should not have a full body massage - can have neck or neck massages - and should not use weights, the ones attached to machines, at the gym. Apparently this can cause the tumours to spread.... she said I should ask the oncologist more when I see him again. Luckily I don't like massages but I wonder why I was not told this before. They also told me people come from overseas to see The Tango Man for a second opinion. I do respect him but find this strange...
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LYMPHEDEMA AND THE AFFECTED LIMB FEELING FULL: Saw The Lymph Lady today just before I went for the Herceptin treatment. As I saw her at a different venue, she did not have my file with her and so did not measure me. She just did the lymphatic drainage massage and also corrected the massage I do. Anyway, she then said my arm felt fine. How do you know, I asked. Oh, she said, it often/sometimes feels full.... that horrified me.
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HERCEPTIN AND EYESIGHT Asked about my eyesight. Is it just cos I am getting older and need glasses or is this treatment affecting my eyesight, I asked. Don't go for an eyetest, yet, said head nurse Erica. Wait a few weeks after you have finished herceptin, and then have your eyes tested. Mmmmm....
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TODAY'S HERCEPTIN TREATMENT: Had Herceptin today and so far, hold thumbs, feeling fine.........praying for no bad taste this time but far more importantly, praying that the herceptin works and keeps the cancer away.
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WHEN I FINISH HERCEPTIN: All going well, I am scheduled to finish Herceptin at the end of July. That seemed like perfect timing, as my birthday is at the beginning of August and I thought if I have money, I could take leave and go away somewhere nice. Today they explained to me that I have to go for a scan (s) after I finish treatment, and then three weeks to a month later, arrive with my scan(s) and then get the all-clear, please God.
Then I can go around the world, they said. "Haven't you heard of fly now, pay later?" said nurse Emily. Ja, that reminds me of the girl with melanoma. She called everyone "Nurse Erica", "Nurse Emily" and so on. I feel very sad about her.

phoned the oncology centre today

Was relieved today when The Lymph Lady said I should be able to manage my arm and the swelling (caused from radiotherapy) on my own but that I should use a compression sleeve if I travel longhaul (she has said that before. However, I commented on how she was doing massage on both sides of my neck and I do it only on one side and she said: "No, I must do it on both sides!" So next time she is going to re-show me the manual lymph massage which I do twice a day.

Then my taste is better if not better. That is, not back to normal but thank goodness, much better. Phoned the oncology centre and they said they had never heard of it as a side-effect of herceptin. Asked if I have thrush in my mouth. Didn't think so and checked, I don't. But that can cause a bad taste in the mouth, said the head nurse Erica.

Then asked about my hair. It has been very sore. I swear. My hair, not my head. Last night was the worst ever, as it hurt even as I changed positions in bed and when I washed my hair this morning. It hurts on the top of my head, the hair on the crown. I thought I had better phone rather than wait a week to go to the centre for my treatment. "Never heard of it," she said. But she did admit, when I pushed her, saying I had read it on the Internet, that Herceptin can make one's hair thin. Yes, it can thin but it won't fall out in clumps. Ok. Mine does not seem to be falling out. Four strands in the bath today. Mmm..

Then asked about my muscle pain. I have noticed, and have discussed it with my biokineticist, that my muscles are ridiculously sore. If I didn't exercise, I would understand but I am exercising regularly - 40 min of moderate to mild gym (that's all I am allowed) three time a week, and yoga once. (Given up on tai chi cos it hurt my knee.)

"Aah, that is from the Herceptin," said Erica. "Flu-like symptoms which include muscle pain".

So now I know.

The taste is back

Want to preface this posting by saying two things: 1) am writing this from my cellphone so excuse funny symbols and things which occur until I have time to go to my laptop and correct them; and 2) I think this blog must sound like a litany of woes and moans and groans but in fact I am generally quite cheerful and think most people would not realise I have been sick or am still undergoing treatment - it's just that I am using this blog to document my progress in the fight against cancer and so not focusing much, if at all, on the rest of my life which is busy, busy, busy going out having fun and working hard. Perhaps if u follow my twitter updates you will see that.

Anyway, what I want to say is that as I finished my treatment last week, I got those dreadful taste in my mouth, Mentioned it to the cancer support group lady whom I had last met on the day of my first chemotherapy treatment a year ago. Of course she did not remember me but I remembered her. She comes to the oncology centre only on Wednesdays and the last time I went on a Wednesday was for my first treatment. She was thrilled when I told her how she had helped me so much, about explaining how not to move after taking the two - or was it three - day obligatory anti-nausea pill after chemo - it was best to lie in bed for had an hour then get up and have breakfast, as well as explaining in detail exactly what the immune compromised time meant in the second week after chemo.

Well, to get to the taste. I was talking to her when my Herceptin treatment ended and it hit me: there was this shit taste in my mouth. Mentioned it to her and then to the nurse who kinda shrugged it off.

Got progressively worse and I stocked up on sweets. Now this week it came back. Dashed out of work at a busy time yesterday to buy sweets and today the taste is mostly gone but present sporadically. My one sister said it's the taste u get when u pregnant - metallic - and guess that's the hormones in Herceptin which are causing it. Not going to phone the centre about it but will ask them when I go on the 1st.