Today is 3 years since I started chemo

Today is exactly three years since I started chemo on February 5 2009. It was quite a long lapse from when I felt the lump on the side of my chest in the shower (Christmas day, 2008) because there was no-one in Joburg to do a scan at the time. Anyway, the delay did not affect anything I was told.
I remember the day I started chemo very well and hope I never have to have it again. But if I do, hope I have access to it. I promised myself that I would never resent the treatment.

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.

then and now - just an inkling

Was trying to download a pic I had taken of some flowers growing from a cactus in a pot, so was going through the pictures on my computer when I came across this one titled 'stubble".
Taken on February 27 last year - I started chemo for breast cancer on February 5, world cancer day - it shows how my hair was falling out. It never fell out completely; there was always stubble at the top and back, with only the sides completely bald.
I couldn't stop staring at this pic. Think my hair went a little thinner than this, but not much. Today my hair is a mass of curls, chemo curls, they call it.
When I showed this pic to The Yoga Man, he showed me a pic of my face at the time. Mmm.. much thinner. About 7kg less than I weigh now. At present my weight is 2.4kg up from when I was diagnosed on January 15 last year, and 1kg up from last week, but still 3kg down from what it was two months ago.
So essentially during chemo, during the time I went off salads and protein barring tofu and boiled eggs, and during which I had bouts of throat thrush and could consume only liquids and mashed bananas and soft-boiled eggs, I lost only 5kg. Actually, think it was only 4kg.
Mmm.. meanwhile, luckily now my arm is ok. On Monday the measurements were the same as the previous Monday. And I have decided to see The Lymph Lady weekly - instead of the bi-weekly I used to do at one stage - until such time as my arm is stable and I feel ok about it. As in calm and unhassled. I cannot live with the stress I went through about a week ago with my arm. Not good for me.
I am, however, flying - but only a short 2-hour flight - next week. That might throw it out. Plus I need to lose that extra almost 1kg I have gained, else that too could throw it out. But generally much happier when my arm is ok, when it's behaving, as it were.

sometimes it's the calm afterwards that can be so stressful

Have had some breathing space. No more dramas like finding that hard bit (can't think of how else to describe it) at the bottom of my left breast, and when I saw The Lymph Lady on Monday she said my arm was now so good that after the next visit (in two week's time cos she is going away so had to cancel my appointment on Monday), can look at coming less and less. Wow! Delighted, not least cos of the expense. Although the medical aid pays most of it back, having about R400 to pay once a week (R392.60 to be exact) is quite a huge outlay. Look, the lymph treatment has cost thousands but it's been worth it.
Ok, ok, today my arm did not feel brilliant, but one of the reasons it's been great is that I have been eating less and less and so losing weight and so my arm has got better. Then last night I had about a glass of wine and ate masses of food - all veggies as in steamed asparagus with diet mayo, salad but with avo, and roast butternut, garlic and marrows - and gained weight. Hungry now actually...

Anyway, I find I now have time to think back and remember. To think about the time I had treatment, the time I couldn't go out (to public places) cos my immune system was vulnerable from the chemo (one week after treatment, for a week), to think about what's happened. And I almost feel I want to go back to therapy. Well, have thought that a lot. Don't think I am unstable or unbalanced, just that it feels kinda ....overwhelming? But don't have money for therapy, even though my medical aid will buy for about six months worth, or the bulk of it for six months, I don't have the spare cash to pay for it before I get the money back, ie, to pay upfront. Look, if it was dire, I would make a plan. It's not. Just thinking back a bit. And so glad time has passed and I am well. And glad that time has passed and so it is all something that happened in the past.
And I am so glad I am writing this blog and keeping a record of it all, a record of what I feel and think and.. caught a radio programme this evening about breast cancer and I realised how much I know, partly because I had cancer and also because of this blog and the others I have read and those I read regularly: Julie Goodale's Fitness for Survivors,Robyn Semanko's I am 30 years old and have breast cancer and the remarkable Daria's Living with Cancer/.

haven't written for weeks

Think I know why I haven't written for weeks. Firstly, cos this arm thing is still in limbo. That is, still under threat of developing lymphedema in my left arm and this is my second week of alternating days with and without the compression sleeve. This week it is two days off and one day one. And have to admit my arm does not feel good and even the biokineticist said this morning that it seems more swollen in the middle of the upper arm. And it feels swollen too. I am just trying not to think about it. Tomorrow I have to wear the damn thing again.
The second reason I haven't written is that I hurt my neck.It's better now but it got to the point where I couldn't move my neck. Then the anti-inflammatories I had to take made me feel nauseous and generally awful. Horrendous. Was at a cocktail party on Monday evening where I felt I was going to keel over. Haven't felt like that since I was on chemo. Then I had an excuse and would have sat down. This time I kept standing.
Anyway, four physio sessions later and lots of nausea later and I am fine.
But found the ordeal horrifying and scary and really yucky to feel so ill and be so debilitated.
Kinda worried about my arm too. Actually, it was a relief to start worrying about my arm again. Then I knew I was ok again. Only really today that I am ok and there was a time I was feeling flaky. Last night felt ill during most of yoga.
Tired now. Twenty minutes to midnight. And still lots to do. Plus lymph massage and just remembering that I did not sleep much last night as had upset stomach - think it was from the anti-inflammatories - and had to wait till I felt ok before I could take my cholesterol pills and so ended up going to sleep very very late. No wonder I am feeling so tired. Damn. Have the dishes soaking in the basin. And now soooo - is it "toooooo"? - lazy to wash them.

ay ya ya.... measuring my arm

Been on a week's leave and back at work today. D-r-eadful. Was totally miserable all day but worked till 7.30pm cos took me so long to get through all the emails. Think I am now back in the groove though.
Anyway, been to Cape Town twice in the last two weeks. Once on a planned holiday, the other time when my dad got very ill very suddenly - he is fine now.
Saw The Lymph Lady today and it seems all the flying could have affected my arm. It has gone up 1/2cm in two places on my lower arm - the wrist and the middle of the forearm I think it is. This hasn't happened before. Usually it's my upper arm. The Lymph Lady says it's ok but fak, if it gets worse... will have to wait and see. In the interim, am seeing her every week for the next few weeks but that was pre-arranged anyway.
Funnily enough, I am ok about it. Plus gained a little weight on holiday - damn, damn,damn - which has also probably contributed to the increase in swelling. Damn, damn, damn. Gotta lose weight.
But she did also say that i was the first person she knew where the chemo had taken away the cancer completely - The Yoga Man says it's cos I didn't have a primary tumour and my cancers were 'byproducts' as it were (I don't agree, I don't think), and also that I can now progress to using 1kg weights at biokinetics, alternating with the 1/2kg weights. So that is good news.
Oh my gosh, what happened to the time? It's almost 11pm. Gonna read. Been reading a lot.

Talking vs not talking about it

I realised today while waiting to meet a work colleague here in cape town that i no dont like to talk about having had cancer to people who dont know. So when one person once said, "Oh, u have grown your hair back!" i left it and let him think i had shaved it off for fun. Then today this colleague asked if i had seen my mom before/when she died - we were having an intense conversation - and i explained i had been too sick. Then I thought, what the hell, and told her how i had been having chemo and my blood levels dropped and the oncology centre would not let me fly and then the next day when i booked my flight for the funeral the oncologist, a locum, said i was to wear a surgical mask on the flight and no one was to kiss or hug me. ........ Ja ja ja..... Now i am thinking of going to a support group meeting, Am going to find out when next they have one at the oncology centre. Think they are about three hours long, which is a bit much, but want to meet other women on herceptin and tamoxifen.

no mammogram and scan after all

After making myself hysterical with fear - although woke up this morning and said: "Whatever happens I will deal with it" (does one have a choice, really?) - I did not have to have a mammogram or scan after all.
When The Tango Man had asked me when my last mammogram was, I said "October", forgetting that when I found the lump below my armpit on Christmas Eve last year, I then had a mammogram plus a scan in January (there were no doctors in town to do one before).
So when I went there today, was called in to my appointment and then told that it was too early. It either had to be a year since my last one and now was three months too early, or six months since I finished radiotherapy. Now no clue when I finished that but do know, cos I checked via this blog yesterday, that I finished chemo on April 14, that is, six months ago so it's a far shorter time since I had radiation.
The woman who was gonna do the mammogram said she had had breast cancer 23 years ago and had had a masetcomy. By the same surgeon I had seen but who had decided not to operate on me.
"Didn't you have surgery?' she must have asked me about three times. And I explained that I did not have a primary tumour.

an aside: the hidden side-effect

When I had chemo, I knew my hair was falling out. But what I did not realise, until the hair was growing back and most of the side-effects subsided, was that the chemo had also had another, somewhat hidden, effect.
It had removed all the unseen hair and blemishes, such as the light facial hair on the sides of my face, and the little red mark on the left side of my nose which my dermatologist had told me could be removed with a beautician's laser treatment.
Hell, now that it's back, I have actually been enquiring about laser treatment, albeit it without urgency.
Think that absence of all hair and blemishes merely added to that ill look I had while on chemo.
Oh well, now today still battling with swelling from the radiation. And got bitten by something on my vulnerable arm, dabbed it with surgical swap, added batroban antiseptic cream... and now off to get more to try to bring down the swelling that tiny unknown creature has caused.

i know people mean well but.....

I get damn annoyed, inside me, when people say: "Oh, you are sooooo brave". I know they mean well but actually, what do they mean? I try to look stony faced but probably just glare and mumble something about being fine. But really,what do they mean? Where have I been brave? Am i brave by being at the same dinner party with them, by not being home and sulking? Dunno what they mean.
All I have done is been on this journey because I have no choice.
And the truth is that the situation I am in now is one of the worst I have been in. My fingers are no longer stiff and sore; but my upper arm above the elbow towards the back is distinctly swollen. On Tuesday I see the lymph expert again but this is what radiation has done to me. I can pray it's just temporary; else it's lymphoedema and a chronic problem that won't go away. And I thought, from the reading I had done, that it mainly happened to those who had surgery with lymph node removal and then radiation. I had no surgery, kinda plain-sailed through chemo and radiation and now have this. Started when radiation finished. Well between the second last and last treatment.
Horrifying.
Was also horrified today to hear of someone who was on this hormone treatment, which i think i have to go on too but not sure, and felt so nauseous that half way through they gave up. Ok the person concerned is 83 and i am not but still, doesn't sound too good, does it? Oh well on Monday see two oncologists, the main one plus the radiation one so will find out more then.
But damn lymphoedema and damn swelling. Go away; i don't want you.

a new time

Realising that I am spending more and more time hassling about other things ie non-cancer related. What a relief. Not being confronted with the swings of chemo treatment where one week was the treatment, the next the immune-compromised time (and increasingly, the time I gathered more side-effects), and the next the surfacing time - or at least, that's how i remember it now - followed by the daily anguish of radiation where i was always so hassled i'd be late, i was always early; on day two of nothing, feeling kinda different. (Well, not quite nothing: had to see a doctor yesterday and have blood tests relating to a side-effect but it was hopefully a one-off).
Now I have time to look around me as hopefully i will become less self-obsessed. And now what i see is not always what i like. Close friends have stuck by but acquaintances/sometime-friends have not. They seem awkward around me. I need to dwell on that. Or should I even bother?
My social skills are also rusty. That I need to work on.
It's also kinda scary feeling better, feeling ok. Cos now I remember how brilliant I felt, how healthy and energised and happy I felt, around the time I was diagnosed. I felt so good I could not believe I had cancer. Five and a half months ago. Been a long time. Didn't realise it was so long ago. It's gone quickly. And now I am also minus a mother cos mine passed away three and a half months ago.
Sjoe....Lots to think about now.

wow wow wow

So happy. finally had my last radiation session today. what a relief. an although my skin is a little red, well, it's redder today than before, and sometimes slighly itchy, and now my new sports bras are hurting and the doctor said must change to other bras where can let the strap fall loosely over my shoulder, all is well.
"The girls", as the radiotherapists are known there, laughed at me when I said I was tired. "It's your last session and you're only tired now! Puh- leaze....." they cried. And when I bemoaned my pinkish skin, they laughed too. "Pu-lease,".... they cried, "we have seen far worse".
I know I am lucky to have had minimal side effects. Well so far and let's keep hoping and praying it stays that way.
But it's funny. Was thinking. When I had chemo and my stomach was in agony - hell it would wake me up after 6am each morning - I was told that that was not caused by the chemo, not the chemo I was having.
Now, when I have a shit taste in my mouth (sporadically) and my mouth is so dry that sometimes I think I am going to vomit (mostly when I drive home at night, after drinking at least 1 litre of water!), I am told: "Oh, not, that cannot be from the radiation, not the radiation you are having; it must be a throw back to the chemo."
Hoo boy......

had forgotten about it

Noticed something this morning I had not seen in months. In fact, it's not something which has ever played any significance in my life. But there I was, having a quick stare into the mirror wondering how long it would take before I could go hatless and just have a short cropped look, when I spotted it: light, blondish facial hair on the sides of my cheek. It must have gone away with the chemo, and has now returned. Welcome.
Later this morning, however, felt less cheerful when become suddenly, irrationally irritable. At nothing or no-one. There was nobody at work anyway as few work on Mondays. Just irritable. Felt like going home and sleeping. Later, much later, as in a few hours later at lunchtime, I started feeling better. Now could even go out for supper although am happily ensconced in front of the heater ..... with half pajamas on, so can always whizz back into proper clothes should the invite occur...
All this makes me pretty sure it was the radiation. Remember the doctor saying: "We usually advise our patients who work to come for the last appointment of the day so they can go home and sleep afterwards". I did (take the last appointment), for the first week or so but then leaving the office at 3.30pm to be there for their last daily appointment at 4pm became a bind and one, which then, was unneccessary. Now have four radiation sessions left..... and not sure can change it as tried to make Wednesday's one earlier and couldn't. Well, at least the irritability faded and maybe the nature of what I had to do to work had something to do with it.

relief!!!!

Now I know that an excessive use of exclamation marks is so not cool but hell, I deserve the three I have pasted after "relief" in the title here.
I feel relief!!! And another !!!
Have spent the last week hassled cos I was swollen in the area of my collarbone. Cancer there would be worse than the cancer I had. Doctor said she would monitor said. She did. And today sent me off for a scan. Said it was highly unlikely but could be cancer (The Tango Man had said the radiation might not work and then I would need surgery, or, she said, it could be a clot. Before I vomited all over her desk, I asked what a clot would mean and she said very matter-of-factly "anti-coagulating medication". She also said something about swelling there being unusual.
Oh well. Lying there on the bed in the darkened room (at Morningside Clinic) waiting for the doctor to come do the ultrasound scan was not my favourite time. Neither was last night when I tried to think about what it would mean to have cancer again and try as I might, could not picture myself going for chemo again. Needless to say, not my best night.
Well thank God and whoever else is out there looking out for me, I have neither a clot nor a tumour. He saw two lymph nodes but he said they are normal and that if I scanned him, he would have them. On the right side, which he was not asked to scan, he found one lymph node, also normal. On the left axillary, below my armpit where I had had two cancerous lymph nodes, there was nothing.
"Let's check your thyroid," he said inexplicably, and then said I had had an infection there in the past and it was not working properly. "Oh, I know," I said, unconcerned and with a big smile on my face, "I have had huge thryoid problems in the past". We briefly discussed my medication then he asked if I had had it irradiated. No, I replied, it destroyed itself.
Find it fascinating that he could see my thryoid was fakked. But that is nothing. The daily 0.5g of eltroxin I take daily sorts that out. For now so happy that I can continue on my path of getting better.

hi ho, hi ho, it's.....

Mmm.... not the best of days but eventually feeling ok to write. Was angry with doctor today. She was angry because I mentioned something about lying down in the bath and apparently that is not allowed. But I was not told.
Fact is, have been feeling I have been told very little about this cancer and what to expect. Managed with the chemo but with radiation, where there are things one can do and not do, hell, how was I to know one cannot lie down in the bath cos it affects one's skin?
Thinking about it, I only knew and understand the chemo immune-compromised week and what to do and not do cos there was a woman from a support group at my first session. Merely handing out sheets of paper, as the oncology centre did with the chemo, or a booklet, as they did with radiation, is not sufficient. What happens if one has poor comprehension skills? I don't but I have still gone wrong.
The doctor was insistant that the booklet said not to lie down in the bath, but I showed her that it did not. Either way, came back to work and re-read the booklet to make sure am following all the rest of the intructions.
Then got upset cos my throat is sore cannot swallow food - and she forgot to look at it. I know it makes me sound silly but I am hardly passive yet she had marched out before I remembered she had not looked at my throat as promised.
Ok, was another problem too. The area around my collarbone is swollen again. Had it scanned before and it was fine. She marched off to get my file from The Tango Man to see what he had said about it. Said she would monitor it and I might need another scan. But said it was soft - ie nothing seemingly there - but swollen.
Ho hum. And as for work, which took away the bulk of my job cos advertisers wanted the colour page it was on.. did not make my day much better.
But relaxed now. If sleepy. G'night.

a revelation

Was chatting to my friend Carlos (ok, on my cellphone in the Hyde Park carpark, returning from Zubeida Jaffer's booklaunch read her website)and read her entry in South Africa's WhosWho and extract from Zubeida Jaffer's new book Love in the Time of Treason when I said, in my usual irritating, self deprecating way "Oh, I'm such a misery" when I stopped - suddenly - and said: "Hey, I'm not. I'm not a misery, at all!"
I always thought I was, you know. But now, now that I have/have had cancer/having treatment for cancer (it went away with the chemo but now on preventative radiation for breast cancer), I realise I am not one bit of a misery. Oh, not quite as 'wow' in my attitude as some people have made out, and yes, I do get bogged down at times when yet another niggly side-effect rears its head, or too many side-effects congregate at one time, but I do not feel as if I walk around with the world's problems on my shoulders. I don't feel miserable. As much as I dislike waking up early to drive in Joburg's bumper to bumper traffic to get to radiation - and which also means trying to get to bed earlier, an even more difficult discipline - when I turn on Classic FM Classic FM's website and hear some great music or listen to a wonderful story on a CD from the Listeners' Library, I find myself smiling with sheer pleasure. Don't think I am in danger of being a depressive.

what i don't like about having/had cancer

What I don't like about having/had cancer is the constant array of side-effects, no matter how minor. "Oh did u get nauseous?", "Oh, but your hats look nice on you" people say as if the only things u feel,the only drawbacks are the nausea and the hairloss. Bullshit. Well for me that's bullshit, those were the minor-ish things.
Right now - and think I am six weeks post chemo, week two of radiation and my cancer (the two cancerous lymph nodes to the left of my left breast) has disappeared - and I feel the following:
1) a sore throat - could be throat thrush, could be panicky shallow breathing, could be a sore throat caused by the radiation. Seeing the dr tomorrow and will find out;
2) the beginnings of a mouth ulcer
3) somewhat sore hands and lower arms where the chemo burnt my veins;
4) - oh well, that's it.
And that's enough too. A little tired too but not too much. In fact, agitated cos have to be there (radiation) early tomorrow (I changed my 4pm appointment to give me more time for work) and the time's flying and I still want to read.
So guess I'm ok.
Oh and I am very fat. Getting fatter by the second. So bought cake for one last binge. Apple strudel and petit four.

PS: 10 MINUTES LATER: NOW FEELS LIKE HAVE ULCERS IN MOUTH, WELL BUMPS. SO GUESS IT'S THRUSH AND YELLOW EMULSION HERE I COME ... LIKE HELL, WILL START TOMORROW

had a nerve-wracking moment

Had to go to gym today. The same gym I used to bounce into four times a week, do my hour and 25 minutes workout, shower and then leave. Will sometimes shower (saturday and sunday mornings) and sometimes not (Mondays and the other weekday). And if I was in a hurry to go somewhere, did less, say 45 minutes or whatever.
Anyway, once I chose my oncologist, he banned me from the gym, even before I started treatment. I distinctly remember roaming around Hyde Park one evening and bumped into my friend Eugenie and explaining that I was on my way to Pick n Pay supermarket to buy one item, just one item (doubt I actually walked out with only one though), because quite frankly I was at a dead loss as to what to do with myself. Early evening was my gym time - and now what was I to do?
Once I started treatment, my nice euphemism for chemo, don't think I missed gym, dunno. But do remember I felt quite sad when I drove passed it the first time. Had a panging, a longing.... it was the place where I .. what's that cliched term? It was "me time". Oh not that I have kids or anything like that, but it was the one time I did not have to think but could just focus on what I was doing physically. And think about my breathing. And just feel good about life.
Then today went back. Thought about what I wore today very carefully cos today was the day I was going to the gym. Wore a pink cap with a butterfly on the side. Think I detest if if I think about it. Dunno.
Sat coyly on the seat and waited for my appointment with the biokineticist and felt like crying. SMS-ed The Empathetic One and he said: "it must be the violin" and I instantly felt better. Smiled. It was ok.
But later I thought: why did I feel so sad? And I think it's cos sitting there, with my hat, in my clothes, so different to the way I used to bounce in, and it was ultimately a harsh reminder of how things used to be, before I was diagnosed with cancer.

a new look

Not sure how long I am going to keep this new template, or even if I like it, but have opted for a change.
Went to movies tonight, the new star trek movie and even though it was a compromise choice to suit a friend rather than me, really enjoyed it. Thought it was well directed and acted and enjoyed the script. Sharp movie.
Have not been to movies for ages, as in months, so a lovely change.
Otherwise well. Looking forward to going to Cape Town next weekend to see my dad. How great to be allowed to travel.
Then have an appointment at the gym on Tuesday where they will assess me re an exercise schedule. All I can see is that think I can do very little. Today did 30 minutes of exercise this morning. Amazing!! Cos just a bit of yoga and some stretches and my knee and legs are no longer stiff and sore.
Later today walked up many flights of friends to view a flat with a friend - and boy, the old lady agent on the top said : "Think you (referring to both of us) need to go to gym!"
I was not too embarrassed, hell, have just come out of chemo but really, that decides it: not going to go back to yoga this week. A 90 minute class is outta my reach at the moment. After 30 minutes this morning was a little out of breath... but it felt just the right amount of exercise for now.

desperately seeking tranquility

had planned this whole piece about how i want one, no, not one, about three tranquil days - maybe even a week - at the risk of getting bored, ending up saying how the truth is probably finding the tranquility within myself.
But now too damn tired to elucidate all that, and all cos i worked quite latish to make up for coming in late cos of radiation. Plus saw the doctor and no, nothing wrong with my chest - was breathing shallowly cos i am panicking is the only possibility. Did cough quite frantically just now again.
Good news is that can go back to gym. Let's rephrase that: must go back to gym but cannot get too sweaty or out of breath. So going to get biokineticist at the gym (my former brilliant biokineticist Dalena is off to live in Namibia). Booked an assessment for Tuesday. Said I want a brilliant highly-experienced bio. Scared if do it on my own will under-perform rather than over-perform, cos have this desperate need to protect myself. Everything makes me anxious. Even the thought of exerise as The Tango Man was adamant about no gym but no the chemo is over and it's radiation time. Actually very excited about going back to gym. Going to be quite emotional but happy emotional. The first time I drove passed the gym, after I had been banned from going, I felt quite tearful. Even now, can barely bring myself to look at the building cos was so happy going there. Now going to be happy going there again. Gonna be kinda awkward though: gymming in a hat, like the frummes (religious Jews).