forgotten the routine

If I had written this earlier tonight, it might have been quite a tale of misery but now - and it is already after midnight - feeling much better. Just more relaxed I guess. Going away for the weekend, to the mountain kingdom of Lesotho, and finally packed. Gosh, cancelled my show tonight so I could have time to chill and pack and only finally packed a few moments ago. Love travelling but not the world's best packer.
And it's only a weekend. But have progressed from taking lots of shoes for a two day trip.

Anyway, the problem is that still have pain in my arm and shoulder area that was radiated. It burns a lot. Did exercises this morning but a once off is not enough.

And now cancelled biokinetics tomorrow cos need to see The Lymph Lady. As far as I know, have a five minute appointment but it's a bit of an emergency cos discovered on Tuesday at my appointment that I was massaging the affected arm incorrectly during the lymph drainage massage. She showed me the correct way but i have forgotten. Read the manual I have but cannot make sense of it. Spoke to her for ages on the phone but could not work it out. So off to Morningside Clinic tomorrow, instead of bio, for her to show me again. In the interim, that is, during tonight's massage session and again tomorrow morning, she said I must leave out all the arm massages and focus only on my body massages.

If my arm has increased in size, which it looked like to me when trying on a sleeveless dress today, might have to get a compression sleeve. Yuch yuch yuch. Hoping the swelling will go down by Monday, that it was just caused by the herceptin but with another 15 sessions to go.....

dizzy lizzy

Damn it. Felt a little dizzy today. First was after bio but then thought maybe I had sat up too quickly.
Then about four-five hours later, felt pretty bad, like I was going to keel over. Did nothing and let it pass but remembered I had felt a little nauseous at yoga for a while last night.
Is it the herceptin? Will wait and see if it returns.

swellling is up

Was chirping along today, feeling really good, happy that I am dealing with things and can cut down the visits to the therapist when ... wam! Went to see the Lymph Lady and my swelling was up. My arm was more swollen in three places I think it was, most of all in the upper arm (1/2cm). And my left bra strap is digging into me, which it usually doesn't, so I am guessing my shoulder is puffy too. Dunno.
Plus she said I was kinda pink where I am sore. So phoned the radiation oncologist today and left a message. In retrospect, don't think I left a very clear message. But my underarm is burny tonight, post yoga - which was fab!!
The Lymph Lady said the increased swelling is likely to be due to the herceptin I had yesterday. She keeps referring to it as chemo and when I say: "but it isn't!" she insists it is, a chemical therapy.
Well just praying the swelling goes down - and that the pain goes. Not ideal although luckily found in yoga tonight that my mobility of my left arm is far better than i anticipated. Only once I could not put my arms somewhere (now cannot remember which pose it was). Think it was straightening arms and putting them back.
Gosh but remember the daily radiation..... sjoe but it can lead to complications!!!

cancer and therapy

When I got diagnosed, I walked out of the doctor's office and knew two things: I was going to go to therapy and I was going to write a blog.
With all the ups and downs of the diagnoses and the confusing treatment options presented - I had breast cancer but no primary tumour ie nothing in the breast itself but two cancerous lymph nodes - I didn't make it to therapy for a month. Think it might have taken even longer to start this blog. Cannot remember now. But know i battled on what to call it - now the hats are no longer relevant and think the name is a bit long but cest la vie....
Anyway...today decided I didn't really need therapy. But hesitant to throw up the lifeline completely, so therapist suggested I come twice a month instead of weekly. Fine with me. I am not depressed and when/if I do get miserable, it's usually for about an hour or so. Think I am handling things ok. Alright, so still not crazy about my job and getting fed up with being sick - well the cancer is gone but still having treatments (hormone tabs and herceptin) so getting sick of side-effects. And pain. Have pain from the radiation I had.
And in a way getting sick of this blog too. This journey, this experience with cancer is never ending. The cancer has gone but the treatments.....so tired of it, tired of the focus on it so finding I am more and more hesitant to write about the process cos want to forget about the cancer and just live, do other things. Plus, because I have had swelling problems from the radiation, start and end every day with about 30 minutes of manual lymph massage. So want time to do other things, things that aren't connected to cancer, that will allow me to think of other things.
Ja, ja, ja......

15 to go!

Had second treatment of Herceptin today and so far, so good. Once again, did not like the experience - really dislike needles cos it hurts when they put it in me and as it starts getting into my body.
Did not get a chance to talk to radiation people - wanted to leave message for oncologist re the pain I am having.
Oooo, feeling tired. And it's only 7.15pm. Mmm, guess this is a side-effect. Cancelled my two dance shows tonight just to be on the safe side.
Might get into bed soon.
They told me today about this woman who has a double dose each time - cos she is very heavy and it works on weight.

after radiation

It's about two months, maybe three?, since I completed my five weeks of radiation for breast cancer.
At the time, it had barely any impact. Not even on my skin initially. "It's your healthiness (sic)," said the radiation oncologist, a non-existence word (I think) which I now love to quote.
Well, two months or whatever it is down the line, the burn marks that did appear below my neck have disappeared but it's still damn itchy there. And even as I sit and write this, on a Friday evening, I have thick white E45 cream on the area (ok, at home, so no-one can see). I did use a cortisone-acqueous cream mix but apparently it thins the skin so doctor would not prescribe any more.
And worse than that, am in pain. Not all the time, but often and it's fairly extreme. Well, it's sore. Under my arm, above my boob, below my upper arm.... and so on.
None at the moment so it's difficult to remember where exactly.
Anyway have decided the only thing to do is to exercise twice a day, 10 minutes a time. I had to beg the radiation practice for those exercises (they are supposed to be post-operative exercises and I did not have any surgery) but need to do them if don't want to have restricted movement. Or so I say, and so do some websites.
The trouble has been that the radiation also caused swelling - funny that I did not mention that earlier in this posting cos it's damn serious - but luckily that is now under control although I am doing lymph drainage massage twice a day, for about 30 minutes a time, plus seeing an expert for it once a week, and it's do time consuming that have not had time to do arm and shoulder exercises, or write much on this blog.
But not complaining. Hell, the massage has become part of my life. Hopefully not forever though. And, as I said earlier, have to now add 10 to it in the morning and night and surely that cannot be too difficult. Ten minutes is after all only 10 minutes, even if it does mean i now have to wake up at 6.20am and not 6.30am on the days I have biokinetics.

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.

here we go round the mulberry bush....

Enjoyed my little overnight jaunt at Quiet Mountain Lodge in Magaliesburg. In fact, at first it was so quiet and so tranquil, that it was almost too quiet. Time passed so slowly. Then I grew into it. And the food was great. Think I would go back although don't always have the money for such get-outta-town jaunts.
But the night before I left got miserable. Could feel the little bumps in my mouth. Had a sore on my lip and it became oral thrush. Same as before, with chemo. From what I have read, it's from the herceptin I am taking. Damn damn damn.
So back to using what I used to call The Yellow Gunge. Hard to believe but still have it. Was about to ceremoniously/unceremoniously (was still deciding) chuck it all out, and now this.
Will be phoning the oncology centre tomorrow morning, before I see The Lymph Lady, and before I fly off to Cape Town for a week (will not be blogging while away). Just hope it's ok, that my immune is not too down and can still fly.
Plus, my arm has been sore. Not sure if it's from radiation or lymph hassles which the radiation caused, but all in all had a sleepless night last night (exacerbated by the coffee, if not caused by the coffee).
Look, not as bad as it all sounds and writing it down like this does help, but it is nevertheless disheartening to jump back to side-effect symptoms I had thought were well behind me.
Oh and munching raisins as I write. Diet from tomorrow.

my birthday

It's my birthday today. Had horrible time at dietician yesterday - who happens to be the most expensive dietician ever. So far have paid R1450 for two visits, and the third visit will also be R700, she says. I told her yesterday that she wasn't really helping me- well with what she had to say so far.
I went to her cos was told she had experience in dealing with weight gain on tamoxifen, the hormome tabs I am taking to help prevent the cancer from returning. Well, I might as well have been told eat every little. All she said was eat mostly salad and veggies, no starch at night and eat certain specified mueslis for some breakfasts instead of my usual slice of bread and a protein.
It is an inflexible eating programme - no treats, no adaptations plus she does not approve of soya sausage (my previous dietician had said one sausage = one protein; this one says have none) but if that is what it takes, that is what I will do. But cos it's my birthday, am starting on Monday.
Have a while to see if will return to her but got very angry when she started sprouting that shit about eating to prevent cancer as I had green tea every day and ate more oily fish than anyone else i know and still got cancer so told her it was kak that certain foods prevent cancer. It might have been worse had I not eaten healthily, is all I might accept. Plus recovery might be better although have pains and swelling from radiation so not immune to all that.....
Also told her she was not really helping me, not telling me anything I didn't already know.Also told her she was outrageously expensive.
Plus am still angry she told me to just eat all those veggies i have an intolerance towards - but they make me throw up!!
Now have discovered there is a discrepency between what she told me re starch and what is on the papers she gave me - which incidentally are two handwritten ones she wrote during the session and one printed thing on salad dressings which I asked about. Don't know why she is so vague re things. Maybe she works best for people who really are on the wrong path.
Think I know why I hate dieticians so much - most of them really dislike food so can not understand why never being able to eat a bean curry (she says beans are mostly starch rather than a protein) could be a problem. But I have to get thin. Thank god for Monday.

trust me to get an expensive dietician

I want the booby prize for trying every damn trick in the book, for taking action on any little thing that happens in this fight against cancer and becoming well again. (Incidentally, I am beginning to realise - and it's a depressing thought - that this fight will never be over, just a continual variation on a theme as one more side-effect rears its head and so on.... gosh, I sure am ringing out the cliches, maybe cos the reality is too much to bear.)
Anwyay, to get back to my point: after two weeks in which my weight has crept up one and a half kilos without my eating more, and feeling increasingly chubbier as a result, I went to a dietician today. She was recommended by The Lymph Lady as someone who has dealt with tamoxifen weight gain, which is what is happening to me.
Anyway, first appointment R700. And the second? Even more - okay, by R50, but that is more than I have ever paid for a dietician.
Let's just hope it works.
What with my thyroid history and now my cancer experience, and all the related mouth and throat problems and eating hassles that has thrown up, my case history took up the entire one hour session.
"I have to see you tomorrow!" I said. Well, Friday is my birthday and I refuse to have any appointments, Monday is a public holiday and on Tuesday, after my appointment at The Lymph Lady, flying out to Cape Town.
And I cannot afford to keep gaining weight in the interim.
Ok, after tomorrow there will be a three week break, but she is still the most expensive dietician I have ever been to.
In the meantime, feeling much better than I did yesterday after the herceptin, although twice felt I had a headache.
Found yesterday's reaction to it really scary; a throwback to what it felt like "to not be okay", to when I had been on chemo and still carried on doing things but it felt like being on remote control.

the herceptin mystery unveiled

Finally had herceptin today. When I walked into the reception area, the nurses laughed, about how I have had an appointment almost every day. "You had one yesterday!" said one. "We stopped pencilling it in," said another. All said with smiles on their faces.
Being in that chemo room, this time not having chemo, made me realise how friendly everyone is and how cheerful so many of those chemo patients are. Quite remarkable.
And the staff are exceptional.
I also realised that I need never feel bad about how many times I have phoned them, asking them this and that. It is as much part of their job as administering treatments; they answer queries from patients all day.
So what was herceptin like?
Well, I had forgotten how awful it is to have drip inserted in your hand. And how much it hurts as the liquid goes in. Today it also battled to get into me, and about three times they had to adjust it to ensure it was still dripping. By the end of what was 2 1/2 hours, a double dose to kickstart, I was cold, just like I had been with chemo, and they covered me with a fleece blanket. Orange.
Erica the head nurse told me I might feel shivering - literally, so that my teeth clatter - about eight hours later and that if so, must just get into bed, cover myself with lots of blankets, take panados and go to sleep. And would then feel tired tomorrow.
But she said it might not happen. It's now just over 12 hours since I finished the treatment and that has not happened but must admit, felt pretty awful this afternoon.
And was surprised. Did not expect that. It reminded me of the chemo feeling. Not just a headachy feeling, a yuch feeling. Funny taste in mouth and all that. Ok, ok, not as bad as chemo but after I came home and slept for a while (on a couch in the sun, but indoors), and felt well enough to go to the shops (had to buy nail polish remover and get more hormone pills),rememebered how yuck I used to feel.
So much for the 'flu-like symptoms' i have read about. But do feel ok now (well lying down in front of the heater and not doing much), so guess it's ok. Curious to know how others have felt on herceptin.
Oh, seeing a dietician tomorrow re weight gain on the hormone pill tamoxifen.

starting herceptin tomorrow

Had a horrible day. Spent most of the morning clutching my cellphone waiting for the oncology centre to phone, or the central medicine depot to phone re the money transfer. Had an appointment for it booked for 11.30am and as the authorisation had been confirmed on Friday, was hoping the actual treatment could begin as planned. Mmmmm, have had an appointment booked every Monday for the last month.
Finally, after biokinetics, I phoned the oncology centre and was furious to hear that the written authorisation had not come through from the medical aid. It was looking bleak. And if I didn't start tomorrow, then would not be able to go away for the weekend as Swaziland is surely not the hottest spot for medical treatment; plus would then need to start next week and so would not be able to go to Cape Town (am on two weeks'leave).
Then went to The Lymph Lady who told me that many people feel awful on herceptin: tired, sickly, quite wrecked - and for three to four days.
Meanwhile, I waited for a call to say how much money I needed to deposit. When I phoned the oncology centre to enquire what the hell was going on, spoke to head nurse Erica who told me would be fine by Friday to go away. She said I would/could be shivering and feel awful on the night of the treatment, then very tired the next day. Or else feel nothing.
Then nearly burst into tears when heard, despite a confirmed booking from an agency last night, that Royal Swazi Spa was full. Phoned them but they would not put me onto a waiting list as they already have one.
Then opted for Quiet Mountain Lodge even though could get only a Sunday night booking. Now have the dilemma of wondering if should have a party on Friday (it's my birthday) - but if so, with what money?
But eventually, eventually, the herceptin thing was arranged, despite the fact that the confirmatory email containg proof of payment took ages and ages to arrive at the central medicine depot - which allowed them then to deliver the medication. Appointment is at 9.30am tomorrow. Terrified.

There - but not there

Finally got the authorisation for herceptin at 5pm on Friday, as the medical aid closed for the week. The oncology centre had asked me to take over (this was at about, dunno, some time in the early afternoon) and it took about two calls and being firm before I got verbal confirmation from someone who said she was a client relationship manager and gave me a reference number for the call and said she would speak to the oncology centre on Monday.
As had been arranged, I emailed the oncology centre to inform them of my success which, as My Friend pointed out, is probably no big deal. The oncology centre had had enough, plus they did not have the time to fight just one case. I could prioritise it, and am rude enough to have got it accelerated.
Now the question is: will there be enough time for the logistics so that I can have it as scheduled at 11.30am - or perhaps a little later - tomorrow. The oncology centre starts at 7am - when I am expecting them to call me (crack of dawn for me) and then the central medical depot has to contacted, then they have to contact me about the amount I have to pay, then once they have the deposit they will deliver the medication.
Sjoe! Whether that can happen by tomorrow midday... at the very least I then expect to have it on Tuesday.
And in the interim, have bio at 8.30am and The Lymph Lady at 10am.
And if the truth be told, feeling a little apprehensive about it. Yuch. A drip for two and a half hours - that is the duration of the first treatment - is a bit daunting. And to sit in that same place where I had chemo.... yuch....and how will I feel from it? They said flu-like symptoms...