Cannot believe it is so long since I have written...

I am not sure what happens but I have been feeling protective of my thoughts and actions; not wanting to share them. I have been feeling a need to be private.
Yet here I am again.
The most traumatic thing that has happened, and it happened a month and a day ago, is that my friend died suddenly. She did not have cancer but she did have lyme disease which she was battling to control. But she didn't die from that. In fact, I do not know what she died from as she lived in the US (so I wasn't around) and her husband has declined to discuss it, either with me or her family, saying it was a "tragic accident". Or maybe he said "terrible accident". I am so shocked about her death and then not knowing the cause that I have spend nights googling her name to see if there is any info re her death. Perhaps she killed herself. I do not know.
The circumstances and lack of communication meant that I did not even consider going over for the funeral. When I did ask about funeral arrangements, thinking I would perhaps commemorate it here at the same time, I did not get a response.
I last saw her in February when she was here, in South Africa, and we did loads of things and had a fabulous time. It is hard to believe she is no more. Just like that. Gone. I last spoke to her on email about 10 days before she died. I now understand what is meant by a lack of closure. I have desperately wanted to know how she died. Maybe, as The Yoga Man says, I will never know. So I must remember all the wonderful times and experiences we shared. And be grateful for that. But it is sad. She died four days before her birthday. She would have been 51.

***********************

As for me, I have just been on holiday to a fab 5-star hotel in Umhlanga, Durban and it was wonderful. Went there twice last year and then again now and it is a really super place to visit as apart from one walk on the beachfront, one walk on the beach and a day into the countryside in a rental car, I did nothing. We lay at the hotel pool drinking bubbly and reading. Bliss.

Healthwise, I have had a cold for a month and couldn't exercise or do lymph massage (it just makes your sickness worse). Went back to gym - a very gentle, low key 'workout" - perhaps 'session' is a better word for my 12 minutes of cardio and some stretch-type exercises - and also had lymph massage with The Lymph Lady.
My arm is pretty kak - the best if harsh way to describe it - but hoping that now with regular exercise and massage it will settle down. The Lymph Lady said that she does have patients whose arms are as slightly swollen as mine (I cannot feel anything) and yet wear compression sleeves to prevent it swelling more. She does not feel I need to but it does need to improve. Soon.
And as for my stomach. It was great on holiday but I ate no raw vegetables and very little fruit. Trying to emulate that here. Oh, when I say it was great, I do not mean it went flat; it just didn't hurt although my latest development now is bad acid reflux which makes me want to throw up (walked outta one or was it two yoga classes?) and so I pop antacids (sp?) all day as I have actually gotten sick a a few times and cannot afford to ignore the feeling.
Otherwise I am on leave and very well. Huddled in front of the gas heater right now and going to read. Maybe cook some fresh fish for dinner.

Must make an effort to write more often.

My not-so-great news

Ever since my gynae called me on Thursday night, I have been toying with what to call this post. Been delaying writing it in fact.
Look, I am still alive. But shocked. Upset. Not charmed. Learning to be strong again.
On Monday I had a Z-sampler or endometrial biopsy because I am on tamoxifen and it can cause endometrial cancer. So every six months I subject myself to this excruciatingly sore test. Wrote about it in my last posting. I was very upset after it all on Monday as it was sore and cost so much and I bled so much afterwards and I just had a feel-sorry-for-myself few hours (which I think is pretty unusual for me).
Then I got on with things. Was a little shaken, but fine.
Phoned on Wednesday for the results. Not there yet. Was told that could happen. Phoned on Thursday again - then the receptionists leave a message for the gynaecologist and he phones back later. Forgot about it until I got a call late on Thursday.
"Irregular cells," he said. "I need to do a D&C".... me, the great professional question-asker (journalist) went dumb, numb, whatever. "What is the worst case scenario?" I asked. "Hysterectomy," he said. "Will I need chemo again?" "No," said he but not sure I believe him.
He sort of arranged a date for the D&C, he told me to be there at 6am, could leave at 1pm/lunchtime and I must speak to his receptionist for codes (for the medical aid authorisation). I said I wasn't at my desk, was walking and was five minutes from the office but he said they were closing up for the day (was almost 5.30pm) and I must phone the next day after 9am.
When I did, the receptionist said she was rushing to theatre with something (his rooms are in a large private clinic - "private" versus "state" being essential for top healthcare here in South Africa). I waited for her to call me back - was having an insane day at work - and when I phoned after 1pm, his rooms were closed for the day.
So I don't really know what is going on. Oh, he did say it was pre-cancerous. But doing a little reading, and I need to know how bad it is. I am freaked out. I did ask: "If I refuse to have a hysterectomy...?" and he responded with "then you will live with a pre-cancerous spot".
Tomorrow I will get a copy of the test results (even if I have to drive to his rooms and demand them from that silly receptionist whom I have had a tiff with in the past), see that my oncologist has a copy of it (when I phoned on Friday they said he was about to go on leave till October but did have a locum - and he has a partner I have seen once before - but they needed to see the report before they could schedule an appointment); and make an appointment to see the gynae so I can arrive with notebook and pen in journalist mode and ask him millions of questions.
When I went on tamoxifen, I was told, "don't worry, endometrial cancer is slow-growing and we can cut it out...." - ja, with half my insides too?
I feel devastated. I cannot believe that my arm hassles (borderline lymphedema and doing 1hr of lymph massage a day, split into about 45 minutes in the morning and 10 or so min at night) and now this, on my way to endometrial cancer and more than likely having an operation that is going to bring my life to a temporary stop (you cannot drive for about 2 months and won't be able to exercise and....)is all from the preventative treatment for the cancer I had. I remember my brother-in-law saying when I was diagnosed: "You're fine now but when they start the treatment...". I cannot believe that the slim chance of the tamoxifen effect has happened to me. Don't know why I thought I was immune but...
Ironically, saw my thyroid doctor on Friday and when I said: "So, I am quite healthy then?" he said: "You are VERY HEALTHY - from the belly button up!" One has to laugh........

I am a bit fiery

I am not so happy with myself today. Kinda exploded earlier. I don't take instruction well. I don't take any instruction in fact. I like to do what I want to do. And unfortunately inefficiency drives me dilly. Be that as it may, I am ok now and I don't like to linger on things. But sitting here quietly has helped. It is in fact hours since I 'lost it' and it was only momentary anyway. And then an hour later, after I was sent an email saying my outburst was uncalled-for, I did apologise, also by email, not because I meant it but to keep the peace for the foreseable future.
Anyway, started my day at the oncology centre. Was so uptight about the visit, an unscheduled one, that when I arrived at work realised I had forgotten to wash the conditioner out of my hair which was now lined with this film of soapy solution. So stuck my head under the tap and walked into the office with soaking wet hair.....
I had had a pain below my collar bone since Tuesday. Was pretty sure it was just from gym cos it started on Tuesday a  fter I had been to gym and the firm lymph massage I get from The Lymph Lady2 later that morning made it hurt. But did I really know it was just that? And when I spoke to my biokineticist on Wednesday and went though the exercises I had done the day before, she didn't think that had caused it....
To be on the safe side, I went to the oncology centre this morning. I long ago gave up on phoning. All their staff who were there when I had treatment have left, with the one dying shortly after, and they don't know me and I don't know them. In fact, am grateful that this year didn't give them Christmas presents. Have fortunately spent so little time there that it didn't even enter my consciousness.
Anyway, I just pitched. I explained I was a patient of The Tango Man, and two nurses examined me right there in the reception area. Look, in the past when I have pitched with a problem, they have called The Tango Man but that was when they knew me. Mmm.. that is maybe worrying that I am not getting that attention.
They did offer to bring my appointment forward (going at end of February) but I declined. Both said it was muscular/ligaments. Nothing there, they said.
Relief. That would be an understatement.
I had decided that if the pain meant the cancer was in my bones, would have resigned from work, borrowed some money that I would get from my pension fund and go somewhere for a week at least before starting treatment.
Luckily I am fine. And in retrospect, resigning would have perhaps not been the right thing to do as work can keep one "normal" and sane.....
My arm is unfortunately not great. Hasn't stabilised. Was up 1 and a half cm in more places this week but down in others. Might wear the compression sleeve but tomorrow is a gym day and the thought of wearing it for gym.... either with my arm and sleeve exposed (it is a heatwave here) or gyming in long sleeves.....think I can manage another day without it.
Going to do lymph massage now. This constant routine, dedication, discipline, whatever.... can be a bit painful but damn better than wearing the sleeve all the time.

a quick word

My goodness. It is past midnight and am seeing The Lymph Lady at 8.30am tomorrow (a change of plan, as usually at gym then) and still have to do lymph massage now.
Just to say my arm is not feeling great. Not too bad and did wear a shirt rather than a t-shirt today (haven't worn a shirt in years) and it felt ok, but did feel slightly thicker in the upper arm when got to yoga tonight.
Just praying that it is either in my imagination only, or else it's a minor aberration. As much as it is winter here now and so wearing a sleeve wouldn't be as bad as if it was summer, am doing a yoga workshop all day on Saturday and would be most perturbed if had to do it in a long-sleeved t-shirt and with limited mobility cos of the sleeve. Ag, as The Yoga Man says, I need to distinguish between what is "ok feeling funny" and "not ok feeling funny" as often I swear my arm is swollen and then The Lymph Lady measures it and it's fine. Oh well....

phew!! there is a god

So grateful. Arm is fine and don't need to wear compression sleeve anymore. Totally grateful. Totally relieved. Was so unhappy about wearing it.But The Lymph Lady says I look terrible and declined to do any massage today. So I am now off to the doctor again tomorrow re my tick bite fever. Must admit, I don't feel great. At the moment, however, it's past midnight and I am totally exhausted and have to get up at crack of dawn to take a friend to hospital to have her goitre removed.

still relieved

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

Down 1.2kg

Down 1.2kg so feeling better on that level. Now weighing what I weighed on Friday. Then weight crept up 0.2kg by saturday then 0.9kg by Monday. Hopefully this will affect my arm and it will have gone down in size, And this is not wishful thinking. Lose weight and arm goes down but if have lymphoedema , if lymphoedema has kicked in rather than just having slight swelling and being at high risk for it, then in Shit, In denial that might need a sleeve. But glad I shook that sudden excess off. Will continue to eat minimal again today. Eating but mostly plant like the dietician said whom I went to see months ago when my weight started creeping up from the tamoxifen. Now its 6.30am and time to do my lymph massage, an extended one as per instruction of The Lymph Lady. Aiming for 30 minutes.

Dire news from the lymph lady

Arrived at The Lymph Lady today feeling pretty miserable. I am tired of not feeling well, I said. Two of my fingers are slightly swollen and sore and my hand and arm are are. Plus when I got on the scale this morning I was up 0.9kg from yesterday. Now I know I ate a lot yesterday, went out for lunch and ate some garlic bread and some custard and so on. But 0.9kg in one day? That would make it 3kg I have gained in the last two months. Must be the damn tamoxifen. Then, as usual, she started measuring my arm. I don't want to add to your miserable day, she said, but..... And damn it all, but my arm was up everywhere, except for my wrist, by about half a cm. A sudden huge swelling, Is it the mosquito bite at my elbow? Is the 0.9kg due to water retention, from the Lymph/tamoxifen? Either way she declared I need to get a compression sleeve, with the hand/glove-like part, and wear it all day every day. Up the lymph massage - just did 45 min - plus where possible do it 3X a day. Get a friend to measure my arm and if not down by Wednesday, to get the sleeve which costs about R1500 she said, when I started crying, In the end it was decided I would leave everything till Thursday - after which she leaves the country for 3 weeks holiday in Kenya. Now starving myself hoping it will bring it down - it does help a lot - had a few steamed veggies for supper plus some roasted tomatoes - and praying, trying to imagine what it will be like to be disfigured with this sleeve. I cannot believe I will need it.

got a problem

Feeling really bad on the herceptin. It is day three since I had it and still feeling bad. If I stay still, it's better. If I move around, it's not. And then if I do stay still, don't feel 100%.
Phoned the oncology centre twice today. Wanted to know if it was ok if I pushed myself, that is, was going out tonight (theatre and a play) and was that ok or was it harmful? "Oh, you can be among people; it's not going to affect your immune system," I was told. Ja, I know that but is it wrong to push through this yucky feeling? "Giddy" said the nurse so they are clearly aware of this symptom. Cos I call it "dizzy".
If this persists, it's going to be a real problem. Going to affect all aspects of my life. And in two week's time, got to do my work and my boss's for a week. Going to be really difficult if I feel like this. Then what about exercise? That's what I phoned them about the second time. And a day after my next herceptin treatment, have booked to go to Cape Town. Cannot change the flight. Have to be there, for the unveiling of my mom's tombstone.
I feel like crying. This is like stepping back four months. Feel like shit. And on Monday was running around saying I feel wonderful, wonderful! Then I had the herceptin and now this. But at least I feel better than I felt on Tuesday. Feel like crawling under the duvet but need to do lymph massage first.
Oh, one thing is great. Found two women on the discussion board of the american cancer society who also had no primary tumour with breast cancer. One had a masectomy two weeks and the pathologists found no evidence of disease, what the website - or guess the Americans - call "NED".

lucky me

Felt really good today. Went to The Lymph Lady for the second time this week. Yesterday it went down. Today more went down and two measurements stayed the same. Referring here to my arm, the one that has been affected by the radiating of my lymph nodes.
So once again my body is doing me proud. Fighting back. Being strong and healthy. Now it must just continue.
Ok, I do have a cold. Well a blocked nose. Need to do that upside down yoga pose to make it better. Did it this morning and it helped. Now all blocked up again.
The radiation oncologist (funny, she never got a 'name' here on this blog) told me i would be susceptible to flu for the next three months. Guess this is part of it.
Oh and have pains in my chest, in my armpit and along my arm but The Lymph Lady says it's from the radiation and can continue for 6 - 8 months and if I phone the oncology centre, they will tell me. Been meaning to phone to confirm this but just soo sooo sooooo busy.
Been out every night and doing 25 minutes of lymph massage twice a day, plus going to biokinetics, plus therapy, plus The Lymph Lady and working my butt off, there has not been much free time.
Home tonight. A quiet night. But still need to do the lymph massage. Not sure I can face taking all my clothes off (well, upper body) to do that.But would never dream of not doing it. The Lymph Lady asked me today if i suffer from guilt. Cos I want to miss yoga - she told me it was excellent to deal with the side-effects of radiation - to go to a book talk by Damon Galgut at Boekehuis. His book The Impostor is up for the Sunday Times fiction award. I think it's brilliant read the Guardian review, and last year complained it was not on the short list. Well, its release did not fall into the right time period. So now gunning for it to win this year. And going to miss yoga for this one-off opportunity.

lymph circles

Did my lymph massage tonight and it calmed me down. Twenty circles with my hands in the crook of my right neck - I did 30 - then 20 - again I did 30 - circles under my right armpit, then in my left groin area (beside the hip bones) and then long sweeps from my left elbow along the back of the (affected)arm to the back of the shoulder. All done super slowly and super gently (apparently the lymph is just below the surface), with each circle at the pace of the count 10001 (one thousand and one).
The effect is one of instilling calmness.
Needed that cos spent much of the day in a state of panic. My arm felt heavy, my fingers were still tight/stiff and I found myself researching "breast cancer radiation lymphoedema" during work.
Then I phoned the Lymph Lady in a panic, thinking if i annoy her and she hates me, who cares. I asked her if there was anything else I could do to ensure I did not get lymphoedema, and did I need to do the arm exercises and if so, if i did them two, even three times a day, would it help?
I left a message and surprisingly she phoned back. No, there was nothing else I could do beyond being careful not to overdo it ( referring to carrying heavy things, not to squeeze a stress ball as some people would recommend. She asked about yoga. She said as I was so anxious, I should go get a compression bandage/whatever and I interrupted and said "no ways", I would wait until Tuesday when I see her. Quite honestly, going to buy a compression sleeve/bandage (think they are two different things and think it was the sleeve she recommended) would be like saying: I have lymphoedema. I said: "I don't want to get it (lymphoedema)" and she said "I know" but added there was nothing else I could do. Think she said there was nothing I could do; so if i get it, I get it or if I have it, I have it (my extrapolation).
My therapist said I should do visualisation. I am not sure it helps.....