Hi. This is my blog although I haven't posted in years. Just to say am alive and kicking, don't have the dreaded lymphedema I spent years trying to avoid and in fact, no longer have to do the daily exercises I kept up for so long.

Just came to my blog because wanted to send a post to my cousin, the one about what to say and not to say to someone who has been diagnosed with cancer. Have still to search for it but it is the only post I remember. 

Oy now it's even longer than a year that I haven't written

Am fine.
Just haven't written.
Main change is that I have gained weight and not lost it yet.
And I got retrenched.
Otherwise am ok.

I haven't posted for eight months

Oy. Sorry. Haven't written. But I am fine. Guess it's a good thing that cancer and this blog have largely not been in my thoughts. Been gallivanting:to New York, Lesotho, Nairobi, Cape Town about 3X and off to Lesotho again soon.
But someone mentioned this blog to me today (someone who lives in the Netherlands and whom I haven't seen in years)and I thought I should check in and say hello.
Will write again when have a spare moment.

Battled with the previous posting - technically

Anyway..so am set to go to New York. Washing all my winter clothing and getting ready...cannot wait. I am so lucky to have this wonderful opportunity although it is rather more pricey than I anticipated... Shows cost three to four times more than in London but NewYork here I come!

Off to visit New York

It's so long since I have written that I feel a bit embarrassed. I have been having a great time though and am happy to report that I had all my annual tests and am fine. I got myself into a total state over the chest x-ray and abdominal scan in particular, waiting to hear dreaded words such as "there is a little spot on your liver"but am all clear although was told to come back in 6 months for an ultra-sound on my boobs. Apparently they monitor you carefully in the 18 months after you have gone off tamoxifen...guess it's a high- risk time which is pretty scary. Also he said there is a lot of activity in my breasts but really, there is nothing I can do so am just plodding along and having fun. The radiologist (is that the name for the dr who does mammograms) says he is beginning to think that the cancer in my lymph was in fact the primary. The oncologist never said that but who knows. They never found the primary tumour.

Anyway, started piano lessons and been very busy. Loving playing the piano although battling quite a bit.. And now I am off to New York.
I am not a particular fan of the violin but always adored Itzchak Perlman and for a while have been googling where he is performing and hoping he will be in a European city I haven't visited. Well, about two months ago, after watching a YouTube video of him performing kletzmer (Eastern European gypsy music) I googled him again and guess what: he is performing at Carnegie Hall. and playing kletzmer with a Yiddish band.
After umming-and-aahing for a few weeks, I bought the best seats still available which in SA money is six times more than I have ever paid for a show, even knowing that they return policy is donating back to Carnegie. I do know one blogger I could have offered it to as a gift but if she didn't want it, kept saying "there are worse things I can do than donate to Carnegie Hall".
You see, at that point still had to have all my annual cancer tests.
Anyway, I am now scheduled to leave later this month. Spending 7 nights in NY, and seeing Placido Domingo in a MetOpera, Helen Mirren in The Audience, Ballet West at the famous Joyce Theatre, two fab musicals and pianist Murray Pirahou whom my piano teacher said h
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Sat with a friend having chemo today

Can hardly believe I haven't written anything since October. About a month ago I remembered this blog;think I was just preoccupied with other things but I am back now.
Today I sat with a friend having chemo for breast cancer. It was her first session. She lives out of town and her husband works in Joburg on Wednesdays so he dropped her off and she was there alone.
I sat there as she showed me pics on her phone of her beautiful three daughters aged between 5 and 10, and if watched her eyes go spacey from the Red Devil.
I have sat on those chairs in that very same room (4 chemo +17Herceotin treatments)and I have always said that oncology centre is not depressing, thinking it was the interior design and the well-trained and friendly staff;but today realized it is primarily the architecture. The treatment room has three walls which are predominantly glass and outside are tall trees. It is like being in a  garden as the trees sway in the wind. So tranquil.
Yet I found the experience of sitting with my friend freaked me out a little;brought back so many memories.
I will be back there when she has her second treatment.

Off on a quick holiday

Off to Cape Town for a week tomorrow morning and except for the packing which I need to do now (I am the world's worst packer!), I cannot wait. A good break and chance to relax although do have two work meetings but guess that was my choice and they are both over meals, so should be fun.
I am fine, totally delighted that my thyroid doc declared I was "extemely well". That was about two-three weeks ago and made me feel rather bouyant as he checks me, both physically and via blood tests, for almost everything under the sun and doubt many doctors give that kind of diagnosis to any patient and he is a particularly top doctor, a world renowened diabetes expert (although I see him for thyroid).
He offered to raise my thyroid meds to push me to the top end of normal as I was moaning about having gained 4kg this year. I declined, thinking it was manipulative and unneccessary but then had second thoughts and last week got the new script which I have still to take.
My stomach, well really my digestive system ie colon and small intestine, are probably worse than I have been for a while. Saw a second gastroenterologist for a second opinion which turned out to be a waste of time - and cost a bloody fortune which means I have now spent well over R2000 on two such doctor visits this month - and then saw my usual one again on Friday who has now prescribed some herbal drops - 20 into a little bit of water before/with meals. They taste ghastly and my stomach is still helleva bloated but let's see. At least the pain has gone (got very saw which he believes was the spinach I was eating to try to lose weight). "But it as cooked spinach!" I exclaimed. "And it's allowed on Fodmaps..." but he has now declared it verboten. He also declared that I do not have irritable bowel syndrome (IBS), just functional bloating.....Grrrr!
Anyway, let's see how these herbs go. Oh and he also suggested a dietician - until now I had been to the one who had helped me lose weight on tamoxifen but whose programme hadn't helped with the bloating mainly cos I don't think it is 100% linked to food plus difficult to work out which food and I think quantities play a role.....
This one he suggested has not returned my call yet. I hope to see her when I return to Joburg after my holiday.
Hope those of you reading this are ok.
Gillian

"Permission denied"

I used to enjoy reading Robyn Semanko's blog,  which was titled "I am 30 years old and I have breast cancer".

Today I went to her link:  http://robynsemanko.blogspot.com/ 
and was informed that only selected people could read it. Then I clicked onto something and was told "permission denied".

Anyone know how she is and why she made her blog private? Guess that is her right but wonder if she is ok.

What it's like to go off tamoxifen

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

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

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

Would appreciate some info.

I have finished my five years on tamoxifen

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

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.

Blah blah blah

My body  is letting me down. I am grateful that I do not have a terminal disease and that the doctor today did not send me home 'cos of that, saying he would have to go back to the drawing board (metaphorically, he never actually used those words) but I do realise that there appears to be nothing that can be done to improve my stomach.
I went on Resolor, which involved getting permission from the Medicine Controls Council here in South Africa, but it didn't work. I still have a bloated stomach. I have tried everything. Not eating foods high in fodmaps and that doesn't work. I have been on endless amounts of antibiotics and that doesn't work. Today he prescribed spasmo-canulase which doesn't even need a prescription. Quite a change from the resolor and rifaximin which also isn't registered in SA but can be obtained at a pharmacy in Bryanston.
Meanwhile my stomach is mostly bloated like a balloon - like the rifaximin at first, resolor had some improvement as it stopped the bloating immediately below the boobs but that didn't last. And I have flatulence and burp and have this burning feeling in my upper chest which the GI-doc today said is regurgitation.... and ...
But it doesn't stop there. Saw The Lymph Lady today and my arm is a f.. disaster/. Up by half a cm or 1cm in all of the six places she mentions.And I didn't even realise it and we don't know why.
Did consider the meds - Resolor - but it doesn't seem to have that effect although going to google it further.
Am in despair. I don't want lymphedema. I don't want to wear a sleeve. I need to get my stomach sorted. Urgent.

PS. I don't have to wear a sleeve yet. Am seeing The Lymph Lady again next week.

It's not like nothing has been happening....

I never thought I would be one of those who stopped writing their blog or became an erratic poster. My blog sustained me during those perplexing times of treatment and afterwards, as in after treatments, I felt an affinity with those I met online.
Then I went to London. Three months. I have never been away that long. Probably 'cos the lousy SA rand is useless.... the exchange rate is exorbitant and I am lucky to have travelled as much as I have. But apart from a one month fellowship at Duke University about 8-9 years ago, nothing of any significant duration.
This was also work. Hence I could do it. Although I did spend an astronomical fortune of my own money as I indulged in that glorious city, out every night, seeing shows and more shows, and so much dance, I became a member or whatever they call it of Sadler's Wells.
After I had been there for a while, I remembered: I have a blog. But I was too busy gallivanting to write.
And then I came home. And I felt I didn't want anybody to know about my life. I didn't want to talk about my private things. I didn't want to be exposed. And many people - well, two to be exact - have also suggested I write a different blog (they don't know about this one), that I write something relating to my work to promote myself more in the public domain. And I also think I should. I did try once, but found it hard to sustain. But now need to make more of an effort.
But that is not what I sat down to write tonight.
I want to talk about how this year has not yet come close to what I planned: how I was going to be frivolous and smile more and laugh more. Instead, I have been more anxious than ever.
Yeah, there are reasons for that. Not health ones luckily, well, some health ones like my bloated tummy and that endless saga, but luckily nothing serious. Although I did find what I thought was a muscular thing above my left boob and then the biokineticist said it wasn't, and then The Lymph Lady also said it wasn't lymph and I raced off to the oncologist on Wednesday, hours before I was leaving on holiday, and he said it was cartilage from my rib, and then today I had an ultrasound which confirmed I am ok.
And I have gained three kilograms. And I did go on tamoplex, the generic of Kessar which is the tamoxifen I take, because my usual one was temporarily unavailable, and then in the second month I noticed I was sweating unbelievably, as in the back of my neck being soaked and my driving home after 7pm on a not-very-hot night with the aircon turned on higher than ever before, and then the next morning taking my pills and looking at the damn pill and then realising I am having the worst reaction possible to the tamoxifen and then phoning the pharmacy and luckily Kessar was back in stock and they delivered it to my work later that day and suddenly I no longer have such hot flushes and something has lifted (think I was depressed) but I am still fat. Well, fatter. Always been fat.
Which sounds so complacent. But that's for another time.....
So here I am. Monday night and at home and quickly catching up on some work stuff and reading a lekker book which I will finish later (Zoe Wicomb's October) and just generally being ok.
And I will try to remember to smile more. Now giggly. That would be ideal.
And on Wednesday it is the general elections here in South Africa but I have to work although will vote too.
Hope you're all ok out there. 

Is generic tamoxifen the same?

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

The five year myth

Happy to report that I saw my oncologist, The tango man, this week and I am fine. This followed a series of tests the week before: mammogram and ultra-sound, blood tests, chest x-ray and abdominal scan. I found all the tests and the visit to the oncologist very nerve- wracking. I adore my oncologist but can relax only after he has told me the results of my blood tests and examined me. Then for hours I feel drained from the experience.
Anyway, it is now five years since I was diagnosed. I thought five years was a landmark. I never asked for a prognosis and still don't want one but everything I have read points to five years being significant.
The Tango man said no. The more years that pass and your cancer doesn't return, the better, but there is no special significance of five years.
I had considered having a party: at home or a restaurant was one dilemma. Another was whether it was selfish to rather go on holiday. Now I am spared all this. Lol!
Have to see The tango man again in 6 months. Then, if all ok - have to have blood tests - I go off tamoxifen and then see him again only in a year.
Other than this. Am fine but my weight is up and seeing the dietician on Monday.

Back on my blog

I went to London and almost forgot about my blog. Was so busy and simply adored all the shows and the shopping and the buzz and just living there for three months. Tomorrow will have been back for one month. My weight is up 2 to 2.5kg and my stomach problems (the small intestine bacterial overgrowth) has been appalling since my return but otherwise am well -I hope. My annual battery of tests coming up next month.

Off to London in three days

Think I am giving up salads. Went out for lunch today. Had grilled fishcakes which came with salad and stomach ballooned.
Then tonight had oat crackers with parmesan and brie cheese. And a naartjie. And feel sooooo much better. The salads don't work for me now. And decided tonight: so what if I love salads. I will just learn to love something else.
Leaving for London in two days' time. Quite apprehensive; also pretty excited. Going for work. For three months.
Will write from there.
Oh and also got diagnosed with e-coli last week. Second time in a short time and pretty sure that is what I had after that dreaded hysterectomy too. Dunno why. But think it is sorted now. Took meds. Ciprobay.
Also apprehensive re my arm swelling on the long distance flight. Have booked lymph appointment in London for Friday......one can do only what one can do.
Was thinking how anxious I have been in the last six months. The hysterectomy which I should never have had and now the stomach hassles which often get me down... Oh, had one day this week when my stomach was flat. No idea why. But went out in a skin tight dress with ruffles and felt like a million dollars!!!! By the next morning was bloated again although what I ate at the function that night was all on the fodmaps list of what is ok to eat.....
All a puzzle.

Off to London for three months

I almost forgot about my blog. Really. Been so wrapped up in my little world. Hassles here, hassles there... one of those being my stomach with its crazy bloating and pain.
Saw my thyroid doctor today and he said: "Why you not eating this, not eating that, if it is not helping?" Good point. So insisted we go out for curry tonight - been living on rice and raw salmon and yet my stomach sticks out a mile.
Anyway, am throwing away the homeopathic pills I have been taking - L-Glutamine, wild origano and pancreatin  (ja I even resorted to homeopathic which I mostly find annoying)  - and am now praying the pills the doctor prescribed today will help. Look, he is not a gastroenterologist, rather a world-renowned endocronologist (really a diabetes expert) whom I adore.. but let's see.
And can you believe it: my gastro guy is overseas and due back about a week after I head off for London. So today's pills better be the miracle I need.
Kinda bowled over by it all but scheduled to go work at a leading British equivalent (sort of)/ related company to the one I now work for, in a field I am passionate about. My company is sending me for three months. So likely to be posting from London soon.
Oh and saw my oncologist last week and I am fine!!!

Bloggers inspire me

Have met the most amazing people on the internet since I got cancer. They inspire me. They have oomph and voomah and get on with things, no matter the circumstances. They rejuvenate me, make me bristle with energy and, through their example, help me feel better, make me realise I am not alone.
Three blogs hit me tonight.

Jill Cohen is phenomenal. She does so much, from going to the synagogue to going to dinner parties to hosting dinner parties to singing in an eastern European folk choir Dunava - all while having on-going treatment for metastatic cancer. Be touched by her enthusiasm and zest for life in Dancing with Cancer.

Joanna plays tennis. She loves tennis. She played it through chemo and she plays it now, even though she has on-going Herceptin treatments. Read her story in Life has its Ups & Downs.

Julie Goodale is my hero. She sets herself new challenges, each more adventurous than the other. A classical musician, she pushes herself to the limit physically, whether it is climbing mountains, to running ultra-marathons to running across America to raise funds for cancer in the Million Dollar Marathon. Hold your breath and see if you can keep pace with Fitness for Survivors.

And they are just some of those whom I have met, none in person, on the internet.

Distended tummy

Have had a particularly bad week regarding bloating. Saw the original gastroenterologist on Monday - the locum I saw the week before was clueless and then didn't contact me when he was supposed to - and he gave me new pills, natural ones, called Canulase.
They haven't helped at all. So I phoned him back on Friday, was told he would phone me in the afternoon but he didn't. Fabulous...
Last night I went out for dinner. For the first hour just drank water. The gastro had told me what I eat must be making a difference so I was being so careful, keeping to the fodmaps. Well, while on water my stomach just blew up. Fabulous...
The ate two teeny pieces of chicken and some rice. That's it. Was a dinner party and left all the salad, the veggies, the puddings, the sweets - which I love  - served after dinner.....no alcohol....
By the time I left I felt nauseous 'cos my tummy was so distended.
I felt irritable and in despair. Have spent today in bed but have enjoyed i
Butt. Just taken the day off but will probably go out tonight.
Now (post more internet reading on  fodmaps - the Wikipedia guide) it appears that the culprits could be the guavas I have been eating - they are just my favourite fruit - and the cough mixture I have had for my cold.
Fabulous...
From tomorrow, well, from now, won't eat any fruit beyond bananas, kiwi, grapes, granadillas (passion fruit) and whatever else fodmaps says I can eat. Oh citrus is ok. Else I might only eat bananas and see if that improves. This is hard. Makes me sneer and grimace 'cos I love fruit.   
But the gastro said I must eliminate stuff and then re-introduce things one at a time.
So far I have not found food to be making a difference.
Meanwhile, am getting thinner although just ate such a huge chunk of camembert - allowed on fodmaps - that I wonder. Want to go out for curry tonight but will eat chicken vindaloo and allowed chilli and vinegar which the dish contains and rice is also fine.
Gave up bread yesterday - was eating one slice of 100% rye for breakfast but it is part of my elimination - and need to buy spelt bread. The local Spar used to stock it but didn't have it when I went the other day and hopefully the health store in Emmerentia (can never remember its name) is open tomorrow (Sunday) as I sure they will have it.
Last night I decided I was cursed. This huge bloated tummy that just grows and grows. But I have to deal with it. Have to resolve it and if doctors cannot do it, I will have to experiment until I do.