Friday, March 29, 2013

Friends and illness

It's always fascinating how friends, colleagues and acquaintances react when you are ill.
This time the two people who I thought would pop in, no matter how briefly, seem unable to, as if they want to stay away and avoid being contaminated... guess I am angry but still.... not all the time...
And it has been some colleagues and others who have been remarkable.
I was just thinking the other day that the best thing to do when someone is ill/indisposed is to contact them and say: " I am bringing lunch tomorrow. Doesn't matter if you don't eat it then - whenever - what would you like?" or "I am at Woolworths/this deli/bakery/whatever and then popping into you; what would you like?"
And that is exactly what someone did. "I am going to Woolworths later. What would you like?" And so I got julienned beetroot (unsurprisingly, they didn't have the Norwegian salmon or tuna and cucumber mousse I also wanted) but I was able to get what I wanted and I paid her for it. What a touching thing to do.
My first response had been (in my head): pick me up and I will do my own shopping then, but of course I cannot carry a basket or push a trolley so cannot shop on my own.
Did online grocery shopping (the Easter weekend is a crappy time to go to the shops here, too busy... and some shelves deserted from what I have heard) but it was one hell of a pahlava. The only online shopping that works in South Africa is shops that exist purely online, eg Yuppie Chef and, but guess the bulk of the groceries did arrive even if it took endless calls and screaming and angry tweets before the order happened... anyway....
Am badly constipated again today so eating everything in sight, hoping it will make me go to the toilet but ....
Anyway, guess friends cannot cope with illness but do appreciate the SMSes. The two I thought would visit, well, the one has not even bothered to SMS and I phoned for a chat...
Ja well no fine, as they say in these parts......

Thursday, March 28, 2013

Thanks to unwashed prunes

Today has been my best day since my hysterectomy last Monday (two Mondays ago).

I have suffered from intense constipation, unlike anything I have ever known, and after two lots of Movicol yesterday and one more dose this morning, sat down in sheer desperation with about a third of a punnet of unwashed prunes and ate them.

It worked. A few days ago I had about eight and it didn't work. This time I had the runs which was better than the intense pain I have been under.

In fact, today has been my best day post-hysterectomy.

Last night I got into a panic. I kept thinking: I am being so negative that I am not going to heal and if I am not careful, will end up back in hospital.

So trying....

Oh, and don't have results of urine test to see if I have a bladder infection. The lab is closed tomorrow - Good Friday - so doubt will hear any more re it till Tuesday.

I have to get better. This has been agony. But unlike the cancer treatment I had, during which I just gritted my teeth and did what I could in order to get better, this operation has been the most devastating physical experience of my life.

I am still waiting for the report, so still don't understand how the fibroid could cause "negative cells" and what they means but fakking hell, this has been one hell of a journey and am still devastated how I have been so struck down - despite having no cancer or pre-cancer.

But I need to laugh and smile and be happy - so I can get better.

Wednesday, March 27, 2013

A few

* The gynae and I are now talking, thank god, 'cos after very bad constipation post hysterectomy (a problem which might not yet have been solved in fact), am now onto my second post-hysterectomy problem: a potential bladder infection.
He sent me for a urine test today and phoned a series of people to take me and luckily solved the problem and got there and back pretty quickly, with one friend taking and another fetching. I spent R450 on taxis the other day, and that was just two one-way trips, and this depot was just down the road. We have tuk-tuks in Joburg now but they are too bumpy and not the best for post-abdominal surgery I don't think.

*Am in intense pain. Just taken some more pain killers. Oh that was another good thing re gynae talking to me. I needed more painkillers. Have hardly been taking them. But now bugger that and taking them 2 to 3 times a day.

* The worse I feel, the crosser I become re this. Re having had the op. I am ok and can deal with it when ok but when have pain like this, just see red... to use a blady cliche.

* I do not think I am ready to do any work from home. Work was prepared to set up the work system at my home - I asked  - but really, not well enough to deal with people, think coherently, do whatever. I still have to inform them. The Yoga Man told me not to worry about this till next week.

* I know I just did online shopping and tweeted re it so work will probably think am ok to work but I cannot. I need to sort myself out.

Hope I don't have a bladder infection. Feel like chopping my head off. Oh, by the way, The Yoga Man says I was much sicker when I had chemo so my previous post is inaccurate.

And the reason the doctor hasn't sent me the bill - so I can send it to the medical aid (I asked for it to be made accurate and the "maligant..." to be removed) - (I have already paid it)  - and the reason he hasn't sent me the report is that it is at his home.

Feel like having a few drinks but don't think they will go well with the painkillers.

Feel like screaming. A little.


Tuesday, March 26, 2013

Don't have cancer yet sicker now than when did have cancer treatment

I am fukked. Feel awful and was just commenting how when I did have cancer, I wasn't nearly as ill from the treatment as I am now, when I don't have cancer. All because of the hysterectomy.

Monday, March 25, 2013

just had a screaming fight with my gynae

Not proud of the way I behaved but just had a screaming, sobbing fight with my gynae on the phone as he read out a letter to accompany my hysterectomy report.
He wanted an apology for my behaviour. I didn't apologise. Think he put the phone down.
He said he didn't think he wanted to see me again.
I told him that I had told him when I left hospital that I felt he had done what was best.
He feels hysterectomy was necessary.
I feel it wasn't.
I know I signed an agreement to it.
I told him I had made the wrong decision.
Now cannot get through to him and he doesn't operate via email.

Saturday, March 23, 2013

No cancer; just a fibroid but had hysterectomy

I had the hysterectomy on Monday morning. Have not had the written report yet but my gynae had had a conversation with the pathologist who told him there was no malignancy; just a fibroid.
I feel a bit shellshocked. I was so sure I was doing the right thing. My gynae had told me: "You are playing with fire". He really thought I how cancer or pre-cancerous cells. My history of breast cancer and being on tamoxifen had pointed him and everyone else in that direction. Now he has told me: "The fibroid was causing negative cells".
On Thursday the gynae told me: "Five doctors approved of this procedure".
I exploded.
"Five doctors? Who?"
I then pointed out that the GP had agreed with him but that I would never speak to him again cos he told he I had endometrial cancer and got it all wrong. And that was approving of the op; that was agreed with the gynae when he informed him.
My oncologist spoke to me before I saw the initial pathologist report. Once I found out the report suggested a D & C only, not a hysterectomy, the oncologist did not return any of the three messages I had left him. I think he felt he had spoken to me. And I didn't have cancer; why did he need to speak to me?
The pathologist who did the initial report had told me it was drastic, he just needed more tissue but recommended I do it.
He too suspected cancer.
I believe the gynae thought he was doing the best thing.
Oh and the 2nd opinion doctor, the head of what-what at Wits University, just threw the textbook at me, suggesting two things (all indicating cancer) that had they been an issue when I was diagnosed four years ago, the oncologist would have dealt with them.
So really it was the gynae.
Now I have had it. And I wonder why.
The Yoga Man, my dear friend, says "six weeks isn't so long, you'll be fine" but I feel like someone who had a vague threat of breast cancer in the family and had a double masectomy (I know many in America do that; I don't).
I feel the drastic surgery I had was unnecessary. The night before the procedure, on Sunday night, at 10pm, I had second thoughts. Let me change it to a D &C , I thought. Let them tell me it is cancerous or pre-cancerous.... and then.
This is radical.
Anyway. I tried to post my blog from my phone but need to check that facility; it didn't work from hospital.
Will be home for about a month. Lots of time to write, I guess.

Sunday, March 17, 2013

My hysterectomy is tomorrow morning

I am having a hysterectomy tomorrow morning but not so sure I am doing the right thing. I think I should have first checked to see if the cells were pre-cancerous and if they were, then do the hysterectomy.
I know I did discuss this with my gynae but really, I do feel that it is a bit drastic.
Why did he feel it was necessary? He is sooo respected and I supposed I cannot keep on having 'bad results' from the endometrial biopsies, the Z-samplers, but last time (ok, the results were a bit better than they are now), I had the D&C requested, and there was nothing wrong.
Why now a hysterectomy?

Oh well.......

Pray for me.

Wednesday, March 13, 2013

Going ahead with hysterectomy on Monday

After an exhausting day -  which involved much angst and questioning (interrogating really) of both my gynae and to a lesser extent the 2nd Opinion Doctor (whom I really didn't like as he threw the textbook at me which didn't really impress me at all), and also a long chat to the pathologist whom I adored (thanks to my gynae for organising that) - i decided to go ahead with the total hysterectomy on Monday.
Will discuss this in my detail later but need to do lymph massage and also need to wake up early as was out the office for so long today (about 4 hours at the hospital argueing and organising and....)
Anyway, about 95% certain I have made the right choice, which wasn't an easy decision.
Dunno why but when I get sick, it is never straightforward. How to treat my breast cancer when there wasn't a primary tumour (the pathologist told me that happens in 2% of cases) presented me with conflicting suggestions and treatments. And now this. How to deal with and treat a case of markedly atypical endometrial cells suspected of endometrial neoplasia (and the differing interpretations of what neoplasia means) when you are on tamoxifen has been a most perplexing dilemma.
I hope to God I have made the right decision but I do know: had I chosen a D&C as suggested by the pathologist and had it been fine, not sure I could have sat out another six months waiting for an endometrial biopsy.....

Monday, March 11, 2013

Apologies for my earlier maudlin post..

...  but I am not deleting it as want to document how I felt.

Am feeling much better now.

But looking for my previous pathologist's report to check the progression/regression.

Gynae vs pathologist: hysterectomy?

Looking at my description of myself below my photo on this blog, I realise it is all out of date.
Instead of the carefree picture I paint, one which was certainly true at the time, I am now an angst-ridden wreck. I used to worry about my arm because I have borderline lymphedema but now I have a bigger problem, a dilemma really.
I am on tamoxifen and have always known it can cause endometrial cancer but felt the benefits in helping prevent a recurrence of breast cancer were better than the small risk. And, I was informed, it is a slow-growing cancer so we can monitor it carefully.
Sure, now about four years since I have been on tamoxifen, my six-monthly endometrial biopsy, known as a Z-sampler, came back with atypical cells (SEE PATHOLOGIST'S REPORT BELOW). My gynaecologist or gynae (Americans who are reading this, you call them obstetrician-gynecologists, or ob-gyns) phoned me on Friday morning to say that last Tuesday's test showed I had to have a hyterectomy, and my oncologist, The Tango Man, agreed.
Well. Today finally got to speak to The Tango Man who told me there were cells that were suspect but many more that weren't but that the gynae felt it was best to just have a hysterectomy and sort it all out.
However, when I arrived at the gynae today to discuss it further and book my operation for Monday, was almost horrified to discover that the pathologist's report recommended a formal D&C. Not a mention of a hyterectomy.
Suddenly I feel less sure. He says the pathologist didn't know my full history, that the atypical cells are suspect - and true, The Tango Man did say to me that the hysterectomy could find early-stage cancer - and that I could end up with a tumour and then I would be in trouble.
"You are playing with fire," he warned.
But he also suggested getting a second opinion, either from someone of my choice (which I don't have, as he is my gynaecologist of choice) or from the head of obstectrics and gynaecology at Wits University, who is also a cancer expert.
So now this is the situation:
I have booked the hysterectomy for Monday;
I am seeing my gynae on Wednesday midday; and
all my reports etc have been sent to this Wits prof, and I have to phone him on Wednesday at 9.15.
And I am in a hyperventilating state.
I wish my father were alive so I could ask him (he was a doctor). My mother too, for motherly advice. I feel a mess. 

Ag, just spoke to my one sister instead. She made me feel better. Made me feel I am doing the right thing. She also thinks a hysterectomy seems harsh.
"There are scattered groups of markedly atypical endometrial cells present whcih are suspect for underlying endometrial neoplasia....
There are, however, also numerous groups of relatovely normal appearing endometrial cells in the background.
A formal D&C is recommended for further evaluation of the patient.
Endometrial smear:
1. Markedly atypical endometrial cells present.
2. Endometrial biopsy recommended.

Sunday, March 10, 2013

I have to have a hysterectomy

Thanks to tamoxifen and what is clearly my bad luck, I have developed atypical cells in the endometrial lining and have to have a hysterectomy within a month.
Getting more info tomorrow when I see the gynaecologist but had a Z-sampler test (scraping of uterus) on Tuesday and was phoned with that result on Friday.
I have been having the Z-sampler every six months since I went onto tamoxifen. Am pretty devastated and scared and unhappy but want to do it as soon as possible so can start the recovery process. Hoping to have it done next Monday.