Thursday, April 25, 2013

What the psychologist said.... Subtitle: Possible pitfalls when getting a 2nd opinion

I went to see a psychologist yesterday. I ended up seeing the same one I saw when my dad died and I found myself saying the same thing I am sure I said then: "He is a sage". I like him.
He said some interesting things. Essentially he seems to agree with The Lymph Lady that I am not healing from the hysterectomy because I am holding onto the anger. He said I am like a baby whose bottle has been taken away and who keeps crying for it.
He also said because my identity is wound up (he used different words, not "identity") with doing research and then making informed decisions, I cannot believe I made an error **, that I am not invincible.
He also said the doctor seems arrogant and he is surprised the doctor did not say to me: "We are taking an extreme approach...". I don't think the doctor believed that.
On Monday The Sage is going to hypnotise me, and can you believe it, I cannot remember why. I am both excited and a little apprehensive.
I just wish I felt ok. As I am writing this, am feeling horrible pains. And last night I was laughing and happy and then my stomach blew up like a balloon and then I panicked, went online to determine more about "diagnostic and preventative hysterectomies" and then got anxious that I will never get better, never get to be how I was before.
I am scheduled to go back to work on Monday. I am seeing The Sage at lunchtime. On Tuesday night I plan to go to the theatre. Will decide on Monday evening if I am well enough.
One brightness - but also slight trepidation - on the horizon is that I am going away tomorrow, for two nights. To a five-star hotel in Umhlanga, Durban area.....
When the doctor and I were still on good terms, ie prior op, he suggested I go away to recuperate. I checked this again with him post-op, while in hospital. It is a one-hour flight. I don't have to leave the hotel except to go for walks on the beachfront right outside, or to have a meal/drinks at the other five-star hotel next door which, I was laughing at the psychologist about yesterday, now seems a possible better option than the one I have chosen - all part of my new insecurity, vulnerability, feeling crushed, whatever you wanna call it....
Should be fun though. Just hope I will be ok at least 90% of every day.

PS: Just remembered. The Sage said the doctor left me no choice, saying I was playing with fire.

**My error:
My main error in this whole process was the 2nd opinion. The gynae had told me during one of two pre-op consultations in the week before the op (I thought I was a real smart alec) that I needed to do it within a month. Also, he would be away from the 22nd. And he couldn't do the 8th. And he operates only on Mondays (unless it is an emergency).
He said I was welcome to get a 2nd opinion. (This was after I saw the pathologist report recommended only a D&C). Did I want to get my own, or did I want him to suggest someone?
I thought: where am I going to get a 2nd opinion from a gynaecologist so quickly, who would I go to.... and so, STUPIDLY, said: "Ok, you suggest someone". When he suggested the head of the gynaecology department at a leading university, it seemed fine. And he only sees patients on Fridays, said my doctor, so would a phone consultation be ok?  I said yes.
Now, even writing this, I feel crazy. What an arsehole I was. The only thing in my favour is that when I did speak to 2nd Opinion Gynae, I let him know I was unimpressed with what he said: that I got breast cancer so young (huh?) that I could have the gene and therefore it was a good idea to take out my ovaries too. I told him that if those issues were relevant to me, they would have been brought up by The Tango Man four years ago when I had cancer. I then put down the phone and told my gynae in disgust: "He threw the textbook at me. A waste of time".
So why did I persist with the severe and harsh approach?
I know that even if I had got an independent 2nd opinion (my gynae had conferred with 2nd Opinion Gynae and given him my reports so it wasn't independent), and it was contrary to my doctor, I would have wanted a 3rd opinion. And why not? Why didn't I have the courage to say: "I am taking off work until I resolve this?"
It was the "you are playing with fire" that got to me.
As it happened, I wasn't.
Worse than that, I am in agony. I have not had a single day since my hysterectomy on March 18 that I have been fine for the entire day and night. Last night my entire stomach blew up like a balloon....think I wrote that already.....I just want to get better now....but I guess I also want to understand this.....

Monday, April 22, 2013

Definately need cushioning

Just came back from The Lymph Lady and, as she is in the medical field and incidentally also had a hysterectomy, it was so nice to speak to her. She said I am very angry and emotionally not ok - well, she put it differently, something how it is affected me emotionally. She said when she had a hysterectomy, although she got an infection which delayed healing, by 5-6 weeks she was fine. As in exactly how she had been before. She reckons my anger has delayed my healing. This has been worrying me.
The psychologist I phoned on Saturday has not yet phoned me back. Maybe she does all that sort of admin stuff in the evening.
I need to get better but I cannot be happy about this operation. It is so radical. I keep wondering now: why, when my D&C result last year came back as perfect, did he not question that something else might have been causing the irregular cells?
You see, I am going around in circles. And that doesn't lead to progress.
PS: My arm was fine. She says that is because I am not moving around.

Sunday, April 21, 2013

Pretending to be ok

When I arrived at the doctor for my post-hysterectomy check-up on Friday, the doctor asked if I had driven there. He seemed surprised when I said I hadn't. He had said I could drive from the 18th but I was being extra cautious; as I was seeing him on the 19th, thought I would wait.
It took me till today to drive. Had to go to my friend's daughter's 4th birthday party and as it was about a five minute drive down the road on a quiet weekend day, seemed a good option.
Felt a bit weird. Slightly uncomfortable. And I am short so reaching up to shut the boot ("trunk" for you Americans) hurt a little.
Felt a bit better coming home but then I was sooooo relieved to be going home that it might have aided the experience.
After two hours at the party I wanted to leave. Started feeling awful. Then decided: if I am going to be back at work in a week, better get used to being out. So I stayed. Nightmare.
Was soooo happy to be back home. Found my stomach hurt at the party and I didn't want to sit. Much preferred being home.
Tomorrow am driving to Rosebank, a little further away, to see The Lymph Lady. Then have another appointment in the afternoon.
A former neighbour, Mike, has come to visit from Paris. He says full recovery takes four months. My gynae said he had a patient who ran the Comrades after two  months.
If my normal is 10, then I am on 5 and a half. Scary. Sore. Horrifying.

Friday, April 19, 2013

Was so unimpressed with gynaecologist today OR The patient from hell?

I had my check-up with the gynaecologist today.
A little less than six weeks because he is going away. I didn't wish him well.
Look the wound has healed wonderfully. I haven't looked but can feel.
I think he was pleased with his handiwork.
I still have an infection. Since I last wrote on this blog, was pretty unimpressed - especially when The Yoga Man sounded surprised about it - when I told his receptionist my symptoms and he sent a script.
I told him today I wasn't happy using a cortisone cream** so he prescribed a baby bum cream - and we both smiled about it - which contains zinc oxide and so is apparently good. He said I had a discharge. I am not aware of that; just aware of discomfort: burning,and general discomfort (the itchiness seems to have stopped).
I was very well behaved today. Discussed my dizziness if I moved around like walking into the clinic and up the flights of stairs to his office. He said it was good I was doing the stairs. I said I was doing them three days after the operation (those very stairs but I guess now doing them easier but felt dizzy).
He said my blood pressure was low. I said 115 over 70 was no lower than usual. (In fact when I saw The Tango Man last week it was 110 over 70).
He prescribed a tonic and I was placed the pharmacy there didn't have the full dose 'cos not sure will take it beyond a few days.
I then, very calmly, mentioned that I was still upset that I had had a hysterectomy because of a very small fibroid. And this is what so unimpressed me. He didn't respond. He didn't even look at me. I didn't pursue it.
He told me to come back in a year. He had previously said six months after the op. Guess that is the end of him and me.
I left very very upset. I felt all alone.
I have this major op and there is nobody to give me advice re getting back to fitness - guess that it what my biokineticist is and I didn't ask him the best exercises post hysterectomy - but I still felt like I could burst into tears. It is now quite a few hours since I left there.

Am I the patient from hell? Maybe...

** My one brother-in-law and my one friend have said they would hate to have me as a patient. Perhaps. But if I do not have a major, pressing problem and have been prescribed a cortisone product, can I not say I would prefer something else? I have taken cortisone tabs about three times for reasons I cannot even remember but those times it was necessary.
Maybe I am the patient-from-hell. But I am not going to kiss no doctor's feet because I now "do not need to worry about the tamoxifen". I didn't ask him to put my mind at rest. There was a 3% chance of my getting endometrial cancer and yes, I am thrilled I do not have cancer, and yes, I hated those Z-sampler or endometrial biopsies but I had them religiously every six months regardless, and anyway I was nowhere near getting endometrial cancer. Maybe he feels this was the only way to find out..... then he should have said it. But so be it. From The Patient From Hell.

Sunday, April 14, 2013

Happy to report that I seem to be over the worst

It is now just over 3 weeks since I had a hysterectomy.

And at last I feel that I am making some progress.

I can now go out once a day somewhere eg shopping centre or restaurant for a short while. Then I do get dizzy - think it must be blood pressure? - but if I eat or drink something am ok.

Then I do my 30 min walk a day although if my outing is extensive like Friday's (two hours at the beautician having a mani, pedi and facial; quick clothing shop at one store; lunch; bookshop and a food shop during which my friend pushed the trolley) than leave out the walk.

 Then at night the pain starts. Last night was hit by such sharp spasms that I cried out but I took two painkillers, like I do every evening, and then it zonked me out so much I wasn't even able to do my lumph massage.

And despite having lost weight initially, I was up 0.3kg today from my usual lowest, so reckon life is back to normal if I am hassling about my weight!

Saw the oncologist, The Tango Man, the other day. He was very sweet. My sister laughed when I said that. "Sweet? How can he be sweet? He is the one who chased So-and-So out his rooms for being so vain and ..."

Look, I adore The Tango Man. He saved my life with the breast cancer and even though he has shouted at me a few times ("You weren't thin when you walked in here! You weighed XXX" and "Who said doing more exercise would be good for you?"), he is wonderful.

I told him I was very upset about having had the op, that it seemed totally unnecesarry and that I was cross with myself about it all, and he seemed a bit surprised but was very nice about it all. I think he was taken aback because usually I am so gung-ho (I have been a bit concerned that my negative attitude might affect my healing) but he told me not to be so harsh on my myself, and went into the horrors of if I had had endometrial cancer - radiation on bowel, bladder etc....

He said 3% of women on tamoxifen get endometrial cancer and I remarked rather cynically that I wasn't part of that statistic yet had had a hysterectomy and this made it very difficult to deal with the pain and how my life had come to a complete standstill (ok, temporarily but still for a long time).

"Are you a gambler?" he said with a smile at the beginning of the  appointment after I had told him I hadn't been so unhappy in years, pointing out the "some markedly atypical cells" from the endometrial biopsy or Z-sampler. But I still feel the gynae could have checked to see if I had a fibroid, considering it appears they can cause atypical cells. I still believe the doctors panicked and this could have been avoided but when I am sitting at home now, without pain, it's cope-able. Later, when I get dizzy or am in agony, I will feel sad again....

Oh and the attitude of my friends has become quite intriguing. They are now competing amongst themselves to get brownie points to help me. Was very grateful that a friend took me to The Tango Man and waited for me - he always sees me early and is so efficient - and she fetched me from beautician and took me shopping and then home - I bought her lunch and gave her a gift was so grateful, but she had put out when another had come to visit and she glaringly hadn't. And now the other is asking to help me with lifts etc next week and another offered to bring beetroot from her garden (and when I said yes, would love that, have not heard a word) and The Yoga Man says "Aah, they are frenemies with each other".

But still one close friend, or should I say previously close friend, has not bothered to visit. Has texted and phoned a few times but no visit and other close friends have been rather absent. Although my best friends from London and New York have phoned a few times and it has been great chatting to them.

Just felt I could no longer moan friends have been absent.

And so I am smiling. And going to have yet another cup of Pukka 3  Ginger tea. Delicious!

Tuesday, April 9, 2013

My first day without painkillers

I cannot be sure will get through today without taking two of those little green pills, but yesterday managed an entire day without taking any.
Feel so much better. Not only does that mean the pain was less intense but also I feel so much more lucid.
Beginning to see the light, a sense of normality on the horizon.
Work was supposed to install the work system. They didn't and now the person I was dealing with re that has gone on leave.
Maybe that is a blessing in disguise. Am going to be doing a little bit - have contacted some contributors to deal with me again and have already sent through some arts stuff - but at least I can continue relaxing, walking and getting better. Have more hope of that now.
Seeing The Tango Man tomorrow. Curious to hear what he has to say.

Thursday, April 4, 2013

painless for just a few hours

What a crazy day. Was in agony last night and felt I had made no progress since my hyterectomy.
Then went to bed. Woke up at about 4 then 5am. Back was in agony for second night or so in a row. My lower back. Don't know what it is. On The Yoga Man's suggestion slept with a soft pillow there but work up this morning with visions of getting to the gynae's office first thing and sitting there until he saw me.
Then did my lymph massage while in agony, then got up out of bed, and huddled in the lounge, covered with blankets, moaning that I was tired but at least the pain was gone.
And then the pain was really gone. Vanished! Felt fantastic so went out for lunch with my sister (it has been on hold depending on how I was feeling) but just made it threw lunch, and the chemist for more constipation supplies, when felt awful. Dizzy. Stomach cramping.
Then came back and ate spare ribs (my occasional indulgence which I had bought the other day) as sheer compulsive eating.
Not sure if will finish the rest. Might end up throwing them away.
Now been sitting here wondering if I will ever get better. Checked the notes I took from the dr in hospital. You will feel exhausted. Rest. Do some moderate walking. Nothing whatsoever about pain.
Not sure I can carry on like this. Oh, that sounds so blady dramatic but I cannot really go out.
And have arranged for the work system to be brought in here - think it's arriving tomorrow - but going to start off doing very very little. Cannot work if only feel ok for part of the day and the rest of the time I am in agony and despair.
Now been wondering if it was pre-cancerous. Maybe the endometrial lining was thicker - is that enough to do a hysterectomy?  Maybe the fibroid wasn't that benign? Oh who knows 'cos still don't have written report. But scheduled to see The Tango Man on Wednesday - his office said that two weeks or so after the op need to see him - so guess he will fill me in. Was going to cancel - well, tried to phone to see if he really did want to see me now - but then decided I need to know what the hell is going on.
Fak, I hate being sore. Feel like they made me sick.

Wednesday, April 3, 2013

Over the shellshock

Haven't written for a few days 'cos am just digesting everything. Thanks to those who have commented; appreciate your messages of support immensely.
I am over the worst. The anger has dissipated although far from the "so glad it wasn't cancer" brigade. The constipation has been overcome although not 100% resolved and still on Movicol but just once a day. Got the test results from last week and do have an infection - mix of bladder and others - and so am on antibiotics. Am a little sore - think Monday's 45 min walk up steep inclines for some of it was maybe a bit much - but am taking it easy. However, am so used to exercising that now did about 20 minutes walking rather than the 10 I set out to do but it is horrifying how out of breath I get on a short walk.
Anyway, have asked work to set up their system at home so can start doing some work. They are checking out whether they can (despite early assurances that they should be able to). The problem is that my laptop doesn't operate on Windows but on Linux and the work system is Windows.
Do feel pretty bad that the big boss is doing my work as well as hers. Not sure how she is managing but feel ready to start doing some. Not committing myself to a full day's work; just a little. Maybe half of it for now.
The big boss is a mensch. Contacted me last night to find out how I was (I had CC-ed her an email earlier in the day requesting the work system). She was very supportive and very nice. Impressed. (She is new and this was surely the last thing she needed - to have someone in a key position out the office for so long.)

Anyway, life is going on. And very chuffed that someone I recommended for a job, clinched it! I knew from day one when he arrived as an intern a few years ago that he was going to make it big and told him: "If you ever need a referee, come to me". And it did. As The Yoga Man says: "In a few years' time he will be back - in management!" Wouldn't be at all surprised.

I suppose I need to feel I have value. That I can contribute. Can "make a difference" as my sister always says.

The recent events have thrown me somewhat. That my judgment was so wrong. That I thought I had thought it through, but hadn't.

Anyway I look forward to the day when I am well enough to go back to gym, yoga and - believe it or not - the office! Never thought I would say that.