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Archive for November, 2012

Oncologist Visit

Sue visited the Oncologist today.
One of my worries was that he would tell her chemotherapy would not help – go home
and initially, she tells me, that was what he appeared to be saying.
BUT
NO!
Chemotherapy will start before Christmas. She is to have two kinds – one orally (in the form of a pill) and one intravenously. I don’t know how often – forgot to ask!
The side-effects may be pretty horrible – but we know that already – and the diet she and I are doing will hopefully mitigate some of them.
The surgeon has apparently done such a good job of removing the cancer he could see and that, and having both types of chemotherapy will give her at least a 60% chance of remission. Of course, we are aiming for much higher than that!
She came here today, before her appointment – and is looking really good.
She has lost a heap of weight, but – to be fair – she was a big girl. I dread to think how she might feel had she been tiny before all this.
Also, it makes me realise that ‘what you weigh’ is NOTHING to do with how healthy you are.
She is eating really well – ie heaps of food, but really good food – she says it feels like Christmas everyday – seafood, ham, chicken, steak, lots of salads… She ate a biscuit yesterday, expecting to enjoy it, but didn’t at all lol!.
 
 

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Home

Sue gets to go home today.

The last few days she has made the most amazing progress. They came to remove her catheter – at 2am – so much for the restorative value of sleep eh? – just a couple of days ago.

She then HAD to walk to the loo (because she vowed she would never use a bed-pan!). Other tubes came out, along with half the staples that held her together – 60 staples that day! She had her first solid food in two weeks on Saturday (sausages, baked beans, white bread, cake….sigh). The dietician is worried that she has lost 8kg in just 10 days, but we wonder what they expect, when she has had lots of her innards removed, a lake full of fluid drained from her gut, AND she hasn’t eaten anything for 12 days!

The last 60 staples were removed yesterday and she was able to have a shower. She said she stayed under the water for an hour, and washed her hair four times – she said it felt marvellous 🙂

She has an appointment with the oncology people on Thursday to discuss her chemotherapy treatments.

She and I will both fast for 48 hours prior to each chemo treatment. Fasting apparently causes the ‘good’ cells in your body to go into ‘survival mode’ – thus protecting them from the side-effects of chemotherapy. The ‘bad’ cells are ON all the time and cannot protect themselves against the drugs.

She is hoping – if she can minimize the side-effects, she will be able to return to work. She LOVES her job. The only question she asked the other day was ‘when can I go back to work?’

She and I will also continue with the very low carb version of the paleo diet. Research shows such a diet can help ‘starve’ the cancer cells of the glucose they need in order to grow.

I know you probably get tired of hearing about this ‘diet’ stuff, but it fascinates me… and is a way for me to feel not so completely useless while Sue is on this ‘journey’. It simply can not do her any harm, and is my way of showing solidarity at this time.

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Good News

It’s not an infection – there is a tube in her nose that goes to her stomach. Apparently it is causing some irritation, and that is making her vomit. It should be able to be removed on Saturday.

She had her catheter removed last night, walked to the loo this morning and is feeling good.

We’ve had a meeting with her specialist. He had the results of the biopsies and recommendations for the future.

It turns out that chemotherapy IS an option… we had been so afraid they would say there was nothing further they could do.

The likelihood of chemo curing her cancer is very slim, but it may give her some more time – if it goes well, maybe up to 3 years – if not, it will be just months.

We are chasing a miracle for her – we know that. But they  happen sometimes, and she is overdue one.

I’ve been madly googling – trying to find ways to maximize the good effects of chemo, and minimize the side-effects. Turns out a ketogenic (VERY low carbohydrate) diet (which is what we were doing before the diagnosis) is the way to go.

And odd side-effect of that diet is it seems to promote a sense of ‘calm’ – almost a detachment. I’ve read it described as ‘Vulcan’ – (after Mr Spock from Star Trek). Sue has it, and I find I do too – mostly. I ate some extra carbs at the weekend – and had a miserable, weepy day on Monday. I’ve gone back to the diet and am feeling much calmer. I think it might be the source of my ability to be the ‘family rock’.

Once again – thank you all for your support and encouragement. It is hugely appreciated.

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Infection

Sue spent all yesterday and all last night vomiting. At first they thought she was reacting to a change in medication. Now they think she may have an infection…

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Angry

Sue had a very bad night. HUGE pain – so we are not allowed to visit today, so she can rest.

I took some things she’d asked for to the hospital – left them with the ward receptionist.

I got back to my car and got a txt from her… thanking me, telling me she felt very much better…

It turns out…

The afternoon and night nurses ‘forgot’ to give her iv pain relief.

FORGOT TO GIVE HER PAIN RELIEF!

WHAT THE FUCK?

Her doctor and the ‘pain management team’ are very angry.

The rest of us are so angry we could spit.

It’s a very good thing we are not allowed to visit today – I want to hurt someone, I really do.

This is supposed to be one of (if not THE) best cancer hospitals in the country.

God help the rest of them.

She’s had pain relief now – has had a sponge bath and is sitting in a chair. The sooner she is well enough to leave the hospital, the better.

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I’ve just been up to see her.
She looks pretty dreadful – but after what she has been through – who would wonder?
The operation took 7 1/2 hours. And then she was a long time in ‘recovery’ because that didn’t go smoothly.
They have removed an awful lot of her bowel; her ovaries, the omentum (the ‘net’ that keeps your bowel from flopping all around your body) and her appendix.
The cancer started in her appendix. This is EXTREMELY rare – 1 in 100,000 chance of getting it.
There is still cancer in her bowel and they’ve biopsied other bits too – apparently this gives them a better chance of getting the correct chemotherapy to zap this type of cancer.
She has to have a cholostemy bag for the rest of her life, but that is neither here nor there really.
If they get the chemo drugs right – they think it will give her more years.
If not – it will be just months.
She is determined (always has been) – but this is just the beginning of the battle.
It’s going to be one hell of a fight

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Operation

News came in late yesterday.
After a  7 1/2 hour operation.
They removed her ovaries, appendix, the omentum (which is like a net that keeps the bowel in place), and part of her bowel.
There was more cancer than they thought.
They’re not sure where else it is.
They’ve taken more biopsies and the results will take 3 days.
More waiting.
We’re trying to stay positive.
 

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