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Trib's thread for her step-dad

49 replies

tribpot · 04/03/2008 18:47

Okay, to summarise to date:

My step-dad is in hospital. He went to see his GP two weeks ago exactly, can't believe how much has happened since then. He's been feeling breathless for a while and was retaining a lot of fluid on his ankles. GP sent him for a chest x-ray. Radiographer said "go back to your GP. Today." because there was a shadow on his heart that looked like a mass of some kind.

He was due to be seen at the chest clinic today but had a CT scan done last Wednesday that confirmed it was a mass and that there was a big build-up of fluid round his heart. On Thursday the hospital phoned to say "why aren't you here?" Errr, why would I be? Anyway, he should never have been allowed to leave after the CT, so they admitted him and on Friday they drained the fluid.

Unfortunately during the drain my step-dad went into shock and they thought he'd had a heart attack. (Crash team called, my mum in the waiting room watching them go by ... )Fortunately this wasn't the case and with some saline and oxygen he was fine. He feels a lot better now the fluid's been drained and we're waiting to hear whether they can make a diagnosis from the fluid itself, or if a needle biopsy will have to be done. If the latter, hopefully he'll be out today and await the results in a week's time.

The two possibilities which have been mentioned are lymphoma (not good - but there are 'grades' of lymphoma) and thymoma. Thymoma would be the preferred option as the majority of them (it's a tumour that grows on the thymus, which is some weirdo entity near the heart) are benign and 'just' require surgery to remove.

So a worrying time, but my mum is coping okay for now, my step-dad's quite chipper. Just got to take it as it comes, I guess.

OP posts:
katz · 18/03/2008 12:25

thinking of you, and fingers crossed.

onlyjoking9329 · 18/03/2008 12:31

sorry i have only just seen this thread, thinking of you all it is horrible all the waiting for results and stuff. let us know what the treatment plan is.

YouKnowNothingOfTheCrunch · 18/03/2008 12:35

fingers crossed here too, good luck.

MrsWednesday · 18/03/2008 12:38

Fingers crossed Trib.x

YouKnowNothingOfTheCrunch · 18/03/2008 19:05

Any news Trib. My heart's going out to you.

PeterDuck · 18/03/2008 19:17

This reply has been deleted

Message withdrawn

tribpot · 19/03/2008 06:54

Hi all,

Well the news is that it is a thymoma. But because it's invaded the pericardium they want to shrink it with chemo before they operate.

Three lots of chemo, once every three weeks, starting in two weeks' time.

That's all I know right now; things are so hellish at home as dh is ill (I mean ill ill not the usual chronic illness), I am absolutely swamped with work and ds only at preschool three mornings a week (with hols of course after today).

OP posts:
sfxmum · 19/03/2008 08:22

I am sorry to hear Trib, hard times ahead no doubt. I hope your step dad and your mum get proper support.
also am sorry DH is not well.
{{{Big hugs to you}}}

Bubbaloo · 19/03/2008 08:52

Trib-have only just seen this thread.
Really sorry to hear about this and what you're all going through at the moment.Thinking of you.xx

MrsWednesday · 19/03/2008 09:01

Trib, I can look after DS tomorrow if it helps, as I'm off work after today.

Sorry it sounds like you have an enormous amount on your plate at the moment.

AtheneNoctua · 19/03/2008 09:05

Hi Trib. Sorry to hear this.

katz · 19/03/2008 11:42

really sorry to hear this trib.

I'm off the week beginning the 31st if you fancy meeting up or you think ds would be happy with me and DD2!

YouKnowNothingOfTheCrunch · 19/03/2008 13:16

So sorry

Hope it all goes as smoothly as it can.

tribpot · 20/03/2008 06:35

Thank you all. Just worrying about how ill he might feel on the chemo / what the prognosis is. My mum thinks about 60% over five years (but then my step-dad cut into the phone call "I haven't told any of my children that!!" so my mum said "Ah, pretend I didn't tell you").

We won't know much about that for a while. Fortunately my friend who is a respiratory consultant is home from an extended stay in NZ on Monday so I can have a proper chat with her, which will be good.

Katz - some time that week would be good. And MrsW, many thanks again for your offer of help.

OP posts:
onlyjoking9329 · 21/03/2008 08:25

hello, sorry to hear that the news was not so good, hope the talk with your friend helps in lots of ways, let us know how things go.
thinking of you.

sfxmum · 21/03/2008 08:52

trib I am sorry there is so much uncertainty ahead, chemo is never easy, like I said I hope there is adequate support to help you all through it.
thinking of you

tribpot · 10/04/2008 06:53

Well, tomorrow is the first day of chemo. I don't know what to write. I guess the 'phony war' is definitely over and the real war begins now.

OP posts:
Gingerbear · 10/04/2008 06:58

Oh, tribpot, thinking of you . Has your dad/ family had any help from a MacMillan nurse?

sfxmum · 10/04/2008 21:49

hi Trib thinking of you and your family hope it all goes well. is it a long course?

take care

tribpot · 12/04/2008 08:11

Hi all - change of plan. The doctor wants to give him both the full day dose and the two follow-up doses intraveneously so the first day of treatment will be Monday, i.e. when there are three consecutive days that the hospital is open for business. Don't know if this is worrying or not.

Ginger - yes, he saw the Macmillan nurse on Thursday I think.

Sfx - should be three sessions of chemo, once every three weeks.

OP posts:
tribpot · 16/04/2008 07:32

Update: things are going okay so far. My mum is having her training on how to inject [something, can't remember what] into step-dad's stomach today He's still feeling okay though.

OP posts:
tribpot · 17/04/2008 08:18

A further update: Mum now knows how to inject something that stimulates white blood cells. Step-dad still feeling fine! In fact the nurses are surprised, which made him worry maybe it isn't working if he doesn't feel bad.

Fortunately a doctor friend put his mind at rest that how bad you feel is not related to how well the treatment is going.

OP posts:
sfxmum · 18/04/2008 08:44

keeping fingers crossed it all goes as best as possible
x

tribpot · 23/07/2008 20:13

Wowser, been a long time since I came to this thread. The news is good and bad.

The good news is, he had three rounds of chemo and dealt with them all well. After that the surgeons pronounced that the tumour had shrunk enough to attempt surgery.

He had the surgery on Monday and has bounced back brilliantly, given it was a hugely invasive operation. He's feeling fine already and it's only Wednesday!

The bad news is the operation didn't work. Once they opened him up, they found the tumour was rock hard and had completely invaded/surrounded arteries, veins and attached itself to one of his lungs. To remove it would have killed him.

So they've sliced off a big chunk for histology but it's still there and we will be dependent on chemo and radiotherapy to get rid of it.

I still don't really understand why, but a lot of this now hangs on the histology. We won't know any more for about four weeks.

I'm trying to stay positive in that there is no point doom-mongering in advance of there being any actual doom. But it's hard. I want to talk to my mum but she is fielding so many phone calls she says not to call her, she'll call if anything changes.

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