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chat and hand-holding for those of us supporting a DH with cancer - new thread for the new year

(738 Posts)
MrsShrek3 Sun 30-Dec-12 19:51:20

sign in, folks smile
Hoping that 2013 brings better stuff for all of us.

Hellenbach Sun 10-Mar-13 23:09:43

Hi everyone, it's been a while, feel like we are wading through treacle, every day is exhausting to get through. DH's moods are very difficult to deal with, he is incredibly up and down.
We were doing okay until he had to go for bloods and the bloody nurse said
'you do know that just because you are getting some side effects from the tablets it doesn't necessarily mean they are working!'
WTF?!! Really unhelpful. He came home on a massive downer and has been miserable ever since. He won't be having a scan until June so we are in limbo again and her stupid comments have put him right back to how he was before, sleeping in the day, short tempered with the children etc.
Yesterday he had bad chest pains and had to call out of hours dr and go to hospital. Worried as this is a serious side effect of his tablets, he has stopped taking them and we will see his consultant tomorrow, praying they won't say come off them.
Distracting myself with DS2's 3rd birthday party coming up and applying for jobs (got to earn some money, DH self employed and income has dropped massively).
My head is all over the place. Part of me thinks 'when DH is better we can.....' then I have to stop myself and think, He won't get better, this is how it will be now for an indefinite period of time.
Thinking of those waiting for results this week x x

digerd Mon 11-Mar-13 08:57:43

That was very insensitive of the nurst to say that to your DH. But reminded me of of my DH who was told that he could never be cured and that even in remission it would be 5 years at the most before it returned. <shocked face>

MrsShrek3 Mon 11-Mar-13 21:35:02

not MORE waiting, Hellen? shock

Daisydot hehee at "are you me" wink

sorry, just passing thru. Back later. hang in there, all smile

Twosugarsplease Tue 12-Mar-13 14:27:43

Just updating: dp home now, had right side of thyroid removed, consultant told him in recovery that op went well, that's all !!
On his rounds yesterday he told dp to go back in a week for stirches out, and 10 days to see consultant for results...!
Suppose we were expecting to be told some kind of news during his stay sad dp sleeping off his meds in bed, and probably wondering what happens next, and will he have to go through all this again if malignant, we just don't know, this is just crap! On the plus side, he is home.
More waiting...

Inaminutenow Thu 14-Mar-13 20:27:43

We went in to hospital today by 8 for DH's laparoscopy, but once the consultant came round he said that he'd seen the results of the PET scan late yesterday and felt that there was no benefit in putting DH through this procedure as well... Apparently quite a lot of spread in the stomach area sad. So waiting now for an appt re chemo, how, what, when, where. I think they'll be starting DH on it before Easter. It's all sooo scary not knowing what to expect, how it will work etc. DH is staying quite positive, which is remarkable. Apparently they'll be using high dose / mix of drugs, as DH is still quite young and fit. I'm dreading it! How do you combine supporting DH with his treatment and working (ft)?

MrsShrek3 Thu 14-Mar-13 20:51:25

hugs, inamin. we've done the juggling thing. DH on chemotherapy, me at ft work, three primary age dc, one with asd. Im fairly sure I did it on adrenaline, and probably still doing so. I didn't refuse any offers of help but tbh running round after the dc kept me busy enough not to think too much. the hardest thing is not having a break, so if there is anyone willing to give you one, just take it. mil took ironing, my mum fed us one night each week. that sort of stuff is worth gold.

MrsShrek3 Thu 14-Mar-13 20:57:19

don't know if the old thread is any use to you here

Hellenbach Thu 14-Mar-13 22:00:06

Inaminutenow sounds like a very hard day, but now you know what you are dealing with, sometimes I find that helps, even when it's not what you want to hear.

It's hard to predict how the chemo will affect your DH. He may not be too knocked out by it, especially as he is fit and well now. I met people in the chemo suite (suite!) who just had one day in bed and were fine on it.

Get some mechanisms for help set up now, don't wait until you are struggling, like I did!

Big hugs x

Inaminutenow Thu 14-Mar-13 22:51:18

Thanks for the advice. I suppose you just try and build everything into your normal routine? I'll have a read of the previous thread.

gingeroots Fri 15-Mar-13 16:10:40

Thinking of you Inaminute.

The Macmillan site have a general info phone number
Questions? 0808 808 00 00

Maybe worth phoning them .

>>>hugs<<<

MrsShrek3 Sat 16-Mar-13 21:09:56

<more handholding>
thinking of you all smile

MrsShrek3 Sun 17-Mar-13 07:33:41

sigh. anybody else feel like they've run 25 miles of a marathon, another mile to go and no energy to do it? sad

lisad123everybodydancenow Mon 18-Mar-13 15:12:37

Message withdrawn at poster's request.

Inaminutenow Tue 19-Mar-13 22:23:18

Chemo consultation coming up tomorrow for DH. It's weird, I want things to get underway, so that we can start fighting that cancer, but at the same time I'm scared how the treatment will affect everyone, not least DH. But it'll be good to have a plan, rather than waiting round for appointments, I guess.
Hugs to all of you.

MrsShrek3 Tue 19-Mar-13 22:31:39

more hugs inamin. FWIW I found it much better to have that treatment plan for DH. Ys there are worries but the reassurance that there is huge monitoring and, well, a plan, make it more manageable. Wishing you all luck.

Twosugarsplease Tue 19-Mar-13 22:57:22

With you on that inaminuite

Twosugarsplease Tue 19-Mar-13 23:00:36

Get well soon lisa

lisad123everybodydancenow Tue 19-Mar-13 23:14:20

Message withdrawn at poster's request.

lisad123everybodydancenow Tue 19-Mar-13 23:20:49

Message withdrawn at poster's request.

MrsShrek3 Tue 19-Mar-13 23:38:04

brilliant list, Lisa.
Yay for Mr LisaD grin

Inaminutenow Thu 21-Mar-13 06:54:25

We've been told it's Stage 4, chemo (ECX?) to start in the next couple of weeks.

MrsShrek3 Thu 21-Mar-13 07:08:13

sad hugs xx

lisad123everybodydancenow Thu 21-Mar-13 07:44:22

Message withdrawn at poster's request.

So sorry it wasn't better news. I think we were on EOX - we changed from Cisplatin to Oxaliplatin on the advice of a second opinion consultant, along with Epirubicin and Xeloda (capecitabene). Is that the drug combo you're starting on?

Any advice at all I can give? Sounds as though treatment is going to be much as MrDaisy's.

Inaminutenow Thu 21-Mar-13 22:04:41

Thanks all. DH looks on the bright side and keeps saying he could have a car accident tomorrow and be gone... At least this way he can get everything in order sad. I seem to be hit harder than him, when I'm not even ill. Brave face during the day, and then it hits me once the children are in bed. I'm such a wimp compared to DH.

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