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

[MrsShrek3]

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

[Hellenbach]

Hi Triplets
what an inspirational story!
I am so pleased to hear your DH is well now. It's great to hear from people who have been through this hideous experience and come out the other side x

[MrsShrek3]

good to see ya here. well it's not, but yano what I mean :)

[triplets]

Thanks ladies...........its nice to be surrounded by those who truly understand. Yep my dh has been amazing, never given in, never stopped working even when he was so weak he would drag himself off, couldnt stop him. He is now awaiting further surgery to repair a very large abdominal hernia hes had for 2 years. Its been caused by the five previous ops on liver etc, everything is weakened. It is a nightmare of an illness to live with isn`t it, you learn an awful lot about alot of things.................and people!

[MrsShrek3]

So true, Triplets. You end up knowing stuff that previously you didn't even know existed, becoming an expert in the most bizarre areas of human biology, and the people, well. as you say it's an eye opener.
It sounds like your DHs resilience (easily confused with absolute stupidity at times, if anything like mine) has got him this far. keep it up
Can I ask, those of you whose DH is heading for remission or improvement... Are you finding the remission bit as scary as I am? Just wondering. feels like it should be all relief and good news whereas in reality its more worrying and uncertain than the cancer and chemo.
Echo, Hellen, 2sugar, Corny, Lisa (and anyone I've rudely unintentionally missed who's around) I think of you all a lot, wonder how you're doing. such a long and exhausting road, doesn't leave much time for getting on here and wasting spending time reading and updating does it...

[triplets]

Remission..........I feel what is happening now when I tell people the scan is clear again and its a period of remission they think its all over, he is cured. At diagnosis 5 years ago he was stage iv, treatable, not curable. The longest period of remission we have had before this one in 9 months, then BANG, it had spread to his lungs. In our case I feel we are now back 75% to living our life again as it was pre cancer, and I think that is because time does that. After 5 years you learn to live with it, it is now another part of our lives, like it or not. The kids now never get panicky when its ct time like they used to, they have coped very well. Last July after being given another all clear the onc decided that she would now scan 6 monthly with 3 monthly blood tests, instead of 3 month scans...........that scared me......6 months alot might happen. I think when you have regular scans, when you are on chemo etc you feel you are doing something to rid the beast, when nothing is happening you are not in control. The one thing I do feel now is that cancer is an illness like many others not the death sentence that scares the hell out of you when you hear those awful words, "its cancer". Research is the key, I donate to Cancer Research and am amazed with their updates the progress they are making, one day there will be a cure, for all.

[MrsShrek3]

that post is awesome, triplets.

I'm back to doing nocturnal, brain in spinning mode, after a couple of weeks of sleeping some nights. sigh. How's everyone doing?

[cornycruzcampo]

I'm also nocturnal - been awake since 2 and didn't get to sleep till gone midnight anyway.
must give up coffee in the evenings and see if it helps - on horlicks now

[MrsShrek3]

yy to ditching the coffee, Corny. I've now put myself on juice (warm ribena etc) from lunchtime to see if it affects anything. sadly i fear I'm kidding myself as I have been doing this for 6 months plus and no improvement. But it makes me feels smug when people suggest cutting out caffeine and I can say I did it months ago

[Inaminutenow]

Hi all, I'm new. DH had a diagnosis of oesophageal tumour on Valentines Day. A few investigations later, they say it's advanced, straddling oesophagus and part of the stomach. Still needs to have a PET scan, before we'll know for sure which way things will go. It's really scary, but at the same time feels like it isn't happening, as no treatment has started yet. We've got 2 DS (6 and 3), and he's got two grown up children as well. The older ones know, but I'm dreading preparing the little ones for the changes ahead.

[MrsShrek3]

hugs, inaminute. Just having a quick catch up and had to say something. back later

[Hellenbach]

Hi Inaminutenow
Sorry to hear you are dealing with this, hope your DH isn't feeling too unwell.
When my DH started chemo I got a brilliant book from Amazon. It's called 'How to help children through a parent's serious illness' by Kathleen McCue. My DC are 6 and 2. The youngest has sadly got used to DH being in bed in the day but my 6 year old really struggled. There are some great tips on what to say and do.
I also ordered a book from the US, couldn't get it here, same author, called Someone I Love is Sick. It's aimed at children and has simple pictures and sentences that you can read together. My 6 year old started talking more after we read it.

[Twosugarsplease]

Sorry you are going through this inaminuite
I have a 3 yo ds, two teen boys and step-daughter.
My dh is going into hospital on Monday to have half of his thyroid removed as highly suspicious, we're still in the woods not knowing for sure if the growth on his thyroid is malignant. It's a shit time.
I hope you find this thread a huge support. (hugs)

[MrsShrek3]

hugs and handholding for you too 2sugars. waiting and anticipating is the pits
our dc were 11,8+6 when DH was dx last summer. we were straight with them and gave them all the info they could understand and as time went on we answered everything they asked and gave them updates. that said, we didn't want their summer to be all about dad having cancer. younger ones particularly just live in the now. we talked a lot about good cells and bad cells, and the chemo getting rid of the bad cells but stopping all fast growing cells like hair and nails etc...I'm sure you know the drill. Shouldn't have to have these conversations with our kids should we

[Twosugarsplease]

No we shouldn't mrsS
I'm so hoping it doesn't come to that, I've explained to my teen ds's that a bit of help and consideration for next couple of weeks after the op would be really nice, just to help entertain little one, so dp can relax instead of listening to the usual rants and teasing, ( that drives me bloody bonkers) they understand what's happening, but I haven't told them worst case scenario, eldest ds leaves school in 3 weeks and already started some exams.
Explaining it in a way of good and bad cells sounds like an easy way for them to understand inamin

[Inaminutenow]

Hi all, thanks for your advice, will have a look at books etc. Have told the Boys' school yesterday, as I think whatever happens in the PET scan, chemo will be coming straight up, potentially before the end of this month...
Hugs to you all, will keep you posted.

[MrsShrek3]

how's it going inamin and 2sugars?
our friend lisad isn't well atm so sending her get well vibes too.

[Twosugarsplease]

Hi mrsS sorry to hear lisad isn't too good, I'll have to have read back on the thread to catch up.
Just this weekend to get through, then dh goes in for his op on Monday morning, so hopefully we will find out while he is in hospital.
Hi inamin how are you and your family ?

[Twosugarsplease]

Can anyone tell me if it's likely dh will find out if the growth is malignant while he is in hospital....?
This waiting is horrible.

[MrsShrek3]

dh's thyroid tumor biopsy results took 4 days then he started chemo within 2 days. I gather that the experienced eye can sometimes tell what they're looking at very quickly. waiting is the absolute worst bit of the whole hideous process. so sorry you've had to do so much of it 2sugars, it just feels endless

[MrsShrek3]

i must add.that the 4 days was over weekend too.

[Twosugarsplease]

Thanks for the quick reply mrsS
Yes your right I'm sure consultant will have an idea what they are dealing with during the op, just hope if good he can somehow point this out without getting our hopes built up, if we have to wait for results. Sorry to hear lisad isn't well at the moment.

[Inaminutenow]

DH will have PET scan on Mon and has also been booked in for a laparoscopy on Thursday. Surely that'll be the end of the investigations? I just want for some treatment to start. Although, having said that, things are a bit surreal ATM, as if nothing has happened, we're just going through the motions. I'm sure once chemo starts, we'll see a big difference. It's the fear of the unknown and I think with his diagnosis, nothing will go back to how things were before. Will keep updating.

[MrsShrek3]

hugs and hands to hold inamin and 2sugars. hang in there. every day feels a week long when you're waiting.

Today is looking a bit better here. had a really rubbish week DH has all sorts of niggles healthwise and won't see gp. next app with consultant is middle of April. I've lost the plot/marbles/whatever and don't seem to have the ability to deal with even the smallest things any more. really hoping that a chilled weekend is ahead

[daisydotandgertie]

I feel bad I've not been on the thread for ages. Life is just too tough at the moment and I'm trying quite hard not to face it really. Mr D has come home with a very technical diagnosis of 'it's the cancer causing the temperatures', 2 different sorts of morphine a a visit from palliative care.

I have taken some comfort from the palliative care nurse (who I was frightened of seeing tbh) who said she didn't think we actually needed her at the moment, so she'd put us to one side or the time being.

We did have to see the cunty oncologist in hospital and as ever, he was utterly doom laden. He told us the time had come to discuss the end, wills and funerals and so on; and to go home and enjoy whatever time we have left.

Mr D is OK though; he is at work as normal, is eating well and we are managing a comparatively normal life. He hasn't had a temperature since he left bloody hospital. Cunty oncologist really doesn't seem to have the measure of MrD - he is just not that ill.

Inaminute - so sorry you've had to join us here - the waiting is just awful. But once they are absolutely certain about what they're dealing with you will be on a treatment path as quick as a flash. If you have questions, there will be someone at the hospital who you can talk to - ring the unit and explain what you need and someone will be available to answer your questions. I wish I'd known at the beginning of this how keen they are to help with our questions and stuff - I didn't hear them when they gave us numbers and so on.

Twosugars - MrD found out the growths were very, very likely to be cancerous before the endoscopy or biopsy. It was the day after he was admitted for PEs. Cancer was confirmed on the day of the endoscopy, but treatment didn't start for a further week or two - mostly because he had to get over the PEs and have a couple of blood transfusions because he was so anaemic.

Triplets - I keep on reading and re-reading your story. It gives me such hope, especially as your DH's cancer had also spread to his liver. I can't stop thinking about it; reminding myself to never, ever give up. Thank you for posting.

Mrs S - are you me? I am beginning to be spooked by how similar our situation and reactions are. The situation we are now in is much much more scary than ever and I can't quite pin down why.

Corny and Helen and Echo and Lisa how are you all doing?

[Hellenbach]

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