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.

yes it was in his neck and grew visibly. But... strangely as it goes, the fast growing tumours respond best to chemo and are more successfully treated than the slower growing ones. (Dh has/had DLBCL, an aggressive non hodgkins lymphoma) six months' chemo got it into remission. Always hope. ((hugs))

How are you all doing? I keep thinking of you all and occasionally lurk on the thread.

I'm sorry there are new joiners but am so glad the old posters are still here. In the nicest way, of course.

Sending much love and support to you all.

hey Daisy!! how are you doing? funny coincidence, I was digging through my pms yesterday and was re-reading yours.... hope you're well and truly settled into the house and with everything you need around you.

for drudge & everyone else who needs them. still plodding along here.

Hi everyone
So sorry people are dealing with chemo at Christmas. That was us last year and it truly felt like an ordeal getting through it. I thought it was going to be DH's last Xmas, but we are still all here

Olid how are you?

Daisy I was thinking about you too. How are you?

Hi everyone,
Just a bit of an update - DH finished his 6 cycles of ECX chemo in Sept, by which time is eating had already started to improve. Onc said he would then have a break from treatment and things have generally been okay in that time, eating has further improved.
Appt with onc yesterday (who didn't seem to be very well prepared with info etc for the consultation) and his opening gambit was 'so you are going to retire early now on medical grounds'? My DH didn't know what to say; where had that come from? He's worked throughout the treatment and loves his job. Then there followed some lengthy discussion about why no more PET scan and potential radiotherapy, all the while the onc's computer is slowly bringing up the scan pictures, and as soon as he'd had a bit of a look at them he pretty much ruled out radical / curative radiotherapy.
So it's wait and see now for DH until things become 'symptomatic' and then they'll paliate! I just cannot believe it! If you didn't know how much weight DH has lost, you could look at him and don't think there's anything wrong with him! He's quite stoic about it all, although yesterday hit him hard, he had hoped for radiotherapy. I'm so terribly sad for him, he'll be 52 next week. And for our boys (7 and 4) and his older grown up children.
Since the initial shock when we had the diagnosis, I seem to have put things to the back of my mind, but now more than ever I'm worried about how soon there'll be progression. (We knew from the outset that he was Stage 4 and that the prognosis for his type of cancer is poor, but you always think the doctors can do something...)
He's actually the best he's been for some time, so I know we must cherish these good times.
Hadn't intended to write this much and am not really looking for answers, but it's good to leave it all out.
Thanks x

minute, that's heartbreaking.

Hellen we are much the same, plodding along. OH is not sleeping great so nor am I - totally knackered. DSS has become v independent which makes me feel a bit shit tbh. Having to swallow my frustration with stuff or I'll end up throttling someone.

inamin
sigh. hope this good stretch lasts as long as possible. It's hard not to feel like you're in some crazy time warp tho

hugs for insanity for tomorrow, if you're still around

Inamin I am so sorry to hear about your DH, what shitty news, especially coming up to Christmas.

I do hope you have support in RL. You can't always be the carer/coper.

Thinking of you x

Inamin Hugs from me as well.

Is it me or do oncologists have no people skills at all? They forget what they told you last time and everything seems to boil down to "wait and see". Ours is a bit like House but without the looks or cane. He is only interested in the disease and not the person suffering from it.

Hello all, sorry I have been away for so long, I didn’t realise it had been quite so long in fact, this has been partly due to life being a bit full-on and partly difficulty getting internet access, sorry I haven't been around to be supportive. My work reorganised and my role changed which I have been trying to get to grips with - its a steep learning curve! – but I am thankful I still have a job since we are now totally reliant on my pay. A very kind pm from Daisy has got me to get my act together and get back on here to catch up. Hello to Daisy and thankyou, and to everyone else I know, I have been thinking of you all. Hello too to people new to me, so sorry you find yourselves here.

Quick update on DH. Cancer-wise things have been stable so far, we have the dreaded scan and check up tomorrow , so the familiar fear is well and truly here - no sleep here tonight. Poor DH has been having a tough time. He lost his job due to the firm he worked for going bust around the time the tumour first appeared, he managed to find another part-time one when he recovered from surgery and then it promptly went bust and he lost that one too. So then he tried going self-employed and got a few jobs lined up, just finished the first one, fell over and cut his hand open. He nearly lost his thumb and needed surgery to repair it. So ended up with yet another limb bandaged up, and not able to do anything for a couple of months and trekking back and forth to hospital (yet again in a neighboring county so a lovely 4-hour round trip) and trying to juggle all this around my job. He has been terribly down, and has lost his confidence even further, he was struggling to find motivation to try and find work anyway, and this has really knocked him back again. Still at least he is still here and mostly in one piece - even if the pieces are mostly held together with thread and glue!

for everyone dealing with chemo, crappy news, insensitive medics and 'waiting to see'

Thank you all for your kind words! And to Turning.
The good stretch didn't last long; DH had been feeling exhausted since Monday, not eaten much either. His 52nd birthday was on Thur and he passed out after getting a bottle of milk from the fridge, seemingly as he'd got dizzy from standing up too quickly. A while later he spat out some blood and further dizziness followed, really scary, so he was taken to A&E by ambulance. V low blood pressure due to some internal bleeding from the tumour, but was stabilised with fluids and transfusions. Was able to come home tonight.
Since the last onc appt, DH has totally changed, things have really affected him and he is planning on retiring in the new year and make the most of the time he has left. Also to put things in order for me and the children for when he is no longer around. It must be so, so hard to have to do this.
We were due to travel to Germany to see my family tomorrow, but that's obviously off the cards now, too. Quite incredible to think that just over a week ago, he was the best he'd been in quite a while and now this.

Hope you all had a good Christmas guys

hugs all esp turning and inamin

this Christmas better than last - in that last year dh was on cycle 6 of chemo. Differently weird though. Amazing how it all changes us in a way that can't be undone again

how have you been getting on oli?

Much the same. He's been a bit more mobile lately. There's some talk of removing a portion of his liver but I still don't understand why since it's in his bones now... his onc. keeps having to go over things in a very slow, gentle patronising voice for me. Poor bastard. My brain just won't engage!

How's everything at chez Shrek?

it's ok and bimbling along here. dh is reducing his hours at work from next week not entirely cancer related but he certainly wants to slow down a bit. He is mainly doing it for family reasons but serves both purposes as hopefully he won't be so knackered all the time.

Anyone got any thoughts on immunity following chemo? DH seems to have caught every cold germ passing within tennmiles,mand has had one after another. This time last year he was nearing the end of chemo and we were on germ free lock down, pretty much antibac spraying anyone who came up the driveway Since germs have been encountered again he has caught all of them

So what's the deal with the suggestion of surgery, oli? Confusing would it improve his prognosis or anything?
lots of you seem to have gone missing in action...hope all going ok atm.

OH's immunity has been alright really, which I'm grateful for. It is no fun to finally get away from having the damn chemo and still be picking up bugs, your poor DH! DS is a stickler for picking up lurgies and I think he's managed to be cold ridden enough to cover all our backs or something.

The liver thing would hopefully improve his prognosis & reduce pain. I think it's called a resection but AFAIK that is only available if the cancer is contained, which OH's isn't. Previously a different doctor had told us OH wouldn't be able to have bone strengthening surgery (OH has secondary bone from the liver) but now we are hearing positive noises towards spinal cord decompression treatment which will most likely involve surgery and then shit tons of steroids I think. But that would massively improve his mobility and pain levels, so maybe new doctor is thinking two birds, one stone, get him moving again... who knows. Next time I'm going to take notes and then find a kindly nurse to translate!

I basically have no idea what on earth is happening

But yay to your DH reducing hours! Being less knackered sounds great.

good luck finding out, it's like living on another f-ing planet where they all talk gibberish but expect you to understand it all good if pain and prognosis improve tho. scary stuff, fingers crossed for you

Cheers Shrek, will come and update when I know stuff

have been thinking of you today lisa :) great to hear it is all still stable. So can you stop the London trips altogether or does DH still have to go for a yearly visit or something?

Can't quite believe this thread has been running for a year. Good and bad in very mixed measures - but I would say on the whole this thread has kept a good few of us going over the time!

good news on the counts
arsebiscuit to the chained to the London team - but at least ypu do know they're on top of it (now they've figured out how to keep track of the blood tests )

Arsebiscuit??

Sounds like we are all muddling through. Does it ever get easier?

We had a good Christmas in that DH is better physically but mentally he is very low. He switched ADs ( dr said just stop one tablet and take a different one next day) during Xmas. Not convinced that was a great idea.

Is there any way we can organise a meet up? I know it was mooted but didn't happen.