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.

Hellen so sorry, that is a really crappy sentance from the oncologist . I am so sorry that the first treatment hasn't helped but have everything crossed that the new one is better. Sending more from me. It is really hard being bombarded by everyone wanting to know what happened. A blog as Lisa suggested sounds like a good idea, or is there someone who you can ask to send out information for you? Or an email update - all DH's family is in Australia, so I have set up an email group and just send out one email to everyone as it was so hard trying to ring everyone. Sending loads of ((((hugs)))) .

Hello Twosugars welcome to the thread, there is loads of support here. we all know how shocking it is to be waiting for a biopsy and how scary it is (((hugs))). Hopefully you will get good results and won't need to be here long. Do you know how long you have to wait yet?

Hello Lisa just posted on your other thread, sorry today has ended with a bump Typical you got appointment on same day as paed review. That happened to us too. I put it off and it came last week, same day as another DH appointment. I didn't dare put it off again - it was a year late as it was. But it was a bit much. and (((hugs))) for all who need it.

anyone else up?
most mornings I'm up at 4-5 now. sometimes I get back to sleep but sometimes not. It's so knackering.
Hellen sorry about your dh's results. Just what you didn't want to hear. ((sending hugs))
Lisa it's sods law that you'd get the appointments for dh and dd on the same day isn't it?
hello twosugars. do you have a date for your dhs's biopsy yet? The waiting is horrible isn't it?

Hellen...bugger back in hanging-in-there on the edge of your nerves territory again. if vino iswhat it takes...

twosugars - oooh. That's how it started for DH in July, although we knew it was lymphoma from the needle biopsy and the thyroid biopsy was just to find out which type. Prior to that we'd read up on all sorts....as you probably are. If you have bad enough luck for it to be any of the range of nasties there, the prognosis for all of them is pretty good. fingers crossed for you.

Thanks everyone for your kind comments. Bizarrely we have actually had a really good weekend. I think DH is massively relieved he doesn't have to do anymore chemo and is feeling more well than he has for ages.
We had friends over yesterday and he ended up on the karaoke!

Lisa - I love the blog idea
Corny- have you tried any herbal sleeping pills? You must be exhausted!

Off to a different hospital tomorrow, DS2 is having an op, just keyhole but not nice. Looking forward to a hospital-free week soon!

great stuff hellen :)
Echo - where have you gone?
Hoping you're all managing to do what you need and fake being sane.
Corny, ditto....two hours is my best night's sleep this year I seem to have killed dropped off all the nocturnal threads here too. Mainly because there was only me talking to myself on them

DH's appointment on Wednesday but we're Not Thinking about that are we

Hi,i'm still around but haven't been on here much for a while.

DP had his MRI last week and biopsy this morning,very sore at the moment,asleep on the sofa and peeing blood as they said he might.(not on the sofa i might add).

He's been a really miserable sod to live with the last few of weeks,and i don't blame him at all for that (i would be a nightmare) even though he hasn't had a diagnosis of anything yet but told that there is a possibility of cancer given the high hormone levels.

The results are in about ten days i think.

I know this will sound really selfish but i spent most of last year,from November 2012 til August 13 looking after my Mum three hours drive away and he was fantastic about it,coming up to us regularly and doing jobs to make the house easier for her to manage when i came home for a few days and the carers were there.

His prostate problem was found out just before Christmas and with other problems on top i just feel i've never had time to even think much about my Mum,she died three weeks to the day after her cancer was diagnosed and i still feel angry about that,how could they not have found it sooner after she had MRI scans and xrays herself.

Sitting in hospitals again so soon is awful,of course i will still go with him and be as supportive and caring to him as he was to my Mum and i and i would never tell him i feel shit about it because i do feel dreadful for him and our (grown up) DC.

HeyHo... onwards and upwards.

Prostrate cancer is often contained and does not spread quickly. The advice, if not spread is to have the wretched thing out, but most men do not want that.
I know a man who had it diagnosed early and lived for 20 years having it contained with hormones. Also know another who was just 60 and he decided to have it removed and be done with it.
So sorry about your DM.
Good luck for DP - he was very good and kind to your DM.

I just re read that and what a cow i sound.
He's only 51 and i'm moaning about me being upset.

The biopsy sounded vile and painful,everything is so complicated and i can't let him think i don't care,i do care,it's just too bloody soon after my Mum if that makes sense at all.

It was November 2011-August 2012 that i was with my Mum,she had a bad fall and needed looking after,then she had a stroke a few weeks later just after Christmas,i stayed so she would have visitors in hospital everyday and someone when she went home,then the cancer in August.

Dbro was almost totally useless in any practical way and went off on his hols for four weeks the day she came home from the care home where she stayed for three weeks,DP did all the stuff Dbro should have done including arranging the funeral.
The day Mum died Dbro didn't even get up to us til late afternoon after we'd been up all the day before and night with her.

I will pull myself together,but it just gets me down so much and having to cheer DP on at the moment isn't easy.

Like i said before,he hasn't got a diagnosis yet so we shouldn't even be getting this upset.

Sorry to misery plop.

Mrs Shrek thinking of you tomorrow

Echo there is this misconception that cancer brings out the best in everyone and we all become magically caring and serene.....er not!
I remember a nurse saying to me and my DH ' I bet this whole experience has brought you so much closer together'
I told her that all we had done was argue!
Don't be too hard on yourself

I've been thinking of you today too MrsS hope you are ok

Hello again, and thankyo for the welcome mrsshrekand lisa (also my name)
I started my own thread and have been glued to the responses.
mrsshrek hope all was good yesterday.
I remember posting on your thread back in July, I remember thinking, how awful for you, my worst nightmare, so sorry it was bad news., and here I am too 6 mths later.
No date for biopsy yet :( ultra sound said its a nodule, 33 mm in size, I'm clinging into info being given to me that it's apparently thyroid cancer is very treatable, 5 % chance of being malignant.
Dh btw thinks I'm being daft worrying do much about him. I'm not too bad at the moment, but when date comes the knot in my tummy will start again, lose some more pounds too

There are so many of you here, and you all sound so strong and brave x

hang in, twosugars.

Better news yesterday. Brain won't process it all though. I'll come back when I can get my words and my thoughts straighter....sorry I am just too overloaded for now.

Hello MrsS glad it was better news, not surprising you can't process it, it must have been a very stressful day (((hugs)))

Echo you have been through so much with your mum I am sure that is only just beginning to sink in without this happening as well, no wonder you are finding it hard. And it is waiting and wondering and the unknown that is stressful, you have every reason to be feeling upset, you don't sound like a cow at all

Twosugars I am sorry you do not have a date yet, waiting is tough, glad you are getting support on your own thread too.

Hello everyone else, hope you are all doing ok

How is everyone? The snow is a great distraction isn't it

Twosugars my friend had a lump on her thyroid removed a few years ago. She was told it was pre-cancerous (just to throw another angle into the mix).
Afterwards her thyroid function is working fine, monitored regularly and she has been fit and well ever since.

MrsShrek thank goodness for some good news

We have now been told DH will have to go in overnight for a biopsy. They don't know why the chemo didn't work so it makes sense to do this.
But we have been told it will be like 'a whole new diagnosis', so more waiting, worrying and then results.

Feel like a hamster on a wheel!

My Best friend's sister was diagnosed with an unusual, very aggressive Breast Cancer, 10 months earlier no sign of it on mamogram>, and after 5 months of chemo, they found it was still there, and changed the chemo for another 3 months. She was told hers could not be cured. That was 3 years ago, and she is still fine on the BC tablets.
Fingers crossed for your DH HELEN

Update time. Brain slightly more engaged (still woke up before 7am head spinning, how rude is that on a Sunday?!)
DH doesn't appear go have processed this stuff either, and it all feels a lot like talking about someone else. The haematology consultant told us that as far as he is concerned no more treatment is needed, DH has had the gold standard chemo and the aim was to over-treat with the chemo - the cancer is now in remission. For this type of lymphoma only full remission will do, for others partial is fine - so we knew it had to be gone or more treatment. There are still more (minor) tests to be done on his thyroid because the bit that was working before probably isn't now, as that's where the extranodal tumour was. Apart from 3 monthly CT scans and appointments, dh is free to return to work. The relapse rate for this type of lymphoma is a bit higher than you'd hope, hence relatively more intense monitoring for 5 years compared with others. Unluckily I can't see us getting rid of Pat any time soon After over six months of "it" being in the middle of everything, we can now try to figure out what "normal" is supposed to look like - another difficult task because I can't even remember how. Plus the fact that the whole journey has changed us. We're tougher than I thought we were, individually and as a couple or family. But quite different.

There is talk of a trial medication. The theory being that the relapse/reccurence rate needs reducing (it is currently quite significant) and ways to attempt to beat that three year boomerang that is non hodgkins lymphoma appear to be underway. No idea if he will do it or not, we weren't expecting to have to make decisions. I'm staying on this thread btw. It's been my lifeline for so many months and our journey and battle with bastard cancer ain't quite over yet. Plus the fact that I have had so much support here, I need to give some back.

hugs and hand holding for all who need, as always

That is good news OP. Unsure what the difference between half and full remission is, but that he can go back to work says a lot and sounds very positive. Does he feel well enough to go back to work, though?
They are to keep a scrupulous eye on him with 3 monthly CT scans, which is both reassuring but also "PATFUL". There is never a pro without a con in this life I have learned.
Good Luck.

Hello MrsS - I feel horribly guilty that I didn't keep up with your last thread and therefore missed this one until now! I've been an MN lightweight though for the last few weeks.

I hope the remission is complete - and long-lasting! I can understand your bewilderment - this has been your focus for months and now it's taken off the boil, as it were, while still not being completely over. You'll find a new "normal" again pretty soon though, I think.

Echo - your DH's PSA (prostate specific antigen) levels are an indicator of problems, as you have realised; the hormone levels will be a different substance (although I can't remember which hormone they test for). My Dad had Ca prostate a few years ago, and he had an 8 point needly biopsy of his prostate, of which 2 came back positive, one was dodgy and the rest were clear. Because of this, he only had radiotherapy for his treatment and it was successful. He still goes up to the Royal Marsden every 6m for a check up, and has his PSA checked every month to ensure it stays under 4. So far, so good! Up to you entirely but you might want to have a look at this lady's book Prof Jane Plant - she herself had breast cancer 5 times and then managed to get rid of it after some interesting realisations. She's no quack - she was the geologist to the Crown at one point.
Anyway - it can't hurt and it could help. She has also written another one, more personal to her, about breast cancer.
Please note: at no point should these suggestions I make be taken to be "instead of" conventional treatment - only ever as an adjunct, and only if you want to.

Similarly I'd like to link again to the Penny Brohn Cancer Care unit in Bristol - there for advice on diet, lifestyle, counselling services etc. but all to go alongside conventional cancer treatment.

I hope Daisy is ok - and that her DH is actually resting from work a bit now! :( for her.

I'm only here to hold hands and offer the occasional bit of hopefully useful advice, my parents, niece and other family members have had cancer, with varying outcomes, so I have some idea of what it's like but not in any way like you are going through just now.

Mrs S It sounds like such good news, but I can truly understand why you are cautious and confused. I've felt the same way since our 3 month scan which showed the complete opposite of what I expected. I am really mistrusting too. I can not believe they have got the right person's results!

I am thrilled for you both - remission is a big old thing especially once things have settled and you have the time to grow your confidence again. And do stick around. Please!

I haven't been on the thread for such a long time I've lost track of who is on it. I'm sad there are some new joiners - I wish none of us had to be here.

Mr D has improved since December; he had chemo no 5 two weeks ago tomorrow and so far has had no real trouble with it. Side effects are completely different to the previous 4 and thank God that bizarrely, given the weather, there are few problems with the cold this time. He did need yet another blood transfusion the day after chemo because his hB had plummeted to 9 again which has helped him be a bit perky.

And I am getting him to take it a bit easier! I had to threaten to go to my Mother's if he didn't, that combined with the threat from the oncologist that chemo would be cut short if he ping ponged in and out of hospital again with this round has worked. He is working from 0800 - 1300, and then resting at home until 1545 when he is allowed back to work for 45 minutes. I am being such a tartar , but I'd had enough of him dragging himself in a super human fashion through a weeks outdoor work and then getting ill or distraught or something every weekend. So far so good. We have one more round of chemo and a scan (so not looking forward to PAT coming to stay; I'm not sure I'll handle her well this time) then we are off on our own for 3 months to see what happens.

I think I need to do some research into how to keep Mr D on the straight and narrow once the very solid crutch of chemo has been taken away. We have had two treatments delayed over this cycle and each time his mental strength has really struggled. Somehow he needs to wean himself off the crutch and believe that his body will be OK. Tough. Especially as I don't think he has adjusted to how badly his body has let him down over this. We both read the story of the actress who died in her early 40s from PEs with deep shock. Her story was so very similar to Mr D's and we had managed to put to one side how close we were to disaster in August.

Sorry. Mammoth post. Serves me right for not updating sooner.