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.

Echo sorry this is happening to you.
Sending you a big hug
X

Thanks,we told all the kids tonight what it is all about,all the ins and outs.

They are older so a little easier,but it does mean they have questions,DD is upset,so are the boys but somehow they are easier to handle.

DP is getting back to work tomorrow which is a good thing.

First hormone jab is on Friday.

I'm sure he will have been told about the side effects, Echo, but my Dad found the hot sweats to be a right bastard. Just to warn your DP. Sorry to hear that he has prostate cancer but hope that it is contained.

MrsS - just read back and seen your thread on things in your head going pop - I'd say that it's a result of you trying over several weeks/months to keep a lid on your natural reactions to things, and it finally boiled over.
You could look at it as a huge frustration pimple - now it's burst and all the poison is expelled (for now) you'll be able, hopefully, to go back to handling it again, until the next time it needs to burst. Or you might be able to find some de-frustrating techniques that will allow you to antiseptically squeeze the frustration pimple before it gets to bursting point.

Did you find that you calmed down again a couple of days later, or are you still in the same mind-frame?

Sorry to hear your news echo x

sorry to hear sad stuff going on. hand holding service still on full power despite mushed brain. hope treatment goes well. Once treatment starts things seem to be "in action" rather than all this waiting business, so somehow better. cry, hug, read all info you need and cry some more.

Echo
I know 2 men personally who had prostrate cancer, but they were over 60. Both decided < it had not spread> to have the wretched thing out and be cured for ever. Another was younger and wanted to keep his and lived a further 20 years taking the hormones. but eventually it broke out and he died in his 60s. The latter happened over 20 years ago, so I would think the management of prostrate cancer has advanced since then. The 2 men who had theirs out was just a couple of years ago.
Prostrate cancer is known as one of the tame/non-aggressive cancers. Fingers crossed that this is the case with your DH.

I started a thread in chat about telling estranged family,the outcome is that we won't be,telling,that is.
The consultant did say that in young men (51 is young for this) that the cancers tend to be more aggressive but he's going to take all the drugs and therapies there are.
He is pretty fucked up about his body letting him and us down,frightened of the hormone treatment,pissed off about all the time he's going to have to spend talking to Doctors and getting treatment,silly sod is more worried about me.

He only found out because he accidentally wet himself running to the loo and i made him go to the doctor.

Sorry,i have been a bit self absorbed on here,i know all of you have your worries going on too and i do wish you all well.

Sorry,just realised i nced for the chat thread and forgot to change back.

Echo, I should think you are both actually pretty thankful that you did force him to go to the doctor - at least they've found it now and not later, when it might have been a lot worse.

In the end, he should look at the long picture - yes he might be spending a lot of time in the near future talking to docs etc., but that will hopefully mean he spends a lot more time in the far future with you. He just needs to extend his focus a little (not easy, I'm being a bit trite, sorry)

Echo, I am sorry you've had to join us on this thread. It's full of lovely people who, without exception, would rather not be here. Fear and anger are very closely related emotions, we've discovered.

Mr D is STILL in bloody hospital. It's fast approaching 2 weeks now. General medical are convinced he has an infection but can't find any trace of it. Cultures aren't growing anything, he has had an ultrasound, a CT and echo on his heart and lungs and not a sausage. His temp varies between 36.4 and 37.6 which apparently makes them unhappy and he has a significantly raised CRP.

I am so fed up. I want him home - and I want them to start applying some urgency to sorting him out. He's on the bad ass ABs again, but the consultants are frustrating me beyond measure. Today's visited without even fucking bothering to read his file and was operating on information that was a good 24 hours out of date. I have requested a meeting with them tomorrow when I will ask them what they are playing at. It just isn't good enough. We don't have all the time in the world.

Did I mention I am fed up? Sometimes, I wish we could just get off; that it would give us a bit of a break. I am home alone and our house is up a bloody byway - we don't even have any passing traffic. Our families are many, many miles away and our nearest neighbours are at least a mile away. Without trying to throw a pity party, I feel so isolated. It is tough here at the moment.

Daisydot no wonder you are fed up! How old are your DC?
Two weeks is a long time to home alone, my DH was in with a suspected infection for 5 days and that felt like forever.

We had a real faff trying to get him home. My friend who works in the hospital said they are very careful with younger cancer patients on chemo as they don't want to risk sending them home ill.

It turned out my DH didn't even have an infection after 5 days of blood tests and IV antibiotics. V frustrating.

DH picked up chemo tablets today, bracing myself for this next rollercoaster

Daisy, you're not alone...get thee to mn

I think by the nature and taboos surrounding cancer, it's isolating anyway, but to be stuck in the middle of nowhere geographically as well can only reinforce the feeling.

Hellen - agree with what you said about the hosps being extra cautious. DH not particularly young at 46 but they still were very timid about declaring him fit enough to go home after chest infection. presumably it was the bonus neutropenia that made them so, but tbh he was less at risk of infection when at home than in hospital!!

DH still recovering at home. he has a date set for going to work but has had a home visit from his new line management today and many more hoops to jump through with occupational health etc before he will be able to work. hope they get their act together and do a decent phased return for him. I'm still stressed

DP had a hormone implant put in his stomach today which will be done now every eight weeks.
He has to have another MRI on Monday,he is self employed and we are getting near to being skint so he has to go back to work soon.

Feeling for you Daisy,at least DP is at home.

we have a week of DH jumping through occupational health appointments and meeting with line management. Clearly none of them know much about cancer as they all want to know if he is "better now"
FFS. Better than whom or what....don't get me started, grrr!! Meanwhile I've surrendered and got ADs. Probably committed professional suicide and told the boss I'm on them. said Boss was genuinely concerned, so thought honesty was the best way.
DH still extremely unfit, regaining some bumfluff style hair and muddling along with everything, appears a bit zombie style if I'm honest and his memory is absolutely dreadful. He forgets absolutely everything (very perturbing when he's known for remembering absolutely everything). This isn't actually getting any easier.
Hope everyone is doing ok, I think of you all a lot. positive vibes for treatment to those who need them.

Hey there MrsShrek3.

Thinking of you too,don't really know what to say,it's all bloody rubbish isn't it.

I do think it scares people though and they don't know what to say either.
DP is getting fed up with people asking how he is and making him feel 'defined' by this thing,people who wouldn't normally just ask how you are and how you're feeling.
What is he supposed to do,get into a great big spiel about how he's coping when he's at Tesco?
And they ask with tilted heads and concerned expressions and sad tones that annoy him.

It must be harder for employed people to have to keep explaining to work,i hope he has understanding employers.

Hi everyone, heres an update on my dh:
Went to see consultant for results yesterday, he explained to my dh the 5 stages of biopsy results for the nodules (tumor ?) on his thyroid.
1=inconclusive
2=benign
3=85% benign
4=suspicious
5=malignant
My dh is a 4.
So..more waiting, he is to have a part thyroidoctomy in 1 months time.
Consultant said my dh shouldn't go away thinking he has cancer, he said he wasn't telling him that, but we still don't know.
I wish I had gone in the room with him, but I thought best to stay in the play area with our 3 yo, I would have asked more questions.
I just want to keep asking my dh to go over it all word for word.
At the ultra sound 3 weeks ago, the nurse there said lump is all in one area and hadn't spread, and when dh told me that I felt a huge relief, that if it is malignant it could all be removed, now I'm thinking all sorts and feeling worried again.
Dh has already told me off for worrying too much as he isn't, he is just dreading a night in hospital, and probably missing me
Does anyone have an idea of what could happen afterwards ? If it is malignant ?

fingers crossed for you 2sugars. DH had an exranodal tumor on his thyroid so we read up on this stuff. many things it could be but all very treatable. imho the consultant can't be massively worried as they're waiting a month. DH was in for tissue biopsy within days and on chemotherapy 4 days after the result. please try not to worry yourself silly - easier said than done if you want decent info, check out Macmillan and cancer research websites. both good. CR tends to have lots of factual stuff

Thankyou mrsshrek will be back tomorrow. I feel comforted reading that, I read it out to dh x

hope everyone is having a nice half-term
dh has 2 cycles left and a CT scan in March after he finishes chemo.
I am so tired all the time. I look about 180 years old.
Everyone keeps telling dh how well he looks - and he does. He may not feel it but he looks really well. The irony!

yay for DH corny
ditto him looking better and me looking and feeling a few hundred years old. you and me need a spa day or summink

anyone else doing the bleeping stupid worry-nightshift? sigh. ridiculous stuff. esp as DH is snoring his head if, oblivious. he has v swollen legs and am (nagging) encouraging him to see GP today. no clue what's caused that

Hi............why haven`t I seen this thread before? My dh was diagnosed with bowel cancer in Feb 2008, it had already spread to his liver, we were told it was stage 4. Two years ago it also spread to his lungs, he then went onto a trial using a mab (monoclonal antibodies) and he has been chemo free ever since and is currently in remission! Our trio were only 9 when he was diagnosed so its been very hard. Good luck an keep strong xxxxx