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Original poster

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

741 replies

MrsShrek3 · 30/12/2012 19:51

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

OP posts:
MrsMaryCooper · 26/03/2013 17:42

Hi gingeroots & lisad*

He has been diagnosed with chronic lymphatic leukaemia. We will get the results of the staging tests back on the 17th April. It has been a long 3 weeks wait so far. It will be another 3 weeks till they come back.

He is very upset and extremely tense, sleeping badly, reduced appetite. I think that I am still in denial.

Twosugarsplease · 26/03/2013 18:04

Sorry to hear that mrsmarycooper

gingeroots · 26/03/2013 18:10

Oh MrsMary that wait is so cruel ,the 17 April must seem like a lifetime .

I'm so lucky that my tests are going through so fast .

Denial is not a bad thing - just your mind adjusting to the shock .
You have no choice how you react anyway .
You can only do what you can do .

hugs

digerd · 26/03/2013 19:28

2sugars
With my DH, they could tell from the biopsy analysis whether it had got to the spreading stage or not, which it had. In 2 weeks he was in hospital having his chemo 6 month cycles.
Thyroid cancer normally stays in the Thyroid for a long time.
Did they say what type it was?

Twosugarsplease · 26/03/2013 20:08

No digerd they didn't tell him what type, I've just asked him there to double check. Maybe after the surgery, I will make a point of reminding dh to ask when cons does hhis rounds
I have read through all the info and Macmillan package and I'm guessing one of the first 2, papillary or carcinoma ??
I read out on the list things to eat and not to eat before RAI treatment, seafood, dairy products amongst others to avoid, but to have fresh fruit, veg etc AND beer and wine ! Honestly ! So he is doing as he is told and having a beer as we speak.

digerd · 26/03/2013 20:28

Really?? Beer and wine. Well, I never .
Do you have a date for his second op?

Twosugarsplease · 26/03/2013 20:33

They just towards end of April.. No hurry then ! Confused

lisad123everybodydancenow · 26/03/2013 20:56

This reply has been deleted

Message withdrawn at poster's request.

EchoBitch · 28/03/2013 00:30

How do your DHs, partners deal with having cancer?

DH is self employed and hasn't been out to work for weeks.

He says he is not depressed,i try to encourage him gently to go and do half a day at a time's work.

I get the arse when i've been out and i get home to a sink full of washing up and the dinner to cook....blah,blah,blah.

We are living on tax credits and my measly earnings and some money i inherited,i will be better off after my Mum's house is finally sold but at the moment we are skint.

He is drinking too much and if i question either the drinking side or the financial side of anything he gets defensive.

Three times in three weeks he has come home in a taxi because he has left the car at the pub,admittedly,he has got in at about 8pm,not late,but dinner is usually waiting at that time or being held back or already eaten and his is in the microwave with a plate on top.

I am worried that when the house is eventually sold my half will just get frittered away.

This makes me sound like a total bitch.

lisad123everybodydancenow · 28/03/2013 07:46

This reply has been deleted

Message withdrawn at poster's request.

Hellenbach · 28/03/2013 08:39

Echobitch my DH is self employed too, our income has massively dropped and we are using savings to keep going. I am also now looking for work too, we need the extra cash.
I went to CAB and Macmillan about benefits but to be honest they weren't much use. It was a friend that told me my DH could get Disability Living Allowance. His nurse agreed and helped fill in the form (Macmillan do help with this too) and we are waiting to hear back.

My DH has been very depressed. To be fair his life has changed so much and he used to love his job. Now he manages one day a week and it wipes him out. He does naff all at home. It drives me mad. He was prescribed anti-depressants and they really helped and then he stopped taking them!

We do have a Macmillan nurse but she just said he is an adult and you can't make him take pills.

It's natural to feel resentful, we have to act all supportive whilst we do everything. I know how it feels x

gingeroots · 28/03/2013 08:43

Oh Blimey Hellenbach and lisad.

Could you ask GP or MacMillan about counselling ?
Thinking of for DH ,though realise he may not agree but could at least know it was there if he changed his mind .

Or for you guys ?

Original poster
MrsShrek3 · 28/03/2013 18:54

got that t-shirt too. yy to doing everything, going to work, cooking etc and running round after kids...him being in all day and not managing to even shift his cup Hmm Then the guilt trip for feeling annoyed with him. Finances were shit here too as he only got ssp at 85.85 a week.
the months he had off work after his last chemo involved me leaving him lists. As of new year I went to work and he was the housekeeper Grin

OP posts:
Original poster
MrsShrek3 · 02/04/2013 10:09

just saying hi before the thread falls off my TIO Smile

Thanks
OP posts:
cornygrigio · 03/04/2013 20:48

just checking in and putting thread back on TIO as well Smile
nothing to report here - currently waiting for results of the scan

to everyone who needs one!

lisad123everybodydancenow · 03/04/2013 21:22

This reply has been deleted

Message withdrawn at poster's request.

Twosugarsplease · 04/04/2013 09:24

Hi all, we're still waiting for a date for my dh's op to remove the rest of his thyroid.. Then the RAI treatment can start.

Also keeping thread going as been an absolute god-send Smile

Original poster
MrsShrek3 · 04/04/2013 10:29

hugs 2sugars... far too much waiting going on there Sad

Dh next consultant appointment on 17th and with 2 weeks to go I'm doing all nighters again. That revolting Pat is back Hmm
ffs.

Thanks and Brew to everyone.

OP posts:
Twosugarsplease · 04/04/2013 13:17

Hugs to you too mrsS.....more waiting for you also, it's just crappy isn't it.
I remember my first post and how sickeningly terrified I was that my dh might have cancer, and here now 5 months later, been dx just a week ago and all is strangely calm !
It just seems to be our life for now, how my brain has has got round this I don't know, but it just has ! Do you find that too ?
Just got a letter this morning to 'remind' him ? That he was dx with cancer and that he is awaiting treatment Confused
It also told us it is papillary thyroid cancer, up until today we were not sure which type it is.

cornygrigio · 04/04/2013 14:14

twosugars I absolutely agree ...it becomes your life...always waiting for something, be it an OP or a scan. I think we found the actual chemo the most disruptive as it went on for so long and also the OPS - particularly when he came home

Inaminutenow · 04/04/2013 21:29

We're waiting, too. DH has now had an appt on Mon for 'per-assessment' for chemo, which would indicate that there'll also be an assessment appt, before the treatment starts? His eating has actually been pretty good recently.
My parents are staying with us over half term, so apart from going to work, I don't have to do much at all, which is nice. I had thought that chemo treatment would have started by now!
Hugs to all of you and fingers crossed things will go okay.

gingeroots · 05/04/2013 09:05

Inaminute do you have a specialist nurse or someone you could phone to ask ? Maybe the chemo department ....?

Or could you ask your GP to find out for you ?

I'm not well up on these things and I'm sure it must vary according to type of cancer and chemo ,but I'm due to start chemo on 16th of month and have been given one pre assessment appointment 3 days prior to this .

So thinking it's a possibility that your DH might only have that one apt ?

But just remembered ,I have already had an appointment where you have side effects pointed out and you sign to agree to treatment - like giving permission for an op .

Sorry if all I've done is increase confusion !

Thinking of you .

Original poster
MrsShrek3 · 05/04/2013 10:33

good luck with the chemotherapy, ginger. DH also had just the one pre chemo appointment, three days before his first treatment. I went with him, as it was an hour long and loads of info. it was awesomely well done and began with him doing a questionnaire on an ipad and it picked up all his concerns and questions Smile

OP posts:
Inaminutenow · 05/04/2013 22:39

Thanks ginger and MrsShrek, DH has already signed the consent form for the chemo in his appt with the oncologist, so treatment may actually start towards end of next week... We've got the number of the specialist nurse, but I'm not quite sure what kind of stuff she deals with / what kind of questions she can answer... I had actually rang her in the end to find out whether anything was happening re chemo, but I'm still at the point of not wanting to make a nuisance of myself.
Hoping that something can start to be done to keep the cancer in check, but I'm also quite scared of the side effects Confused
Good luck with your treatment ginger!

Original poster
MrsShrek3 · 06/04/2013 01:32

any idea what your dhs chemo is, inamin? in case any of us have any pointers? there are loads of different "regimes" ( isn't that the word?) but fingers crossed someone might know something. Dhs main side effects were allergic reactions to the rituximab (antibody) during the chemo session, quite common apparently, and also numbness in his hands and feet, all now disappearing. obv hair loss and so on, but the meds he was given for other well known side effects did their job and he didn't have much sickness during the treatment. Try not to worry - easier said than done, but you will get through it. as strange as it sounds, when the treatment starts it will start to feel like something is being done and although all very scary, you're getting somwhere iyswim.

OP posts: