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

(742 Posts)
MrsShrek3 Sun 30-Dec-12 19:51:20

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

gingeroots Sun 05-May-13 11:50:28

Lizard my guess ( for what it's worth ) would be that " discussion with one of the team " would be to give information about what they've found so far and possible treatment .

They wouldn't need to discuss liver test I think . I presume ( though confess I dont know ) they just book it ... ?

Good luck ,it does sound as though you're nearing a diagnosis and plan .

Dont forget to try and pin them down about results of any liver test - what's shortest/longest time before you hear .
How will you hear ? Can you ring consultants secretary to find out when results have arrived ,obviously not to learn what the results are . That sort of thing .

lizardqueenie Sun 05-May-13 13:09:01

Thanks Ginger thanks this is what I think and kind of hope for too. I know it can be a long journey but it has been months with no final answers. i am not blaming the doctors they have to do what they have to do but we just want to know what we are dealing with.

Thanks for your tips with questions too- thats very helpful.

Has anyone experienced with their DH/ DP that they just want to go by themselves? DH was telling me last night "i am old enough to go by myself". hmm to which i said i know you are darling but i want to be there for you. I think he thinks i am going to pounce on the doctors! That and him throwing himself into his work makes me think he is just trying to distract himself and deal with it the best that he can. Not quite sure how to deal with that, just to back off and give him space sad

gingeroots Sun 05-May-13 13:57:57

That's interesting lizard because I'm very much a " I'll go by myself sort of person " .

And I'd also far rather spend the 6 hour sessions of chemo not trying to make conversation and worrying about whether my well intentioned friend has drinks and food and is comfortable on the stacking chair .

I think it's partly because I don't want to have to worry about how who goes with me is feeling and also because I feel I can be more myself show fear ,cry , and ask questions that I think will upset my DP to hear etc .

Having said that I recognise that it's a selfish approach and that some consideration has to be given to one's partner who is also going through huge sh*t .

So I think maybe all you can do is acknowledge your DP's wishes but explain that for your own sake you feel the need to go with him .

cornypringle Sun 05-May-13 14:05:25

my dh mostly went to appts by himself. He went to all the chemo appts by himself.

lizardqueenie Sun 05-May-13 18:26:59

Ginger & Corny. I think you have both hot the nail on the head, I can completely understand why someone would want to go alone- truth be told I'd probably want the same myself if the shoe was on the other foot so to speak.

And I recognise what you mean about not having to worry about someone else's emotions whilst you are trying to handle it yourself. When DH was first told about the adrenal tumour it was a big shock, as it would be for anyone but he went alone, & said he was so shocked he had to tell the dr to tell him again. I thought if I was there with him at least he wouldn't have to explain it all to me over the phone like he did that time, him at the train station & me in my office surrounded by people. I just want to help him be prepared.

lizardqueenie Sun 05-May-13 18:33:26

Helen, have sent you a PM, hopefully it made it through this time smile x

lisad123everybodydancenow Sun 05-May-13 20:41:22

Message withdrawn at poster's request.

MrsShrek3 Sun 05-May-13 21:24:11

Lizard, DH wanted to stay by himself for most of chemo days. I went in with him at the start of the day (or mil did) then we left after about an hour, maybe less. Then I went back for the last hour and a half (6-7hr treatment) which he was happy to have me there for as he generally felt rubbish as well as bored, and would have found it very hard going to get through that alone. I generally turned up with fruit sweets or mints to give him a boost smile
do whatever works for you / your other half.

MrsShrek3 Sun 05-May-13 21:26:18

OTOH we have done every other apointment together since diagnosis. He doesnt remember it all and with me there we can hear it together and clarify what was said if he didnt take it all in.

lizardqueenie Sun 05-May-13 22:09:59

MrsShrek sounds like you have really tuned in to what your OH wanted there, coming back at the end of the appointment must be really nice for him to look forward to.

I think the diagnosis/ chats with drs is what I feel I should really be there for - to ask more questions & make sure one of us is taking it all in & between the 2 of us we should be able to remember. You know we aren't even at diagnosis yet, although I suppose this could all change soon & I feel so frightened about how we/ I am going to manage this. I don't mean to be downbeat, and I'm new to this thread & don't want to bring others down. There is nothing fair or straightforward about this is there. It's coming to terms with that I'm finding so hard.

Thank you all for your comments & support, you are a lovely bunch of ladies x

Inaminutenow Sun 05-May-13 22:57:10

Hi, DH started his second cycle of ECX on Friday, first one went really well, minimum side effects, but waiting for swallowing to get better. So far, so good, just glad he's tolerating the treatment so well. I have very much done same as MrsShrek, gone in to the unit with him for an hour in the morning, popped back lunchtime and then picked him up at gone 4pm. For much of the time there he's keen to not get dragged into any conversations, as invariably they turn to cancer experiences and he's really not wanting to chat about that. So there he sits, with huge headphones and his laptop, watching Eric Clapton DvDs...

I managed to have a chat with the oncologist on Friday, just for clarification whether the tumour really cannot be removed, shrunk enough by chemo to make that feasible. She said that obviously, if a scan showed vast changes, they would revisit this, but not to get any hopes up.

I hadn't planned this, it just came about, and DH was cross that I had had a chat behind his back. However, surely there are situations that I might want to speak to someone without him there, no? What is your experience of this? I have also had the phone number of the palliative care specialist nurse, in case I need to speak to someone...

I'm scared of getting to the point of where the s**t hits the fan (sorry about the language), because up to this point life hasn't changed much, other than DH struggling more with eating than before and having to bring up some weird spit (sorry if tmi) mid-way through every meal with lumpy bits.
Sending hugs to you all and good luck with any upcoming appointments!

MrsShrek3 Sun 05-May-13 23:21:30

inamin don't be sad you didn't go behind his back as these thing for.just crop.up. DH was much the same - It is understandable that you feel so out of control on this cancer journey that you have to be control-freakish about the little stuff. have husband from me. been there. explain to him you understand, if appropriate. (and otherwise ignore ignore ignore wink )
lizard you're not bringing anyone down. it's what we are here for and we all have the t-shirt remember. it honestly is how we roll. nobody's smiley all the time. or even half of it wink we all have many many shit days and it was through that shite that the thread came about. there is only just so much crying and worrying you can do alone. sharing with like minded nutters and insomniacs is such a help grin

MrsShrek3 Sun 05-May-13 23:22:38

sorry about random punctuation and strange auto-corrects.... blame my phone hmm

lizardqueenie Mon 06-May-13 04:02:41

Inamin it's good to hear your DH's treatment has started off well & I'm pleased you got to have a chat with the dr, I think it's true that there are times you may want to talk to them, maybe ask questions you can't in front of your DH & you just took the opportunity whilst you saw her- it wasn't Pre- meditated & all in your DH's best interest so please don't feel bad.

MrsShrek thank you, thank you. I feel I'm having to be so strong in RL people don't really know what to do/say when your upset but sometimes I just want to have a chance be upset & then move on. And you are right about the insomnia. Our DD is 2.6 years old & I never thought I'd be laying here awake whilst she (and DH) are both snoring their heads off wink

gingeroots Mon 06-May-13 09:02:46

Hello everyone .
lizard an earlier post of mine didn't make it ( think I pressed wrong button ) but I was suggesting you chat to DH and try and explain that you understand his wanting to go alone and that you think you can understand some of his reasons but that you want to cope with it all as best as you can and to do that you feel you'd like to be there for discussion as well .

I wouldn't suggest vocalising this to him but " just " because he's got this crappy disease doesn't mean that his needs always trump yours . You've got to go through it as well as him and to try and get through it you need certain things as well .

As a plan B I'd go to the hospital with him and wait while he talks to whoever it is and then be with him .

Maybe walk round Ruskin Park afterwards if it's Kings or the river if it's St Thomas's .

And on the sleep thing ,I've found night time Kalms quite good . I needed to take maximum dose which I think is 4 and to be careful to take them an hour before bed . Also I think the effect is a bit cumulative so keep taking them even if they don't seem to work initially .

Or go to the GP and ask for something . Mine has given me a very small supply ( I think 6 tablets ) and although I rarely use them I find it a comfort to have them . Even to the extent that when I'm sleepless I think ,well if this continues I can always take a tablet tomorrow night .

Hugs and keep posting here .

gingeroots Mon 06-May-13 09:10:52

inaminute so glad second chemo is going well and brilliant that you got opportunity to chat with oncologist .

Just swallow DH's annoyance and reassure him that you'll always always tell him any information that you might pick up without him . Not that you're looking to of course .

I suppose if it were me I'd be worried that people were withholding bad news from me and conversely that if any worse news were around I'd want to have the opportunity to choose to withhold it from people close to me . Even if only until I'd got my own head round it .

Not that I'm an expert ,just my view ,we're all different . And can vary from hour to hour smile .

lizardqueenie Mon 06-May-13 14:54:13

Thanks for your advice Ginger, I think i have convinced him for me to come along now and I make less of a deal when its "just" a scan/ blood test. Its all swings and roundabouts so I try to give a bit where I can ;)

Depending on what kind of news we get on Wednesday (although we haven't spoken about this) DH plans to go to work. I am going to book the day off though, my mum usually has DD on Wednesdays so I'd like to be around in case DH needs me in the afternoon or at least got some stuff done indoors. My work have been pretty understanding actually which is a blessing.

Thanks for the tips about the Kalms. I might try those before i go to the GP for anything. I am ok as long as i don't wake up during the night. If i wake up its fatal!

Hope everyone is enjoying the Bank holiday as much as possible, I am just pleased with the novelty its not raining for once! grin

Inaminutenow Mon 06-May-13 20:40:26

Thanks MrsShrek, lizard and ginger. Hope you've had a nice bank holiday. I took the children to a road race in town, so that DH had quiet time to chill / sleep. He's quite irritable at times, especially if the children are noisy which they are most of the time...
Lovely day though, children really enjoyed it.

gingeroots Tue 07-May-13 08:57:11

He's lucky to have you Inaminute .

Hope you get some rest yourself flowers .

I'm currently addicted to M&S tinned chicken noodle soup . It doesn't sound very exciting but is really delicious ,slips down super easy and seems to satisfy a desire for something meaty .

Oh and Sainsbury's taste the difference cottage pie with cheesy mash is another favourite . Though at £3 a pop ,even on special offer ,it's not cheap .

I abandoned trying to eat same food as family weeks ago .

Inaminutenow Tue 07-May-13 21:22:06

DH has gone off most foods, because of the weird taste in his mouth sad. Living on fortified drinks, toffees, humbugs etc for now.
He's never been massively involved with the children or stuff around the house; I have been tempted to write something on relevant threads in the past... So I'm pretty much doing what I've always done. Only I'm not getting annoyed with DH now.

digerd Wed 08-May-13 07:15:07

My DH also complained about the taste in his mouth from the chemo and everything tasted the same. I had to spice his food up for him to enjoy it.

lizardqueenie Wed 08-May-13 19:07:54

Evening all

Hope everyone is doing well?

Ginger that chicken noodle soup sounds nice actually. I say have what you fancy and what feels good ;)

Inamin sorry that it feels you are carrying everything by yourself. It must be so hard because everything else still needs to continue doesn't it? Kids still need to be fed/ entertained/ bathed etc. is there anyone that can offer you a bit of extra help like family, or even someone to do some housework or ironing for you now and again? Make sure you are looking after YOU too.

So Ginger you were right "chat with the team" was just that. We went to the liver dept, we did think that they may have discovered something in his liver too. Thankfully not, but the consultant who works on the liver department also deals with pancreatic issues. I am sure there is a better way of putting that.

Anyway, no final diagnosis as yet but DH has to go for a endoscopy so that they can take fluid from the growth see if there is anything else going on down there and then make a diagnosis from there. They are testing for 3 "markers" and if any of those are raised he said they will not hesitate to have DH in and remove part of his pancreas and possibly his spleen in order to treat it. The dr was good in explaining how this procedure would take place what it would mean for DH, how log he would be in hospital. The other, of course better outcome is that it is not showing any signs of being cancerous or pre-cancerous and they will monitor him with scans every few months or so.

DH came out and looked pale and felt unwell, he went off to a meeting hmm and then had lunch with a colleague in Wagamama which made him feel better. So hopefully we will know more in the next few weeks.

lisad123everybodydancenow Wed 08-May-13 20:35:29

Message withdrawn at poster's request.

MrsShrek3 Wed 08-May-13 22:58:49

yes huge yes, lisa. Hope I am not speaking out of turn but Corny and I are in reach of Manchester and I know where you are <taps nose> wink sounds stalkerish grin

cornypedicure Fri 10-May-13 18:17:41

yy from here as well to meet up smile

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