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.

frosty that's lovely .

Tolly big hugs . You sound calm but I imagine you're not . It's such a shock isn't it ?

But a relief to know and to be able to move forward .
Do you have children ?

So shocked about daisy's news!!!
DH started chemo treatment (ECX) on Friday and thankfully no side effects (yet?). So we are finally doing something against the cancer, thank God. I'm totally in awe of DH and how well he's handling everything - I would never be this strong... Hugs to all of you!

gingeroots, I do feel strangely calm at the moment. Although we only had to wait a week for the confirmation, I think we both knew, so it wasn't a complete shock. Until he goes in for the op, life will carry on as, well, normal for the next few weeks.

Perhaps it will hit me when things start happening, operations and treatments and worry about what happens next.

We have a dd, who is 8. We have told her the truth and she seems to be ok at the moment. Sadly she has already experienced the deaths of both my parents in her short life. Not that dh is going to die, but she has seen family members go into hospital and not come out, so I imagine this is going to be a worry for her (understatement).

torianaI think getting the dx and hearing a treatment plan is reassuring .
And good that the op is soon .

Hope your little one copes ok with news .

inaminute ,glad your DH has started treatment .
Keep us posted how he is .

toriana sorry you've had to join us iyswim. but fab people here

Daisy
I have pm'ed you with details of my friend.
Hope you are coping x

More hugs Daisy. here whenever you need.

DH had his 3 mth appointment today...far too much waiting and some strangeness over blood trust results. am

What's the strangeness Mrs S?

And thank you all for hugs. Things continue here - lots of things to worry about and there remains an enormous hole left by Mr D. It is fucking huge.

Toriana - sorry you've had to join us. Stick about, this thread will help a bit.

Helen - thank you so much. Have PM'd you.

Inaminute - glad the treatment is going OK - it is the same combination as Mr D first had, so if I can help, let me know.

daisy good to hear from you .

Am sending a magically self replenishing series of hugs your way .
Am so so sorry for your loss . What a cliché I know . But I really am .

Toriana how are things ? I have found that things hit you in waves ,and then recede a bit .

Inaminute - I started on ECX this Tuesday and found the first couple of days a bit draining ,but am feeling better now . Which is what the nurse ( but not the written info ) told me to expect . I guess a bit depends on dosage .
PM me if I you would like to share any info /ask questions .

Mrs Shrek thinking of you today .Let us know how it goes.

two lots of blood tests. saw consultant. bugger all the wiser afterwards. again. sigh.

still thinking of Daisy every five minutes. I seriously hope you can feel these hugs, my friend.

Hello all, sorry again for being away for a while, you have all been in my thoughts though. Various reasons: mainly work was manic due to backing up while DH was in/out of hospital and had to be finished by end of march. And some other medical dramas with family/friends Work at least is now calmer.

DH had scans in Feb which were clear, next ones in May ? life just seems to now consist of little chunks of time between scans I find I can?t plan very far ahead, not beyond next scan ? not very practical . End of March was 1-yr anniversary of the week DH was made redundant and found a lump?.what a year. Some red patches have appeared next to the graft which he is worried about but refusing to get checked out (in great ostrich style) trying not to panic about recurrence, could be circulation issues from the graft..DH has also found temporary work 3 days a week which is a miracle. Is enough as leg swells up a bit, but good getting him out of house .

For background to those new to thread DH had a sarcoma removed from his leg. He hasn't had chemo so we've no direct experience of that but can do hand-holding on everything else - sleepless nights, paranoia, PAT, juggling work with hospitals and all the household chores, depressed DH's, upset DC's, stretched finances, confusion, hospital stays etc. etc. (And confusing appointments MrsS is there anyone else you can ask to explain it to you ? anyone else involved like a nurse maybe? Our Macmillan nurse is easier to chat to and will go and find things out for us when we are confused by consultants)

Daisy it must be awful trying to comprehend the immeasurable hole that you have. Echo what MrsS said, you are on my mind. Sending you more love and hugs

Turning - get him to the bloody doctor. Early action makes such a difference. Don't let him ostrich it.

MrsS - do you have a specialist nurse? If not, the GP will be able to explain the results to you - can you ring and leave a message to ask them to find out what they mean and then come back to you? For all the failings of our GP, he was brilliant at that.

Toriana - how are you doing?

Today, I have to choose an outfit for MrD - and I've been avoiding doing it. The funeral director has very gently insisted I do it today, so I know I have no choice. The coroner has opened and adjourned an inquest into MrDs death, and our GP has phoned to admit liability. The more people admit it, the more horrified I am at the moment, tbh.

I am in such an odd place. I can't really cry - if something really upsets me I have no tears and just an odd noise comes out. I can talk about funerals, death, MrD passing and all sorts of things reasonably normally; although I expect I am a bit brittle. I am so very broken by it that I'm carrying on as normal. The shock of him going so unexpectedly, coupled with the issue of blame and neglect may have fucked me right up. I love him so, so much.

Also today, the GPs and palliative care are holding their major incident meeting - I managed to hand deliver my letter and questions to them about it last night. I have never found it so hard to concentrate in my life! Still. It's done. The funeral is next Friday, so I am hoping I can concentrate on just that until then. The private service at the crematorium and the thanksgiving service have to send him on his way with as much love and support as I can find.

Happened to come across this thread, and just wanted to say to Toriana that I'm a long time colon cancer sufferer. I'm "long time" because my cancer had spread by the time it was discovered so I needed several chemo regimes as well as surgery on both the colon and my liver - it sounds as if your DH's cancer has been discovered earlier so hopefully his treatment will be straightforward and speedy and curative. My youngest DD was 9 when I was diagnosed and I had to have a temporary colostomy so please do ask me any questions as and when.

Reading your posts confirms what I thought often during my cancer treatment - I'm sure the whole bloody "journey" is in many ways harder for the patient's partner than it is for the patient. And daisy, your story is so so sad.

Good luck to all of you

I am ok at the moment, thanks to those who asked. We are due to see the surgeon on 1st May, so hopefully that will give us some more assurance about the surgery and the likelihood of a colostomy.

Still feel a bit in limbo at the moment waiting for things to start happening. Dh had a bit of a bad day today, but there will of course be ups and downs. I think that in some ways I am too good at denying my feelings if that makes sense, I tend to bury things deep down and don't talk about them. This is why this is such a good place, I can say things that I wouldn't normally say.

Year11mum, thank you so much for sharing your story, it certainly gives me comfort that this is survivable. CanI ask how long you have been suffering?I'm sure I will have many questions if dh has to have a colostomy, and if you don't mind answering them. I do wish sometimes it was me instead of him, its silly things like money. He will not get paid full pay when off sick so we have that additional worry. I think we will manage but if it were me I know I would get full pay.

Daisy I am so sorry for what you are going through, it is everyones worst nightmare. Please do take care of yourself, I am sure it is going to hit you hard at some stage and I hope you have plenty of support.

MrsShrek hope you get some answers re the blood tests.

Turning - hope you get your dh to the doctor.

Toriana - I was diagnosed way back in 2005. I had various complications which your husband absolutely will not have. A friend of mine was diagnosed at a similar time, but her colon cancer hadn't spread so she had the op, and that was it. All over. No more cancer. No more treatment. Let's hope that is your case.

And I shouldn't really have said suffering. Yes the first couple of years post diagnosis were pretty full on and grim but I've had a more or less normal life in between ops since then. I've been there to nag my DCs to do homework and tidy their rooms, we've somehow always managed to have a summer holiday, I've was able to look after my elderly mother before she died etc etc. I've been pretty lucky I know.

Thanks Year11mum. I certainly hope that it does go the same way as your friend. How long did you have to have your temp colostomy for and do you now have normal bowel function? Hope thats not too nosy.

I had it from November to early August the following year. I think that normally , if it is temporary, they can usually be reversed after about 3 or 4 months. Mine was complicated because I had to go back on chemo after the first op and then have a liver op before we could think ( or I even wanted to think) about reversal. As it is I'd become used to it and had to take a deep breath to opt for yet another surgery and hospital stay.
And I now have normal bowel function.
Hopes , in the nicest possible way, that I don't know Toriana in real life

Y11, we've talked far worse stuff than bodily functions on this thread How are you doing now?

A friend's DH was diagnosed with bowel cancer, but luckily had not spread. Had the op and the colostomy bag last year.
Waiting for the reversal, which was delayed due to a hernia < he is in his 60s>.

YR11mum good to have you on the thread . Like you I'm on "the journey" myself and I so agree . In many ,many ways I feel it is worse for partners and those around us .
I think ,given the choice ,we would all prefer to be the one with the dx if it spared those we love .
So I think we have the easier road .

MrsShrek - remind me what's confusing about the blood results ? Sorry I've lost the thread on where you are with them !

And Turning how's it going with regard to getting DH to doctors ?

And Daisy thinking of you .Wishing you a little peace and rest .

Thank you for answering my questions Year11mum, I do appreciate it. I'm sure that we don't know each other in RL!

talk of "markers" (NHL - well actually DLBCL if we're being picky) but fortunately nothing on the scans. so they're doing watch and wait (groan, more waiting)....

aah , I see .
sort of ..

Maybe worth popping over to Tamoxifen thread and running past amber and the other experts ?

Hello Torinana -my ds's cancer was in his colon and he's got the temporary colostomy. He's just had a clear CT scan after 6 months of IV chemo and he's hoping they'll reverse the colostomy in a few months time. He's still feeling ill from the chemo at the moment.

((hugs)) to Daisy - thinking of you.