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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.

MrsShrek3 Sun 06-Jan-13 00:21:48

how are y'all doing?

Hellenbach Sun 06-Jan-13 20:05:24

Struggling. You all seem so on top of things.
Any tips on how to get through this?
Scan tomorrow then results on Friday, think it's going to be a looooong week.

Turningupsidedown Sun 06-Jan-13 20:34:21

Hi Hellen, nope not on top of things a lot of most of the time. It is up and down for all I think sometimes I can use gallows humour to get through a bit, but other times I don't know how to get through it either. Last week was tough here, and I have been struggling too. Scan week will be tough week for you sad , sending logs of hugs. Just sorting out for school restart tomorrow, but will pop back later, need to get some stuff out of my system so definately not on top of things at the moment smile

smee Sun 06-Jan-13 20:40:25

Just spotted this thread; great idea. I've had cancer (BC, nearly 3 years ago), so just thought it worth saying to Hellenbach, that with my DH whenever I had a big appointment we bought a bottle of champagne (Cava if we were feeling broke!), and sat that evening sharing it. It's a great way to say 'Up Yours' to cancer and to talk it all through. Really helped us as it forced us to sit together and talk even when all I wanted to do was hide under the duvet. Might be worth a try on Friday. Hope you get some good news. Waiting's horrid.

Hellenbach Sun 06-Jan-13 22:58:27

Thanks for being there, feeling bit better.

Had a bad morning, combination of PMT and listening to 'Steve Wright's love songs' on radio 2 set me off sobbing!!

lisad123everybodydancenow Sun 06-Jan-13 23:02:35

Message withdrawn at poster's request.

MrsShrek3 Mon 07-Jan-13 02:01:46

hellen you didn't see the last thread....wink sad far more downs than ups. no matter where you are on this path it is scary. waiting for results / news / appointments / treatment is the worst bit, but all of it scary. agree with Lisa, keep busy - but that too can be a path to self destruction as i found out the hard way.

I'm going back to work tomorrow. we need a plan for all the "did you have good Christmas holiday" question bollocks, and try and get a grip instead of cry all the way there every day again. let's see how long I manage this time hmm
good luck all brew

Turningupsidedown Mon 07-Jan-13 02:18:23

Oh Hellen, that would do it, even vaguely sad bits in movies set me off at the moment!

For those curious about the aloe vera plant incident, we got given the plant by a friend, it is a ridiculous thing that is 2ft by 2ft and at the end of each of the long pointed leaves is a thorn which is about an inch long. We didn't really like it but didn't want to upset the friend by getting rid of it. DH just leaned over to put something on the window sill and one of the thorns went straight into his eye. They have some sort of allergen in them too, so not only was it bleeding but also swelling up! I was quite unfairly really cross with him - it was a totally random thing and it really hurt. But just the thought of another hospital visit for something so crazy with everything else going on was just too much! It is healing up well now though, so one we can forget about at least smile

This week has been all about what next. There seemed to be diasgreement over whether he should have radiotherapy with one consultant even writing one thing to the GP and the opposite to the oncologist it has all been very confusing which has been stressful. The oncologist had got hardly any of his notes at the appointment just before christmas and so we had a follow up this week. She is very nice and spent more time in that one appointment explaining things than anyone has spent in total so far hmm It was clearer why there has been confusion if people have only had part of the notes though. Nobody had ever explained the results of the pathology from the first surgery to us before, they have never had them in the file when we have asked before. It seems that as he had what they call an unplanned resection (due to misdiagnosis as benign and no scans they left part of the tumour behind) and as it is high grade he has a high risk of recurrance and normally radiotherapy would be standard for either factor. But she says as they have done a tissue transplant and have got a wide margin of clear tissue in the second surgery they would mainly be irradiating tissue that has come from another part of his body and would be cancer free anyway so she does not think it would do anything useful. They use a high dose of radiation for this type of cancer that could cause the transplant to die and damage the bone in his leg. Even if they went ahead there would still be a recurrance risk. So it has been decided not to go ahead with the radiotherapy. The high grade means he is also high risk for mets developing but there is nothing they can do for that, chemotherapy is not effective in preventing them. So now it will just be monitoring with scans. It feels very scary to suddenly be doing nothing sad People keep saying we must be happy that the surgery was a success and he doesn't need any more treatment but it doesn't feel like that. They are not saying they know it is all gone, just that everything they can see is gone and not that he doesn't need any other treatment but that there isn't anything that they think would be of benefit. I can't seem to think about anything but all the scary risks that they have explained. There isn't any end to the fear sad it is going to be years of clear scans before they will say they think it is gone. It feels scarier now that nothing is happening I thought it would be more positive at this point. I don't know if any of that even sounds rational confused Sorry for rambling on as usual, and please do send virtual slaps to get me to pull myself together smile

Hugs to everyone especially those with scans this week.

Turningupsidedown Mon 07-Jan-13 02:23:29

Cross-posted MrsS good luck with back to work tomorrow, I had all the 'did you have a good christmas' stuff last week, hated it. Hope it goes ok. Did you get away for that break, or is that yet to come?

MrsShrek3 Mon 07-Jan-13 02:28:26

Turning, you need hugs not slapssad don't you even dare.....
can totally get.where you are too. DH has had his last chemo on the treatment plan and it is as you say just where we hoped to be however even more scary than before. No more treatment for now. also a very aggressive and high grade lymphoma so recurrence stats don't make comforting reading at all, however initial treatment success rates are mostly good. we haven't got any info as to whether the chemotherapy was a success or not yethmm or whether he'll need more treatment, chemo, radio, surgery or nothing....confused bloody emotional rollercoaster.

MrsShrek3 Mon 07-Jan-13 02:31:52

we went. my dm went what can only be described as apeshit "off on one" and pretty much ruined it. hey ho won't be doing that again. Hope you can figure out a way to relax if not sleep wink and remember I'm thinking of you smile

Turningupsidedown Mon 07-Jan-13 02:36:55

Not just us then. Thanks smile but sorry you are in the same spot. It is weird, all we were thinking about was getting to the end of the treatment but you don't think about what comes after and then get there and realise it isn't an end at all just the start of more waiting. At least we have had all the results there are to get until the next scan. When do you get results on chemo?

MrsShrek3 Mon 07-Jan-13 03:55:43

16th. (doing best to ignore that for another week)wink

CornyClam Mon 07-Jan-13 04:32:28

((Hugs)) to all who need them.
We're plodding along here. Dh feeling more and more tired but coping. Has 5 treatments left. I've got blooming insomnia at the moment. Maybe going back to work will sort that out though.

Turningneedssleep Mon 07-Jan-13 23:22:39

So did anyone actually sleep last night?? hmm I really need to, was driving along tonight and got to junction and just went completely blank as to where I was actually going confused It was a really bizarre feeling, I couldn't remember why I was in the car or where I was headed. It only lasted for a moment and then I realised DD and her friend were in the back and remembered I was taking friend home grin Cracking up blush Better luck for everyone tonight.

Cross posted again MrsS sorry the break away wasn't much of a break sad

How is everyone else doing? Echo how are you holding up? Think you have a scan this week? I did wonder about those levels whether it was two different things? I did think PSA levels might be to do with proteins (friends DF has prostate cancer - he is doing well by the way) so maybe they measured hormones and proteins? But I might be talking cobblers. Did they give you any contact numbers for if you think of questions afterwards? It is often hard to take it all in and think of everything at the time. We have a keyworker who we ask bombard as communication is so rubbish Hope you are coping.

Don't think Daisy has made it to this thread yet - hope you are ok, December sounded tough for you, hope your DH is doing better and out of hospital.

And how are you today Hellen? Hope you have been staying away from Steve Wright's Love songs grin

Am going to attempt to get some sleep or I might get 'lost' again tomorrow wink

MrsShrek3 Mon 07-Jan-13 23:40:02

love the namechange, Turning. Better luck with the zzzz's tonight. You sound worn out, can you get a break at any part of any day? Please try, for your own safety and sanity. hugs brew

cornyclam Tue 08-Jan-13 15:51:18

I managed to get some zzz last night for the first time in about a week. Feels sooooo much better. I woke at 4 but managed to drop back off. <punches air>

Hellenbach Tue 08-Jan-13 21:48:35

Managing to hold it together smile totally in limbo at the moment.
Scans done, appointment on friday.

Turningyour situation is tough, we have lived from scan to scan for 10 years, I never wanted to plan anything too far in advance because of those scans. But we have managed to have a good family life, up until now, when it's come back to bite us on the bum!

Smee, thanks for sharing your tips!

MrsS how did the first day back go?

MrsShrek3 Tue 08-Jan-13 23:15:02

well done corny grin
Hellen - keep smiling while you limbo (sorry) and good luck for Friday, sending you good vibes. I really do feel for you, we're limboing too. (Stupid humour works in my worldbrew )
me? yes I made it to work. had really hoped for a nice quiet time minding my own and keeping my head down. Then A Big Issue cropped up within ten minutes of me getting in and it was the usual hundred mile an hour chaos again [rollseyes] ahh well, never boringhmm
Lisa, Im still taking your advice...some of the best in the world. The most recent one being re reading the other thread, realising how stressful it all is with work, appointments and my head is too chaotic - so hit the button to order an online shop. It's the little things wink

lisad123everybodydancenow Wed 09-Jan-13 00:01:25

Message withdrawn at poster's request.

cornyclam Wed 09-Jan-13 08:40:53

well done on the new job lisa smile

Hellenbach Fri 11-Jan-13 20:53:24

Got the scan results.....what's the classic sentence you don't want the oncologist to say?
'well, it's not good news'
I can't believe she actually said that! Along with 'you are just unlucky'

The bottom line is the chemo didn't work. Three rounds of misery for nothing (can you tell I've hit the vino?)

Tumours still growing. So now we have a two week break and then start a new drug, oral chemo.

Don't even know how I feel anymore. Oh yes, cried in the playground at pick up when the head asked how the treatment was going!

lisad123everybodydancenow Fri 11-Jan-13 21:18:46

Message withdrawn at poster's request.

Hellenbach Fri 11-Jan-13 21:39:34

Hi Lisa, thanks for responding.
Just sat here with the phone beeping as everyone asks how today went sad

He will take Everolimus. I'm not even going to read up on response rates etc seeing as we are so bloody 'unlucky'!!

lisad123everybodydancenow Fri 11-Jan-13 22:11:39

Message withdrawn at poster's request.

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