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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.

cornyscarecrowchic Sun 30-Dec-12 22:11:24

Signing in
2013 is going to be a good year smile

overthemill Mon 31-Dec-12 14:58:05

It better bloody be better than 2012 that's for sure! Happy new year everyone

lisad123everybodydancenow Mon 31-Dec-12 19:24:35

Message withdrawn at poster's request.

MrsShrek3 Tue 01-Jan-13 13:59:38

had the biggest conversation about how dh really is doing (with him) for weeks and weeks. he sounds much better now, he has been on a big downer for weeks and really expects far too much from himself. we are going to have a few days away (middle of nowhere again) after his scan tomorrow, and have a few nice country and forest walks to see if we can get him a bit more active and stay chilled.
good luck to the rest of you smile

EchoBitch Tue 01-Jan-13 19:25:46

DP has to go to the Urologist tomorrow,referred by the GP on Christmas fucking eve.
He has a raised PSA apparently of 5.3 and will have to have a biopsy,my Mum died of cancer last August and i don't think i can cope.
He is so scared and trying to hide it and worried about me.

cornyscarecrowchic Tue 01-Jan-13 19:30:28

Echo good luck for tomorrow. What does psa stand for?
Sorry about your mum sad

EchoBitch Tue 01-Jan-13 19:37:19

Prostate <<something>> antigen i think.
It's something about raised hormone levels being an indicator of cancer.
We have a friend who has it and he has radioactive 'rods' inserted in his perinium and walks like a cowboy (his own words).
I don't know what we've done to deserve this,last year was crap.
Thanks for replying though.

summer111 Tue 01-Jan-13 19:49:43

Ditto overthemill's sentiments.
Best of luck for tomorrow echo, hopefully the news will be better than expected.

cornyscarecrowchic Tue 01-Jan-13 19:57:44

I really hope you get some good news tomorrow and have a better year.
Lol at walking like a cowboy! Did your friend get better?
My dh has Bowel cancer so he's had more than his fair share of implements inserted in 2012!

Hellenbach Tue 01-Jan-13 20:06:47

Signing in. Not sure how I am feeling about 2013 yet, as we are still in limbo til we get scan results.
Christmas was okay, we got through it, felt like a single parent most of the time.
Think I need to start exercising (with all the other January gym bunnies) to take my mind off things.

EchoBitch Tue 01-Jan-13 20:08:54

Not better but he's still here 2 years after diagnosis,he has to go for lots of follow up stuff but i'm not sure what that is.

MrsShrek3 Tue 01-Jan-13 20:09:18

fingers crossed for you echo that you're not joining the pathway of crap that the rest of us are on. But we're here to support each other whatever the news. I really hope for you and your dh that it's just one of those checking out and "safe side" referrals. Let us know how you get on. (we all know about that waiting thing too, get on here and ramble instead of worrying yourself stupid)

lisad123everybodydancenow Wed 02-Jan-13 00:35:23

Message withdrawn at poster's request.

MrsShrek3 Wed 02-Jan-13 01:55:20

hmmm. I know I said that I wouldn't do that Planning thing again, nor that Going Away thing after the last lot of vomit
So we only decided today grin So that's not Planning is it wink

Turningupsidedown Wed 02-Jan-13 02:56:59

Hello All, definately hope things will get better in 2013 for everyone.

Fingers crossed and hand-holding for all waiting for scans/results. Echo sorry you have had to join us and sad about your mum. Hope you get good news, the waiting to find out is hell.

MrsS hope you manage to get a nice break away grin at the no planning, hope it works out!

Thought we would be free of appointments over christmas but DH managed to find a completely new reason for a hospital visit on Christmas morning - he managed to skewer his eye on the thorn of an aloe vera plant (as you do) and needed trip to A&E and follow up with eye consultant cos we don't have enough consultants and appointments in our life already confused staff at A&E quite bemused they actually use the plant for healing wounds and had never had someone come in injured by one grin thankfully he doesn't seem to have done any lasting damage.

Appt tomorrow about the radiotherapy. Hoping will go better than last one, they all seem to be disagreeing with each other on whether it should go ahead DH is supposed to decide tomorrow - he is stressed about it sad

MrsShrek3 Wed 02-Jan-13 11:45:01

oh the irony of getting injured on an Aloe plant (but just HOW??!) Will be thinking of you Turningsmile
I'm just waiting for DH atm, he is having his CT scan. it's taking ages this time, been gone 40 mins already. They probably can't find anywhere to inject him (again) as his veins are all knackered from the chemotherapysad Then he has to avoid the children for a bit as he's radioactive. Apparently they check him with a geigercounter, he thinks it's hilarious. Still wearing his hat and scarf...today's look is more glow in the dark bankrobber?grin

Thank goodness for the mn appgrin

EchoBitch Wed 02-Jan-13 13:16:18

Been to see the Urologist and DP has to go for an MRI next Wednesday,hormone level are 50,whatever that means but it isn't too good.
Then for a biopsy on Tuesday 15th.
And the results about 10 days after that.
So all in all about a month til we know anything concrete.

Odd thing is that when i saw the form from the GP with his urine sample bottle i am sure it said the raised PSA levels were 5.3,today the Consultant and the nurse said they are 50.
Don't know what difference it would make but i would think the lower the better.

CornyClam Wed 02-Jan-13 13:35:43

Hope all the scans today get good news. < fingers crossed>
Lol at radioactive bank robber grin
My dh is sat humming on the couch with his legs sticking out from a duvet which is covering everything else including his head.

It's Must be so frustrating having to wait for the results echo. I remember that was the most stressful bit for me. Once you know what you're dealing with you can begin to plan a bit more.

lisad123everybodydancenow Wed 02-Jan-13 14:40:51

Message withdrawn at poster's request.

CornyClam Wed 02-Jan-13 19:23:44

Lisadshock

Hellenbach Wed 02-Jan-13 20:54:23

Echo, so sorry you have got to endure that wait, hopefully it will be a bit quicker than a month.

Turning, I am v intrigued by the aloe injury!!

MrsShrek3 Wed 02-Jan-13 23:53:45

echo...squawk at all that waiting. agree it was absolutely the worst bit for us. oh, and Pat. she's evil toowink

MrsShrek3 Wed 02-Jan-13 23:54:58

Lisa, huge shock but envy at being spared that hideous waiting thing (andhmm at me)

lisad123everybodydancenow Thu 03-Jan-13 00:19:19

Message withdrawn at poster's request.

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.

Twosugarsplease Fri 11-Jan-13 23:56:45

Hello... I'm new, dp is waiting for a biopsy for a nodule on his thyroid, he is his normal stress free self, I am beside myself and secretly can't think of anything else, knot in my stomach like a football, just so worried.

lisad123everybodydancenow Sat 12-Jan-13 00:05:49

Message withdrawn at poster's request.

Turningneedssleep Sat 12-Jan-13 00:18:20

Hellen so sorry, that is a really crappy sentance from the oncologist sad . I am so sorry that the first treatment hasn't helped but have everything crossed that the new one is better. Sending more wine from me. It is really hard being bombarded by everyone wanting to know what happened. A blog as Lisa suggested sounds like a good idea, or is there someone who you can ask to send out information for you? Or an email update - all DH's family is in Australia, so I have set up an email group and just send out one email to everyone as it was so hard trying to ring everyone. Sending loads of ((((hugs)))) .

Turningneedssleep Sat 12-Jan-13 00:23:05

Hello Twosugars welcome to the thread, there is loads of support here. we all know how shocking it is to be waiting for a biopsy and how scary it is (((hugs))). Hopefully you will get good results and won't need to be here long. Do you know how long you have to wait yet?

lisad123everybodydancenow Sat 12-Jan-13 00:29:16

Message withdrawn at poster's request.

Turningneedssleep Sat 12-Jan-13 00:30:39

Hello Lisa just posted on your other thread, sorry today has ended with a bump sad Typical you got appointment on same day as paed review. That happened to us too. I put it off and it came last week, same day as another DH appointment. I didn't dare put it off again - it was a year late as it was. But it was a bit much. wine and (((hugs))) for all who need it.

cornyclam Sat 12-Jan-13 04:59:01

anyone else up?
most mornings I'm up at 4-5 now. sometimes I get back to sleep but sometimes not. It's so knackering.
Hellen sorry about your dh's results. Just what you didn't want to hear. ((sending hugs))
Lisa it's sods law that you'd get the appointments for dh and dd on the same day isn't it?
hello twosugars. do you have a date for your dhs's biopsy yet? The waiting is horrible isn't it?

MrsShrek3 Sat 12-Jan-13 22:34:04

Hellen...bugger sad sad back in hanging-in-there on the edge of your nerves territory again. if vino iswhat it takes...wine

twosugars - oooh. That's how it started for DH in July, although we knew it was lymphoma from the needle biopsy and the thyroid biopsy was just to find out which type. Prior to that we'd read up on all sorts....as you probably are. If you have bad enough luck for it to be any of the range of nasties there, the prognosis for all of them is pretty good. fingers crossed for you.

Hellenbach Sun 13-Jan-13 22:22:40

Thanks everyone for your kind comments. Bizarrely we have actually had a really good weekend. I think DH is massively relieved he doesn't have to do anymore chemo and is feeling more well than he has for ages.
We had friends over yesterday and he ended up on the karaoke! grin

Lisa - I love the blog idea
Corny- have you tried any herbal sleeping pills? You must be exhausted!

Off to a different hospital tomorrow, DS2 is having an op, just keyhole but not nice. Looking forward to a hospital-free week soon!

MrsShrek3 Sun 13-Jan-13 23:34:39

great stuff hellen smile
Echo - where have you gone?
Hoping you're all managing to do what you need and fake being sane.
Corny, ditto....two hours is my best night's sleep this year hmm I seem to have killed dropped off all the nocturnal threads here too. Mainly because there was only me talking to myself on them grin

DH's appointment on Wednesday but we're Not Thinking about that are we
wink

EchoBitch Tue 15-Jan-13 17:12:58

Hi,i'm still around but haven't been on here much for a while.

DP had his MRI last week and biopsy this morning,very sore at the moment,asleep on the sofa and peeing blood as they said he might.(not on the sofa i might add).

He's been a really miserable sod to live with the last few of weeks,and i don't blame him at all for that (i would be a nightmare) even though he hasn't had a diagnosis of anything yet but told that there is a possibility of cancer given the high hormone levels.

The results are in about ten days i think.

I know this will sound really selfish but i spent most of last year,from November 2012 til August 13 looking after my Mum three hours drive away and he was fantastic about it,coming up to us regularly and doing jobs to make the house easier for her to manage when i came home for a few days and the carers were there.

His prostate problem was found out just before Christmas and with other problems on top i just feel i've never had time to even think much about my Mum,she died three weeks to the day after her cancer was diagnosed and i still feel angry about that,how could they not have found it sooner after she had MRI scans and xrays herself.

Sitting in hospitals again so soon is awful,of course i will still go with him and be as supportive and caring to him as he was to my Mum and i and i would never tell him i feel shit about it because i do feel dreadful for him and our (grown up) DC.

HeyHo... onwards and upwards.

digerd Tue 15-Jan-13 18:06:03

Prostrate cancer is often contained and does not spread quickly. The advice, if not spread is to have the wretched thing out, but most men do not want that.
I know a man who had it diagnosed early and lived for 20 years having it contained with hormones. Also know another who was just 60 and he decided to have it removed and be done with it.
So sorry about your DM.
Good luck for DP - he was very good and kind to your DM.

EchoBitch Tue 15-Jan-13 20:29:08

I just re read that and what a cow i sound.
He's only 51 and i'm moaning about me being upset.

The biopsy sounded vile and painful,everything is so complicated and i can't let him think i don't care,i do care,it's just too bloody soon after my Mum if that makes sense at all.

It was November 2011-August 2012 that i was with my Mum,she had a bad fall and needed looking after,then she had a stroke a few weeks later just after Christmas,i stayed so she would have visitors in hospital everyday and someone when she went home,then the cancer in August.

Dbro was almost totally useless in any practical way and went off on his hols for four weeks the day she came home from the care home where she stayed for three weeks,DP did all the stuff Dbro should have done including arranging the funeral.
The day Mum died Dbro didn't even get up to us til late afternoon after we'd been up all the day before and night with her.

I will pull myself together,but it just gets me down so much and having to cheer DP on at the moment isn't easy.

Like i said before,he hasn't got a diagnosis yet so we shouldn't even be getting this upset.

Sorry to misery plop.

Hellenbach Tue 15-Jan-13 21:22:47

Mrs Shrek thinking of you tomorrow

Echo there is this misconception that cancer brings out the best in everyone and we all become magically caring and serene.....er not!
I remember a nurse saying to me and my DH ' I bet this whole experience has brought you so much closer together'
I told her that all we had done was argue!
Don't be too hard on yourself

lisad123everybodydancenow Wed 16-Jan-13 16:21:15

Message withdrawn at poster's request.

Turningneedssleep Wed 16-Jan-13 18:42:14

I've been thinking of you today too MrsS hope you are ok

Twosugarsplease Wed 16-Jan-13 20:05:01

Hello again, and thankyo for the welcome mrsshrekand lisa (also my name) smile
I started my own thread and have been glued to the responses.
mrsshrek hope all was good yesterday.
I remember posting on your thread back in July, I remember thinking, how awful for you, my worst nightmare, so sorry it was bad news., and here I am too 6 mths later.
No date for biopsy yet sad ultra sound said its a nodule, 33 mm in size, I'm clinging into info being given to me that it's apparently thyroid cancer is very treatable, 5 % chance of being malignant.
Dh btw thinks I'm being daft worrying do much about him. I'm not too bad at the moment, but when date comes the knot in my tummy will start again, lose some more pounds too grin

There are so many of you here, and you all sound so strong and brave x

lisad123everybodydancenow Wed 16-Jan-13 22:20:12

Message withdrawn at poster's request.

MrsShrek3 Thu 17-Jan-13 22:45:08

hang in, twosugars.

Better news yesterday. Brain won't process it all though. I'll come back when I can get my words and my thoughts straighter....sorry I am just too overloaded for now.

Turningneedssleep Thu 17-Jan-13 23:32:15

Hello MrsS glad it was better news, not surprising you can't process it, it must have been a very stressful day (((hugs)))

Echo you have been through so much with your mum I am sure that is only just beginning to sink in without this happening as well, no wonder you are finding it hard. And it is waiting and wondering and the unknown that is stressful, you have every reason to be feeling upset, you don't sound like a cow at all smile

Twosugars I am sorry you do not have a date yet, waiting is tough, glad you are getting support on your own thread too.

Hello everyone else, hope you are all doing ok

Hellenbach Sun 20-Jan-13 08:21:18

How is everyone? The snow is a great distraction isn't it smile

Twosugars my friend had a lump on her thyroid removed a few years ago. She was told it was pre-cancerous (just to throw another angle into the mix).
Afterwards her thyroid function is working fine, monitored regularly and she has been fit and well ever since.

MrsShrek thank goodness for some good news grin

We have now been told DH will have to go in overnight for a biopsy. They don't know why the chemo didn't work so it makes sense to do this.
But we have been told it will be like 'a whole new diagnosis', so more waiting, worrying and then results.

Feel like a hamster on a wheel!

digerd Sun 20-Jan-13 08:58:53

My Best friend's sister was diagnosed with an unusual, very aggressive Breast Cancer, 10 months earlier no sign of it on mamogram>, and after 5 months of chemo, they found it was still there, and changed the chemo for another 3 months. She was told hers could not be cured. That was 3 years ago, and she is still fine on the BC tablets.
Fingers crossed for your DH HELEN

MrsShrek3 Sun 20-Jan-13 09:44:11

Update time. Brain slightly more engaged (still woke up before 7am head spinning, how rude is that on a Sunday?!)
DH doesn't appear go have processed this stuff either, and it all feels a lot like talking about someone else. The haematology consultant told us that as far as he is concerned no more treatment is needed, DH has had the gold standard chemo and the aim was to over-treat with the chemo - the cancer is now in remission. For this type of lymphoma only full remission will do, for others partial is fine - so we knew it had to be gone or more treatment. There are still more (minor) tests to be done on his thyroid because the bit that was working before probably isn't now, as that's where the extranodal tumour was. Apart from 3 monthly CT scans and appointments, dh is free to return to work. The relapse rate for this type of lymphoma is a bit higher than you'd hope, hence relatively more intense monitoring for 5 years compared with others. Unluckily I can't see us getting rid of Pat any time soonhmm After over six months of "it" being in the middle of everything, we can now try to figure out what "normal" is supposed to look like - another difficult task because I can't even remember how. Plus the fact that the whole journey has changed us. We're tougher than I thought we were, individually and as a couple or family. But quite different.

There is talk of a trial medication. The theory being that the relapse/reccurence rate needs reducing (it is currently quite significant) and ways to attempt to beat that three year boomerang that is non hodgkins lymphoma appear to be underway. No idea if he will do it or not, we weren't expecting to have to make decisions. hmm I'm staying on this thread btw. It's been my lifeline for so many months and our journey and battle with bastard cancer ain't quite over yet. Plus the fact that I have had so much support here, I need to give some back.

hugs and hand holding for all who need, as always smile

digerd Sun 20-Jan-13 13:53:19

That is good news OP. Unsure what the difference between half and full remission is, but that he can go back to work says a lot and sounds very positive. Does he feel well enough to go back to work, though?
They are to keep a scrupulous eye on him with 3 monthly CT scans, which is both reassuring but also "PATFUL". There is never a pro without a con in this life I have learned.
Good Luck.

Thumbwitch Mon 21-Jan-13 00:35:22

Hello MrsS - I feel horribly guilty that I didn't keep up with your last thread and therefore missed this one until now! I've been an MN lightweight though for the last few weeks. blush

I hope the remission is complete - and long-lasting! I can understand your bewilderment - this has been your focus for months and now it's taken off the boil, as it were, while still not being completely over. You'll find a new "normal" again pretty soon though, I think.

Echo - your DH's PSA (prostate specific antigen) levels are an indicator of problems, as you have realised; the hormone levels will be a different substance (although I can't remember which hormone they test for). My Dad had Ca prostate a few years ago, and he had an 8 point needly biopsy of his prostate, of which 2 came back positive, one was dodgy and the rest were clear. Because of this, he only had radiotherapy for his treatment and it was successful. He still goes up to the Royal Marsden every 6m for a check up, and has his PSA checked every month to ensure it stays under 4. So far, so good! Up to you entirely but you might want to have a look at this lady's book Prof Jane Plant - she herself had breast cancer 5 times and then managed to get rid of it after some interesting realisations. She's no quack - she was the geologist to the Crown at one point.
Anyway - it can't hurt and it could help. She has also written another one, more personal to her, about breast cancer.
Please note: at no point should these suggestions I make be taken to be "instead of" conventional treatment - only ever as an adjunct, and only if you want to.

Similarly I'd like to link again to the Penny Brohn Cancer Care unit in Bristol - there for advice on diet, lifestyle, counselling services etc. but all to go alongside conventional cancer treatment.

I hope Daisy is ok - and that her DH is actually resting from work a bit now! sad for her.

I'm only here to hold hands and offer the occasional bit of hopefully useful advice, my parents, niece and other family members have had cancer, with varying outcomes, so I have some idea of what it's like but not in any way like you are going through just now.

Mrs S It sounds like such good news, but I can truly understand why you are cautious and confused. I've felt the same way since our 3 month scan which showed the complete opposite of what I expected. I am really mistrusting too. I can not believe they have got the right person's results!

I am thrilled for you both - remission is a big old thing especially once things have settled and you have the time to grow your confidence again. And do stick around. Please!

I haven't been on the thread for such a long time I've lost track of who is on it. I'm sad there are some new joiners - I wish none of us had to be here.

Mr D has improved since December; he had chemo no 5 two weeks ago tomorrow and so far has had no real trouble with it. Side effects are completely different to the previous 4 and thank God that bizarrely, given the weather, there are few problems with the cold this time. He did need yet another blood transfusion the day after chemo because his hB had plummeted to 9 again which has helped him be a bit perky.

And I am getting him to take it a bit easier! I had to threaten to go to my Mother's if he didn't, that combined with the threat from the oncologist that chemo would be cut short if he ping ponged in and out of hospital again with this round has worked. He is working from 0800 - 1300, and then resting at home until 1545 when he is allowed back to work for 45 minutes. I am being such a tartar grin, but I'd had enough of him dragging himself in a super human fashion through a weeks outdoor work and then getting ill or distraught or something every weekend. So far so good. We have one more round of chemo and a scan (so not looking forward to PAT coming to stay; I'm not sure I'll handle her well this time) then we are off on our own for 3 months to see what happens.

I think I need to do some research into how to keep Mr D on the straight and narrow once the very solid crutch of chemo has been taken away. We have had two treatments delayed over this cycle and each time his mental strength has really struggled. Somehow he needs to wean himself off the crutch and believe that his body will be OK. Tough. Especially as I don't think he has adjusted to how badly his body has let him down over this. We both read the story of the actress who died in her early 40s from PEs with deep shock. Her story was so very similar to Mr D's and we had managed to put to one side how close we were to disaster in August.

Sorry. Mammoth post. Serves me right for not updating sooner.

MrsShrek3 Tue 22-Jan-13 21:55:16

Thumb, wise advice and fascinating info as always (hope small one doing well too?)
Daisy...are you me? we appear to have a parallel thought process going on? albeit with slightly different circs the stuff you're describing is exactly what I am thinking too.
dig,I'm lurking and intermittently posting on other thread. hoping your dd gets good results.

MrsShrek3 Tue 22-Jan-13 21:57:31

Echo, how are you doing? just been re reading some posts. sending you good vibes from me.
sorry if I've missed anyone...
the lovely Lisa is around too <waves>

digerd Wed 23-Jan-13 07:19:33

OP
Thank you. The results are not so frightening, but DD had a traumatic 5 biopsies in one place while being squashed by mammo, lasting 15 minutes, and on the last one nearly fainted/did as the position she had to be in made it difficult for her to breathe. < thank goodness I wasn't in the room>

Chances are 80% benign 20 % malignant. "Cluster of calcified cells" ??
Results next week.

Nivet Wed 23-Jan-13 07:33:50

Just signing in, very glad to find this thread. Will be back later to properly say hello.

MrsShrek3 Wed 23-Jan-13 23:54:10

hello Nivet smile

Nivet Thu 24-Jan-13 19:29:03

Hello MrsShrek3, thank you for posting on my mortgage thread. I'm continuing with my "worrying about things that don't really matter instead of the big thing that I'm actually really worried about" coping mechanism. It's not working that well.

Hello everyone else, quick introduction, my DH was diagnosed with prostate cancer in 2011, he had a Gleason score of seven and 18/21 biopsy cores containing cancer cells. He has had a radical prostatectomy which unfortunately did not give a clear margin. This was followed by hormone treatment and three months of daily radiation treatment (which started when DD was four weeks old). He has been in remission for eight months but his most recent blood test showed a PSA increase of fourfold on the previous test. As we have been told that the length of time for the PSA levels to double is an indicator of the aggression of the cancer we are pretty scared right now. We have to wait three months for another test before we have a better idea where this is going. It is possible that his PSA is just finding it's level after treatment and I am holding on to that positive thought.

I'm glad to have found you, having cried over some poor Mum on the school run on Monday I think I need an outlet smile

MrsShrek3 Thu 24-Jan-13 22:15:07

hi again Niven. Keeping Busy and Ostrich tendencies are part of the deal, aren't they? otherwise this shit is just too big sometimes. You're more of an expert than me on doing this anyway.... we have all the scary three monthly waiting stuff to start nowhmm hoping it isn't all as crap as you fear. Does your DH seem well otherwise?

I need to get on my laptop and do time proper reading, can't read properly on my phone and can't see all the recent posts - ohh such a faff. Sorry... lots of people I want to catch up on how they're doing. wahey thank f it's Friday wine

Hellenbach Fri 25-Jan-13 17:58:24

Hi everyone

Especially Nivet hope you are coping with the waiting.

Twosugars did you get the results yet?

DH had the biopsy done, had to stay overnight and lay still for 5 hours afterwards, results in one week, aaaarrrrrrgh confused

Doctor threw in a few new angles on stuff like, 'we need to check it's the same type of cancer as before, and not a new one' WTAF?????

Great, will add that onto my worry list.

Am going out tonight for a few wine

Hope everyone is okay.

lisad123everybodydancenow Sun 27-Jan-13 00:23:18

Message withdrawn at poster's request.

MrsShrek3 Mon 28-Jan-13 01:36:59

had a mad day. literally. Went bananas at DH blush. Something's gone pop in my head, really crazy stuff sad No idea how to retrieve it now. Both likely to be up half the night as neither of us sleep well and definitely not after a day like today. He doesn't know what to make of it all, or me either. sigh. I seriously can't figure out whether I am crazy, depressed, hyperactive or what hmm Hormonal allegedly left the building years ago so probably can't blame that well I probably can but just saying Wish I knew where it came from or how to fix it.

Cornycremegg Mon 28-Jan-13 02:44:02

hello everyone
dh on chemo number 9 or 12 tomorrow
mrsshrek we had an argument last week and really snapped at each other - both just too tired I think. I was talking to dh the other day and my mind just went totally blank as I was talking and I couldn't remember what I was actually talking about. It was really scary actually. I'm hoping it's just the tiredness and I'm not actually losing my marbles!

Cornycremegg Mon 28-Jan-13 02:44:35

sorry number 9 of 12

MrsShrek3 Mon 28-Jan-13 07:16:36

good luck corny and MrC. Will be thiking of you today.

Cornycremegg Mon 28-Jan-13 09:01:16

smile

I didn't dare update the thread last night - I spoke too soon. Mr D ended up having another temperature spike last night and we sailed off to A&E at about 3am. I knew it was coming and had stayed awake waiting for it. He's in an isolation room (on the private wing because they'd run out of rooms everywhere else, hurrah) and I got home just in time to walk the dogs at about 8am. His HB levels have dropped to 8.5 this time, so it's no wonder he has been so bloody breathless. Last week I could have killed him though. He had an accident in a tractor and slammed his liver onto the steering wheel - as if it doesn't already have enough to deal with. And he decided to shift just over a tonne of compost in bags from one side of the site to another; he did use a tractor to actually carry it, but the 75 bags didn't magic themselves into the bucket. He pushed/moved/dragged each bloody one. I KNOW it's important for his mental balance to actually achieve things, but really. Is he insane? He didn't even do it slowly. It took him much less than an hour.

I've had to give in and go to bed for a few hours - it seems I can't manage a whole night with no sleep and a normal day anymore. It's my age, I think.

Mrs S - what set you off? I nearly, nearly lost it yesterday because I knew what was coming last night but managed to cling onto well behaved. I'd say you were mostly exhausted; proper, bone aching, emotionally exhausted. You've had to hold it together for such a long time and now you've had a fabulous piece of news, it has loosened your grip of keeping yourself together. It's what happened to me, anyway!

Good luck Mr & Mrs C - fingers crossed it's a good round.

And Lisa - hope today is kind to you, your DH and your girls.

Looks like a few of us are going to have a tough week this week. Hope all results are positive.

lisad123everybodydancenow Mon 28-Jan-13 17:28:10

Message withdrawn at poster's request.

Twosugarsplease Mon 28-Jan-13 20:05:20

Hi hellan dh goes for another ultra sound and biopsy on Wednesday.
The support and posts on this thread have really calmed my nerves, and dh probably greatful I am not a pathetic wreck this time, says me who will be a bundle of nerves going with him sad

Cornycremegg Mon 28-Jan-13 21:23:53

((Hugs))Lisad. I have everything crossed for you and dh.

Daisy my dh does things like that. He was digging up someone's garden for them just a few weeks after a major op earlier in the year. I would be lying on the couch watching Jeremy Kyle if it was me.

Good luck for weds two-sugars

My dh has come back on top form from his chemo. Hopefully this'll be a good cycle but only 3 more to go.

MrsShrek3 Tue 29-Jan-13 20:30:32

sad lisa. that's a bit crap. Don't let PAT stay for the three months either, chuck the bugger out. You've come all this way, hoping it's just a wobble.
Onwards, Corny - another one down wink
Good luck and getting-fixed vibes to MrDaisy - suggest straightjacket?
Will be thinking of you tomorrow 2sugars, hope it goes the best it can iyswim

Hand holding and hugs to all of you/us who need. Will be thinking of you all if not posting, cos I don't seem to get here an awful lot atm.

Twosugarsplease Thu 31-Jan-13 10:12:43

Dh went for biopsy yesterday on a large nodule on his thyroid, nurse said they are rarely malignant, but not always.
If the results come back inconclusive he will need it removed to test accurately, but good news is that the nodules are contained and haven't spread.
So waiting for results now.

Cornycremegg Thu 31-Jan-13 21:19:42

fingers crossed for you 2sugars

Hellenbach Sat 02-Feb-13 08:54:00

Got biopsy results.
It's the same cancer but now classed as intermediate grade and not low grade anymore.
The good news is it's not classed as aggressive (looking for the positives).
But they still don't know why the chemo didn't work, especially at that grade, it should have.

Anyway, onward and upward. Starts on oral chemo in a week. Hoping he can tolerate it without too many side effects, we have very limited treatment options now.

Going for a second opinion on Monday, just because I love to spend all my spare time checking out hospitals!! grin

Cornycabernet Sat 02-Feb-13 14:17:04

good news that his cancer isn't aggressive
what a bummer that the chemo didn't work though
how long does dh have to take the oral chemo for?
my dh took oral chemo last year for about 5/6 weeks with radiotherapy.
Was manageable and he was able to continue working, although he did become very tired/nauseous towards the end of the course.

EchoBitch Mon 04-Feb-13 18:57:30

Got the results today,he has prostate cancer.

It is still contained within his prostate but only just so he has to go for a bone scan.

Hormone treatment and radiotherapy are being arranged.

I hate hospitals...have spent far too long in and around them lately.

Good luck to all you others.

lisad123everybodydancenow Mon 04-Feb-13 19:55:27

Message withdrawn at poster's request.

Hellenbach Mon 04-Feb-13 20:58:46

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

EchoBitch Mon 04-Feb-13 22:43:43

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.

Thumbwitch Tue 05-Feb-13 13:09:20

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.

Thumbwitch Tue 05-Feb-13 13:14:44

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?

Cornycabernet Tue 05-Feb-13 17:38:51

Sorry to hear your news echo x

MrsShrek3 Tue 05-Feb-13 19:53:21

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.

digerd Tue 05-Feb-13 21:41:15

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.

PokeInTheEye Wed 06-Feb-13 16:40:59

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.

EchoBitch Wed 06-Feb-13 16:45:00

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

Thumbwitch Wed 06-Feb-13 21:19:53

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)

lisad123everybodydancenow Wed 06-Feb-13 21:28:27

Message withdrawn at poster's request.

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.

Hellenbach Fri 08-Feb-13 14:03:51

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 grin

MrsShrek3 Fri 08-Feb-13 15:13:18

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

EchoBitch Fri 08-Feb-13 17:32:47

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.

MrsShrek3 Tue 12-Feb-13 07:40:18

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" hmm
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.

EchoBitch Tue 12-Feb-13 17:01:46

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.

Twosugarsplease Wed 13-Feb-13 10:35:03

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 grin
Does anyone have an idea of what could happen afterwards ? If it is malignant ?

MrsShrek3 Thu 14-Feb-13 21:49:16

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 wink sad if you want decent info, check out Macmillan and cancer research websites. both good. CR tends to have lots of factual stuff smile

Twosugarsplease Thu 14-Feb-13 22:43:49

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

cornycourvoisier Thu 21-Feb-13 21:44:16

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!

MrsShrek3 Thu 21-Feb-13 23:51:50

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 wink

MrsShrek3 Fri 22-Feb-13 04:30:25

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 hmm confused

misshoohaa Fri 22-Feb-13 21:37:28

Message withdrawn at poster's request.

triplets Fri 22-Feb-13 23:48:49

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

Hellenbach Sat 23-Feb-13 21:14:01

Hi Triplets
what an inspirational story!
I am so pleased to hear your DH is well now. It's great to hear from people who have been through this hideous experience and come out the other side x

MrsShrek3 Sat 23-Feb-13 22:08:33

<high-fives triplets>
good to see ya here. well it's not, but yano what I mean smile

triplets Sat 23-Feb-13 23:05:06

Thanks ladies...........its nice to be surrounded by those who truly understand. Yep my dh has been amazing, never given in, never stopped working even when he was so weak he would drag himself off, couldn`t stop him. He is now awaiting further surgery to repair a very large abdominal hernia he`s had for 2 years. Its been caused by the five previous ops on liver etc, everything is weakened. It is a nightmare of an illness to live with isn`t it, you learn an awful lot about alot of things.................and people!

MrsShrek3 Sun 24-Feb-13 01:18:37

So true, Triplets. You end up knowing stuff that previously you didn't even know existed, becoming an expert in the most bizarre areas of human biology, and the people, well. as you say it's an eye opener.
It sounds like your DHs resilience (easily confused with absolute stupidity at times, if anything like mine) has got him this far. keep it up smile
Can I ask, those of you whose DH is heading for remission or improvement... Are you finding the remission bit as scary as I am? Just wondering. feels like it should be all relief and good news whereas in reality its more worrying and uncertain than the cancer and chemo.
Echo, Hellen, 2sugar, Corny, Lisa (and anyone I've rudely unintentionally missed who's around) I think of you all a lot, wonder how you're doing. such a long and exhausting road, doesn't leave much time for getting on here and wasting spending time reading and updating does it...

triplets Sun 24-Feb-13 08:28:15

Remission..........I feel what is happening now when I tell people the scan is clear again and its a period of remission they think its all over, he is cured. At diagnosis 5 years ago he was stage iv, treatable, not curable. The longest period of remission we have had before this one in 9 months, then BANG, it had spread to his lungs. In our case I feel we are now back 75% to living our life again as it was pre cancer, and I think that is because time does that. After 5 years you learn to live with it, it is now another part of our lives, like it or not. The kids now never get panicky when its ct time like they used to, they have coped very well. Last July after being given another all clear the onc decided that she would now scan 6 monthly with 3 monthly blood tests, instead of 3 month scans...........that scared me......6 months alot might happen. I think when you have regular scans, when you are on chemo etc you feel you are doing something to rid the beast, when nothing is happening you are not in control. The one thing I do feel now is that cancer is an illness like many others not the death sentence that scares the hell out of you when you hear those awful words, "its cancer". Research is the key, I donate to Cancer Research and am amazed with their updates the progress they are making, one day there will be a cure, for all.

MrsShrek3 Mon 04-Mar-13 05:17:44

that post is awesome, triplets.

I'm back to doing nocturnal, brain in spinning mode, after a couple of weeks of sleeping some nights. sigh. How's everyone doing?

cornycruzcampo Mon 04-Mar-13 05:46:40

I'm also nocturnal - been awake since 2 and didn't get to sleep till gone midnight anyway. hmm
must give up coffee in the evenings and see if it helps - on horlicks now

MrsShrek3 Mon 04-Mar-13 12:50:08

yy to ditching the coffee, Corny. I've now put myself on juice (warm ribena etc) from lunchtime to see if it affects anything. sadly i fear I'm kidding myself as I have been doing this for 6 months plus and no improvement. But it makes me feels smug blush when people suggest cutting out caffeine and I can say I did it months ago grin brew

Inaminutenow Mon 04-Mar-13 21:25:05

Hi all, I'm new. DH had a diagnosis of oesophageal tumour on Valentines Day. A few investigations later, they say it's advanced, straddling oesophagus and part of the stomach. Still needs to have a PET scan, before we'll know for sure which way things will go. It's really scary, but at the same time feels like it isn't happening, as no treatment has started yet. We've got 2 DS (6 and 3), and he's got two grown up children as well. The older ones know, but I'm dreading preparing the little ones for the changes ahead.

MrsShrek3 Tue 05-Mar-13 07:21:45

hugs, inaminute. Just having a quick catch up and had to say something. back later smile

Hellenbach Tue 05-Mar-13 16:18:25

Hi Inaminutenow
Sorry to hear you are dealing with this, hope your DH isn't feeling too unwell.
When my DH started chemo I got a brilliant book from Amazon. It's called 'How to help children through a parent's serious illness' by Kathleen McCue. My DC are 6 and 2. The youngest has sadly got used to DH being in bed in the day but my 6 year old really struggled. There are some great tips on what to say and do.
I also ordered a book from the US, couldn't get it here, same author, called Someone I Love is Sick. It's aimed at children and has simple pictures and sentences that you can read together. My 6 year old started talking more after we read it.

Twosugarsplease Tue 05-Mar-13 18:40:03

Sorry you are going through this inaminuite
I have a 3 yo ds, two teen boys and step-daughter.
My dh is going into hospital on Monday to have half of his thyroid removed as highly suspicious, we're still in the woods not knowing for sure if the growth on his thyroid is malignant. It's a shit time.
I hope you find this thread a huge support. (hugs)

MrsShrek3 Tue 05-Mar-13 19:16:31

hugs and handholding for you too 2sugars. waiting and anticipating is the pits sad
our dc were 11,8+6 when DH was dx last summer. we were straight with them and gave them all the info they could understand and as time went on we answered everything they asked and gave them updates. that said, we didn't want their summer to be all about dad having cancer. younger ones particularly just live in the now. we talked a lot about good cells and bad cells, and the chemo getting rid of the bad cells but stopping all fast growing cells like hair and nails etc...I'm sure you know the drill. Shouldn't have to have these conversations with our kids should wesad

Twosugarsplease Wed 06-Mar-13 10:32:51

No we shouldn't mrsS
I'm so hoping it doesn't come to that, I've explained to my teen ds's that a bit of help and consideration for next couple of weeks after the op would be really nice, just to help entertain little one, so dp can relax instead of listening to the usual rants and teasing, ( that drives me bloody bonkers) they understand what's happening, but I haven't told them worst case scenario, eldest ds leaves school in 3 weeks and already started some exams.
Explaining it in a way of good and bad cells sounds like an easy way for them to understand inamin

Inaminutenow Wed 06-Mar-13 21:12:37

Hi all, thanks for your advice, will have a look at books etc. Have told the Boys' school yesterday, as I think whatever happens in the PET scan, chemo will be coming straight up, potentially before the end of this month...
Hugs to you all, will keep you posted.

MrsShrek3 Fri 08-Mar-13 07:23:53

how's it going inamin and 2sugars?
our friend lisad isn't well atm so sending her get well vibes too.

Twosugarsplease Fri 08-Mar-13 12:58:41

Hi mrsS sorry to hear lisad isn't too good, I'll have to have read back on the thread to catch up.
Just this weekend to get through, then dh goes in for his op on Monday morning, so hopefully we will find out while he is in hospital.
Hi inamin how are you and your family ?

Twosugarsplease Fri 08-Mar-13 13:02:47

Can anyone tell me if it's likely dh will find out if the growth is malignant while he is in hospital....?
This waiting is horrible.

MrsShrek3 Fri 08-Mar-13 13:11:28

dh's thyroid tumor biopsy results took 4 days then he started chemo within 2 days. I gather that the experienced eye can sometimes tell what they're looking at very quickly. waiting is the absolute worst bit of the whole hideous process. so sorry you've had to do so much of it 2sugars, it just feels endless sad

MrsShrek3 Fri 08-Mar-13 13:12:50

i must add.that the 4 days was over weekend too.

Twosugarsplease Fri 08-Mar-13 13:28:43

Thanks for the quick reply mrsS
Yes your right I'm sure consultant will have an idea what they are dealing with during the op, just hope if good he can somehow point this out without getting our hopes built up, if we have to wait for results. Sorry to hear lisad isn't well at the moment.

Inaminutenow Fri 08-Mar-13 21:40:28

DH will have PET scan on Mon and has also been booked in for a laparoscopy on Thursday. Surely that'll be the end of the investigations? I just want for some treatment to start. Although, having said that, things are a bit surreal ATM, as if nothing has happened, we're just going through the motions. I'm sure once chemo starts, we'll see a big difference. It's the fear of the unknown and I think with his diagnosis, nothing will go back to how things were before. Will keep updating.

MrsShrek3 Sat 09-Mar-13 08:58:08

hugs and hands to hold inamin and 2sugars. hang in there. every day feels a week long when you're waiting.

Today is looking a bit better here. had a really rubbish week sad DH has all sorts of niggles healthwise and won't see gp. next app with consultant is middle of April. I've lost the plot/marbles/whatever and don't seem to have the ability to deal with even the smallest things any more. really hoping that a chilled weekend is ahead smile

I feel bad I've not been on the thread for ages. Life is just too tough at the moment and I'm trying quite hard not to face it really. Mr D has come home with a very technical diagnosis of 'it's the cancer causing the temperatures', 2 different sorts of morphine a a visit from palliative care.

I have taken some comfort from the palliative care nurse (who I was frightened of seeing tbh) who said she didn't think we actually needed her at the moment, so she'd put us to one side or the time being.

We did have to see the cunty oncologist in hospital and as ever, he was utterly doom laden. He told us the time had come to discuss the end, wills and funerals and so on; and to go home and enjoy whatever time we have left.

Mr D is OK though; he is at work as normal, is eating well and we are managing a comparatively normal life. He hasn't had a temperature since he left bloody hospital. Cunty oncologist really doesn't seem to have the measure of MrD - he is just not that ill.

Inaminute - so sorry you've had to join us here - the waiting is just awful. But once they are absolutely certain about what they're dealing with you will be on a treatment path as quick as a flash. If you have questions, there will be someone at the hospital who you can talk to - ring the unit and explain what you need and someone will be available to answer your questions. I wish I'd known at the beginning of this how keen they are to help with our questions and stuff - I didn't hear them when they gave us numbers and so on.

Twosugars - MrD found out the growths were very, very likely to be cancerous before the endoscopy or biopsy. It was the day after he was admitted for PEs. Cancer was confirmed on the day of the endoscopy, but treatment didn't start for a further week or two - mostly because he had to get over the PEs and have a couple of blood transfusions because he was so anaemic.

Triplets - I keep on reading and re-reading your story. It gives me such hope, especially as your DH's cancer had also spread to his liver. I can't stop thinking about it; reminding myself to never, ever give up. Thank you for posting.

Mrs S - are you me? I am beginning to be spooked by how similar our situation and reactions are. The situation we are now in is much much more scary than ever and I can't quite pin down why.

Corny and Helen and Echo and Lisa how are you all doing?

Hellenbach Sun 10-Mar-13 23:09:43

Hi everyone, it's been a while, feel like we are wading through treacle, every day is exhausting to get through. DH's moods are very difficult to deal with, he is incredibly up and down.
We were doing okay until he had to go for bloods and the bloody nurse said
'you do know that just because you are getting some side effects from the tablets it doesn't necessarily mean they are working!'
WTF?!! Really unhelpful. He came home on a massive downer and has been miserable ever since. He won't be having a scan until June so we are in limbo again and her stupid comments have put him right back to how he was before, sleeping in the day, short tempered with the children etc.
Yesterday he had bad chest pains and had to call out of hours dr and go to hospital. Worried as this is a serious side effect of his tablets, he has stopped taking them and we will see his consultant tomorrow, praying they won't say come off them.
Distracting myself with DS2's 3rd birthday party coming up and applying for jobs (got to earn some money, DH self employed and income has dropped massively).
My head is all over the place. Part of me thinks 'when DH is better we can.....' then I have to stop myself and think, He won't get better, this is how it will be now for an indefinite period of time.
Thinking of those waiting for results this week x x

digerd Mon 11-Mar-13 08:57:43

That was very insensitive of the nurst to say that to your DH. But reminded me of of my DH who was told that he could never be cured and that even in remission it would be 5 years at the most before it returned. <shocked face>

MrsShrek3 Mon 11-Mar-13 21:35:02

not MORE waiting, Hellen? shock

Daisydot hehee at "are you me" wink

sorry, just passing thru. Back later. hang in there, all smile

Twosugarsplease Tue 12-Mar-13 14:27:43

Just updating: dp home now, had right side of thyroid removed, consultant told him in recovery that op went well, that's all !!
On his rounds yesterday he told dp to go back in a week for stirches out, and 10 days to see consultant for results...!
Suppose we were expecting to be told some kind of news during his stay sad dp sleeping off his meds in bed, and probably wondering what happens next, and will he have to go through all this again if malignant, we just don't know, this is just crap! On the plus side, he is home.
More waiting...

Inaminutenow Thu 14-Mar-13 20:27:43

We went in to hospital today by 8 for DH's laparoscopy, but once the consultant came round he said that he'd seen the results of the PET scan late yesterday and felt that there was no benefit in putting DH through this procedure as well... Apparently quite a lot of spread in the stomach area sad. So waiting now for an appt re chemo, how, what, when, where. I think they'll be starting DH on it before Easter. It's all sooo scary not knowing what to expect, how it will work etc. DH is staying quite positive, which is remarkable. Apparently they'll be using high dose / mix of drugs, as DH is still quite young and fit. I'm dreading it! How do you combine supporting DH with his treatment and working (ft)?

MrsShrek3 Thu 14-Mar-13 20:51:25

hugs, inamin. we've done the juggling thing. DH on chemotherapy, me at ft work, three primary age dc, one with asd. Im fairly sure I did it on adrenaline, and probably still doing so. I didn't refuse any offers of help but tbh running round after the dc kept me busy enough not to think too much. the hardest thing is not having a break, so if there is anyone willing to give you one, just take it. mil took ironing, my mum fed us one night each week. that sort of stuff is worth gold.

MrsShrek3 Thu 14-Mar-13 20:57:19

don't know if the old thread is any use to you here

Hellenbach Thu 14-Mar-13 22:00:06

Inaminutenow sounds like a very hard day, but now you know what you are dealing with, sometimes I find that helps, even when it's not what you want to hear.

It's hard to predict how the chemo will affect your DH. He may not be too knocked out by it, especially as he is fit and well now. I met people in the chemo suite (suite!) who just had one day in bed and were fine on it.

Get some mechanisms for help set up now, don't wait until you are struggling, like I did!

Big hugs x

Inaminutenow Thu 14-Mar-13 22:51:18

Thanks for the advice. I suppose you just try and build everything into your normal routine? I'll have a read of the previous thread.

gingeroots Fri 15-Mar-13 16:10:40

Thinking of you Inaminute.

The Macmillan site have a general info phone number
Questions? 0808 808 00 00

Maybe worth phoning them .

>>>hugs<<<

MrsShrek3 Sat 16-Mar-13 21:09:56

<more handholding>
thinking of you all smile

MrsShrek3 Sun 17-Mar-13 07:33:41

sigh. anybody else feel like they've run 25 miles of a marathon, another mile to go and no energy to do it? sad

lisad123everybodydancenow Mon 18-Mar-13 15:12:37

Message withdrawn at poster's request.

Inaminutenow Tue 19-Mar-13 22:23:18

Chemo consultation coming up tomorrow for DH. It's weird, I want things to get underway, so that we can start fighting that cancer, but at the same time I'm scared how the treatment will affect everyone, not least DH. But it'll be good to have a plan, rather than waiting round for appointments, I guess.
Hugs to all of you.

MrsShrek3 Tue 19-Mar-13 22:31:39

more hugs inamin. FWIW I found it much better to have that treatment plan for DH. Ys there are worries but the reassurance that there is huge monitoring and, well, a plan, make it more manageable. Wishing you all luck.

Twosugarsplease Tue 19-Mar-13 22:57:22

With you on that inaminuite

Twosugarsplease Tue 19-Mar-13 23:00:36

Get well soon lisa

lisad123everybodydancenow Tue 19-Mar-13 23:14:20

Message withdrawn at poster's request.

lisad123everybodydancenow Tue 19-Mar-13 23:20:49

Message withdrawn at poster's request.

MrsShrek3 Tue 19-Mar-13 23:38:04

brilliant list, Lisa.
Yay for Mr LisaD grin

Inaminutenow Thu 21-Mar-13 06:54:25

We've been told it's Stage 4, chemo (ECX?) to start in the next couple of weeks.

MrsShrek3 Thu 21-Mar-13 07:08:13

sad hugs xx

lisad123everybodydancenow Thu 21-Mar-13 07:44:22

Message withdrawn at poster's request.

So sorry it wasn't better news. I think we were on EOX - we changed from Cisplatin to Oxaliplatin on the advice of a second opinion consultant, along with Epirubicin and Xeloda (capecitabene). Is that the drug combo you're starting on?

Any advice at all I can give? Sounds as though treatment is going to be much as MrDaisy's.

Inaminutenow Thu 21-Mar-13 22:04:41

Thanks all. DH looks on the bright side and keeps saying he could have a car accident tomorrow and be gone... At least this way he can get everything in order sad. I seem to be hit harder than him, when I'm not even ill. Brave face during the day, and then it hits me once the children are in bed. I'm such a wimp compared to DH.

Inaminutenow Thu 21-Mar-13 22:14:41

How long can chemo go on for? Or is it a matter of so many cycles and then a break and then start chemo again? We're still really naive about the treatment, we have no experience of it whatsoever...

lisad123everybodydancenow Thu 21-Mar-13 22:35:41

Message withdrawn at poster's request.

MrsShrek3 Thu 21-Mar-13 22:41:53

what Lisa said...apparently it's common for us to be hit harder than the DH at first, hence this thread... hugs. we're always around. chemotherapy cycles vary in length (14 day, 21 day or whatever) and duration. individually tailored thing for your DHs condition.

lisad123everybodydancenow Thu 21-Mar-13 22:45:09

Message withdrawn at poster's request.

Inaminutenow Thu 21-Mar-13 22:53:52

Thanks for your comments and advice. DH cycles will be 21 days and they've mentioned that they may do up to 6-8 cycles. What happens then?
I agree it's better for him to be positive than moping around, and he's no fool either. He perfectly understands the diagnosis.
We have two boys, 6 and 3, and DH has a grown up daughter (nearly 21) who lives with us and a son who's 23 and lives just over an hour away.

lisad123everybodydancenow Thu 21-Mar-13 23:15:40

Message withdrawn at poster's request.

MrsShrek3 Thu 21-Mar-13 23:34:42

DH also had 6 cycles of 21 day chemo. He's finished the treatment plan and (see above) has recently gone back to work.

random stuff to keep you busy... check out the finances. claim on mortgage protection policy if you have one. see the cab if you can. credit cards and loans are mostly automatically payment protected to cover them if someone is ill and can't work. photocopy his sick note.about ten times and claim on all your protection to cover payments.
Lisa said to me to do online shopping as you ent have the time or energy. nine months on I'm still doing it (thanks Lisa grin )

MrsShrek3 Thu 21-Mar-13 23:37:17

Ps don't panic if the odd cycle gets postponed or delayed to give him more recovery time or get his levels back up. DH had two postponements. normal apparently.

Inaminutenow Fri 22-Mar-13 20:56:00

Thanks again lisad and Mrs Shrek for all the tips, I'm sure there'll be more and more questions over the weeks ahead... It's so good to have people to turn to who have been or are going through similar experiences. We're in West Wales.

MrsShrek3 Sat 23-Mar-13 08:13:06

how are you all doing today? anyone else nocturnal like me ?
wondering how inamin and DH are today.

lisad123everybodydancenow Sat 23-Mar-13 09:44:19

Message withdrawn at poster's request.

MrsShrek3 Sat 23-Mar-13 16:33:00

are you on the mend now Lisa?

Inaminutenow Sat 23-Mar-13 20:46:13

DH has been struggling a bit with eating today and has generally felt under the weather. Otherwise everything still feeling unreal.
I'm tempted to get in touch with the dr who saw us on weds to ask why he says it's Stage 4. We did ask a lot of questions during the appt and they really took their time to go through everything, but I'm not 100% clear about the staging. He explained that quite a few lymph nodes were involved in the stomach area plus Adrenal gland, but I thought for Stage 4 the cancer needed to have gone to other organs? Didn't think they had mentioned any organs? Probably doesn't make any huge difference, but I want to be clear in my mind about what's being said.
Hope you and your other halves are all okay!

gingeroots Sun 24-Mar-13 09:18:03

Inaminute this link gives some detail ,but really every case is different so I'm not sure how much help ...

www.macmillan.org.uk/Cancerinformation/Cancertypes/Softtissuesarcomas/Symptomsdiagnosis/Staging/Staginggrading.aspx

MacMillan are helpful to phone and will talk you through such stuff .
If you phone be prepared for it to be a bit long winded - taking basic details ( so that if you phone again you don't have to go over it all again ) and being transferred .

www.macmillan.org.uk/HowWeCanHelp/HowWeCanHelp.aspx

>>>hugs<<<

digerd Sun 24-Mar-13 09:31:11

My DH was treated in 1994 for advanced, incurable cancer. His was 5 days of chemo in hospital, then 3 weeks at home for 3 months, then a month of daily Radium , then back to 3 months of Chemo being in hospital for the first week.
This was in Germany.

cornyvin Mon 25-Mar-13 04:27:40

hello everybody
haven't been on this thread for a while
dh has finished chemo now and we're waiting for results of CT scan so fingers crossed for that
insomnia worse than ever though

MrsShrek3 Mon 25-Mar-13 06:29:18

ditto corny. more waiting. shit innit.... handholding and distraction while we wait?

MrsMaryCooper Mon 25-Mar-13 06:51:38

Hi

Can I join? DH has been diagnosed with leukaemia we are waiting for tests to come back telling us what his staging is. It is difficult waiting. He is very young to be diagnosed apparently it is normally found in men in their 60's. It all feels very unfair.

lisad123everybodydancenow Mon 25-Mar-13 07:21:23

Message withdrawn at poster's request.

gingeroots Mon 25-Mar-13 07:22:49

Hugs to those waiting .

Hello MrsMC ,I'm new here myself but welcome .

When were the tests ? Do you have a date for the results ?

You can tell I'm new ,I'm currently as interested in waiting times for results as I am in the content of the results . IYSWIM .

Drinking hot water before I'm off for PET scan and nasty ( sure will be out of it and will not know ) ultrasound endoscopy .

Twosugarsplease Tue 26-Mar-13 12:09:00

Hi, just got dh's results today, it is thyroid cancer sad
He will get other half thyroid removed, then radio active treatment.
All seems a bit of a blow at the moment, was really feeling positive.

lisad123everybodydancenow Tue 26-Mar-13 12:56:02

Message withdrawn at poster's request.

digerd Tue 26-Mar-13 15:32:37

2 sugars
Was wondering what the results were and hoping they had made a mistake.
But, it will not involve chemo as not spread, which is the main thing.
Though, they took much too long in their diagnosis imo.
Hope it is all over with asap, now.

Twosugarsplease Tue 26-Mar-13 15:54:42

Thankyou dig and lisa
Bit of a shit day, I'll never forget the look in the nurses face as she led my dh back to me and little one in waiting room, I just knew then, as she wasn't aware we were waiting for him.
It was a look of pity which scared me.
dig I am worrying about a spread, would they know that now, all that was said was a couple of months ago at the biopsy the nurse just said that it is one area, I'm hoping that is still the case.
Phil as ever is thinking about income etc, and if he will be able to use his Internet during his RAI treatment. Typical.
I had a cry in the car when I got out of the hospital, he feels the worst us over, just getting it sorted and getting on with it.
I need to be strong and pick my chin up.
Have read the butterfly pack from cover to cover while he is out giving a lesson, going to work after being told this ! This is just how he is, so I'm going to make sure I've perked up by time he gets in ( in about 10 mins smile

MrsShrek3 Tue 26-Mar-13 16:17:19

hugs 2sugars sad
treatment with radioactive iodine very successful (DH and I read a lot on it as that's what they thought he had before nhl dx) it's still a blow when you've started getting your hopes up a bit tho. Offering hand-holding as much as you need. cry, rant, find out as much or as little info as you want. then get ready for battle. you're strong stuff smile

gingeroots Tue 26-Mar-13 16:30:13

Twosugars I'm so sorry .

Being on the other side as it were , I honestly feel it's easier for the person with the diagnosis as opposed to the partner .

I think it feels so unreal to be diagnosed ,one feels cut off .

But the partner is more in tune with the harsh reality .

I'm not so sure that it's important for you to be cheerful - my partner is busy trying to pretend nothing is happening and is being cheerful . But it doesn't really touch me ,I just feel unreal . It would be all the same to me if he were upset .

Which is no help at all I know .

MrsMaryCooper Tue 26-Mar-13 17:42:46

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 Tue 26-Mar-13 18:04:16

Sorry to hear that mrsmarycooper

gingeroots Tue 26-Mar-13 18:10:59

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 Tue 26-Mar-13 19:28:45

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 Tue 26-Mar-13 20:08:55

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 Tue 26-Mar-13 20:28:51

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

Twosugarsplease Tue 26-Mar-13 20:33:49

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

lisad123everybodydancenow Tue 26-Mar-13 20:56:35

Message withdrawn at poster's request.

EchoBitch Thu 28-Mar-13 00:30:36

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 Thu 28-Mar-13 07:46:44

Message withdrawn at poster's request.

Hellenbach Thu 28-Mar-13 08:39:14

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 Thu 28-Mar-13 08:43:15

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 ?

MrsShrek3 Thu 28-Mar-13 18:54:42

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

MrsShrek3 Tue 02-Apr-13 10:09:53

just saying hi before the thread falls off my TIO smile

thanks

cornygrigio Wed 03-Apr-13 20:48:11

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

<<hugs>> to everyone who needs one!

lisad123everybodydancenow Wed 03-Apr-13 21:22:33

Message withdrawn at poster's request.

Twosugarsplease Thu 04-Apr-13 09:24:40

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

MrsShrek3 Thu 04-Apr-13 10:29:43

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.

Twosugarsplease Thu 04-Apr-13 13:17:58

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 Thu 04-Apr-13 14:14:53

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 Thu 04-Apr-13 21:29:43

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 Fri 05-Apr-13 09:05:25

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 .

MrsShrek3 Fri 05-Apr-13 10:33:56

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

Inaminutenow Fri 05-Apr-13 22:39:43

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!

MrsShrek3 Sat 06-Apr-13 01:32:29

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.

Inaminutenow Sat 06-Apr-13 07:15:51

He'll be on ECX, three-week cycles. Anyone on here who knows about this?

MrsShrek3 Sat 06-Apr-13 09:57:39

inamin I have just looked at this - dh was on this chemo drug too. makes em do red pee for a few hours grin
It's widely used by the look of it, it's in its own little lightproof cover as it can't be put in the light (dh said it must be a gremlin)

gingeroots Sat 06-Apr-13 11:52:43

inaminute you could ask over on the Tamoxifen thread
www.mumsnet.com/Talk/general_health/1720017-Tamoxifen-34-the-power-of-Sauron.

There is a lot of knowledge from people with various types of cancer .
There is bound to be someone who has had ECX .

Though frankly ,reading the links ( well I could only face one ! ) posted by MrsShrek I'm not sure I would want any additional info .

No offence Mrs Shrek smile ,it was kind of you to give the links .
And of course people all react differently ,and I'm sure the listed possible side effects of any drug ,paracetamol say ,are scary to read .

cornygrigio Sat 06-Apr-13 16:21:44

I have no idea what type of chemo dh was on blush <bad wife!>

MrsShrek3 Sat 06-Apr-13 19:04:35

sorry for scaring ginger blush
dh was on R-Chop (which sounds like a karate move or medieval death sentence )

Inaminutenow Sat 06-Apr-13 21:51:36

Thanks MrsShrek, DH was actually given the MacMillan info as a printout about the ECX, I was wondering about people's experiences on it. Might try the Tamoxifen thread.

Mr D was on ECX - at least for one treatment, then he was changed to OCX.

I can do question answering if you like!

The E part is the Epirubicin which Mr Shrek was on too (I didn't know that until today!)

cornygrigio Sun 07-Apr-13 17:49:10

have asked dh about his chemo...he was on oxylaplatin and 5fu

gingeroots Sun 07-Apr-13 17:52:35

daisy did they change MrD ,s regime because he didn't tolerate the ECX ?

Corny how did your DH find the chemo ?

cornygrigio Sun 07-Apr-13 17:59:18

ginger - he was very tired but he coped really well with it
had the tingly/numb hands that Mrs Shrek describes and some nausea
He was always very cold and he wished he could have done it over the Summer rather than the Winter
he also had an infection due to low immunity
he is just very relieved to have completed it now though!

gingeroots Sun 07-Apr-13 19:38:40

Thanks corny ,good to know he coped well .
What is next step for him ?

Have PM'd you by the way as didn't want to hog the thread !

lisad123everybodydancenow Sun 07-Apr-13 23:45:38

Message withdrawn at poster's request.

TorianaTollywobbles Mon 08-Apr-13 18:19:28

Hi just found this thread. Dh went for an endoscopy yesterday, and they found a lump in his bowel. We have been told it could be cancer, and he is going for MRI and CT scans tomorrow, and full colonoscopy in the next few days.

I am just so scared of the outcome, I know we don't know for sure yet but it just seems they were trying to prepare us for worst. Will know for sure in next couple of weeks, once all results back in.

I just can't get my head around it, I keep telling myself it won't be but what if it is what if it has spread, what about treatment. He is too young, only 40.

Arrghh just don't know what to think. I hate the waiting but at the same time I don't want to know.

gingeroots Mon 08-Apr-13 19:13:17

Huge sympathies TT .

Waiting is the absolute pits .

I'm not sure this qualifies as advice but I would recommend grilling everyone on when and how you get the results of any test .

Though IME they're deliberately vague ,so you may need to do a lot of "well ,what usually happens /what's the normal timescale " .

It might be nothing sinister ,and if it's not good news ,you have to hold on to thought that it's good they've found it .

And if you google and look at prognosis ,bear in mind that they're all averages and out of date . They reflect statistics from some years ago ,not current outcomes .

Thinking of you x

MrsShrek3 Mon 08-Apr-13 19:52:00

hugs TT. Most of us here and DHs are in thirties and forties. It bizarrely makes the prognosis better in many cases, because younger and fitter means chemo and other treatment works. Not bloody fair tho. hang in here and there's lots of support smile

TorianaTollywobbles Mon 08-Apr-13 20:44:13

Thanks both of you. Gingeroots I'm glad you said that about prognosis being out of date. Of course I have terrified myself by googling (i know you shouldn't) and some say 5-10 years only.

I will certainly hang in here, may need the support and hand holding. Will be back with results.

Thanks again

gingeroots Mon 08-Apr-13 21:11:35

And what you have to remember is that each case is different ,I'm no mathematician but stats are based on averages and I think those averages include all age groups .

I found we couldn't talk to other people while waiting for results ,but you can here so come back .

My wonderful, wonderful so very much loved Mr D passed away yesterday evening.

I held him in my arms and told him how much he was loved as he went. It happened so very fast.

I could not have hoped to find a more wonderful man and I cannot imagine how to go on without him. My heart is utterly broken.

I'm a lurker and am so very sorry to read your sad news. You and your family will be in our prayers at this awful time for you all.

gingeroots Tue 09-Apr-13 09:20:22

Daisy so very very sorry .

My heart goes out to you .

I see from earlier posts that you are quite physically isolated and feel very alone . Do you have children ?

Thank heavens you were with him .

You must be in shock .

Thinking of you . xx

lisad123everybodydancenow Tue 09-Apr-13 09:21:23

Message withdrawn at poster's request.

MrsShrek3 Tue 09-Apr-13 09:29:21

Lisa said it perfectly. hugs Daisy sad

EmmaGellerGreen Tue 09-Apr-13 09:30:23

So sorry to heat that terrible news.

EmmaGellerGreen Tue 09-Apr-13 09:30:23

So sorry to heat that terrible news.

cornygrigio Tue 09-Apr-13 15:35:48

daisy I am so so sorry xx sad

Thank you all. It is what all of us on this thread fear and I cannot believe it has happened to us.

I have a problem now, and I don't quite know what I should do with it. Mr D was getting much better, and as you know the chemo had worked well. We knew that it wasn't curable but there was hope it could be managed.

Yesterday, at the hospital, the palliative care nurse told me that Mr D would not have been in the crisis he was if the GP had carried out the blood monitoring that the hospital had requested. That if his blood had been monitored, he would not have been in the position he was yesterday. That he wouldn't have died. That the problems which had brewed would have been managed and solved.

Today I have had a meeting with our GP who agreed that they failed. That they failed to care adequately for Mr D. That he failed to spot that MrD was anaemic - on admittance his HB level was through the floor. That he should have admitted him on Friday when he saw him - not said he was OK. That the palliative care team who I called in for a visit on Sunday because I was worried should have noticed he was so ill. That their failure has led directly to his early death.

My brain is in overload. He really, really should not be dead. But he is. I no longer have my wonderful man.

What the fuck do I do?

Hellenbach Tue 09-Apr-13 21:55:48

Daisy, I am so, so sorry to hear your news.
What a huge shock for you.
Do you have family and friends supporting you? I am in North London, please let me know if I can help in any way.

It does sound like you may have a case for medical negligence. I have a friend who works in the field, I can ask her for advice.

Sending you a big hug x

gingeroots Tue 09-Apr-13 22:04:36

Oh Daisy .

The worst thing has happened and now you've learnt that errors were involved ?

How unspeakably cruel to be in your situation .

I hope you can get good advice here ,maybe from Hellenbach .

Have you friends and /or family with you ?

lisad123everybodydancenow Tue 09-Apr-13 23:28:47

Message withdrawn at poster's request.

MrsShrek3 Tue 09-Apr-13 23:54:47

just read daisys post. shit. I had thought maybe I'd missed something as he appeared to be doing well the last I heard. now it appears... well sad .
Agree with Lisa, not to use your limited energy on this for now though. concentrate on an amazing celebration of his life, and make sure that everything you want for him gets done. don't let the anger get in the way of it for you. you will get justice for both of you - a little later. if you come back to it with a more clear mind you will make a better case. honestly. perhaps write down that you have heard today, clearly, and date it. if anyone had with you get them to do the same, as a witness statement. Then put it away for a while. Hand holding for as long as you need here. Words aren't enough.

This awfulness is growing legs of its own and I can feel it beginning to learn to run.

I have been to collect paperwork from the hospital today, and the bereavement officer brought up the failings and catastrophic consequence himself. I cannot tell you the horror I felt as it became a more official thing; something that has become shockingly real.

Then we went to look at churches - there are two in contention for the funeral and once we'd got home, the GP rang again. To go over the mistakes again. To tell me they were having a major incident meeting over it and to give me the date.

It is unreal at the moment and I am quite glad. I have no clue how I will reconcile myself to the knowledge that my lovely man was let down so badly with such catastrophic and irreversible consequences. That the effort we both put into his fight so that we could squeeze out a little more time together was pointless because just as he was getting OK, just after we'd had the good results of the most recent MRI scan, he has died. And he bloody shouldn't have done. If they'd done their jobs, he would still be here.

How can I deal with that?

i do hope to be able to park it though; so that I can grieve for him. I'll write some notes and pick the brains of the friends I phoned and talked to about it and then leave it, if I can.

Thank you for your support. It helps a lot. And Hellenbach - thank you. I have a horrible feeling this might become a medical negligence issue.

gingeroots Thu 11-Apr-13 08:56:24

daisy I don't know what to say .

That is beyond dreadful .

I think writing stuff down and then trying to leave it is a good approach .

I hope you have people to support you . I hope your mind protects you by continuing to make it seem unreal ,as if happening to someone else .

Think how you would treat someone else going through an unimaginably hard time and try and look after yourself .
Maybe get some sleeping tablets from GP ? Some have very little "hangover" effect ,zoplicone ?

x x

coreny Thu 11-Apr-13 12:32:40

I'm so sorry you've got all this to deal with daisy. It's just terrible.
Perhaps you could write it all down and put it in a drawer somewhere to come back to after the funeral. xx

lisad123everybodydancenow Thu 11-Apr-13 22:12:53

Message withdrawn at poster's request.

Hellenbach Thu 11-Apr-13 23:16:31

Daisy -been thinking of you all day.
How are you doing?
Hope you have got some support around you
X

Lovely ladies - I've been thinking of asking MNHQ to move my posts about MrD's passing from this thread and start one in bereavement for me.

This thread is about support, love, fear and fighting. It isn't right that it includes this awfulness.

I am doing OK so far; it still feels completely unreal. Like he is the hospital getting better and will come home later on. I know he won't, but that's what it feels like. I am surrounded by him; his clothes, his laundry, shoes, phone, ipad, coats, hats and gloves. What do people do with all this stuff? I can't even wash his dirty clothes at the moment - it feels that I'd be washing the little bits of him that are left away.

I have got a fantastic support network - really I have and I am blown away by the messages of sympathy and love which are flooding in.

To cap off the awfulness, Daisydog3 spent yesterday at the vet - and when I picked her up, they said that with her collection of ongoing symptoms, and as she is not yet 3, they have a strong suspicion that there is some sort of cancer either growing or starting to grow in her. Poor bloody thing. Blood test results will be in today or Monday which they hope might give them a pointer or two. Poor little dog.

echt Fri 12-Apr-13 07:31:54

So sorry for your loss, and its frightful circumstances, daisy.

I've never posted on this thread, and hope I don't appear impertinent when I say keep a record of all your conversations with the relevant professionals. They look blush now, but the arse-covering may start any time soon.

I'm sorry about your pooch, too. No less of a worry and care for being a beastie.

lisad123everybodydancenow Fri 12-Apr-13 09:19:07

Message withdrawn at poster's request.

gingeroots Fri 12-Apr-13 11:15:31

Oh daisy ,not the dog ill as well .
I'm so sorry .

Don't do anything at all that you don't want to ,don't make any hasty decisions .
Don't wash those clothes .

Let the unreality of the situation buffer you a little ,don't try and question or fight it . It's your mind protecting you a tiny bit ,take it in as little as you can for now .

Good advice from others about writing stuff down and not moving these posts . Maybe duplicate them ,but not move .

G x

coreny Fri 12-Apr-13 11:27:07

I'm so sorry about daisydog3 -I hope you get some better news on Monday. Please don't feel that you need to move from the thread - we are all here to support you.

I agree with echt about keeping a record of meetings with professionals if you feel able to. Is there somebody that can go with you to meetings to handle that for you?

I'm so sorry you're going through all this x

MrsShrek3 Fri 12-Apr-13 15:05:40

daisy, stay. it's what we're here for.

JulieMumsnet (MNHQ) Fri 12-Apr-13 18:47:50

We're so very sorry to hear this, daisy. We're all thinking of you.

God. I hope the numbness stays a while - when I first wake up it's not there and the pain is overwhelming. I so, so loved him. I have found a little poem for his service of thanksgiving though which is a start -

He is not lost our dearest love,
Nor has he travelled far,
Just stepped inside home's loveliest room
And left the door ajar.

But I've got so much more to sort out. So bloody much. I went to the registry office yesterday to register his death, but they advised me that I need to speak with the Coroner because of the circumstances. I tried to write the notes yesterday afternoon, but the phone didn't stop. At all. Mostly from the hospital, the vet, the funeral director and stuff. I will do it today though and turn off the phone - before I start to forget things. I have a problem with my MIL brewing - she wants to hold her own service for him where she lives which I am not included in (neither are his siblings). I absolutely don't want her to. I am furious with her. I know she is grieving badly, I cannot imagine her loss but he is my husband and he chose to live here, with me, in an incredibly happy marriage and this is where we should send him on his way. Not there. And not with a split in mourners.

DDog 3 got bloods back and had a very low glucose level which indicates an insulinoma - agressive, fast growing cancer of the pancreas. They'll repeat the tests to be sure it wasn't a blip but I'm not surprised by the news. I know that if it is confirmed, I can't put her through treatment. Depending on its progress, there's surgery or medical management - surgery gives her maybe a year and MM gives about a month and a half. She is a dog. I can't explain what is happening to her, and she can't decide herself; treatment just wouldn't be fair. Poor girlie. After a long and challenging few years, she has finally turned into a fabulous dog.

Thank you for encouraging me stay here. I feel quite at home and I am sure you will all win your battles - we knew we were on the losing team from the outset; the docs left us with no doubt.

gingeroots Sat 13-Apr-13 09:56:56

Oh Daisy ,Daisy , i'm so sorry .

That horrible realisation on waking up must be terrible to go through .

His mother is wrong and selfish . He's not just her son ,he's your love and if she had any awareness she should be happy for him that he found you and should celebrate it .Not try and deny it and sweep it away .

I have no idea as to how you resolve that situation - could someone in RL help ?

I love the reading you've chosen . It reminds a little of this one

^A ship sails and I stand watching till she fades on the horizon and someone at my side says She is gone
Gone where? Gone from my sight, that is all. She is just as large now as when I last saw her. Her diminished size and total loss from my sight is in me, not in her.
And just at the moment when someone at my side says she is gone there are others who are watching her coming over their horizon and other voices take up a glad shout There she comes!
That is what dying is. An horizon and just the limit of our sight.^

Hugs to you and daisydog .

Turningupsidedown Sat 13-Apr-13 17:29:10

Oh Daisy, having finally managed to get back on here after a bit of an absence for a few weeks. I am so terribly, terribly sorry to see your news. sad I am so, so sad for you, especially given the awful circumstances. The loss on its own of dear Mr D would be shock enough, particularly as he had been doing better, but to be told is shouldn't have happened, I am gutted for you, it must be incomprehensible. I am so sorry too, that there are family difficulties over the funeral and also DDog3 - our pets our so much part of our lives and it is very hard that you have this to deal with this too right now.

I too hope you don't go from the thread, although it is a good idea to open another as there will be people there you will know what you are going through now. But you are a part of this thread and it is for everything that comes with supporting a DH with cancer, including this ultimate awfulness. You have supported me and others during the last few months, I hope that there is some support in the words we write, although they feel inadequate in these circumstances.

I also love the poem you have chosen and also gingeroots poem. You will work out a beautiful service, your love for MrD has always just shone out of your posts. I hope you and your RL support will resolve the issue with your MIL and I am sorry that is added stress. Wish there was more I could do than just send you all my love and virtual hugs. xx

To everyone else, including the new people, that I am sorry have found themselves here, I will catch up with how things are going soon, but right now just full of thoughts for Daisy sad

TorianaTollywobbles Sun 14-Apr-13 18:03:31

Hello. Posted for first time last week as dh was undergoing tests for cancer.

Came to thread to post results and saw daisy's awful news. I am so so sorry and my heart goes out to you daisy. Just tragic and even more so because it should not have happened. I wish you all the very best.

Dh's results have come back positive for cancer, I don;t think either of us were surprised by that. It is in his bowel/rectum. However, thank goodness it has not spread and they are operating next month. He may need radio or chemo, we won't know full details until we see the surgeon.

The bad news is because of where it is, it may result in temporary or permanent colostomy. We hope it won't come to that, but if if does we will have to cope.

We are lucky in some ways that it is treatable and must count our blessings in that respect. It's still a shock and both of us are still trying to come to terms with the news.

I hope that no one minds me posting here as a newbie so soon after daisy's news. Best wishes to everyone on this thread.

You may know this, I find it incredibly moving - Leo Marks.

The life that I have
Is all that I have
And the life that I have
Is yours.

The love that I have
Of the life that I have
Is yours and yours and yours.

A sleep I shall have
A rest I shall have
Yet death will be but a pause.

For the peace of my years
In the long green grass
Will be yours and yours and yours.

lisad123everybodydancenow Sun 14-Apr-13 19:07:15

Message withdrawn at poster's request.

gingeroots Sun 14-Apr-13 19:49:22

Dear daisy thinking of you .

gingeroots Sun 14-Apr-13 19:52:40

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 ?

Inaminutenow Sun 14-Apr-13 20:33:48

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!

TorianaTollywobbles Sun 14-Apr-13 20:47:28

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).

gingeroots Sun 14-Apr-13 22:29:50

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 .

MrsShrek3 Mon 15-Apr-13 01:16:11

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

Hellenbach Mon 15-Apr-13 21:37:13

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

MrsShrek3 Thu 18-Apr-13 03:41:22

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. amhmm confused

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.

gingeroots Thu 18-Apr-13 11:24:16

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 .

gingeroots Thu 18-Apr-13 11:25:21

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

MrsShrek3 Thu 18-Apr-13 21:30:23

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.

Turningupsidedown Fri 19-Apr-13 01:46:36

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 sad 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 confused . 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 smile .

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 sad 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.

Year11mum Fri 19-Apr-13 21:04:23

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

TorianaTollywobbles Fri 19-Apr-13 21:50:13

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.

Year11mum Fri 19-Apr-13 22:31:43

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.

TorianaTollywobbles Sat 20-Apr-13 09:07:04

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.

Year11mum Sat 20-Apr-13 15:52:13

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

MrsShrek3 Sat 20-Apr-13 23:04:52

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

digerd Sun 21-Apr-13 07:57:59

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>.

gingeroots Sun 21-Apr-13 08:56:14

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 blush 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 .

TorianaTollywobbles Sun 21-Apr-13 20:26:27

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

MrsShrek3 Sun 21-Apr-13 21:48:39

talk of "markers" hmm (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)....

gingeroots Sun 21-Apr-13 23:07:10

aah , I see .
sort of ..

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

cornydash Sun 21-Apr-13 23:18:18

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. flowers

TorianaTollywobbles Mon 22-Apr-13 19:19:20

Hello cornydash. Good news about your ds, hope he continues to do well and that he has a successful reversal. Had his cancer spread from his colon? Dh did have a CT scan and all was clear, so we're not sure at the moment whether he will need chemo. We'll know more when we've seen the consultant next week. Good luck to your ds.

Hellenbach Mon 22-Apr-13 20:22:10

Daisy how are you baring up?
Thinking of you this week and sending you hugs to help you through this tough time, stay strong
X

cornydash Mon 22-Apr-13 20:25:07

oh no blush I don't know why I posted ds - it's my dh that's been ill blush I'm sorry

MrsShrek3 Wed 24-Apr-13 22:00:05

just been on the crafting/ knitting thread, blanket in progress for Daisy if any of you hadn't seen.
hugs, Daisy, if you're around.

Turningupsidedown Wed 24-Apr-13 23:34:38

MrsS Sorry to say I am useless and can't find that thread, can you link? Daisy you are in my thoughts constantly, the minutes, hours, days, must be terribly unimaginably difficult, hugs and love.

Thanks thanks to all for your responses on DH, especially Daisy can't believe you were responding to my concerns re DH while facing such a difficult day sad DH did contact Macmillan nurse (especially when I told him everyone here was agreeing with me!) It is looking like it is to do with reduced circulation in his leg as a result of surgery and following advice is improving, but he also has an appointment to check it, so am a bit less stressed about it now. Thanks all, mostly keep the stress bottled up anywhere else, but always find I can say what I feel on here - in fact only realised how stressed I was about it after posting here.

Hope everyone else doing ok - any further forward on the results MrsS?

Hugs again to daisy

gingeroots Thu 25-Apr-13 08:25:43

Well done Turning for getting DH to doctors .
Keep posting ,I think it helps us all .

Another one thinking of Daisy ,sending love and light .And wishing I could do more .

lizardqueenie Thu 25-Apr-13 16:14:01

Hello everyone
I'm grateful to have found this thread but sorry to see that so many if you are going through similar struggles, I've been reading back through some of the thread.

Firstly if like to say I'm so sorry to Daisy about Mr D, thinking of you & i know we've never spoken on here but just know you are in my thoughts, sending you strength. thanks

Our situation is that my DH was taken into hospital last October after he was found to have extremely high blood pressure which caused him to loose sight in one eye temporarily. He was in for about a week whilst they controlled his BP & then they started a number of tests to rule out other things. Just before Christmas we found out he has a small tumour on his adrenal gland. It could be the case that this is causing his body to produce too much adrenaline and is pushing up his BP. During all of these tests & scans a second tumour in his pancreas was also found in February. We found out about this after being copied into a letter sent to his GP, no phone call or consultationsad

DH was then referred from our local hospital to a hospital in London where he has further scans & blood tests. This week he has had 2 scans in the nuclear medicine dept to try to establish (we gather) the characteristics of the tumours and this must also mean whether they are malignant or benign.

It's been a long long road here. I keep thinking of it was serious surely they would know by now I am trying to hold in there hoping the final diagnosis is just around the corner.

Look forward to sharing support with you all.

gingeroots Thu 25-Apr-13 20:18:13

Lizard - hi ,gosh that sounds a long and horrible road and I wish I knew what to suggest .

Could you get your GP to explain to you what the situation is ,even if this involves the GP contacting the hospital on your behalf ? They should do this for you so don't be put off or afraid to ask .

Maybe start a new thread with "tumours in adrenal gland and pancreas ,could this be cancer ? "

There might be people who have experience in this area and know how things are diagnosed .

Do you know when you are due to get results of this weeks scans ? Can you phone consultants secretary and ask ?

Sorry not to be more help ,what a horrible position to be in .

Maybe someone else can offer better advice ?
There's loads of knowledgeable people on here on the Tamoxifen thread ,and they have experience of all different types of cancer and tests .

Hellenbach Thu 25-Apr-13 21:25:11

lizard my DH has a rare type of cancer called neuroendocrine, it started in his pancreas and can also grow in the adrenal glands.
It could be worth mentioning when you go for scan results but your DH would need a biopsy to diagnose it.
I don't want to panic you but it could be useful to know?

Daisy thinking of you, sending you strength for tomorrow

lizardqueenie Thu 25-Apr-13 21:57:21

Ginger & Helen thanks for your advice. I didn't make my first post too long, I've been trying to write it all day & it sounded like I was going on. We knew they are testing him for neuroendocrine tumours- that's what they think it is. There is a possibility that the one in his adrenal gland is pheocrotoma (sp?) but they aren't sure. This tumour is 1cm so I think they would probably look to remove it & then test it afterwards according to what Macmillan said rather than operating there twice. But they still seem to be unsure about the pancreatic one whether it is an endocrine tumour or not. We think his hormone tests were ok so possibly (from what I have read rather than what has been explained to us) it is non-functioning, but this is larger, 6cm.

I'm sorry to hear that your husband has this Helen. How long ago was it discovered? How is he doing? Sorry you may have said this on the thread before I've been trying to follow where everyone is.

Unfortunately ginger the GP hasn't been that helpful. He's a useless GP anyway, but stubborn DH would never change. Need had need to- need went to the doctors- I can't even remember when he has had a cold let alone anything else before this.

He is back at the hospital on Monday for a test for Cushing's syndrome. I am going to go with him as it will be in the PIU & hopefully we can get some answers then about when we'll
Know. DH has been reluctant to chase the hospital, I am sure that he is terrified but I'd rather chase them up & know where we stand.

MrsShrek3 Thu 25-Apr-13 22:52:55

thinking of Daisy tomorrow sad

hugs to all, hello Lizard. hope you get the answers you need soon.

[[http://www.mumsnet.com/Talk/_chat/1739379-Woolly-Hugs-A-Bl thinking of Daisy tomorrow sad anket-for-Daisydotandgertie-Lovely-donors-and-crafters-we-need-your-help blanket thread]]

nothing much to report here. as far as DH goes, they are doing watch and wait. Accepted way to deal with it apparently. hmm

we are having a weekend away. It's a bit strange tbh, the same weekend last year (it's our wedding anniversary) was the last time he felt well. By a couple of weeks later he had developed the tumour. All feels weird confused

MrsShrek3 Thu 25-Apr-13 22:55:21

linkfail

link again to blanket thread
[crossesfingers]

I'm sorry we have two new joiners on this thread. In the nicest possible way, I wish you weren't here.

Tomorrow is the day I have been dreading. It has come so fast. The church looks fabulous - just as I wanted it and I finally feel confident it won't be empty (neurotic?grin). I had a shite day yesterday but today has been better - I have been able to keep myself absolutely occupied. There was a bit of a blubbering, snotty mess on this afternoon's dog walk, but apart from that it has been under control.

I am sitting here in bed trying to work out what to write on the card which is going in the flowers. Nothing seems meaningful enough - nor do I feel literate enough to express exactly what I want to.

MrD's family are here - and in such a mess. Tears, tears and more tears. I have found myself trying to put perspective on this awfulness - to try and make them feel less despairing. I feel concerned tonight - that they'll think I don't care enough - because I am so controlled I know I'm brittle.

I cannot allow myself to think too deeply about tomorrow or my heart will split into a thousand pieces and I fear the grief will be physically painful. I am frightened of the grief (see - a new fear now the cancer fear has gone) the little glimpses I've had of it so far have been enough to make me fear it.

This morning, I got new hair and deep red nails. A wiser, cleverer lady than me once said that red nails will always make you feel stronger. And she's right. So right I've just done my toes too.

Think of me tomorrow and send up a little prayer. I can't express how important the thoughts and support here are to me. I'd never have thought it, but they really, really are. Thank you.

cornydash Thu 25-Apr-13 23:06:35

Daisy I'm so sorry that you're going through this. I'll be thinking of you tomorrow x

MrsShrek3 Thu 25-Apr-13 23:30:51

a prayer and a little candle will be here at the shreks.

Turningupsidedown Fri 26-Apr-13 00:15:00

MrsS Thank you for the link, I have got that underway. We just recently reached that same 1 year on point and it is does suddenly focus you on the before and after. Can understand the weirdness of it.

Welcome Lizard to the thread we wish no-one had to join. Sorry you are having such an awful wait for answers.

Daisy I am so glad you have got everything the way you wanted it to be for tomorrow. I hope you find the words that you want for the card.

It is hard to find words to write to you here that really seem in any way adequate. I am thinking of you so much and am so sad that you are in this situation.

I too will be thinking of you all through tomorrow and sending prayers. May those red nails continue to give you strength through the day xxxx

lizardqueenie Fri 26-Apr-13 06:40:49

Daisy thinking of you today & saying a prayer for MrD, you & your family. I am sure none of his family will think you are being too hard, everyone needs to do what they can to get themselves through & manage the best that they can. I hope that there is support & strength for you from the family & friends you will have there today.

echt Fri 26-Apr-13 08:36:10

So right about the toes daisy. I hope all went for as you would wish.

cornydash Fri 26-Apr-13 08:51:44

thinking of you today daisy x

gingeroots Fri 26-Apr-13 17:34:32

Daisy sending thoughts to keep you safe and cared for .

Have lit a candle .

Red nails and toenails - very excellent thinking .

Please think of yourself and try not to be too drained by others grief .

G x

TorianaTollywobbles Fri 26-Apr-13 18:17:58

Daisy, my thoughts and prayers are with you after such a difficult day today. I hope things went well today, or as well as can be expected.

I want to say more but I don't have the words.

Turningupsidedown Fri 26-Apr-13 21:53:10

Dear Daisy I woke this morning and thought of you, and the strongest thought was of your red nails and the hope that they would keep adding strength to get you through today. In a possibly slightly crazy moment, I thought I would paint a couple of my nails red too so that throughout the day I would see them and think of you. So that is what I did and I have thought of you and sent my prayers every time I have looked at my hands today. I hope that the day has gone as you would have wished and that you have got through each moment.

I have also thought about your description of your grief and the new fear this has brought. I could not find the right words last night and hope that these are not the wrong words now. This thread and this forum are a lifeline, but the one thing I find hard about typing words onto a screen is that day-to-day communication is about so much more than words. This thread is not casual chat, we are all experiencing some of the most challenging situations we will face in our lives. So I constantly hope that I pick my words carefully and they give support when possible and do not cause further stress.

So I hope this is helpful to share. I experienced the loss of my first boyfriend. I met him when I was in my mid teens and he died aged 21. He had cystic fibrosis so we always knew he had a life-limiting illness. 6 months before he died he had a heart and lung transplant. Not a cure but the aim was that he would get a period of better quality of life. It all seemed successful but there were suddenly complications and he died without any real warning. I remember experiencing the feelings you are describing now. The grief did physically hurt. I had to keep cutting it off and bottling it off or I felt like I would lose control and never get it back. The combination of unexpected (at that moment) and premature death was more devastating than any other loss I have experienced and there was not the added component of the knowledge of avoidable loss that you have to deal with. If this were DH now it would be worse, simply because we have been together and our lives entwined for so much longer. What you are experiencing is totally understandable and I just wish with all my heart I could take it away. It took me time to let it out a tiny bit at a time. You will experience your grief in your way and in your own time and you have so much to come to terms with.

It can be very hard to deal with grief with other people, because if they are in front of you then you somehow have to deal with their grief as well as your own. I am sure that most people will understand that you have to deal with things in your time in your own way, but if you are really worried that anyone does not understand, then maybe you could write it down and send it to them ? – it can be easier to write than speak sometimes. If you just wrote the way you do on here then they would understand the measure of your feelings, just as we do sad But I am sure everyone knows anyway.

Anyway, I hope this is in some way helpful and not more distressing and that you have survived today, and given MrD the day that you would wish. My nails are still red and I am still thinking of you. Much love xxxx flowers

lisad123everybodydancenow Sat 27-Apr-13 21:34:11

Message withdrawn at poster's request.

MrsShrek3 Sun 28-Apr-13 05:09:34

pm'd you turning.
Lisa... hoping the results are better than they seem, do I take it that PAT is turning up with her suitcase again? wink

weekend is lovely, ta smile Unfortunately gotta return to rl tomorrow (today?!). It's been a bit odd too, the same weekend last year was the last time DH seemed well, a couple of weeks later the tumor was making itself visible and you know the rest... Had a few tears as all I hoped for during his chemo was to eventually get DH out on walks in the countryside and a camera back in his hands, we share a love of photography and his pictures are amazing. This weekend has allowed us to do just that. so grin and sad rolled together. Lots of things are like that on this journey, I've found.

good luck and hugs to everyone here. Extra hug for Daisy thanks

It went well! The weather was fabulous, the church was absolutely packed with people even having to stand at the back and a very lot of people came back to our house for tea and buns afterwards. It's an odd thing, but I actually enjoyed parts of it. If I ignore the fact that a lot of people were weeping when they spoke to me, it felt like our wedding day. It was the love, support and caring which did it.

The red nails made such a difference (I know I am sounding a little bit peculiar). Every time I looked down at these perfect red gel nails they gave me that little boost which helped me to keep myself together. There were tears, of course there were - but not the overwhelming painful ones which turning you have spoken of so eloquently. My grief is exactly as you describe it and the painful bits sneak up on me when I am not expecting them. I am sorry you experienced such awfulness so young, the enormity of it is hard to understand even at my age so in your early teens it must have been horrific.

And I LOVE that you painted some nails red in solidarity, really really love it. Red nails are my new coping mechanism; I'm glad I got gels done for the first time - they may even last a few days.

Lisa - I hope you're OK; do let us know won't you? And of course that MrL's blood tests are good too. I expect the old cow PAT has unpacked her bags and made herself at home by now.

MrsS - I'm glad you got your normal back again for a while. And even had wonderful weather for it too. We had a holiday booked for exactly the same reason and were due to go on the Friday after Mr D passed away - I took the roofbox off the car yesterday! I am so pleased that you got a lovely - and I understand the tears - weekend.

Thank you all for your support and kind thoughts - it must be especially hard for all of you to think about where I am and your sympathy and kindness is appreciated all the more for it. thanks

I must now head over to the wooly hug thread - I am utterly overwhelmed by the offer of a blanket, and even more overwhelmed by the number of people who are giving up their time for a complete bloody stranger to make it. Not sure how to express that when I get there, but I'll give it a go.

echt Sun 28-Apr-13 07:39:17

So pleased for you daisy. For such a man as your DH was there must be joy with the tears.
smile

gingeroots Sun 28-Apr-13 09:38:12

daisy so pleased for you that things went well .

I so understand when you say it was reminiscent of your wedding .
Well done .

gingeroots Sun 28-Apr-13 09:42:03

lisad123 - how are you ?

I don't know what to say ....both of you ill ?

Have you support from family and friends ? Are you still in that horrible void where results are pending ?

Thinking of you .

MrsShrek3 Sun 28-Apr-13 10:14:39

Daisy, that's beautiful thanks

lisad123everybodydancenow Sun 28-Apr-13 12:49:59

Message withdrawn at poster's request.

TorianaTollywobbles Mon 29-Apr-13 16:47:49

Daisy, I am pleased things went so well, it can be a comfort.

At my dad's funeral last year, me and my sisters chose a motorcycle hearse for him, he had been a biker all his life. When it came round the corner, it just made me smile and everything went well from there. I was so proud that he had so many friends and family who were there who loved him.

Take care of yourself.

Thinking of everyone else too, lisa123 I hope you get to the bottom of what causing your illness and that you will soon feel better.

Due to see the surgeon in prep for dh's op on Wednesday. Feeling nervous now its getting closer, I think I am starting to realise that it's not going to be an easy time over the next few weeks. Not that I didn't know that anyway, but it just felt like 'oh ok he'll have the op and he will be fine' and I'm sure he will be but the closer it gets the more it is starting to hit me I think. Oh well we will see on Wednesday.

gingeroots Mon 29-Apr-13 21:29:20

Torina hope Wednesday clears up some questions for you . It's such an anxious time ,I do feel for you .

Take a pen and paper /notepad to jot things down . If nothing else it makes the speaker slow down .
Ask who you can contact if after the meeting new questions occur to you or you want to have something explained again .
And ask when's a good time to catch them / can you leave a message .

cornyderpy Tue 30-Apr-13 07:36:22

Hi Daisy I'm so glad dh's funeral went well. I have a little pot of red nail varnish on my dressing table - everytime I see it I think of you now!

Toriana hope it goes okay on Weds.
I remember when my dh was dxed sitting up in the early hours doing an advanced search on his particular cancer and the ileostomy. It's was very worrying as the idea of the op and bag etc happens so quickly.
The consultants were very good at explaining everything though. We also went into a room with the nurse who had been present after the meeting, so that we could ask any questions.

Turningupsidedown Wed 01-May-13 00:12:35

Daisy Lovely post, I am so glad to hear that the day went so well and you found so much support there. Thinking of you all the time, but do let us know if there are particularly tough days ahead - will gladly paint my nails red whenever you especially need support smile.

MrsS have pm'd you back, so glad you had a lovely if emotional weekend away and were able to enjoy something you love together. I also love photography (another thing in common wink ) although DH is clueless grin

Lisa so sorry you are waiting on so many results for both of you, double dose of PAT hmm And love the new acronym SOM will be using that one but does all sound like a lot on your plate, hope you are getting somewhere with the packing/move. (We shall have to get your acronyms added to the mn list so new people know what we are talking about grin )

Lizard hope you got on ok on Monday - did you get any more idea about things?

Toriana thinking of you for tomorrow, DH had a couple of ops last year, it is daunting when it is suddenly about to happen. Hope it is not too long an op to wait through.

Hope everyone else is doing ok at the moment, thinking of you all.

MrsShrek3 Wed 01-May-13 19:34:11

hi all
just called in to see how Toriana got on.

TorianaTollywobbles Wed 01-May-13 20:39:04

Hello. Went ok today, fairly much as expected. Consultant confirmed the diagnosis, and that the cancer is localised to the bowel. He thought it was possibly a stage 3, which worried us a bit, but he said that he won't know for sure until op done and sample tested. I think we were expecting something like stage 1 or 2 at the most. Again we won't know about chemo for sure until after op, and they confirm the stage.

He also confirmed dh will have a temp ileostomy, which again we were partly expecting but hoping it wouldn't be the case. But with where the tumour is, in the rectum, it needs more time to heal properly because the blood supply in that area is low, and to make sure there are no leaks. Could be in place up to a year if he needs chemo.

Dh's main fear was that the ileostomy would be permanent, so he feels better in some ways it will only be temporary. But even when the reversal happens, it will take sometime for bowel function to get back to normal.

So we are feeling ok in that there was nothing unexpected, but it feels more 'real' now. The op is only 3 weeks away, and it feels like this will be last few weeks of normality for a while, which is scary.

We have a named nurse/keyworker who went through everything with us, gave us lots of leaflets and information plus a DVD of how to change a bag! So we have lots to think about and take in. Consultant did say that we were lucky to catch the tumour at this stage, so we are trying to take comfort from that and think at least we are in a good position where it is treatable and hopefully completely curable. Others aren't so lucky.

On the other hand you still get angry, why us why now? But we have lots of support from family and friends which is good, plus you lovely ladies on here. We will get through it.

Thank you all for asking, thinking about you all too.

MrsShrek3 Wed 01-May-13 21:47:58

thanks for the update. Being "expected" somehow doesn't stop it feeling like a shock, though does it.... confused no idea why. As you say, it becomes real. Ask absolutely everything you want to know from the health professionals until you have all the info you need. IME they are amazing. Will be thinking of you.

cornyderpy Thu 02-May-13 00:04:02

I'm glad the meeting went okay toriana.
dh found that the staff were great when he had his ileostomy. There was lots of support afterwards as well - the stoma nurses are fantastic.

Immediately after dh's OP he struggled to wear his usual trousers and we had to buy him a few pairs of tracksuit bottoms - it might be an idea to start looking now if he doesn't already have some.

lisad123everybodydancenow Thu 02-May-13 07:21:14

Message withdrawn at poster's request.

Turningupsidedown Thu 02-May-13 15:10:52

Hi Toriana sorry sorry, I got confused and thought your DH was having the surgery yesterday. Glad you got plenty of information about it all. Great advice given already. As Lisa says, the anticipation and waiting are always worse, no matter how much information you get it is unknown and daunting territory. Once it is happening, you are in it and just getting on with and dealing with it. But it is full-on and very tiring so all of Lisa’s advice is great. The more that is practically prepared the better and also gives you practical things to focus on while waiting.

Another thing you might want to think about is ways of updating family and friends because it can be very stressful and exhausting trying to keep on top of that if you have had full days of hospital visits, appointment, keeping the household going etc. I know Lisa did a blog (think there is a link somewhere on this thread unless it was the last one). I found I needed to give different levels of information to different groups of people IYSWIM and we have a lot of family overseas so I set up email and text groups on my phone and could then just compose one or two updates and mass send. You may also be able to designate one person to do this for you and then you just update them. All depends on your circumstances but worth thinking about beforehand not in the midst of it like I did so I kept realising I had missed people out

I think you have a DD? Also worth talking to her school so they are briefed and can provide any support needed there. Just them being aware that you may not be on top of things at home in the normal way helps so they can make allowances. My DD’s school was fantastic and even arranged counselling for DD1 when she was struggling.

Don’t know how long your DH is likely to be in for/how far away the hospital is but I ended up staying over for two nights when DH was in and spending chunks of time with him (as hospital not nearby etc.). So think too about what you might need to take with you and make a list (e.g. so you don’t forget essentials like phone charger like I did ) If you need any tips on what to take for you and dh, do ask, I am sure a few of us can make suggestions.

I will stop rambling on now as I might be telling you things you know/have thought of smile , but let us know if any of this helpful or you need any more ideas.

TorianaTollywobbles Thu 02-May-13 20:01:51

Wow, some great advice, thanks so much.

In some ways yes we just want the op out of the way now. On the other hand, I want to hold on to normality for a while longer. We are trying to plan certain things that we need to do in the next 3 weeks, just silly things really like jobs around the house that dh won't be up to for a while. I know those things don't matter really, but sometimes its the little things that bug you and having them out the way will help us concentrate on whats important. I also have a list of other jobs I can do while I'm off with him.

It is the waiting thats the worst, you spend so much time wondering how and what it will be like, but as you say Turning and Lisa, once its done you just get on with it. We are trying to look at the op as the first step on the road to recovery. Also we'll know more about future chemo treatment when the op is done, so will be good to know that one way or another.

Corny, that is a good tip re trousers, we had already planned to get some more so will need a shopping trip shortly. Can I ask whether your dh also wore underwear, we were thinking some loose cotton boxers or something would be ok, but it is better without? Did he find it difficult to cope with at first (the stoma that is) and how did you deal with that? How long did it take before it became easier to cope with. We have watched the DVD given to us by the hospital and the worst bit looks like changing the bag.

Turning, we do have a dd and have already told the school about his diagnosis, but I will certainly remind them about the op coming up that is a good idea. Although when dh comes out of hospital she will be off school for halfterm. Which brings its own set of problems as normally he looks after her in school holidays! Luckily the hospital is only about a 20min drive away so shouldn't need to stay over, but tips about what to take for him would be appreciated, as I'm sure I would forget something vital.

I am trying to decide how much time I need to take off work myself. I work ft, but work have been great and will give me some paid special leave. He goes in on a Thursday so will need that day, and so thinking about having the Friday also. Then he will be out sometime the following week, so don't know whether to take the whole week or try and go in a day or two, and also probably take some of the following week as well, if not all. So that means two and a bit weeks in total, can't really take any more than that. Do you think that will be enough time off? I know he will need some looking after those first few days out of hospital especially and also with getting used to the ileostomy. It's just trying to juggle how much time I can have with how much he will need me. Any advice on that?

cornyderpy Thu 02-May-13 20:59:33

hi toriana

I bought dh some of the high waisted boxers which are designed to wear with stomas after his OP, but he didn't really like them. He does wear a belt covering thing which is like a lycra band. He wears that a lot - can't remember where we got it from (somewhere online) but will check.

I think he was okay with his usual boxers. He doesn't wear fancy boxers - just Mand S and Tesco type of thing, so they weren't tight fitting or anything. Around the house he wore jersey PJ bottoms a lot after the OP. Just really comfy stuff really.

I had time off work during his hosp stay, so that I could sort the ds's out and also to make trips to and from hospital. He was in hosp for a week. I was off when he came out as it coincided with half-term (which was very handy!)

You may have to take it as it comes after the OP. Planning to take a few days when he first comes out and then seeing how dh is will probably be a good idea.

lisad123everybodydancenow Thu 02-May-13 22:59:23

Message withdrawn at poster's request.

Hellenbach Sat 04-May-13 11:38:22

daisy so pleased it all went well. How are you coping now, one week on, have you got lots of people around you? I think after the funeral, when the dust settles, it can be a tough time.

Lisa do hope you are okay, it all sounds very stressful

How is everyone else doing?

We have scans on Thursday and the results probably the week after. It's been 3 months since DH started the chemo tablets since the failed chemo, so we are anxious to know if things are stable. PAT is well and truly in the house!!!

lizardqueenie Sat 04-May-13 15:48:25

Hello everyone

Sorry I've not posted for a while, found great comfort in this group & just haven't had chance to get on the laptop so hard to read & respond meaningfully to what everyone is up to at the moment but I'm thinking of you all (hugs) Thought i should just pop my head in otherwise it will ages until I can post again.

We aren't that much further on this end really, DH went for 3 days of scans week before last on his adrenals& pancreas. Looks like the MDTeam have met again & decided to refer him to another MDTeam who are pancreas specialists. So he has more mris lined up for the following 2 weeks at kings & st Thomas's then out of the blue a appointment for a liver specialist at kings turned up this morning but we aren't really sure why.

I know this can be such a long, frustrating journey for us all& much for the time you feel in limbo but feel we've been in limbo for months now & no-one is really directing us to tell us what will happen next/ next steps. Sorry to moan but DH has thrown himself into his work but taking ins private contract in addition to his FT job, I can see why but just wonder if its the best thing for him at the moment. Mentally probably yes, physically I'm not so sure. Feeling a bit angry with life really.

Hellenbach Sat 04-May-13 21:59:20

Lizard I pm'ed you a while ago about neuroendocrine cancer.
It is very common to find it has spread to the liver (my DH has multiple liver tumours). I guess it is a precaution to scan there.
We go to the Royal Free, they are a NET specialist centre.
The Hammersmith also have a good NET clinic too.
Thinking of you x

MrsShrek3 Sat 04-May-13 22:57:12

just been reading... so sorry to hear lots of us are doing the revolting waiting thing atm. Hang in, all smile

digerd Sun 05-May-13 07:10:14

My friend's DH had his reversal last Tuesday, and did have difficulty with his bowel movements, so had the treatment, and then he couldn't stop going. That is all normal and will pass.
He had no chemo as was caught before it spread, so very lucky. He is in his 60s.

lizardqueenie Sun 05-May-13 08:16:35

Hi Helen, thank you for your PM- I thought I had replied just after you sent it. Just checked from my phone though & it doesn't look like I sent anything but I can remember emailing you! So sorry you must have thought I was very rude, not sure what's happened to it.

Thank you so much for the info you gave me, particularly the website I've found that quite helpful.

Yes I am sure they are making more checks to see if it has spread anywhere else but it's an appointment to "have a discussion with one of the team" so not sure what that will involve if they will tell us some kind of news or if its to get the ball rolling with liver tests. He's had months & months of scans & tests now, you sort of hope if they had found something else they would already know.

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.