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how the heck do I support DH tomorrow if the consultant tells him he has cancer?

(690 Posts)
MrsShrek3 Mon 23-Jul-12 22:57:20

sigh. just that. DH has Big lump in neck. Various doctors, registrars and pathologists looking very worried and saying he "should have been told more". Appointment with his own consultant tomorrow afternoon. Worried sick, but wtf do I do to help him? He doesn't want me to go with him, he;d rather I keep the children with me.

You must go with him. Park the children with somebody and go and hold his hand. If it is cancer you need to ask what the immediate treatment plans are but you need to let him ask about prognosis and decide what he wants to know.
Then you go home, have a big cry and get on with things. Best case it won't be cancer, next best case is that it is but it's very treatable. It will need to be a team effort so go in tomorrow with the attitude that whatever the hell it is , it gets a bit of time when it's in your lives but you will be showing it the door together and it's you and him that make choices, not the illness. Take any help that's offered with the kids and don't under estimate the demands on your energy as well as dh's.

Pleiades45 Mon 23-Jul-12 23:02:58

What a worry for you. I think I'd wait until he got home and then when the children are in bed let him talk it through. Listen and when he's done talking perhaps then you will know what to say to him.

LackaDAISYcal Mon 23-Jul-12 23:04:05

sad I hope the news is better than you are expecting, but in the event that it isn't, your DH would be better having someone with him. Not least for moral support but also to take in more information than he probably will himself, especially if it's not good news, or a complicated diagnosis, and to ask questions that he may not be able to articulate himself.

Good Luck x

RaisinDEtre Mon 23-Jul-12 23:04:08

yes, what NL said

take a pen and paper to jot down stuff, because you won't remember even half of it

fingers crossed here for you

MintyMojito Mon 23-Jul-12 23:05:04

Fuck. Don't know what to say but want to wish you good luck.

Catsdontcare Mon 23-Jul-12 23:06:12

Yes I think you should go with him because if it is cancer chances are he won't be able to take in much information from the doctor and if you are there then you can ask questions too.

I really hope all is ok

That's a good point. See if you can get the consultant's e-mail address. Some are happy to get e-mails from patients. Helps people articulate their questions and get straight answers. If no e-mail then you want every phone number they've got!

MrsShrek3 Mon 23-Jul-12 23:06:46

He really doesn't want me to go with him cos he knows I'll cry so have resigned myself to respecting his wishes. I have asked him numerous times to let me come too but he really doesn't want me to.
Fingers crossed that you're right. Google (yes, he's googled. I haven't, but he keeps reading me bits --and making me cry--) says that if it is, the chances are that it's quite treatable and curable. Just so sad that we are in this place at all.

worryingwillow Mon 23-Jul-12 23:08:32

Go with him.

Good luck.

MrsJREwing Mon 23-Jul-12 23:09:58

My cousin had cancer in her neck several times, she had kids after too.

I would cry too. I nearly cry at dentist check ups! But you know what - even crying I can still hear and think things through. I'm sure you're the same. I suspect he thinks he can protect you and also doesn't want you to see how he would react to bad news. Thig is - you're a team. If it is cancer you will need to be a partnership like never before. Stressful eventslike serious illness will pull you apart if you let it so you need to start off from a firm foundation. If he doesn't want you to come then that's hard. I think you maybe should ask him to request another appointment in the next day or two if it is bad news so that you can have your cry them come along to get your head round everything. Don't let him take no for an answer on that. That's waht my sil and bil did when sil got some crap news. In her case a big op was required and then went back a few days after her appointment together so bil could interrogate talk to the doctor.

goodasgold Mon 23-Jul-12 23:12:56

Go with him. Just so that he doesn't have to break any news to you. Insist, get somebody to mind the children. I think that he is trying to protect you, when he needs help the most.

I hope that it goes well and that your worst fears are not realised. If they are come back and we will try to help you as much as possible.

scottishmummy Mon 23-Jul-12 23:16:26

go in with him
take prepared questions all the what ifs
if at all possible arrange childcare so you can both go for coffee,debrief

and I really hope you get encouraging news
if if is worse case sceanario then you still have options and take all support offered

If he and you are certain that he really does not want you with him (he is not just protecting you in a He-man kinda way?), then at least suggest that somebody else is going with him (a brother/friend/anybody really).

If it is bad news, he is likely to hear no more beyond the word 'cancer' and a lot of things about treatment options/prognosis etc will have been said of which he will have little or no recollection.
Encourage him to write questions he or you might come up with down and take these lists with him. Get somebody to take notes during the consultation.

Hopefully his consultant is good at the communication bit, will give him some breathing space and ideally a further appointment in a few days to discuss things again.

Do not let him go alone - 2 sets of ears and 2 brains are better than one (scared one).

Really hoping that it will not be the news you are both dreading. Fingers crossed here xx.

Annshuz Mon 23-Jul-12 23:19:35

I think even if he is adamant that you dont go with him you need at the very least to be on-call, nearby or even at home without the children so that if the news is bad you both have the chance to deal with it as a couple and without the distraction of children around. He might change his mind at the last minute, and at least if you're with him in the waiting room you'll be there to support him immediately.
It must be so worrying for both of you, I hope the news turns out to be good news.

GrimmaTheNome Mon 23-Jul-12 23:19:57

He sounds like a very level-headed person - have you pointed out that it is generally recommended (I don't just mean here!) that someone else goes along as note-taker?

If he really doesn't want you to go, give him a notebook and make sure he at least gets the consultants email/phone number if he doesn't already have them. Also (whether you go or not) a written list of questions depending on various possible scenarios might be an idea.

squeakytoy Mon 23-Jul-12 23:20:04

Tell him you are going with him, and that is that. Tell him that you are his wife and that you understand he thinks he should do it on his own, but you want to be with him, so that whatever the news is, good or bad, you can face it together, not be sat there worrying with the kids waiting for him to call you.

PizzaSlut Mon 23-Jul-12 23:20:10

Please find childcare and go with him. If its bad news a clear head to take everything in will be essential, as will a comforting shoulder.

Hoping its good news.

JustTheRightAmountOfWrong Mon 23-Jul-12 23:20:38

Don't have any advice but just wanted to say good luck for tomorrow x

Annshuz Mon 23-Jul-12 23:24:52

Another thought. I had a couple of medical things where I had to go to hospital and instead of saying "of course I'll come with you" DH said asked "do you want me to come with you?". I explained to him that of course I bloody wanted and expected him there and couldn't believe he was asking. Anyway, maybe your DH is just feeling he wants you to tell him you're coming? (Apologies if I'm com

c4rnsi1lk Mon 23-Jul-12 23:25:11

have pmed you....will be thinking of you tomorrow x

Annshuz Mon 23-Jul-12 23:25:38

... Pletely wrong)

GrapesAnatomy Mon 23-Jul-12 23:25:54

Do go. In the past when dh and I have gone to doctor's appointments together (with me as the patient) sometimes when we hace come out, it's almost as if we were in different appointments. The doctor said one negative thing and that is all I heard.
I do hope things aren't as bad as you fear. Good luck for tomorrow.

CointreauVersial Mon 23-Jul-12 23:29:56

Good luck tomorrow.

At least you'll get some answers, and have some idea of how to move forward. Better than the uncertainty, possibly? Fingers crossed it's nothing.

You should go with him, never mind what he says!
My Dad has an appt this week for what we are certain is going to be a cancer diagnosis. The hospital have made it very clear to us that he must not come alone (there are 5 of us going with him, but we are a very dramatic family!).

If there are important things going to be said and remembered, it is vital that there are 2 of you there.

Best of luck x

GreenEggsAndNichts Mon 23-Jul-12 23:32:38

I'm leaping to conclusions here when you say he has a lump in his neck. My husband had a large lump in his neck, it turned out to be Hodgkins lymphoma. He found out at the appointment, went back to work and told me on MSN. hmm I got more upset than I thought I would, he came home and we held each other for a long time. We'd just been married that year.

Anyway, it's 8 years and a DS later. Chemo was an utter bastard, but it did the trick.

I'd do what he wants on this. If he wants to go in alone, let him. He might want to process it a bit on his own.

Good luck. /hugs

Onlyjoking Mon 23-Jul-12 23:34:52

Tell him you want to go with him, he may think he's ok to go alone, but I think it's always best to have someone with you.
I hope your fears are unfounded.

lisad123 Mon 23-Jul-12 23:35:15

Go with him please. Dh my dh news wasn't great and he has cancer but I still go to his appointments. He forgets most of what's said, forgets to asks the questions he wanted And gets in a tiss about blood work and chemo.
Hope you have good news but trust me when I say go because if it's bad news you will have loads of questions he had t considered x

GreenEggsAndNichts Mon 23-Jul-12 23:38:00

btw I attended all subsequent appointments with him, as we both found it helpful to have two sets of ears for certain things. I kept a diary of things we were told to do, and later on, how he responded to certain things over time during his chemo.

I think the diagnosis appointment will not tell you a whole lot more than he's probably read on the internet. They will then need to bring him back for follow-ups, test his bone marrow to make sure it hasn't set in, etc. I was there to hold his hand through that, and everything else.

I think my husband was content to be alone for that diagnosis and so I don't think it's odd. I can see I might be in the minority. smile

lisad123 Mon 23-Jul-12 23:38:40

Cancer is a huge battle that cannot be done alone, and of it is cancer it's certainly not one you want to start alone. Insist you go and you'll be amazed how strong you might be when he needs you to be.

UserNameNotAvailable Mon 23-Jul-12 23:40:18

How is he getting back from the hospital? If he is driving and it is bad news he might be too shocked and upset or too distracted to drive safely. I know you want to respect his wishes but I agree that he needs you to take the info in and show him that you are there for him. I know it's hard but I think you need to be strong and not cry as he probably feels that he can't get upset/angry. Because he has to look after you and I don't mean that in a horrible way.

I hope its good news.

I hope you can persuade him that you going with him is the best way. Do you have childcare available?
Can you just not really give him the option?!

I think he'll appreciate it whatever the outcome, but hopefully do you can celebrate together. Best of luck.

ineedamiracle Mon 23-Jul-12 23:47:52

Go and hold his hand......good luck xx

cocolepew Mon 23-Jul-12 23:48:56

Tell him you're going, so what if you cry? The drs have seen it all before. If you can, try to write things down you would like to know if it is bad news.

Wishing you all the very best.

MrsShrek3 Mon 23-Jul-12 23:57:03

Just been away having another conversation with him. He absolutely doesn't want me to go with him, because he thinks he'll be worrying about me and not concentrating on what's said hmm bless him. I have plans to be in the very local area of the hospital, and have several safety nets for minding the children. Also tomorrow night.
He is very controlled and plugged in. I don't doubt his level headedness for a second. He's completely different from me, as the googling has armed him with the information he needs to ask the right questions and to get the information he needs. He will get it, I have no doubt. And he will remember it, and just bombard the consultant with what he wants to know and get an action plan smile He deals with information well and will treat it as fact. Yes we will do the rest together. How, I have no idea. But we will do it together. The thing is that I don't know whether to just listen to him ramble, ask stuff, not ask, what. Too hard.

lisad123 Tue 24-Jul-12 00:01:10

Only you will know best way forward. I know with us dh wants to know as little as possible but I need to know it all. Dh likes this because if something comes up he knows he can ask me and I will remind him.
If he really doesn't want you there, maybe you can be in hospital or cafe to talk though after. Whatever it is he cannot do it alone, much as he might like too.

If you need to ask then you need to ask. You can't not know things that affect you. It may be that you will need to form a seperate link with his medical team. As long as they know he consents to them speaking to you then you will be able to ask them things he doesn't want to discuss.

SaggyOldClothCatPuss Tue 24-Jul-12 00:08:22

Checking in to offer my support. If he really doesn't want you there, you need to respect that, but definitely be in the building. I'm crossing everything for you both. X

MrsShrek3 Tue 24-Jul-12 00:08:39

I can imagine that any further appointments will be together. Good reserve plan, NorthernLurker smile

lisad123 Tue 24-Jul-12 00:15:53

Tbh he sounds a little like me, I would rather dh stay at home when I'm at appointments than be worrying about kids. Even when I went to London for heart stuff it was my sister that went with me.
I really hope it's ok news tomorrow. What time is appointment?

MrsShrek3 Tue 24-Jul-12 00:37:52

2pm. Spot on, Lisa. As you probably know, leaving ds1 for something unexpected/unexplained is far from simple wink Don't want to out myself any more here grin but afaik you might remember our similarities. Can see how he'd rather do it himself and make sure certain people aren't going to have a meltdown too. Have arranged with him that I drop him off, pick him up and if at any point between he needs me then I'm there in under two minutes. Sounds like the best we can manage in the circumstances. DS1 (and the other two) playing in the park nearby with another friend/relative will be fine, and won't really miss me, if I've taken them there. It's just the "afterwards" that bothers me.

MrsShrek3 Tue 24-Jul-12 00:38:57

Huge big thank you to all of you who have turned up to offer ideas and hand-holding, the messages of support will really keep me / us going tomorrow. Thank you so much, it means a lot.

cocolepew Tue 24-Jul-12 00:51:37

TBH I like to go to things like that myself. If someone was to comfort me I'd go to pieces or get cross confused

Again, good luck.

Come back when you're ready and tells us what's happening. Will be praying for you both tomorrow.

NoComet Tue 24-Jul-12 02:14:28

MrsShrek3 your description of your DH is do like my terribly organised one you've made me cry.
Good Luck and Strength to you both.

ineedamiracle Tue 24-Jul-12 07:13:35

Thinking about you today xx

ErmaGerd Tue 24-Jul-12 07:19:27

Good luck today x

Thumbwitch Tue 24-Jul-12 07:23:49

Oh MrsShrek, hope the outcome is better than you're worrying about! sad

I think your plan is the best - to let him "do it" by himself but to pick him up afterwards so he doesn't have to find his own way home (or drive himself).

I really really really hope it's something simple and easy to fix. (((hugs))) for you all xx

GotMyGoat Tue 24-Jul-12 07:27:21

Good luck today xx

limitedperiodonly Tue 24-Jul-12 07:37:39

Good luck. northernlurker has some brilliant advice.

Losingitall Tue 24-Jul-12 07:38:19

You are in my thoughts today. My Mum didn't want me to go with her, I waited at home with a 1 week old baby, and knew as soon as she got out of the car it was bad news.

HOWEVER

IMO it's not about what you say love, it's about what you do. You'll have to take your read from him. He might want space, he might want reassurance, he might want a hug, he might want to take it out on you.

AND

It might be nothing at all!! My son had a lump in his neck, it was a viral thing, took about 2 years to disappear.

xxxxx

lisad123 Tue 24-Jul-12 07:43:09

Pm me if you like op, my brain is mush and dont want to put you by asking if you are who I think you are.
I hope it goes well today, and that the news is good. A fair few of us are supporting dh though cancer and such so know where you are. It's been three and half years here and somedays are easier than others but just remember you will have questions too and don't be afraid to ask them.

LauraSmurf Tue 24-Jul-12 07:43:39

Good luck today, thoughts prayers and good sunny thoughts to you all.

FWIW I had a similar incident with my mum many years ago with potential liver cancer. They even did MRI saw dark patch on liver, checked whole family for transplant matches. Then found out it was a kidney infection and MRI shadow malfunction!

Not the same, but trying to say things might be better than imagined.

Foslady Tue 24-Jul-12 07:51:40

Just to let you know I'll be thinking of you both today - and be willing it to be good news for you ((weirdy t'internet hugs))

DaisySteiner Tue 24-Jul-12 07:54:01

I'll be thinking of you today too. xx

Thinking of you both today xx

Mirage2012Olympics Tue 24-Jul-12 08:10:15

Thinking of you both and hoping it is good news for your DH.

Thinking of you all, in such an awful situation.
I hope it is good news x

Twosugarsplease Tue 24-Jul-12 08:57:40

Watching this too, so so hope it turns out ok. My dp noticed a lump like a tangerine size in his neck a few months ago, he isn't one for the drs, but he was concerned, it doesn't seem to bother him, and I still think I should push him to go, he has never mentioned it since, but I am too scared its all bad. I won't even check myself incase I find a lump in breast etc.
This post has pushed me to bring the matter up again this evening. X

Thinking of you xx

cocolepew Tue 24-Jul-12 11:14:50

Best of luck today.

Twosugars please make him go to the drs. It may not be anything, my dad had a massive lump and it turned out to be a cyst. But he still needed it removed.

CharlotteBronteSaurus Tue 24-Jul-12 11:22:50

thinking of you both today.

muddymooncupsatdawn Tue 24-Jul-12 11:34:58

Please go with him. Even if he doesn't want you to go into the consultants room with him.( The nurse will bring you in!)

I have been through the same with DH over the past 5 months.
DH had a tumor. We had to wait 6 weeks after his operation to find out if it was the big C or not. Not in DH case.(phew)
It's been a long road, but you will get through it.
I've found i'm stronger than i thought.

Hopefully, it's a cyst and treatment will remove it and you can carry on.
It does turn the world upside down.

I'll be thinking of you both today. (((hugs)))

ImperialBlether Tue 24-Jul-12 11:43:19

I'm thinking of you both now. I hope everything's okay. He sounds a really brave man. I think he's right in a way in that he needs to cope in his own way and if he has to deal with your reaction he won't be able to do that.

RubyGrace17 Tue 24-Jul-12 12:20:25

Thinking of you both.

thinking of you, read this last night and have been thinking about you this morning. Hope it's better news than you fear.

CuppaTeaAndAJammieDodger Tue 24-Jul-12 12:30:02

thinking of you too

We're waiting with you and if it's not good news we'll support you.

mopbucket Tue 24-Jul-12 13:02:38

Fingers crossed for you xx

debka Tue 24-Jul-12 13:09:08

Thinking of you OP xxx

thinking of you OP x

HairyPotter Tue 24-Jul-12 13:13:02

Thinking of you both today. I know how utterly terrifying it is waiting for the diagnosis. We were 90% sure my dm had cancer but sitting in the corridor waiting to see the consultant was one of the worst moments in my life. A nurse popped out to say that they were 'just waiting on the Macmillan nurse to arrive' and there, in that moment we knew it was cancer. sad

I hope everything goes well today, I will keep you in my thoughts.

DreamingofSummer Tue 24-Jul-12 13:13:38

thinking of your both today - lots of cyber hugs

Dolallytats Tue 24-Jul-12 13:34:58

Thinking of you here too x

Liketochat1 Tue 24-Jul-12 13:38:18

Sending more positive thoughts and best wishes.

McKayz Tue 24-Jul-12 13:44:59

Thinking of you both. Hope it's nothing to worry about x

LadySybildeChocolate Tue 24-Jul-12 13:46:41

I hope all is well x

whattodoo Tue 24-Jul-12 13:50:57

Thinking if toying both today.

I hope you both have the chance to 'vent' your emotions later - whether it be relief or anxiety. Just because your DH prefers to keep his emotions in check, don't forget that you are 'allowed' to express yours in whatever way works for you (in private, with a friend if need be).

whattodoo Tue 24-Jul-12 13:51:48

toying you

Charleymouse Tue 24-Jul-12 13:53:46

Good luck MrShrek3
Hope all is well.

bumpybecky Tue 24-Jul-12 13:53:53

thinking of you, fingers crossed xx

Portofino Tue 24-Jul-12 13:54:29

Thinking of you too xx

CareerChangeMum Tue 24-Jul-12 14:00:42

I hope you are OK OP. I guess you will be hearing as I type this. Hoping for good news for you.

RillaBlythe Tue 24-Jul-12 14:03:51

Just read this & thinking about you both.

hope it is good news for you and dh... if it isn't then you'd be miore than welcome to pop over to the tamoxifen thread for some hand holding from people who have all had a cancer diagnosis (hope I'm not being too out of order in saying that- just offering some support) x

mayaswell Tue 24-Jul-12 14:40:37

Fingers well and truly crossed.

swooosh Tue 24-Jul-12 14:43:08

thinking of you and your DH op, hope it is good news.

Jenny70 Tue 24-Jul-12 14:49:57

THinking of you OP, my DH had a cancer scare last year and I didn't go to the appointments I probably should have, but he was convinced it was OK and the struggle to get the kids all looked after etc would have meant telling people that we didn't want to tell.

He was fine, but it does give you the absolute fear of god that something is going to pull apart your life forever.

Fingers crossed, especially if he comes home with more uncertainties, needing more tests, decisions on treatments etc. The diagnosis is such a shock, and then to have to make sensible decisions on top of all that - terrible thing.

But hoping he gets the all clear,

perplexedpirate Tue 24-Jul-12 14:50:21

Just seen this have everything crossed for you and your DH.
When my DNan was diagnosed at 74 we thought it was the end for her. Far from it! They had treatments we didn't even know existed and she had ten more years with us before she passed (of an unrelated illness).
What I'm trying, albeit clumsily to say is, even if it is cancer, the treatments are amazing, so don't panic unduly (easier said than done, I know!).
((((unMN hug))))

CockyPants Tue 24-Jul-12 15:00:30

Just found this thread, mrsshrek. Wishing you and yours all the best today, thinking of you and your DH.x

Thumbwitch Tue 24-Jul-12 15:03:11

Any news yet, lovely? I know it's a bit soon, given that the appt could be running late, could be a long one, he might not be out yet, you might not be home yet etc. but just wondering...

Everything crossed for you that it's something simple and easy to fix. xx

Fillybuster Tue 24-Jul-12 15:10:00

My thoughts are with you today. I really hope things turn out to be ok. If they don't, please remember that we are all here to support you, and you can vent, or cry, or just look for hugs on here later. Good luck xx

Oh lord mrss sad Fingers crossed for you both x

Doyouthinktheysaurus Tue 24-Jul-12 15:19:28

I hope everything goes ok op.

Fwiw I was told I had cancer on my own, dh was with the dses. I didn't know that was what they were goig to tell me and really didn't seem a npbig deal going alone. Childcare is scarce for us and dh's mum had just died so he was at home anyway<practical>

I came home and we just hugged and cried together. It's a long fight battle with cancer, dh has supported me totally very step of the way. I'm sure you will do the same for your dh and really, I think you are right to respect his wishes.

The other thing to say is apart from those fateful words 'you have cancer', I want given much information. I was told I would get an appointment for scans and then with a surgeon and sent on my wayconfused

Thinking of you and your dh op.

GetDressed Tue 24-Jul-12 16:09:42

I have been thinking of you and DH all day. I hope the appointment went okay.

Coconutty Tue 24-Jul-12 16:15:04

My DH had the same thing last year - massive lump in one side of his neck. He had CAT Scans, tests, this thing where they injected it and examined the cells. He was fine, it was harmless, they have left it there and it has never gotten any bigger or smaller.

I hope your DH has the same diagnosis, was a very worrying time.

MrsShrek3 Tue 24-Jul-12 18:08:17

News as expected really, it's a lymphoma. They won't be any more specific than that confused he has to be at another hospital at 7am tomorrow for a tissue biopsy under GA. I'm going with him, he gets no choice over this one smile CT scan in a few days. He's googling again hmm

CharlotteBronteSaurus Tue 24-Jul-12 18:09:56

oh fuck. I'm really sorry to hear that it's bad news. How are you both tonight?

Sending you positive vibes. Stay strong.

MrsShrek3 Tue 24-Jul-12 18:11:24

Just read how many messages you lot have put on here. Blimey. Huge thank you's. Certainly don't feel alone now smile

GerardWay Tue 24-Jul-12 18:11:58

Oh no, you sound quite positive though. Thinking and praying for you all.

LadySybildeChocolate Tue 24-Jul-12 18:12:39

Stop him from googling, there's some very scary stuff on the web. I'm so sorry to hear your news, what a shock for you both. I hope they get it sorted quickly and he has a very speedy recovery x

I am sorry to hear you and your DH had bad news today.

A lot will now depend on what type of lymphoma he turns out to have (which is what the biopsy is for) and whether or not other organs/LN are involved.

Try and persuade him away from Dr Google - the interweb is full of disaster stories and miracle cures. What actually awaits him if more likely to be somewhere in the middle and the path he will have to take, will be uniquely his and not somebody elses.

Hugs to you both; just be there for each other x.

MrsShrek3 Tue 24-Jul-12 18:13:09

"oh fuck" pretty much sums it up really!! Dunno how we are tbh. Just trying to do 'normal' for the dc.

JustFabulous Tue 24-Jul-12 18:14:04

I'm sorry it was bad news. Hope the appointment goes okay tomorrow.

Twosugars I know you must be scared for your BF and yourself, but he needs the lump checked and you need to do regular checks too. I know someone who was scared of bad news. They are no longer here.

limitedperiodonly Tue 24-Jul-12 18:15:02

ok. Sum it up and come back if you want.

Good luck. My thoughts are with you and DH

Barmix Tue 24-Jul-12 18:15:21

MrsShrek - I had Hodgkin's Lymphoma about 10 years ago. Back then the prognosis was good so it'll be even better now.

I had a biopsy too - followed by chemo and radiotherapy.

I know I'm only a stranger on an internet forum but I know and understand what you are going through - feel free to PM me if you want, any time.

PS. tell DH to stop frickin' googling - it'll send you both mental smile

MrsShrek3 Tue 24-Jul-12 18:16:24

Barmix, thanks. It's good to hear smile

toomuch2young Tue 24-Jul-12 18:17:08

Am so sorry it's bad news. You seem to be calm at the moment, but don't be surprised if it 'hits you' at some point. Your doing all you can being supportive and with him, and of course just carrying on for the dc's. Wishing you both all the best for his quick recovery.

lisad123 Tue 24-Jul-12 18:20:52

I'm sorry it's bad news sad
Are you near me? Happy to help if I can. Please take time for both of you, accept any help that is offered and don't believe everything you read on Internet.
Loads of thoughts and prayers for you x

KurriKurri Tue 24-Jul-12 18:27:34

Hi MrsShrek - sorry you and your Dh have had this bad news. -I've been where your Dh is now (with a different kind of cancer) - and I guess you will both be feeling pretty stunned at the moment. The first few weeks after DX are scary, and seem to be full of waiting and more waiting for results. If its any comfort at all, I can tell you that once you know exactly what you are dealing with, and you have a treatment plan in place, it does get a bit easier to handle - you feel as if you are moving in the right direction.

I don't want to overwhelm you with 'coping with cancer' tips - you'll find your own path, but a couple of practical tips

Try to go to appointments together - a second set of ears is always helpful,
Take a notebook to appointments - write down what you want to ask, and jot down answers. - Always ask for more explanation if you need it, don't feel hurried - it is your DH's consultant appointment and he's entitled to as much time as he needs.
Don't google - anyone can write any old crap on Google, there's no regulation. Much better use the various cancer charities (such as MacMillan who will have specific booklets on your DH's type of cancer, and general info. on coping etc.)
If you have a cancer support centre near you (either Macmillan or another charity) they can be very useful in offering support and info. (for example on financial matters if your DH needs time off work for his treatment)

Good luck to you both. If you want a chat with other people who have been there - pop over to tamoxifen in health - we are not just breast cancer patients - lots of people with all kinds of cancers, - it's a good place for support. xx

NellyBluth Tue 24-Jul-12 18:27:49

Have been following your threads about this. I'm so sorry to hear that it is bad news. Sending all my love and thoughts to you and your family x

CockyPants Tue 24-Jul-12 18:34:13

Holy crap, mrsshrek, am so sorry to hear this news.
Try and get some sleep tonight, the pair of you.
And please look after yourself, let us know how tomorrow goes
X to you and yours x

bugger- am sorry to hear this- as kurrikurri has said, do pop over to tamoxifen if you feel you'd like some comforting hands from those who have had cancer. Absolutely agree too that google is not your friend.

cocolepew Tue 24-Jul-12 18:41:30

Fuck it. So sorry it was bad news x

BIWI Tue 24-Jul-12 18:43:48

Sorry to hear it was bad news sad

beautifulgirls Tue 24-Jul-12 18:55:43

Sorry to hear the news. My DH is a lymphoma (non hodgkins) survivor from his early 20s. He is in good health more than 20 years on and treatment has moved on since back then too. It can be beaten so try and keep hold of the positives in all of this. X

WentworthMillerMad Tue 24-Jul-12 18:56:39

So sorry mrs Shrek, I have PM you.
I had hodgkins lymphoma also 10 years ago and the treatment is highly successful. X

Really sorry to hear that it was the bad news rather than any othersad
As everyone else said - do talk talk talk here - Mn can be an utter lifelinesmile

scottishmummy Tue 24-Jul-12 19:01:18

sorry it was upsetting news. how dreadful

try stop goggling,it's not reliable,can be alarmist.I absolutely do understand need for information and all, the understandable worry about what ifs.a good reliable website is patient.co.uk

make a to do list, write down appts, take notebook to all consultations and take notes.
consider writing down questions to take to consultations
get the tel number of the team secretary

ask hospital and GP about sick lines, letters of support for time off work,eligibility for any benefits or traveling expenses.

ask what support is available (if this is what is wanted)
Macmillan support etc

consider what you tell your own work, and any carer leave eligibility you may be entitled to

the c word is scary but there is range of treatments and options, I hope this resolves satisfactorily abpnd that you are all not too burdened and overwhelmed

EllenJaneisnotmyname Tue 24-Jul-12 19:06:56

Hi MrsShrek. Just adding some hand holding. smile

annalovesmrbates Tue 24-Jul-12 19:10:29

Step away from google! A very very lovely friend of mind had lymphoma a couple of years ago and is back to running marathons and has just had a beautiful baby girl!

annalovesmrbates Tue 24-Jul-12 19:10:29

Step away from google! A very very lovely friend of mind had lymphoma a couple of years ago and is back to running marathons and has just had a beautiful baby girl!

worryingwillow Tue 24-Jul-12 19:16:34

Have been wondering all day how the appointment went.

I'm so sorry it wasn't good news. STOP googling, no good will come of it. Hope tomorrow goes as well as it can.

Thinking of you all x

Ok - so on to the next steps but be very gentle with yourselves. This is a big shock for you both, even if you were expecting it today, it isn't where you thought your lives would be going this year. So prioritise. Anything that makes your lives easier is a good thing right now. Take any help with the dcs or the house. Be bold and ask people to do things for you when you need them to. Will carry on praying for you and dh - for strength as you take this on and for good news soon.

MissBetseyTrotwood Tue 24-Jul-12 19:24:19

DM worked with someone with lymphoma who is very well 8 years on.

I can't add to the advice given here except to say remember to look after yourself as well. Take time to do the things that have always relaxed you and you will be a stronger, better carer. I cared for my mum through leukaemia and can honestly say that the times I lost it were those when I forgot/could not step back from the situation and do something for myself like exercise, reading, eating well or spending time with loved ones who were not closely connected to the situation.

Good luck. Remember to eat dinner tonight.

x

Sorry to hear it wasn't better news. There is some great advice and positive stories on this thread. Just wanted to offer some virtual hand holding and best wishes for tomorrow.

marriedinwhite Tue 24-Jul-12 19:33:52

Good luck tomorrow. With love and prayers. Lots of positives on here.

Rosa Tue 24-Jul-12 19:34:01

What a bugger...good luck to you both .

Doyouthinktheysaurus Tue 24-Jul-12 19:46:44

Oh crap, I am sorry for you bothsad

It's such a scary diagnosis. Many, many cancers are treatable nowadays, just try to keep that in your mind.

When I got diagnosed (cervical cancer) I went through periods of numbness, to periods of pure fear, to denial, to relief once I knew what would happen and could plan.

My dses were very little so I remember that feeling of wanting to carry on as normal very well.

I wish you both well tomorrow.

Portofino Tue 24-Jul-12 19:50:10

Sorry to hear it is not good news. Sounds like there is lots of good advice and support to access here. (((hugs))) for you tonight. You must both be in a bit of shock. xx

perplexedpirate Tue 24-Jul-12 19:58:41

Damn. sad

Stop googling, whatever you do. It's the devil's work when it comes to health issues and will be no help to you.
It's great that DH is being seen so soon tomorrow, the sooner you have a treatment plan the better for you all.
Take care of yourself and your DH.

watto1 Tue 24-Jul-12 19:58:58

Thinking of you both.

eosmum Tue 24-Jul-12 19:58:59

Had hoped you would get good news sorry it wasn't. Will be thinking about you.

My brother was diagnosed with Hodgkins lymphoma in April (or March, I can't remember). He's had chemo and one course of radiotherapy, he's got one more then hopefully has the all clear. His scans have been clear for a month already! Apparently it's the best cancer to get. Good luck.

toomuchpizza Tue 24-Jul-12 20:04:52

Hello, had been holding off posting my Dad's story - was hoping for better news, but like others we have been down that road and it has not been as terrible as we expected.

Just over 3 years ago my Dad went to the gp about a lump in his neck that had been there for a while but he'd kept it to himself. He had it removed and it turned out to be marginal zone lymphoma which on it's own wouldn't have been too serious. They would just 'watch and wait' and start treatment when needed. That in itself was a big enough shock but they also found amyloid protein in the biopsy suggesting a condition called AL amyloidosis which complicated things. While testing if the lymphoma had spread they discovered that he also had Myeloma - a relatively rare blood cancer which is not curable but treatments are quite good. It was a huge shock that my previously healthy dad now had 2 types of cancer and another serious illness and they couldn't say how long he had had them, but probably many years.

We scared ourselves silly on google but here we are 3 years down the line and things are good. All 3 conditions are usually treated with the same chemo regime and so he had 6 months of that which put him in remission, then a wee break before stem cell harvest, high dose chemo and then a transplant with his own stem cells in May 2010. He's still in complete remssion and hopes to be for a long time yet - some patients are still in remssion 15 years after transplant and they've taken enough cells for a second transplant should he need it in the future. So although it has been tough it has not been as bad as we thought and to look at him now you would never know. He has more energy than he's had in years.

I will be thinking of you all - life will be very surreal for a while for you but it does sink in evetually and you just get on with it because there's nothing else you can do. Good luck with everything and I hope hearing some positive stories helps x

dubz Tue 24-Jul-12 21:02:16

Sorry to hear that the news today wasn't good. I hope tomorrow goes well and you get a lot of your questions answered. I'll be thinking of you both

Liketochat1 Tue 24-Jul-12 21:49:47

I'll be thinking of you tomorrow too.

MrsShrek3 Tue 24-Jul-12 21:49:52

you lot are bloody fantastic. I know lots of you from many years on here, and through various guises / nns. You have no idea how much the support and stories are making this much less shit (although still awful, obv).
It honestly doesn't feel like a shock atm. I did all that stuff last week, lymphoma was mentioned last Weds and tbh I've done all my being shocked, horrified, crying, worrying and whatever. I'd much rather have a dx to deal with because then you know the size of the challenge you have to take on. As long as there are no bogeymen hiding in the wardrobes on our journey, we'll manage somehow. He's not doing entirely random googling, it turns out. He's been reading chunks of the cancer research site to me all week (much to my horror) but now we are both glad he did. He's also got a grip of everything that Macmillan has to say and has done PatientUK but says it's not as thorough hmm
fwiw none of this is going anywhere near fb for those of you who know me on there. We've had to come up with a half-story for his DM (FIL died two weeks ago) and to have fil's funeral and dh dx with cancer in the space of four days is going to finish her off. Hence various other RL people aren't going to be hearing a word any time soon. I don't care who judges us for that. Priorities go dh, dc, his mum, my parents obv. we're doing what we think will do least damage.
For any of you who've been here, any advice about the dc would be a help. I've had a talk with them this afternoon, and explained that the holidays won't be going as we originally thought because we need to get dad's neck better first. The thing is, I'm cruising the line down the middle of giving them info but not frightening anyone, and I want them to come out of this with memories of a nice, if short, few days away, and other days out as we can arrange; not that their dad is seriously ill and that's all they remember of their summer. They're young enough to be resilient. If we get this right, they'll know enough but not be hugely worried. Tricky task?!

sorry huge post, a few things buzzing in my mind now the brain's working a bit.

lisad123 Tue 24-Jul-12 21:56:47

we found some great books to tell dd1 about dh cancer (dd2 was only 18 months at the time), but they are about his type of cancer otherwise i would send them.
MAcmillian site is great for advice.
If you want to PM me im happy to write a story for your DC (the type our children like best wink

Over three years later dd2 still doesnt know much and doesnt understand it all and dd1 seems to handle it all well.

scottishmummy Tue 24-Jul-12 21:58:41

in general I'd advise be honest and factual with dc,in age apprpiate way this may be useful
tell school
tell your work (check out carer leave eligibility)
ask hosp what family support they offer,or any play therapy for the kids

CointreauVersial Tue 24-Jul-12 22:03:07

You are absolutely doing the right thing keeping the full story from MIL until you know what you're dealing with. No-one could judge you for that!

You sound like you are doing the right thing with the DCs too. You know them better than anyone.

Keep strong.

lisad123 Tue 24-Jul-12 22:13:00

My work allowed me three weeks off with dh and also nothing was ever questioned when I needed time off for appointments.

RaisinDEtre Tue 24-Jul-12 22:13:54

I am sorry that you have had such rotten news

yy keep it as low key as you feel, wrt sharing the news at this stage

SM knows what she's talking about

The journalist Cassandra Jardine had to tell her children she had cancer. Reading between the lines I think she told them her diagnosis was likely to be terminal, as it sadly proved. Her article about this is a very useful summary I think here for anyone who has to talk to their dcs about this difficult issue.

Oh yes and you're completely right to keep it low key. Your poor mil too. I hope she has friends and other family members that can support her as well.

limitedperiodonly Tue 24-Jul-12 22:39:14

I haven't been through anything like this but take care anyway.

Much love.

smellyolddog Tue 24-Jul-12 22:45:23

More virtual hugs from over here MrsShrek3 so sorry to hear your news, but wishing you luck from me and DH who have been through this. Take care of yourself.

c4rnsi1lk Tue 24-Jul-12 22:47:37

So Sorry to hear your news. (hugs)

M0naLisa Tue 24-Jul-12 22:51:20

Thinking of you both x

ErmaGerd Tue 24-Jul-12 22:54:01

So sorry to hear this x

It does depend on how old your children are as to what level of information they need.

My mum had cancer when I was 5 and I don't really remember much about what was going on. I knew she was going into hospital and having an operation but didn't really understand the significance. She developed terminal cancer when I was a teenager and we had very factual discussions including the fact that she wouldn't recover. (Note my mum did not have a lymphoma but a much rarer cancer that is particularly hard to treat).

When my dad developed cancer in his 80's I had to explain to my own children about his illness. They were 3 & 7 at the time. I kept it simple but factual. I think for the older one it was something along the lines of "Grandpa has cancer, that's an illness when some of the small cells that make up your body forget to stop growing and so there are too many of them and they cause a lump inside you. " I explained that the doctors will give medicine to stop the cells growing anymore and might use other treatments to make them go away or Grandpa might have an operation. This seemed to be enough information for them and once they had an explanation that would satisfy them for a bit and a day or two later they might ask something else.

I often think its the adults having the whispered conversations etc that is more unsettling for the children than factual information.

BTW the only person I know who had Hodkin's Lymphoma is still going strong decades later and is now a grandfather.

OneWaySystemBlues Tue 24-Jul-12 23:04:25

Sorry to read this. I had Hodgkin's lymphoma when I was 21. I have been in remission for 22 years this year. The lymphoma association are good for support - I guess you'll know more after the biopsy and scans, but thinking of you.

Hodgkin's not Hodkin's

lisad123 Tue 24-Jul-12 23:10:04

Dd1 was six and we told her daddy had a virus in his blood which was naughty and making him sick so the doctors were giving him meds to make him better. As she's got older we have given her more information so dh treatment is long term so slightly different.
My neighbours son had lymphoma and was dx shortly after dh, had a year of treatment and still going strong after remission.
We have two wonderful Macmillan nurses who are great. They are the people I ring above the doctors as they are quickly, nice and always do as they say they will smile

mummylin Tue 24-Jul-12 23:10:54

My brother had hodgkins when he was 23 yrs old .he was 63 last week !!!

IamtheZombie Tue 24-Jul-12 23:12:38

MrsShrek3, in the midst of all that you and your family are going through / will go through please find time to seek support for yourself.

I am the one in my family who has cancer and is receiving treatment. But, in many ways I think I have the easier journey through this strange land. It is DZH that I worry about.

Thumbwitch Tue 24-Jul-12 23:12:48

Oh lovely, sorry the news isn't the best. Hope that the differential diagnosis of the type is better news.

Your DH sounds so practical and strong - hope he's really strong underneath and not just being strong for everyone else. Glad they've found it and gone to work on it quickly, bummer about the holiday but I think this sort of thing is covered by insurance so you should be able to get some money back if it's that sort of holiday.

I agree that it's probably best to be factual but brief with the DC - don't give them too much info but enough to stop them googling themselves and scaring themselves silly.

You will tell your work, won't you? I think you need to, really. Completely understand not telling other people though, too much to deal with just now. sad

((((hugs)))) - here for you any time you need a chat. xx

boohoohoo Tue 24-Jul-12 23:13:25

Another one who knows Hodgkins lymphona, my db had this about 20 years ago when he was 17, horrible and tough times ahead for you both, db got through it, best luck to you and your DH

nancerama Tue 24-Jul-12 23:16:57

I'm so sorry that your DH (and you) are going through a difficult time. Listen to your DH when he wants to talk. Reassure him and love him. You will find the strength.

My DH has been diagnosed with a serious illness. Sometimes he wants to talk about it. Most of the time he wants things to be as normal as possible. You can help create the normality.

Make sure you have a friend or two in real life to share with. It's tough watching someone you love suffer and you will need to offload.

bugsylugs Tue 24-Jul-12 23:48:27

Mrsshrek, I was so hoping it was nit this. Your local hospice or macmillan should have specialist people to talk etc with younger ones re diagnosis. May or may not be helpful. Thinking of all your family

MrsShrek3 Wed 25-Jul-12 08:16:25

Just got back from dropping him at the hosp for biopsy. Now what?!

ilove Wed 25-Jul-12 08:20:10

First? Put the kettle on and make yourself eat something. Yes, you need to.

aristocat Wed 25-Jul-12 08:23:54

yes, was just going to suggest have a cuppa and some breakfast, you need to look after yourself too.

lisad123 Wed 25-Jul-12 08:25:05

Now you make list of jobs and things that need to be done. Then assign them to anyone other than you apart from the ones only you can do. Order a food shop because it will be a while before you fancy or see the reason for shopping or even eating. Include a few nice treats.
Hope today bring a little bit of good news x

EmilieFloge Wed 25-Jul-12 08:32:33

I'm sorry you're all going through this. I really hope that the biopsy gives you some better news, I too have heard that lymphoma can be very effectively treated in many cases. Thinking of you x

I hope you've had some breakfast. I tend to be better if I keep myself busy so is there anything around the house you have been putting off doing that you could distract yourself with.

This might sound like a bit of strange advice but here goes. Give yourself some time and space to be upset, you've had a big shock and I am sure you are more worried than you are letting on. If you have some time by yourself its really really is OK to let out your anger and sadness - sometimes a stiff upper lip isn't all its cracked up to be. You can always come on here and have a rant.

Take care.

MrsShrek3 Wed 25-Jul-12 08:45:21

Got cuppa. Might eat toast in a bit. Lisa, thanks again. Hadn't thought of online shopping, great idea.

CockyPants Wed 25-Jul-12 08:48:44

Keep busy. Makes the time go quicker.
Thinking of you all today xx

MorrisZapp Wed 25-Jul-12 08:58:31

MrsShrek, so sorry to hear this crap news. I don't have much to offer other than a hand to hold, but I do remember a boy in our school had HL. He took quite a bit of time off, but was back in time for exams and he had... curly hair!

Are you prepared for this? Mop top hubby? Obviously not relevant if he is bald anyway.

Everyone is different, maybe you'll do your 'falling apart' once the worst is over. Maybe you'll cry now. I think you'll get loads of strength from your DCs. There's no script, just take it as it comes. And accept all the support you're offered...

Thinking of you x

swooosh Wed 25-Jul-12 09:24:33

Sorry to hear the news, hope he gets on ok today. Is he staying over night? Maybe you could take him some bits in.

MrsShrek3 Wed 25-Jul-12 10:19:50

He is hopefully coming home this eve smile heard that he's on the afternoon list now, when he was told that it was going to be the morning one sad that just means he'll be there longer.

Its not uncommon to get bumped back, for example, if there is an emergency case. Now you know that is going to be a few hours before you hear anything, you and the DC could go out for a bit and enjoy the sunshine and eat ice creams the size of their heads

mancbird Wed 25-Jul-12 11:10:01

So very sorry to read this, but it is very encouraging reading other people's stories on here too. Hoping everything goes well today xxx

MrsShrek - sorry the news wasnt good (only just seen this thread) - you sound like a wonderful supportive wife and your DH sounds like he has his head screwed on right - you will both get through this!

Thinking of you!

How scary. Thinking of you both.

JustGettingByMum Wed 25-Jul-12 13:17:07

Thinking of you both x

walkingonthemoon Wed 25-Jul-12 13:30:09

Mrs Shrek - my mum had lymphoma (Hodgkins's) 6 years ago and beat it with chemo. No advice re: supporting children through it but just didn't want to lurk without letting you know that this form of cancer is treatable and beatable!!

You are all very much in my thoughts and prayers. xxx

JustTheRightAmountOfWrong Wed 25-Jul-12 13:42:40

Another one thinking of you and DH x

Sorry it was bad news sad
I hope today goes well and you get results and a plan of action quickly

muddymooncupsatdawn Wed 25-Jul-12 16:51:06

Sorry, and thinking of you all.

We found when DH was first diagnosed with a tumor , we were straight with the DC as he worked away and it was strange their Dad being home all the time.
The DC also named DH' tumor, so it was a real thing and not just an illness.
It was easy talking about "T the tumor" won't name it as it might out me.

Now DD keeps saying that "T" is living in a jar on a shelf to anyone who asks about DH. grin

I know it's not everyone's cup of tea to make light of this, but it has made it easier to cope. Especially before/during/after treatment.

poppedoutforapintofmilk Wed 25-Jul-12 16:52:01

Sorry it wasn't good news. Just to say that my friend's DH had Hodgkin's Lymphoma when he was 24. He's 62 now. He has grown-up DCs and just retired from a demanding job. I hope tomorrow goes as smoothly as possible. Hugs.

lady24 Wed 25-Jul-12 17:09:58

So sorry to hear the bad news. Just another story to support you. My friend had Hodgkins when we were in our Junior year of high school (sixteen years old). She was diagnosed at the end of October and declared to be in remission by the end of July. It was a nightmare however, it lasted a relatively short time and is a beatable cancer. She is now a mother of three and a very happy and healthy wife. I know you probably want to just sit and cry cuz that is probably the easier way out but try to keep strong for your DH and children.

best of luck

Quip Wed 25-Jul-12 17:16:57

MrsShrek, my DB had Hodgkins way back in the 70s and is still going strong. Best of luck

I was thinking of you today, MrsShrek.
Hope everything went as well as can be expected today.

Re children: I am not sure how old your kids are, but be as honest as possible. Use age appropriate language ie 'lump' will mean more to them than 'cancer' or 'lymphoma' I'd imagine. Even young children pick up on parents anxiety and worry and are prone to imagine the worst, including that it is 'their fault' somehow that daddy is not well. It is worthwhile to actually say out loud to them that this is nothing to do with anything they did or did not do, even if you feel a bit silly while saying it.
OTOH, children tend to be rather adaptable and are likely to accept a change in plan re summer holidays.
By all accounts, you will both be forced to be strong to get through this together, but please try to remain honest with each other. I have seen many couples hiding their own fears from their partner in an attempt to not upset them which ment that the partner did not feel able to open up which led to all sorts of upset and heartbreak. Do be strong - but admitting that you are scared/angry/pissed off/don't want to do this to each other and at times having a good cry and a hug together can also be cathartic. Particularly if your DH is the strong silent type wink.

I am hoping that he is at home and as comfortable as possible.

ThePathanKhansWitch Wed 25-Jul-12 22:40:15

Thinking of you, and Mr Shrek, wishing and hoping the best for you all.

You have been in my thoughts today. Hoping your DH is back home and not too uncomfortable. Also sending you lots of positive thoughts and vibes that the news from the biopsy is as good as possible.

Thinking of you and your DH, stay strong, he and you can beat this horrible disease. x

Thumbwitch Thu 26-Jul-12 00:47:27

How long do they think it will take to get the biopsy result, MrsShrek?
more ((hugs)) and handholding for you. xx

ListenToYourHeart Thu 26-Jul-12 00:56:41

No advice, however I wish your DH better, stay strong for him even though that will be hard having you will make it easier for him. Good luck with it all and I wish you a good outcome! (((hugs)))

eletal Thu 26-Jul-12 01:56:42

Hi MrsShrek, just another story of support, my step-mum was diagnosed with breast cancer 3 years ago, and upon discovering that, her doctors also discovered that she had Hodgkin's lymphoma. Her treatment for both finished 18 months ago and she's doing really well, she still has regular check ups but is back to her previous fitness levels and, if anything, is more annoyingly cheerful then she ever was!
Thinking of you and wishing you and your DH all the best, x

MrsShrek3 Thu 26-Jul-12 07:05:35

You've just made me smile with the lovely messages. Thank you for your support, it's amazing to hear all these positive things. We know the journey is going to be difficult, but having hope is all we need. He is ok and although very worn out he is feeling not too bad. He's snoring his head off and has had a pretty good nights sleep so far. Children all still asleep and have been asked to watch tv be really quiet when they wake up wink

GReat that you got him home last night smile What's the plan now - I assume he will be contacted shortly with a treatment plan?

DreamingofSummer Thu 26-Jul-12 09:24:15

Hi MrsShrek

sorry to hear that the news wasn't good. Please be assured you are all in my thoughts and prayers.

Good luck with the treatment

Glad to hear he is home. Just take each day as it comes for now. Once you have a treatment plan, I think things feel more under control because you know what is going to happen when. Also don't be suprised if sometimes you feel really together and organised and then something small will set you off and everything will feel too much for a bit. This is completely normal. You don't have to cope perfectly all the time.

MrsShrek3 Thu 26-Jul-12 10:55:40

good tip, chaz. ta!

KurriKurri Thu 26-Jul-12 11:15:58

Chaz is absolutely right - it is OK to feel pretty down on some days, and fine on others. 'Rollercoaster' is an overused cliche, - but it really applies to the cancer 'journey'. Go with the flow, - there's nothing wrong in having a cry or a rant when you need it - can be very therapeutic.

I think one of the hardest things is getting used to the fact that treatment is a long haul, - we get used to ilnesses being fixed fairly quickly and then we can get on with our lives.
Cancer treatment takes time, and it can be hard sometimes to carry on with normal life - I went into a sort of freeze mode at first, and felt I couldn't do anything until my treatment was over. But I did find that once you get into the routine of treatment, it becomes something in your life that you work round, and then you can make good use of the days when you feel well to enjoy yourself.

Good luck to you both, - remember carers need to take care of themselves too xx

FutTheShuckUp Thu 26-Jul-12 12:40:16

Im sorry to hear this is happening to you both.
I wish you lots of good vibes and strength to get through this time. I hope the treatment goes as well as it can do and passes quickly.

MrsShrek3 Thu 26-Jul-12 23:46:34

Thank you smile
We've had hospital appointments every day this week so far, but nine Friday or Monday so have taken a family member up on the offer of going to our cottage. Only an hour and a half from home but it's AWAY - we can chill and pretend we're on our holidays grin with nice forest walks and pub meals. Kids very happy.
Thank you all so much for your support, I don't think I could have made it through this week without you lovely lot.

c4rnsi1lk Thu 26-Jul-12 23:50:27

a stay in a cottage sounds like just what you need smile

trumpton Thu 26-Jul-12 23:50:28

Oh bless you . Have a good weekend , sending you all my good wishes .

Thumbwitch Fri 27-Jul-12 01:37:18

Hope you do have a lovely chilled weekend - take your minds off things. xxx

THat sounds lovely. Have a great weekend.

lisad123 Fri 27-Jul-12 08:47:11

That's a great idea. Take local doctors number and that of his consultant just in case.

What a great idea. Have a lovely weekend.

Fillybuster Fri 27-Jul-12 12:04:45

Mrs Shrek, I've been thinking of you all week - so pleased you're going to get away for some fresh air and a change of scenery this weekend. I guess there's going to be some waiting until you get the biopsy result, and the not-knowing can be the hardest bit, so make sure that you take time to look after yourself, as well as everyone else around you. Sending you lots of love x

A weekend away sounds like just the ticket.

Hope you have a lovely time together.
It's been said on another heartbreaking but uplifting thread on here 'not to borrow problems from tomorrow'. I think that is a very wise statement - if only it were easy to follow, but try to deal with today's problems today and try to spend too much nervous energy on what may or may not be tomorrow.

I am raising a wine to you and MrShrek.

FutTheShuckUp Fri 27-Jul-12 22:51:03

Have a lovely weekend- you deserve it so much

MrsShrek3 Sat 28-Jul-12 09:39:41

Just checking in - so many wise words smile

RedRosie Sat 28-Jul-12 10:34:13

MrsShrek3 - my DH has a type of NHL (Non-Hodgkins Lymphoma).

Once you have all the information and a diagnosis (this can be complex with lymphomas and was quite a long process for us) if I can help at all, PM me.

SirBoobAlot Sat 28-Jul-12 10:51:04

Just read this, thinking of you all MrsS. Have a lovely weekend away, sounds like exactly what you need.

MrsShrek3 Mon 30-Jul-12 08:40:45

Just had a night of my brain doing overtime and waking up every few minutes with that horrible sickly feeling of dread. Sigh. Home to reality this evening then.

sad So sorry to hear your news - just another positive story really, they can do amazing things now and as you're hopefully seeing it's not the same as it used to be.

FIL was diagnosed about 18 months ago. and we got to the point of hearing it he had a matter of weeks to live. Chemo and Radiotherapy did their job though and he's coping. It's a long tough road, our best advice would be, don't think to far ahead, make sure you have a space to unload and make all the use you can of Macmillan who are bloody fabulous.

Thinking of you and saying a prayer.

I hope you had a restful weekend, MrsShrek.
You and MrShrek are still in limbo, between diagnosis and having a defined plan. A really, really hard time.
Try your best to not thingk too far ahead if you can help it.

I came across this: How to tell children

Maybe it is of some help to you?

Hope you have a good week MrsShrek.

I'm a bit useless on the advice front but just found your thread and wanted to send some positivity your way, you sound like a lovely little family smile

MrsShrek3 Tue 31-Jul-12 07:55:00

His CT scan today. Bit like d-day or something. I think I hate Tuesdays.

Borntobeamum Tue 31-Jul-12 10:06:34

Hope you were able to enjoy your weekend.
I sincerely wish your DH all the best for today.
Hugs to you too x x

MrsShrek3 Tue 31-Jul-12 11:35:40

The weekend was lovely, thaks. Nice days out and lots of family photos. like being in a nice safe bubble. But now back to the scary stuff.

Thumbwitch Tue 31-Jul-12 12:02:50

Lots of handholding for you today, MrsShrek. And (((hugs))) and good vibes for a best-possible outcome under the circs.
When do you get the results of the biopsy, or do they wait until they have the scan as well before discussing it all with you?

Glad you had a lovely weekend. xx

mayaswell Tue 31-Jul-12 12:15:35

All the best mrsshrek, to you and your family x

c4rnsi1lk Tue 31-Jul-12 12:40:18

Thinking of you today mrs shrek x

MrsShrek3 Tue 31-Jul-12 13:56:49

Thank you lovelies smile
I'm just waiting for him to have the CT now. Apparently we get the results and treatment plan when he's had all the tests and the results are in. The haematology appointment has just turned up - in a WEEK shock forgive if I sound rude but had really thought that would be this week. It was booked the same time as the biopsy and CT scan. Another whole week delay knowing nothing more. Aibu? (and please be honest)

Thumbwitch Tue 31-Jul-12 14:08:06

Depends on who they need for the haematology appt, and what it involves - if it's a needle aspiration biopsy they may need the consultant for that; and depending on the size of the hospital, they may only have one who might just be on holiday. Our hospital only had 2, and it was quite a big hospital - they both had school age children so summer holidays had to be staggered between them so that the dept was covered all the time (and if it wasn't possible then a locum was brought in).
So - YANBU to be frustrated but it might be beyond their control, iyswim, what with all the budget cuts and so on.

MrsShrek3 Tue 31-Jul-12 14:11:05

Thumb, you're fast grin thank you. Calm wise words as always. Have a cyberhug smile

Thumbwitch Tue 31-Jul-12 14:15:43

You too lovely smile.
The other thing is that the haematology consultant is likely to be the one your DH is under - so it may be that that appt is after all the others to allow the results of everything to be collated (seeing as how I've just re-read your previous post and seen you have a different appt for the biopsy) - so I'll revise my previous info and say that it's likely the haematologist will be the one giving you all the results and the treatment plan. Not 100% definite, but again I know that the haematology consultants in my hospital always dealt with these patients.

Thinking of you. Hope CT scan goes ok.

Wrt waiting a further week to get a 'plan': I know it is frustrating and scary to waiting longer, but many things usually come together for this kind of wait. Your DH's consultant may only have 1 or 2 clinics per week, some hospital have 'new patients' and 'return patients' clinics. Histological preparation of biopsy slides can take time, again usually a consultant is needed to report. A CT scan of the pruposes of 'staging' a malignant disease is likely to need to be reported by a consultant (not just any old dr wink).
Usually, a new diagnosis of cancer will be discussed at an MDT (multi-disciplinary meeting) where, for instance, the consultant in the relevant specialty, a consultant in radiotherapy, a surgeon and an oncologist will discuss the best way forward.

Unfortunately, these things are complex and the aim is to offer as taylor-made a treatment plan as possible.

I hope the coming week passes quickly for you both.

'to wait' - sorry, did not proof-read and am being pummelled by a 4 year ok while I type <<negligent mother>>

MrsShrek3 Tue 31-Jul-12 18:09:23

appologies to your 4yo wink Huge thank you for all that info smile

FutTheShuckUp Wed 01-Aug-12 16:55:31

Still thinking of you all MrsShrek xxx

Pommymumof3 Thu 02-Aug-12 09:38:46

Hi MrsShrek, I too am supporting my husband through cancer treatment. I know what a long and terrifying road it can be.
Please feel to PM me if you want to chat
X

MrsShrek3 Thu 02-Aug-12 22:20:39

thank you pommy smile
still in the nothingness of waiting. calm-before-storm I fear. He's even planning on going back to work (this should have been our family holiday, which we were told to cancel) Am more than a little bit pissed off now, that they're now wasting a week (so it appears) when we should have been away. I know I'm being unreasonable, he's had the biopsy and ct scan. but still a week is a long time and we could have been somewhere nice instead of at home complaining at each other hmm

time for more wine

MakeHayNotStraw Thu 02-Aug-12 22:52:14

Sorry to hear you are going through this - you and DH will be in my prayers (hope that's ok).

MrsShrek3 Thu 02-Aug-12 23:05:50

thank you. I appreciate that smile

KurriotsOfFire Thu 02-Aug-12 23:15:01

Thinking of you and your DH, MrsShrek, - the waiting in the early stages of diagnosis is one of the hardest parts, and hospital departments never seem to co ordinate over appointments - it's very frustrating.

Once he has got his results and his treatment plan, it does become a bit easier to deal with, in that you can plan and organize your lives around it.

love and luck to you both xx

It is hard, MrsShrek.

Wine and chocolate would be my shortterm solution.

Thinking of you xx.

Pommymumof3 Fri 03-Aug-12 08:21:00

As other wise people have said, the early days following diagnosis are the hardest... Waiting on results... Discovering the extent of the problem etc, but once you know what you are facing it does get easier....
I remember not eating for almost a week after DH's diagnosis... Nothing prepares you for this when you have a young family sad
I am thinking of you xx

MrsShrek3 Sun 05-Aug-12 12:08:11

So true, Pommy. I can't believe how long every day feels but how little my brain is working. Not prepared at all and it still seems like we're in the dark. Like the treatment is a secret so bad, that nobody will tell us what it's about. am having another rubbish day, btw. Sorry.

Still thinking of you and hoping you will get your answers v soon x.

LadySybildeChocolate Sun 05-Aug-12 21:59:17

Sending you all my love, MrsShrek xx

c4rnsi1lke Sun 05-Aug-12 23:39:34

I remember that it seemed to take ages for dh to get his results. It's so frustrating.

MrsShrek3 Tue 07-Aug-12 23:15:16

Ffs. My mother is being a pita because she's not getting all the attention. For once. Scream. They've been away on hols and now she's having a hissy fit because dh has haematology consultant app in the morning and she forgot "didn't know". So they're still away - having just decided not to come back. she's either afraid of missing something or just wants yet more attention. Seriously pissing me off. Can't put up with any more demands.
Ffs (again)
wine

FarloRigel Tue 07-Aug-12 23:41:48

Thinking of you and hoping everything goes as well as possible from here on.

MrsShrek3 Tue 07-Aug-12 23:51:36

Thank u

SoSad007 Wed 08-Aug-12 01:00:29

Hi MrsShrek, just come across your post. Thinking of you and your hubby in these difficult times.

Just one suggestion I have - there are quite a number of good books on surviving cancer, when you are ready to read them. Have a look on Amazon or Book Depository, its just a matter of finding a book/books that suit you. I haven't used Book Depository, but they have free shipping world wide. Unfortunately, I found out about surviving cancer books too long after my cancer for them to be of much use.

Hope this helps.

internationalvulva Wed 08-Aug-12 01:03:54

Poor you having to deal with your Mum on top of everything else. Can you gently tell her to back off and not make it all about her or is that likely to make her react like a banshee?

MrsShrek3 Wed 08-Aug-12 07:48:39

grin at banshee - but absolutely true!! Everything's about her, it seems. It appears she does want to help just as long as she's the centre of attention
sigh.
Not much sleep went on here last night. DH very on edge which is a new one for me, he's never been like this before. Going soon.

limitedperiodonly Wed 08-Aug-12 08:51:43

Thinking of you. Try to ignore your mum - you won't be able to but we can dream smile

MrsShrek3 Wed 08-Aug-12 13:41:39

The good news is that it hasn't spread anywhere smile it's just the huge lump in his neck. Apparently the obvious treatment is to take it out along with the surrounding lymph nodes, thyroid and everything (in the next 2 weeks hmm ) and then watch for 8 weeks and do another CT to see if they need to do radiotherapy or chemo. Apparently there's only one other enlarged lymph node (in his chest) which they will monitor.
This looks like the best news we could hope for in the circs. Am (relatively speaking) relieved!
Thanks for every single message on here (and lurkers too). It's keeping me almost sane. So many positive stories, and I'm daring to get a bit of hope now that we could be lucky enough to be joining them eventually.

TeamGBIWI Wed 08-Aug-12 13:54:30

Very pleased that it's (in the circumstances) good news.

How is your DH now?

MairyHinge Wed 08-Aug-12 14:11:06

I had non hodgkins lymphoma in 1998, on my thyroid. I had surgery, chemo & radiotherapy and I'm still here!! I also had my son in 2002!!!

Things improve all the time, I hope things are starting to look a little brighter for you now.
Happy to answer any questions if you ever want me to.

Best of luck xx

Delighted to read your latest update, Mrs Shrek -have been following this thread with interest and compassion. I was diagnosed with cancer in my salivary gland last year and had surgery and r/t and throughout everything, and now as I have ongoing treatment for side-effects of surgery, the support and care of my DH has been hugely important, so I know how much Mr Shrek will appreciate all you are doing to help him through this.

In all of this, though, don't forget you! Everyone asks about the patient but not often about the patient's family and you, as the DW, have to keep things together, lift DH when he's feeling low and try to keep things as normal as possible. That's a big pressure, so please make sure you have someone to talk to, or a place to go to where you can sound off and unwind.

Good luck with everything!

internationalvulva Wed 08-Aug-12 14:54:29

Agree with Sweetestthng on the having someone to talk to. Even though he is going though something scary and is ill, doesn't mean he or the situation won't sometimes do your head in and you'll want a good old fashioned moan, make sure you have someone around who can let you rant (or come on here and rant to us if you need to!). Glad that it's stuck at primary, good luck with the treatment Nd keep us posted. Thinking of you.

JuliaScurr Wed 08-Aug-12 15:06:09

Does anyone remember that book about how to behave around friends/family with cancer etc? Gave v useful info about offering/getting practical help
Basically, have ideas of pracrical stuff people can help with - shopping, cleaning, driving, dog walking etc and take up offers
Best wishes

Thinking of you and your family and hoping good news is just around the corner!

cornybootseeker Wed 08-Aug-12 17:18:53

I'm so pleased that you had positive news mrs shrek smile

FarloRigel Wed 08-Aug-12 18:46:52

I am so pleased to hear that update! Fingers crossed for your DH's surgery to be all the treatment he needs. Can I recommend you see if there is a Maggie centre near you as we have found them very helpful, even just for somewhere nice to sit between appointments and have a cup of tea somewhere everyone understands how you are feeling. Thinking of you.

lashingsofbingeinghere Wed 08-Aug-12 18:53:45

JuliaScurr - the book is by Deborah Hutton and called What Can I Do To Help?

FutTheShuckUp Thu 09-Aug-12 00:30:44

That's a wonderful optimistic update. You WILL be joining the success stories soon- don't doubt that!

MrsShrek3 Thu 09-Aug-12 13:31:46

Ahh well back as we were. Ne k consultant says it's too big and too risky to operate on.
Back in the chemo camp. Another appointment tomorrow and chemo starts on Tuesday.

FarloRigel Thu 09-Aug-12 15:04:45

Oh, I am sorry to hear that. Chemo is amazing stuff but it's definitely better not to need it at all. Can I advise you to stock up on mouthwash, preferably a strong one like corsodyl in case he gets mouth sores, and lots of sour tasting things like lemony/vinegary flavours as they are much easier to eat with the chemo nausea. Wishing him the very best of luck and smooth sailing through his treatment.

JuliaScurr Thu 09-Aug-12 15:33:06

cheers lashings

hope you're all ok op
keep in touch

MrsShrek3 Sat 11-Aug-12 17:30:54

All quiet in the Shrek household. Chemo starts on Tuesday for six cycles, then review. Information we've got about the NHL is quite scary. Just hope this works.

Hello MrsShrek. What form will the Chemo take?

NoComet Sat 11-Aug-12 17:42:19

Still wishing you and your DH all the best and hoping the chemo is successful and not too vile.

MrsShrek3 Sat 11-Aug-12 20:51:37

Sparkling - it's R-CHOP

(I prefer lamb chop. And chips. but hey)grin

I just wondered if it was tablets at home rather than into hospital. You will feel better when the treatment starts.

MrsShrek3 Sat 11-Aug-12 21:21:31

Only has to go in 10am til 4 or 5pm ish and all iv stuff. 21 day treatment cycles. They say it should shrink it quite quickly.

I really hope so MrsShrek. Sending positive vibes.

MrsShrek3 Sat 11-Aug-12 23:27:13

Thank you smile

JuliaScurr Sun 12-Aug-12 16:16:39

let us know how you get on

MrsShrek3 Mon 13-Aug-12 21:35:53

anyone have any knowledge or experience of diffuese large B cell NHL? Not that I want anyone to have had it obv, just wondering. Stats for him seem to be anywhere between 60% and 95% cure-ability, he has none of the higher risk factors (age, spread of lymphoma, etc) so hopefully that puts him in the higher end of likelihood that the chemo will see it off. Anything I should know for tomorrow or this week about chemo? or do I try elsewhere? Got a digital thermometer and some corsodyl mouthwash, but not sure that makes me ready to face it with him.

MrsShrek3 Mon 13-Aug-12 21:36:37

typo.... diffuse large b cell etc

Hi MrsShrek3. I don't know anything about NHL I'm sorry. I hope all goes well tomorrow, and will be thinking of you. x

Hi, unlurking to wish MrShrek well for tomorrow, you sound to be doing a great job of supporting him. I'll have my fingers crossed for you.

MrsShrek3 Mon 13-Aug-12 23:27:01

pmsl @ "unlurking" grin

and thank you

poppedoutforapintofmilk Mon 13-Aug-12 23:34:15

Wishing you both all the best for tomorrow. Fingers crossed that it goes as smoothly as possible. Will be thinking about you. Look after yourself too Mrs Shrek x

NoComet Mon 13-Aug-12 23:37:15

Good luck Mr and Mrs Shrek, fingers crossed

Hello. How did it go? Are you ok?

Hope everything went well today.x

mintsauceandgravy Tue 14-Aug-12 17:28:46

I am delurking too Mrs Shrek and thinking of you both today xx

JuliaScurr Tue 14-Aug-12 17:44:18

best wishes

Hope today went as well as these things can go.

Is there talk of your DH having surgery after the lump is shrunk by chemo? Or has the phrase 'neoadjuvant chemo' been mentioned?
I am not a specialist (humble GP here), but my experience of NHL is that people tend to have a rough few months, sometimes a year, but ultimately do very well.

I wish you and MrShrek a restful night.

postolympicblues Tue 14-Aug-12 23:24:09

wishing you both all the best xxxx

MrsShrek3 Wed 15-Aug-12 00:38:32

massive big thank you to all for the good wishes. After a verrrrrryy strange day and him having a reaction to the antibody, it went ok - if slowly. Took from 10.30-7pm. He's fine atm,fingers crossed he will continue to be, relatively smile
PD, no mention of neoadjuvenant chemo (g'on, you gotta explain it now grin ), I had wondered if surgery would follow too. Only poss of radiotherapy if 6 cycles of R-CHOP chemo doesn't finish it off has been mentioned. Am confused but we'll have to figure it out as we go along as no crystal balls available here grin

chocoluvva Wed 15-Aug-12 00:40:22

Can I offer you some advice about dealing with chemo-induced sore mouth?
Don't use Corsodyl -it's far too strong.
Ask for Mu-Guard. Caphosol and Gel-clair are good too.
Please don't worry about having neo-adjuvant chemo before surgery. This won't be an indicator of a poorer prognosis. It will be to make the surgery less complicated.
Ask for nausea meds at the first sign of nausea. Don't wait.
The treatment time will probably seem to be stretching out in front of your DH at the moment, but it will hopefully go by much more quickly than you expect.
There are lots of supplements which might help and definitely won't hurt. You will meet lots of interesting people at the hospital.............!
Just avoid anyone who's sitting around complaining about their long wait for their prescription etc........Energy sapping.
Feel free to tell anyone wittering on about positive thinking to buzz off if DH's not in the mood.
If he wants to do lots of research -great. If he just doesn't want to think about the cancer and leave it all up to the medics - also great.
Best of luck. Roll on NEXT year!

MrsShrek3 Wed 15-Aug-12 09:51:20

Thanks choco, all tips very welcome! I'm going to write that lot down! Stuff we never knew existed is happening and it's great to have tips from folks in the know!

chocoluvva Wed 15-Aug-12 14:08:34

His appointments at the hospital will probably take longer than you expect. By the time he's had his blood tests, they've got the results, made his prescription, got his prescription to the relevant place........... If your DH can use the time to rest or at least not expect everything to run like clockwork that will probably help with the hospital stuff.

BIWI Wed 15-Aug-12 14:17:50

My mum found acupuncture was very helpful when she was going through her chemo - for energy levels and (I think) it also helped with the nausea.

Good luck to MrShrek, as well as to you.

Thumbwitch Wed 15-Aug-12 14:47:58

Ah, found the thread. Was wondering how you/DH were doing!

Mixed news then - but hopeful overall, that's good.

Hope he copes ok with the chemo - make him rest as much as he can, it really takes it out of people and he'll need to conserve his energy.

((((hugs)))) - praying and crossing everything that he'll be fixed soon. xx

Mrsfred Wed 15-Aug-12 18:13:28

MrsShrek, your NN made me smile. You are me last year.

My DH was Diagnosed with Hodgkins Lymphoma early last year. Like your DH, he had it in his neck, but also had a large tumour in his chest. He had two rounds Of B-COP chemo, them two rounds of CHOP and finally radiotherapy over 6 weeks. After the first round, he lost all of his hair. He was on the large size anyway, but the steroids made him put on weight and his skin went a nasty grey/-green colour, so looked pretty much like Shrek for the duration of his treatment and that is what the DD's insisted on calling him!

He actually coped with the chemo very well. apart from being tired, he lost the feeling in the end of his fingers and was quite aggressive when he was taking the massive doses of steroids (not like him at all). Other than that, he didn't have many side effects.

A couple of bits of advice from me; firstly, if the anti-emetics don't work, ask them for different ones. They prescribe the cheapest ones first.

Ask your hospital contact about parking permits. You will be spending a lot of time at the hospital and our hospital gave us a season ticket so we only had to pay for the first hour of parking on each visit.

In between visits, keep a notepad to write any questions down. When you get to see your consultant you have so many things to ask, you don't always remember everything.

After DH had his first couple of rounds, his skin got very dry and thin. We had to go out and buy soft track suit bottoms for him to wear during the long hours of treatment.

Finally, we had so many different drugs to take at home, that we had to do a spreadsheet!

Sorry, that was a bit of an essay! Feel free to PM if you have any questions you think I can help with. Good luck x

ssd Wed 15-Aug-12 18:29:03

thinking of you and your dh, op xx

JuliaScurr Wed 15-Aug-12 19:42:24

hey, op
hope you're all ok-ish

Hi, MrsShrek, hope today was a good'un.

I really hold no superior knowledge blush, some of the posters on here who have been through similar will be a better source of information then I can be, I'm afraid.

'Neoadjuvant' means chemo before further treatment, for instance to shrink a tumour and make surgical resection easier or even possible in the first place.

I totally agree with keeping a dedicated notebook/diary in which you and MrShrek write any questions/queries as they occur to you. Equally, write answers down, particularly if at all complex.
Lots of studies have shown that people retain at most about 20% of what has been said right after they have heard the word 'cancer' sad. That gets better as you get used to the diagnosis and you get your head around the new (and hopefully temporary) normality of hospital visits/meds/chemo.

Frankly, I am taking notes regarding the mouthwash tips; I don't disagree about the anti-sickness meds, however in defense of our glorious NHS I feel compelled to say that I think it is right to start with simple (and yes, cheaper) measures before moving on to bigger guns if they don't work. That is NOT to say your DH should not be assertive (or you for him if he feels rubbish) to get his needs across.

Whether you want to or not, soon you and he are going to be Expert Patients in his condition. Consider this whole thing a marathon, not a sprint, so both of you pace yourselves and, crucially important, look after yourselves. Remember to eat (when able) and drink and rest/sleep. Take up (and initiate) any offer of help. Most people are delighted to support somebody in your situation (I am sure there is an element of superstition to that - "If I make the Shreks a casserole for dinner, maybe this particular chalice will pass me by" wink).

Catsdontcare Wed 15-Aug-12 21:35:04

Wishing you all the best. I don't really have any experience or advice but with regards to anti sickness meds then ondansetron is the absolute nuts but it is very expensive so not sure how quickly they will be willing to prescribe it.

chocoluvva Wed 15-Aug-12 22:06:19

Cyclosene is also an effective anti-sicky.

ondansetron (as hydrochloride) 4 mg, net price 30-tab pack = 63.06; 8 mg, 10-tab pack = 47.18 Ondansetron cost

scored, cyclizine hydrochloride 50 mg, net price 100-tab pack = 8.13. Label: 2 Cyclizine cost

Easy to see the difference... IME, Ondansetron is being prescribed very widely for people who suffer nausea/vomiting with their chemo. Best to wait and see, and keep communicating with the people looking after you. Usually you get a phone number for a Specialist Oncology Nurse for quick advice/help if you run into problems.

I had bad nausea and sickness last year (the dreaded 'dry boak') with r/t and I struggled to eat anything due to mouth ulcers etc caused by location of r/t. I found crystallised ginger helped the nausea, if your DH can nibble some of that. Also, the only liquid I could stomach was flat Diet Coke, so if your DH is finding keeping his fluid intake up is tricky, experiment with things that seem unlikely.

Do please look after yourself too. Rest when you need to, ask for help when you need to, go for convenience foods when you need to. People are usually only too happy to help and sometimes you need to ask for that help - don't be shy.

You sound like a fabulously supportive DW and I know your DH will value all that you do. It's a joint journey (forgive the X Factoresque imagery!). Good luck x

Catsdontcare Wed 15-Aug-12 23:43:24

Second the flat coke idea and ice lollies or ice cubes.

Thumbwitch Thu 16-Aug-12 00:27:29

Actually, flat ginger ale might be better - you can flatten it easily enough by adding a bit of water to it, knocks the carbonation straight out and is less messy than shaking.

MrsShrek3 Thu 16-Aug-12 00:43:48

Had to grin at a couple of things - great minds and all that, I've already done a spreadsheet of meds and it's stuck on the fridge door!!

Impressively, he's been given andansetron. Am like shock at the price of it. He's still doing fine. Am crossing everything that it stays this way for a bit longer smile he's more grumpy than usual wink but we don't mind. He's feeling slightly nauseous ad tired but nothing he cant deal with. One of the nurses has already told him he'd better not complain about nausea and tiredness to a wife who's had three babies grin grin (he could, and we wouldn't mind that either lol) it appears the side effects are dealt with well round these parts. Am suitably impressed with the hosp and nhs already, but now even more so.

Babylon1 Thu 16-Aug-12 00:47:26

I was going to mention the dreadful nausea, but TheSweetestThing got it all covered wink

Wishing MrShrek a very speedy recovery xx

MrsShrek3 Thu 16-Aug-12 01:30:27

Great Just been re-reading. Another big thank you to every single one of you who has posted here. The amount of info is incredible, thank you!
If I start feeling isolated and worried, I just get here: the not-feeling-alone-ness is immense smile The amount of good wishes and brilliant tips amazes me. You're clever, you lot. You can't begin to imagine how much help this is. Just been reading stuff to Himself, he's looking impressed. 2-0 to MN grin

ssd Thu 16-Aug-12 09:19:35

grin

and hugs to you and your family x

Mrsfred Thu 16-Aug-12 09:22:45

Really glad to hear that his first appointment went ok and he is not feeling too rough.

It's surprising how quickly you get into the 'swing' of all the meds and appointments. You take it all one day at a time, because you have to!

postolympicblues Fri 17-Aug-12 16:00:15

I am very very sorry to hear that your DH is going through this Mrs Shrek.I don't thankfully know anything about cancer treatment but I just wanted to send you both virtual flowers thanks thanks thanks xxxxxx

MrsShrek3 Fri 17-Aug-12 20:56:46

Thanku post smile

And so true Mrsfred we've suddenly got a new way of life and are becoming experts on stuff we'd never heard of a month ago hmm

MrsShrek can I lurk on your thread? Last week my DH was diagnosed with stomach cancer which has spread to his liver. We saw the oncologist yesterday and the outlook is pretty gloomy. I too feel very alone, frightened and confused. Reading your thread has helped a little today. Do you mind?

chocoluvva Fri 17-Aug-12 21:11:13

Hopefully the time will go by quickly and you'll look back and wonder if it all really happened!
Don't know if this advice is any help for you yourself rather than your DH, but I had one day during my treatment where I just felt absolutely fed up. I sat around/lay around the whole day even though I could have been doing bits and pieces of things. (I was unexpectedly on my own that day). The next day I woke up still feeling fed up of the whole sorry business and sorry for myself until it struck me all of a sudden that if I continued to mope about I was going to have a very poor few months and honestly, after that realisation it all seemed better.
On the other hand,I found that getting my meds and a cup of tea in bed made it possible to get up at a normal time and get going.

MrsShrek3 Fri 17-Aug-12 22:18:57

oh Daisy, have a ((hug)) it's such a crap place to be. It feels pretty helpless at times. I spent most of the first week crying then decided to do a day at a time, like all the lovely folks on here said. It's better that way.

MrsShrek3 Fri 17-Aug-12 22:28:49

BTW I've quoted you lot wink about twenty times at least today already. So much wisdom. awesome. Sorry I'm not naming names, there has been an absolute gem from every person who's posted on this thread. So just another big thank you all smile

chocoluvva Fri 17-Aug-12 22:32:22

So sorry Daisy sad
Have you just had the one appointment?
Things aren't always as they seem at first. Has your DH had CT and MRI scans?
Push for treatment as soon as possible.
Your DH has been dealt a rubbish card. I'll be thinking about your DH, you and the OP.

JuliaScurr Fri 17-Aug-12 22:36:21

thanks brew wine

for all having a crap time with health issues

Daisy (hug) sorry to hear your news.

Mrs Shrek Glad to hear things are going OK.

Thumbwitch Sat 18-Aug-12 02:05:44

Very sorry to hear your news as well, Daisy - have some wine and a ((hug)) too. Hope they can do something for your DH.

Glad that you're finding the thread helpful, MrsShrek - you vent away on here whenever you need to. ((hugs)) xx

We have had a bit of a fast, rocky road tbh.

I had to call an ambulance at the beginning ish of the month because DH had serious chest and shoulder pains. He was diagnosed with pulmonary emboli - but was also anaemic. It was his second admission in about 3 weeks for this pain and they were most worried that in that time he'd moved from borderline anaemia to anaemic. And apparently in a man, anaemia without an accident pretty much guarantees internal bleeding, and multiple pulmonary emboli is a side effect of cancer. I wish I'd known that.

So they scanned beyond his chest until they found out why. Within 24 hours of admission we were told that the scan had found a tumour in his stomach, marks on his liver and a mass between his stomach and his pancreas. A biopsy followed and the day before yesterday we met with the oncologist. As far as I know he hasn't had a full CT or MRI scan. He's had a CTRA (I think) scan and a chest xray.

I am too scared to start a thread of my own, but I don't want to hi-jack Mrs Shrek's either. I think I might be a bit of a mess!

And thank you for all your kind thoughts. They do help.

Thumbwitch Sat 18-Aug-12 10:17:11

Oh daisy. sad Prayers for you and your family. xx

So so sorry you have to deal with this. Cancer is a shitty shitty beast and seems to happen to the nicest people sad We went through it with MIL several times (breast) and my heart broke for her.
So much good advice on this thread I can't add anything other than you are SO not alone.
Thinking of you and Daisy too xx

MrsShrek, hope you are all having a good-ish weekend smile.

daisydot, sorry to hear what you are going through.
Do start your own thread, if for no other reason than to vent.
Although all cancers are bastards, everybody's illness IS different, no doubt you and your DH will face similar and different challenges from the Shreks.
Much love x.

MrsShrek3 Sat 18-Aug-12 21:25:26

weekend ok so far thanks PD smile
But my oh my he's grumpy. He's just shouted at dd who was making very stupid noises and has no tolerance whatsoever.
Bought two big rolls of parcel tape today. Start with the dc or the dh? grin

chocoluvva Sat 18-Aug-12 22:53:44

Does your DH get steroids?
If so, he will hopefully begin to tolerate them. Do you think he's worried about himself (if that's not a stupid question?)

MrsShrek3 Sat 18-Aug-12 23:03:22

yes he's on 20 tiny little revolting steriod pills a day hmm (wtf?! Why can't they make 100mg or is it mcg in one tab?)
Tolerate the children or the meds [fick] Then again, both would be good grin
He's a grumpy git because he's so tired. Tiredness being part of the territory obv - cancer makes you tired, his counts are about to drop making him anaemic (=tired) and he's not sleeping well. So all in all we really need to get him a good sleep. And I haven't a clue how. No way he needs more pills.

chocoluvva Sat 18-Aug-12 23:15:12

The steroids certainly don't make for getting to sleep! This might be completely wrong, but can he avoid taking them after dinner time?
Hope he gets a good sleep soon. Would he be allowed to take melatonin supplements (to help him sleep)? I found them helpful (maybe a placebo effect!) and my consultant was okay about it.

MrsShrek3 Sat 18-Aug-12 23:27:28

Oooh. Will find out! Thank you for yet more tips smile

Thumbwitch Sun 19-Aug-12 00:04:38

try these for a natural source of melatonin - the anti-oxidants that they contain may be beneficial as well. smile

Brightspark1 Sun 19-Aug-12 00:23:02

Gelclair for sore mouth
Ondensetron works a treat with nausea- but it does cause constipation, so keep up the fluids and fibre (but only if he's eating ok)
Fatigue - he needs to give into it, his body is telling him something. I have often told people going through the same that although they may think they are doing nothing through the day, their bodies are actually running the equivalent of a marathon each day.
Ignore daft diets
Use the MacMillan website
Thinking of you all xx

pippala Sun 19-Aug-12 01:14:50

Hi! I have been lurking on your thread too! I am so sorry that your family are suffering through this.
There is a herbal punch that I always recommend to help aid a deep and restful sleep. Warmed through in the microwave and inhale the vapours before sipping, preferably whilst in bed.

Non Alcoholic Herbal Drink - Norfolk Punch
www.norfolkpunch.com

Can be bought on-line or in most high street health shops

Would also suggest joining the cancer research/chat forum as they are very supportive!

One thing I remember from one family member that is worth being aware of is his platelet count. Sometimes chemo can cause this to drop and if it does your blood doesn't clot as quickly so you need to be a bit more careful about cutting yourself and you are more liable to bruising and nose bleeds. If it gets too low then a platelet transfusion can be used to boost levels.

Thumbwitch Sun 19-Aug-12 12:35:54

The platelets will be done routinely with any full blood count though Chaz - and this will be done regularly to keep an eye on white cell count (and Hb of course). So it should be picked up as soon as it drops below normal.

It should be but my family member ended up with a platelet count of 7 which caught everyone including the medics by surprise. He was warned to stay away from the chopping board until he had had a platelet transfusion. I don't think he was overly upset to have his meals cooked for him wink

Thumbwitch Sun 19-Aug-12 13:17:38

Sorry Chaz - I meant that the platelet count is an unavoidable part of the FBC measurement - so that would mean that either your relative wasn't having their FBC done regularly enough, or there was a sudden extreme drop in platelets, OR someone didn't do their job properly. I worked in haematology labs for years, and the machines are set up to do a set of counts in one hit - platelets are a part of that count. Very sorry that your relative had that experience though - that's shitty!

I should add that he was one of those people who is not terribly good at letting people take care of him so it was probably a good thing that people could point to a specific reason why he should sit back and let others take a bit more of the burden.

Thumbwitch - I see what you mean.
I think that he might have picked up an infection which wasn't serious or particularly noticable in itself (or which despite being instructed otherwise by the doctors - he ignored!) but coupled with the Chemo knocked his platelet count hard.

MrsShrek3 Mon 20-Aug-12 02:05:14

He's had a rubbish day today. His counts are likely to be falling now and he can't go anywhere public from tues for a week as his immune system will be cr@p. He is likely to be anaemic too, we've been warned. It's rubbish seeing someone you love go through this sad

MrsShrek it is horrible <hugs>. Each day is a step nearer to getting back to normal though.

Mrsfred Mon 20-Aug-12 07:43:05

The crap days are hard, aren't they sad

Make sure you have a good supply of books, magazines and DVDs for the low immune week.

DH really struggled (actually we ALL really struggled) with the periods of time he was on the really high doses of steroids. After the first round, I kept a diary of which days he was going to be horrible - it didn't change anything, but I was better prepared grin

Mrsfred Mon 20-Aug-12 07:50:42

Actually, by the last round, we were all so fed up with him being so aggressive and unreasonable, that I may have been heard shouting 'if the bloody cancer doesn't kill you ... I will' blush blush. Fortunately it made him laugh and broke the mood.

MrsWhitaker Mon 20-Aug-12 07:51:37

MrsShrek, I have been lurking but wanted to say you sound like an amazingly supportive wife. thanks

((Hugs)) it is rubbish and I think it is a good thing that you can turn around and say so.

MrsFred that made me want to laugh and cry at the same time.

I was thinking about what happpened to my family members. I wanted to say remember there is a difference between "coping" and "solidiering on trying to ignore bad side effects or signs of an infection etc". The former is inevitable; the latter is a bad idea. If he isn't coping with the side effects or he notices and signs of an infection he needs to speak to the medics sooner rather than later they may well be able to offer some solutions to make things a bit better.

Do your damndest to preserve a sense of humour, even if it is gallow's humour grin - even a laugh through gritted teeth and with tears streaming down your face is therapeutic.

Steroids can be horrible little fuckers (5mg tabs to allow slow weaning btw), but can boost appetite; does that seem to be the case for your DH?

Here's hoping for a good week for you all x.

Thumbwitch Mon 20-Aug-12 09:18:31

Agree that gallows humour is probably a good way to get through - laugh at anything you can, it doesn't mean you're not taking it seriously.

Have you laid in a stock of antibacterial hand-gel? Probably a good idea if you haven't already. I'm not a big fan of it under general circs but these aren't general, they're special, and MrShrek will need to be protected from random germs as much as poss, as I'm sure you've already been told and probably knew anyway.

Still thinking of you and praying for MrShrek's recovery. xx

MrsShrek3 Mon 20-Aug-12 09:22:14

Here's to the gallows humour. Still smirking at what mrs fred said (and can totally hear myself saying that too blush ) We've had 90 mins sleep last night (6-7.30am) for no good reason but I'm blaming Himself - not going to bed at a reasonable hour, him doing a bit of sleep-swimming and waving his arms about, knocking a drink over the bed and everything in it, dd turning up to join the party hmm
Hope tonight's better....

MrsShrek3 Mon 20-Aug-12 09:24:47

Thanks - I've got plenty of antibacterial stuff as the children will have copious amounts of germs available to them when they go back to school and will be treated like the plague til they're showered blush

Good idea re antibac hand gel.

Using it does NOT replace handwashing though, really important. For instance Noro virus (winter vomiting bug which does not seem to feel obliged to stick to winter hmm) does not get killed by antibac gels etc.

Handwashing with normal soap under running water and with lots of scrubbing like explained here.

FWIW, my neutrophil counts once went down to 0.5 (normal 2.0) for unknown reasons (a whole other story) and I felt ok, but had one niggly litle infection after another: thrush, conjunctivitis, bladder infection, infected spot. That was with an otherwise normal blood count.
With chemo neutrophils can drop to <0.1 and that's when you want to keep DH away from the general public and get everybody else to do Lots of Handwashing <<preaches>>

overthemill Mon 20-Aug-12 09:40:27

mrsshrek I'm so sorry you areall going through this. I had my first chemo session on 8 august for Hodgkins Lymphoma (so my next one is due this wednesday). Like mrshrek i will be having 6 months' worth. If it's any comfort to you, and him, i found that first couple of days were ok but nauseous and tired (more than normal was already flat out with lymphoma!), then got REALLY tired and almost wanted to be in bed all day (but mindful of fierce oncologist who said, you are an outpatient that means you don't need to be in bed all day) then got sick meds sorted out with huge prescription from GP for ondandestren and then tiredness lifted a week after chemo so much so that I have been almost normal with little day time naps.
everyone tells me there will be a pattern so think that must be true for everyone although my GP bil tells me that it will be cumulative and by the end I will be very very tired (and his wife had 4 chemos herself last year for different cancer)

Thumbwitch Mon 20-Aug-12 09:43:15

Oh yes, good point re. handwashing as well (I tend to assume everyone does that anyway)

MrsShrek3 Mon 20-Aug-12 09:48:45

Hugs and good luck to you overthemill. You're a week ahead of DH. Huge thank you for posting. Really hope it goes well and you can beat the tiredness sometimes enough to feel a bit "normal". I dragged took dh out the other day as nurse specialist said 'if he's feeling really tired, take him for a walk' hmm it did actually piss him off bring him back to the real world for a bit grin

MrsShrek3 Mon 20-Aug-12 09:51:43

Thank you (again) Pacific. Am copying your entire post into my memos on my phone as reinforcement to justify me bleaching the kids insisting on good handwashing wink

overthemill Mon 20-Aug-12 09:58:32

thanks mrsshrek - its surreal really, keep thinking 'this is not really happening' . but i also have been dragged out for walks daily with dh and dog (just little ones) on all except 2 days when i was like death warmed up. it did help although at times was very hard.

my dh has been a rock. dn't know what i'd have done without him. he can be annoyingly forceful too around eating and so on but he has proved 100 times since diagnosis why i chose him!!

don't know if you've told your kids much yet but we told them all together and kept repeating 'this means mum will be sick and get sicker but will NOT DIE!' we also suggested that they help out more and do few extra jobs around the house.....but ours are teens

MrsShrek3 Mon 20-Aug-12 10:22:15

We've kept the dc quite well informed. They're doing well (better than me) and ds1 is awesome (he's 11). Ds2 has grown up over the past month from a loon to a very capable little chap, I wish it hadn't had to do this to him but I'm very proud of what he's turned himself into. Theyre both helping as best they can. Dd doesn't really get it, she's too young. The boys understand it well and don't seem too worried atm. they just see chemo as medicine to get dad better and it's ok smile

overthemill Mon 20-Aug-12 13:32:16

reread my last post and want to say we also emphasised that the medicine would mean i would get better.

i know what you mean about the dcs - ours are older but my youngest dd who is 13 has taken it very hard after a few very rocky years at school but all are being lovely and i am very proud of them all.

don't forget that this is their reality now, just as if everything had stayed the same that would be, and everything they get thrown at them develops them in some way or other. had chat with a mate last week who is a nhs pychologist and he was certain that dd13 would be ok - kids are very flexible really

MrsShrek3 Tue 21-Aug-12 23:41:03

Thanks to whichever wonderful person / people said that even if today is rubbish, tomorrow will most likely be better. It's keeping us going. Yesterday rubbish, today a fair bit better. Hold on to our seats and see what tomorrow brings.

MrsShrek3 Fri 24-Aug-12 00:09:58

Not sure if it's insane but we are planning to get a couple of nights away over the weekend. He's feeling quite rubbish but in good spirits (mostly) and we are going to the middle of nowhere with no germs grin

As long as you both feel like it, then it sounds like a great idea. A chance to rest and a change of scenery sounds like a good idea.

MrsShrek3 Fri 24-Aug-12 00:16:41

Definitely a change of scenery - and the dc can run themselves ragged, which is at least some of the appeal wink

MrsShrek3 Fri 24-Aug-12 06:19:29

Just another musing and a sort-of-question from those of you who've been in my position. I'm a crap sleeper at the best of times. However, this is utter nonsense even by my standards (as giraffes will testify) average (usual) going to sleep time 2.30am ish. Current wake up time 3:55am. Am not going to be much good to anyone if this keeps up. Been doing this for around 6 weeks so far. I don't feel tired, but presumably it will hit me all at once somewhere down the track. Any suggestions?

IamtheZombie Fri 24-Aug-12 07:24:09

Hi MrsShrek.

I had 4 months of chemo for breast cancer between January and May this year. I found the insomnia was worse during the first 2 or 3 cycles and did seem to improve over the last few cycles. It was also at its worst for the days I was on the anti-emetics immediately after each treatment. Do you have a spare bed in your house that you or your DH can move into for a few days each cycle? I decamped to the guest room for the first week of each cycle so that DZH and I didn't disturb what little sleep the other might be getting.

It really is very important that you take just as good care of yourself as you do of your DH. Don't ever underestimate the toll this journey is taking on both of you.

Thumbwitch Fri 24-Aug-12 09:05:20

Suggestions for sleeping:
Lavender pillow, or burn lavender oil in a safe oil burner overnight. A less-pleasant smell but a very good sleep-induced = vetiver.
Valerian also stinks but is incorporated in Valerina herbal remedy from H&B
Rescue Remedy can help by reducing the whole anxiety aspect
Sleeping in separate beds might help too (helps me, that's for sure)
Melatonin capsules can help
Shut out all sources of light at night, including from digital displays (clocks, tvs etc)
Yoga/relaxation techniques

If all else fails, you could always talk to the doc and get an emergency supply of sleeping tablets, because you're right - you need more sleep than that.

What wakes you, do you know? is it thinking about it all, bad dreams, or just bang, you're awake again?

Hope you're ok now, Zombie

MrsShrek3 Fri 24-Aug-12 09:49:22

Thanks, both. Unfortunately no spare room, owing to three dc. The only spare thing to sleep in is a sofabed in dd's room - that said, I'm considering it with rose-tinted glasses on and did spend a night on it last week. And even slept a bit grin

Zombie, hope you're on the mend now smile and Thumb, yet another big thank you. Have already got rescue remedy but hadn't thought to use it, and will try out other stuff before considering gps as they'll more than likely look at my history (pnd, hideously x3, the last time for 3 years) and try giving me ADs. which I don't really want.
All alternatives will be tried first smile

BIWI Fri 24-Aug-12 14:47:49

How about downloading a sleep app for your iPod - assuming you've got one! Listening to a hypnotherapist can help you relax and sleep better.

MrsShrek3 Sat 25-Aug-12 23:20:47

Biwi, have just taken your advice and done so smile and found some nice supplement things in health food shop. Which I may well wash down with my camomile tea. by middle of next week I may well get more than 2hrs of zzz's grin

BabylonPI Sat 25-Aug-12 23:26:24

Hi MrsShrek3 I've been following your thread and have no other useful advice to offer I'm afraid sad

I do wish you a happy full and peaceful nights sleep though, and second what was said up thread about you taking perfect care of yourself as well as DH, however difficult it may be.

Wishing you lots of positive things to come your way smile xx

Oh and have a very unmumsnetty hug too! grin

MrsShrek3 Sat 25-Aug-12 23:56:10

Thankyou (all hugs appreciated regardless of what's cool with the rest of the population)

IamtheZombie Sun 26-Aug-12 00:00:28

MrsShrek, I'm glad you've found some things to try. I hope they help.

Thanks to you and Thumbwitch for asking how I am. I'm fine. I've finished chemo and radiotherapy and am 1/6th of the way through my Herceptin. As far as they can tell, the mastectomy got all of the active tumours. My lymph nodes were clear. It's just because I had aggressive tumours that were both hormone and HER2 positive that I'm having all possible adjuvant therapies. I'm very fortunate in that I seem to tolerate all of these very well. This time next year all this will be behind me (except for the hormone pill which I need to take for 5 years) and I will fully get my life back.

I pray your DH has an easy journey and a successful outcome.

Thumbwitch Sun 26-Aug-12 00:12:15

Very relieved to hear it, Zombie and hope that it continues well for you. smile

MrsShrek - glad you've found some useful things! Hope your sleep starts to increase soon. You might also benefit, if you can afford to go, from seeing a reflexologist or having an aromatherapy massage - these can be quite soporific. Have it late in the day and get someone else to drive you, if you can (for safety) and then go to bed when you get home. smile

MrsShrek3 Sun 26-Aug-12 10:38:58

Some aromatherapy and stuff on offer at the carers centre. Hmm, might look into it. No options for the private version -dh obv on sick pay, I have sorted all the finances but it won't run to optional extras wink
I have friends who have interests in therapy stuff, come to think of it - as I have too but you can't DIY back massage lol and if I'm really stuck I can tell them what's going on. Minimal people know in rl. Still. Mil now does, but we just CBA with all the sympathy and what it does to other people's conversation ability iyswim.

Thumbwitch Sun 26-Aug-12 11:00:35

Fully understand - sometimes it's so hard to answer the questions because it makes you think about it when you don't really want to.

But perhaps you could just tell them you're having a very stressful time with other stuff and they might be able to help you out; if not, I can give you an idea of some oils you could mix up and just maybe use on your wrists and so on.

MrsShrek3 Sun 26-Aug-12 11:27:10

Oooh, brilliant grin

MrsShrek
I don't know if you are anywhere near London (if not you will probably find the same near to you) but some of the colleges teaching beauty therapies have spas run by the students where they offer much cheaper treatments. Maybe that would be an option if you felt like a bit of TLC?

www.lcbt.co.uk/VirtualContent/84891/LCBTSalonPricList2011.pdf

www.lond-est.com/student_salon/

MrsShrek3 Sun 26-Aug-12 22:01:47

That sounds lovely, will definitely look into it.Since it circumnavigates the entire having to tell people thing grin it's even better!

overthemill Sun 26-Aug-12 22:38:57

mrsshrek finally refound this thread after being bit out of it on chemo myself. How are you doing now? Did you manage to get away? we had 2 blissful childfree nights away the weekend before my chemo started and it was so wonderful to be together and chill and just have down time. i use it to visualise during stressful moments!

please investigate what is available to you as a carer locally, there may well be lots. you may be able to get some childcare stuff too - i am lucky having older kids but today my ds is looking after me while dh is playing loud music at a mates - he really needs the break.

we started to sleep aagain, mainly, once we had the final diagnosis - i hope this happens for you too.

MrsShrek3 Mon 27-Aug-12 09:24:12

(hug) OTM! Your couple of nights away sounds like just what you needed. Hope you've got your energy levels (relatively) back up for next chemo (this week?). How's it been? Good luck for round 2.
DH is now starting to feel a bit better again after a rubbish 10 days or so and came out playing with the dc voluntarily yesterday grin he says some of his side effects are going away too. It's a week til his next chemo so hopefully he'll be ok smile. His hair's going thin (it's usually very thick) and he's started wearing a hat. He looks like a boy racer as he keeps wearing a cap backwards blush

overthemill Mon 27-Aug-12 09:47:06

Hi MrsShrek! i'm still waiting for my hair to fall out, had wig fitting this week though which was strange. Have a few scarves lined up too but it's still there! No doubt it will start soon.

I feel crap a lot of the time and know I am poor company. Poor dh is a saint.

MrsShrek3 Mon 27-Aug-12 23:15:30

Sorry to hear you're feeling rubbish. Do less wink Keep in touch!

Thumbwitch Tue 28-Aug-12 00:09:00

OTM, a friend of mine had chemo for recurrence of breast Ca a couple of years ago - she decided to have her hair shaved (no.1) before it fell out, so that she wouldn't notice so much when it started - perhaps when you have your wig, that might be an option for you? She said it was better than finding hanks of hair on her pillow in the morning (what happened the first time around).

MrsS - glad your DH is feeling better although I did <snurk> at the boy-racer image!

MrsShrek3 Tue 28-Aug-12 00:16:29

Fwiw DH has done a no2 cut for the same reason. which makes no odds since he only had no4 before Otherwise he wants someone to carry a personal vacuum round to get rid of moulting headfuzz grin

Thumbwitch Tue 28-Aug-12 00:20:19

OOOooooo, there's an idea... how about one of these? grin

Thumbwitch Tue 28-Aug-12 00:22:02
MrsShrek3 Tue 28-Aug-12 00:24:06

Perfect hmmgrin
Just don't tell him wink He's threatened to carry his car-vac. More bad taste humour but it's keeping us going. smile

Thumbwitch Tue 28-Aug-12 00:26:11

Black humour in abundance available here (legacy of working in the NHS)

MrsShrek3 Tue 28-Aug-12 00:38:16

grin essential. And you know how we roll wink

lisad123 Tue 28-Aug-12 00:44:15

If you head up to my way, happy to join for a spa grin
Don't forget to apply for DLA for dh.
Also if you find his clothes start to need replacing, more heating ect there is a Macmillan grant. Think you can only apply once but well worth a look. We had one early on, made a difference.

MrsShrek3 Tue 28-Aug-12 01:00:02

Finding out abt benefit things on thurs. Thanks for heads up smile hes on ssp and might be able to apply for carers for ds1, ironically hmm
He didn't think he could get DLA for him, that said he's had the condition for 3mths and is having 6mths treatment. He's not needing too much assistance atm except I'm sorting all his meds and food, and doing all the shopping etc where normally I wouldn't be doing that. He'd feel a fraud applying I think... might have to look a bit further into it.

LadySybildeChocolate Tue 28-Aug-12 01:13:59

Phone them up for the form anyway, if he can get it they start paying as soon as the form's sent out. The nurses at the hospital can help you fill it in if you need them to. Keep a diary of all of the things that you're doing, even making cups of tea. Does he need ferrying to the hospital? Like a child's DLA application, it all mounts up.

Sending you my love. smile

MrsShrek3 Tue 28-Aug-12 01:17:38

Yes, taking him everywhere smile wish hospital carparks weren't so effing expensive tho and I need a carpark pass and a space with me name on <aibu> grin

LadySybildeChocolate Tue 28-Aug-12 01:20:46

I think that you can get help with the carparking charges in some hospitals, so it may be good to ask them. It's a tax on the sick, that's what that is. Bastards. Ask them to give you something while you're waiting. grin Entenox is good stuff!

cornycrocskin Tue 28-Aug-12 09:07:03

just found this thread again smile
I've sent off for the DLA form for dh. He's been ill for 8 months now...don't know why we didn't do it before really.

MrsShrek3 Tue 28-Aug-12 09:20:25

Do it Corny. Really hope you get it for him. We have arranged a "finance check" at the carers centre - well DHs nurse prac arranged it for us. Things going to get sticky money-wise so trying to get ahead. (corny if you haven't already had similar, please try and get it!)

cornycrocskin Tue 28-Aug-12 10:02:33

Thanks Mrs shrek smile - haven't been offered a finance check. dh keeps saying we're fine, but I don't know what I'll do about my job if I need to take time off to care for him. He's needed a lot of caring for all summer but luckily I've been off anyway (phew). Have you thought about work at all - what will you do?

MrsShrek3 Tue 28-Aug-12 10:20:46

Like you, thank f€ck for the summer holidays. Am now planning to go back for the new term and hope for the best.

cornycrocskin Tue 28-Aug-12 10:24:16

I suppose that's all we can do really! I have found that working takes my mind off things so it can be a blessing in disguise. Are you f/t or p/t?

Mrsfred Tue 28-Aug-12 10:31:09

Glad to see you are maintaining your sense of humour smile and MrShrek is feeling a little better.

Have you checked with your nurse co-ordinator at the hospital re parking charges? I jokingly asked for a season ticket for the car park and was given one. It mean't that we only had to make a one off payment of £1.50 (ie, the first hour parking) each week. That was at Maidstone hospital, but it might be worth asking if they run a similar scheme where you are.

overthemill Tue 28-Aug-12 11:15:26

carparking we get a special cancer rate (yes, really) which you get £1 tokens for whole day parking (as opposed to £8) at the hospital I get my treatment. We prepay for a few at a time and always have a spare one in case of emergency dash. Local hospital rules are similar but you have to prepay in multiples of £7 and I rarely have to go again. Definitely worth asking, they don't always remember to tell you.
lisad do you have experience of DLA for chemotherapy? I am very out of date on the rules but asked about it at the cancer centre but the volunteer adviser sad no way. She really has no idea how little I can do when really crook!

lisad123 Tue 28-Aug-12 11:39:06

We dont get dla for dh as his treatment is ongoing and so not as intensive as to need it iyswim. I would apply for mrshrek and see how it goes. They always say base it on his worse days. Some get it some don't confused

MrsShrek3 Thu 30-Aug-12 00:12:43

well I'm utterly confused about the DLA thing and obviously not alone in that wink

Crappola day today and he went to bed at 8 after doing absolutely buggerall during the day sad Hope his counts are good enough on Monday. Fingers and everything else crossed then.

Thumbwitch Thu 30-Aug-12 00:24:33

Can you get help filling in the DLA form, MrsS? That's the best option if you can manage it.

Hope MrS's counts are ok on Monday too. Try and get some sleep though. smile

Solo Thu 30-Aug-12 01:15:18

Hello smile I've been lurking a lot bit and thought that I'd mention that you might be able to apply for a blue badge whilst the C is being treated. Your nurse should be able to advise you on it.
All the best.x

overthemill Thu 30-Aug-12 08:43:18

solo a blue badge is only for people on higher mobility component of DLA ro who are permanently and severely disabled (or amptees or blind etc) so don't think chemo will allow it. i checked website cos i thought of it too

Solo Thu 30-Aug-12 14:03:05

I'm not sure, but I know my Dad got one when he had Cancer; he was terminal though, so I don't know if that made a difference.

Thumbwitch Thu 30-Aug-12 14:45:21

I'm guessing that it will have gone the way of many things in the last couple of years, Solo - you'd need to be completely incapable of anything to be eligible for a blue badge now. sad

overthemill Thu 30-Aug-12 17:12:11

ifhe was terminally ill then he may well have qualified for higher rate mobility component - like my mum did but that was in 1996! I checked it out for me as I struggle to walk far at the moment but I can't get it

triplets Thu 30-Aug-12 23:59:45

Hello Mrs Shrek............just want to say I feel for you and like many others know what hell this all is. My trio were only nine when my dh was diagnosed with advanced bowel cancer. Its been over 4 years of chemo, ops, ups and downs. Atm he is all clear, we don`t let it take over our lives.....it has been hard, a journey not of our choosing, but we have learnt alot from it too. We both found sleep very difficult, no spare room either. We invested in a good sofa bed which my dh uses now most of the time. He had an ileostomy reversed almost 2 years ago and things have not ever gone back to normal! So he is up to the loo several times in the night, it doesn`t disturb me or the kids and if he can`t sleep he can make a cuppa or watch tv. Do look after you ............as someone said in the beginning of your thread, you are a team. I hope and pray for a full recovery for him xx

chilled7up Fri 31-Aug-12 00:15:50

MrsSrek I've just come across this tread, and want to wish you and your family all the best and that your husband recovers fully and quickly

Solo Fri 31-Aug-12 00:31:25