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Original poster

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

689 replies

MrsShrek3 · 23/07/2012 22:57

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.

OP posts:
overthemill · 30/08/2012 17:12

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 · 30/08/2012 23:59

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 dont 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 doesnt 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 · 31/08/2012 00:15

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 · 31/08/2012 00:31

Shame isn't it the way this country has gone :( Angry

cornybootseeker · 31/08/2012 00:37

Brilliant news that your dh has the all clear ATM triplets Smile

Original poster
MrsShrek3 · 31/08/2012 12:48

Trio, good news Smile and thanks for sharing your experience.
We're not applying for DLA as we don't think he'd qualify - its mainly personal care based and he doesn't need that. You know the rest of how much he needs help to do but it's not going to qualify IMHO.
As for blue badges and mobility, not a chance. We have ds with asd and dd with restricted mobilty but as far as the criteria go, neither of them would even qualify - and tbh we actually would really need blue badges to go out safely as a family. I cant take the two of them out myself. So we don't.

OP posts:
cornybootseeker · 31/08/2012 13:06

we got the DLA form today and dh doesn't think he'll qualify, so he's not going to apply.

chocoluvva · 31/08/2012 14:02

Hello again MrsShrek,
The 'bloods'.......Oooh that brings back memories of last year. Every second Monday I used to "fail" my test. However I usually managed to scrape a pass when I "resat" it on the weds - which left just enough time for pharmacy et al to have the 'treatment', as they call it, organised for getting it on schedule. There is a powdered supplement made from mushrooms available which is supposed to support the renewal of the white blood cells. I'm sorry I can't remember the name -'twas VERY expensive though. A good health food/vitamin shop would probably stock it. Reishi and cordyceps are well known; this particular one less so. It was something like 'coriolus'. It came in a plastic tub.
I think it's very common for patients not to get the planned dose of chemo in the planned time. However the planned treatment is recognised as the absolute maximum dose likely to be tolerated - the effective minimum dosage is not really known (or that's my understanding of it anyway) so please try not to worry about it. (Easier said than done).
Good luck :)

daisydotandgertie · 31/08/2012 14:17

We've been told to apply for DLA at the highest rate on special measures - apparently that applies to us because my DH has been diagnosed with terminal cancer. Our GP has filled in an additional form for it; although we've not heard anything back about our application yet. Really not at all sure about the mobility section of it, DH's mobility changes from day to day!

Thumbwitch · 31/08/2012 14:54

Oh Daisy, is that a definite on the terminal cancer? So :( and sorry. (((hug)))

cornybootseeker · 31/08/2012 15:08

so sorry about your dh daisy Sad

ChazsBrilliantAttitude · 31/08/2012 15:12

Daisy sorry to hear about your DH Sad

daisydotandgertie · 31/08/2012 16:10

Thank you all - yes the first oncologist said it is incurable, and that the prognosis is poor. He are due to start chemo on Tuesday although the oncologist said there was only a 30% chance of it having an affect on the cancer. And then the next time we saw him he said he'd be surprised if we were in that 30 :-(.

I don't like him at all.

BUT we are going for a second opinion on Monday to a hospital which is well known for its work with cancer, so we have a lot pinned on some more knowledge and actual will to help. We just have to fix him.

I am really anxious not to hijack Mrs Shreks thread, but I keep on coming back to it to see if there are any more handy hints here (and I can't bring myself to start one of my own :-( )

cornybootseeker · 31/08/2012 19:12

(()) hugs Daisy. Sad I really hope that you get some better news when you go for your 2nd opinion.

chilled7up · 31/08/2012 19:40

Daisy, stay strong. I hope you have better news from the new doctor. Hugs

chocoluvva · 31/08/2012 20:53

Oh Daisy.
Contact an ION nutritionist (Institute of Optimum Nutrition) and ask for someone who specialises in working with cancer patients. They will advise you about supplements which will help the chemo and have a protective effect on the healthy cells. They will also be able to tell you what's not worth bothering about.
I hope the appointment on Mon is more helpful. I've heard a few stories of oncology consultants being VERY blunt with their patients. Have you spoken to your DH's macmillan nurse yet? In my experience they're usually very skilled at communicating and listening and know all the ins and outs of the whole system. I really, really liked my macmillan nurse. During my first chat with her I noticed her really looking closely at my face - you could tell she was looking to see how much info I was wanting to have/which areas of the cancer I probably didn't want to be discussing etc.
Did you know? The prognosis for cancer patients is significantly better when the patient has supportive relationships - there have been studies.

Original poster
MrsShrek3 · 01/09/2012 09:40

Sad, DaisySad

Downer day here too, don't know why Sad

OP posts:
ChazsBrilliantAttitude · 01/09/2012 10:45

MrsShrek
Sorry to hear you are feeling down, its really normal. Its probably a combination of tiredness, worry, helplessness, frustration and all the other crap that comes when someone you love has cancer.

I would strongly recommend a "be nice to yourself day". Don't put yourself under pressure today: do something you enjoy; sit and watch cartoons with the kids on the sofa; have a soak in the bath. Forget the housework and feed the kids fish finger sandwiches or pizza (they'll be very happy).

You sometimes need some downtime to recover from the pressure you are under.

cornybootseeker · 01/09/2012 16:31

((Mrs Shrek))

Solo · 01/09/2012 20:36

:( Daisy

When you apply for the DLA, go by the worst day scenario, not the best.

And chase them up too. My Dad chased his blue badge up weeks after he'd applied and they 'found it' under a load of paperwork. Dad (I) only got to use it once Angry

MrsShrek the powers that be seem to get it all wrong. You sound like you should have a badge even without your Dh's (current) health.

daisydotandgertie · 02/09/2012 07:39

Mrs Shrek I hope today is a brighter day for you. God knows this is a bloody awful situation to be in though.

This thread is a wonderful place to be for nuggets of advice, wisdom and kindness. I am so relieved I've found it.

overthemill · 02/09/2012 09:54

hi mrsshrek i hope you feel better today. am so sorry you are down but it is totally normal I have been in floods of tears myself this week. Just take it easy, treat yourself gently and do not feel bad. Is there some kind of treat you can have even if it's pizza on the sofa with fave DVD??? hugs

Original poster
MrsShrek3 · 02/09/2012 10:07

Thanks all. It's going back to school week- for the dc and me. I've been able to concentrate all my time and energy on family til now, but it's back to work time! I'm terrified of running out of steam iyswim. Think the reality is just about to land on me. Sorry I'm being a miserable bugger, I'm just dreading this week with everyone starting school, dh having next chemo this week and so much to do Sad

OP posts:
ChazsBrilliantAttitude · 02/09/2012 10:32

MrsShrek

Although it will be hard next week being back in a routine may bring some benefits.

Speak to your work and to your children's schools and let them know what is happening. That way people will cut you a bit more slack. When my Dad had cancer I let the school know so if the kids were a bit late one day or had the wrong kit people knew there was a good reason and there were no consequences. They also know to keep an eye on your children and make sure they are not under too much pressure in school. I also told work which helped because one day I decided I just needed to take a day off and go to see my Dad and everyone was fine with that.

Is there anything you can do to make your life easier, I know you haven't told many people but are there any friends who know who could help out with the school run or have the kids for a couple of hours on the weekend if you need a break?

Oh and bugger the housework! Do the minimum and rope the kids in to help if they are not already doing so. My kids think hoovering is great fun (Hmm they don't get it from me!) so I leave them to hoover the lounge and hall.

overthemill · 02/09/2012 18:37

mrsshrek you know to tell the schools I am sure but definitely tell your work too - as chaz says, you will need to be cut some slack and everybody will rally round to help out. how will mrshrek get to appointments and chemo when you are back at work? do you have people lined up? if possible try to do that, I have my sister and a good friend taking me to my next 2 and all sorts of people have offered for future dates and also to do things like pick ups from after school clubs and stuff. People will want to do something and you will need a helping hand.

Try not to think of it as a huge block of stuff to do, one baby step at a time. hugs