Today we got Steves brain tumour results back

[onlyjoking9329]

had a phone call from the hospital.
Steves tumour is grade 4.

Have only just seen this OJ and I don't think I have "spoken" to you before. Am so so sorry for you all. Words seem so inadequate at times.

Will be thinking of you. (Looked at your profile - your DCs are gorgeous. And Steve looks like a lovely man).

EAst Midlands isn't that far away you know (south wales), if a strange man with a bald patch lands on your doorstep in 7 months with 3 boys....... pmsl

Is Steve getting decent palliative care OJ? or access to a macmillan nurse etc?

to be honest, steve still isn't doing the "C" word very much.
so unless the macmillan nurses were called something else. maybe like " nurses for blokes who don't need any help and deffo ain't poorly"

It was only the macmillan nurses who got dh's pain under control. It was a real life saver, and has made doing all the holidays etc possible.

The trouble is that most GPs don't have enough expertise is pain relief to do this.

Is he really that anti seeing them?

thanks for your email MB will reply in more detail later.

i think a large part of it is denial, i often hear him tell people that once he has treatment he will be fine
in a way it is good that he is thinking positive.
i think once he starts treatment he will do less denial.
He has always been stubborn and we have had many battles about accepting DLA for the kids and more recently having people look after the kids.
i have said to him if you knew someone in on situation would you just expect them to cope with no help.
it will take time, but i need to respect his wishes whilst he is sorting things out in his head.
if when we go to hospital the Macmillian nurses were there as part of his appointment then he would prob talk to them but he wouldn't go and seek them out and ask for help.

possibly a way to 'sell' it to him would be to tell him that he is more likely to do well on treatment if his other symptoms are controlled as much as possible.....and this is no lie.

He will be able to tolerate his treatment far better if he isn't in pain/ feeling sick etc. And the more treatment he can take the better his prognosis.

With good palliiative care dh went from being a skeleton in constant pain, vomiting bile, to a mane who went on a two mile (gentle) hill walk with his kids on holiday.

That could be a selling point, i don't know if this is down to his memory loss or denial but he will say i haven't had any pain today when i know he has

have a look at some photos of dh I have put up for you to see how much better he is pain free etc

i have indeed seen your photos massive difference indeedm think steve just needs time its only been just over a week and he does take a while to process stuff.

I tell you waht, that's pretty much the case with most of the blokes our M/ Nurses used to see- you'd be amazed at their strategies 9and also, they're there for the family too) (I was a fundraiser for them back along, you see, one of my many professions LOL)

Macmillan also do grants, you know that right? (you probably do through work) to cover anything you might need- we gave them for everything to washing machines to weddings!

I suppose at the end of the day Steve has to come to this in his own time, shouldn't affect your ability to obtain the help YOU need though.

i am sure he will accept stuff at some point. he always takes longer to process stuff, it took him years to come to terms with the kids autism.

I'm like that OJ< I can function simultaneously on the levels of knowing and rejecting, whereas Dh just acepts (esp. with the kids). Its one of those things you're born with I think, probably in a major international disaster it's be useful or something (????)

it's got to be useful for something

SOtrich impressions? I'd be very handy at a bird themed party.

Maybe ask your cnsultant tor efer to Macmillan, then get the urses number so its all in place when needed?

we did joke that the scans would show lots of sand up his nose and in his ears from the years of putting his head in the sand.

Still thinking of you all.
good to see that you can still find things to smile at.
How are the children dealing with it all?
what support do you have for yourself?
take care. I am happy for you to contact me if you want to chat.

Thanks wrinkles, i am sure you don't have too many wrinkles.
The kids know nothing other than that daddy has headaches and often needs to sleep. i am hoping to keep it that way for as long as i can.
i will be talking to their SN school to see if they have ideas on how to talk to them.

OJ- just checking in to see how things are. If your dh wants to start a club for ostriches masking as men, my dh would like to join. It's something he is excellent at.

Was the tram museum good- I love it there- riding up and down on trams keeps mine quiet for ages.

Anyway, thinking of you all.
X

remind me not to type when I have had wine- that doesn't read right- was trying to see that I think not accepting stuff is the way my dh would deal with it, so Steve's attitude is quite manly.. ( but also quite ostrich likeand understandably!)

our very own DH club! anyone else want to join.
today i have to write a letter for the headteacher to read out to the staff so they are all aware of things, it is proving a difficult letter to write

getting the school involved is an exceptionally sensible thing to do. My dc's school know the situation and have been very supportive.

The childhood grief ad loss councellors will also work with the school if you ask them. they prefer to do this, as the child needs help when they need it, not when you can get an appointment IYSWIM, so getting the school briefed on the best way to deal with things can be very helpful.

I have a friend whose husband had a grade 4 (i think) brain tumor. He was given 3 months to live. He went through chemo and an operation and now 18 months later had been given an all clear. He has gone back to work part time and even has a little hair again (sort of thought his bald look suited him, actually). I will ask her when I see her about the details of what type of tumor exactly it was and what exactly he had in treatment.
She, by the way, was completely open about what was going on, with her daughter (5) and with everyone she met. Told me the first time I met her (our dd's were at nursery together). I think that it made it easier for her and for those around her to deal with it and also to offer he help. Her mother came to live with them during the treatment period to help her and she also quit her job. Her mother left just a month ago and she is now talking about going back to work too.
Best of luck to you all.

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the kids HT will be phoning me tonight i haven't spoken to him yet have spoken to his lovely partner she was the girls TA for a couple of years.
thats the tricky thing with brain tumours there are lots of different sorts, then there are different grades

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