Today we got Steves brain tumour results back

[onlyjoking9329]

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

Steve looks like a very nice man. I hope you're enjoying your lunch together.

Enjoy today oj.. thinking of you

Enjoy today oj.. thinking of you

you are right to be angry - my mum also had a delay in treatment for her bladder cancer during which time it spread to lymph glands. On the positive side she was also told that treatment was "realistically nor going to cure the cancer just buy time" - three years later she is still here and reasonably healthy.

She really didn't want to read anything about it and didn't want to go to any cancer support groups etc. She poured all her energy into surviving chemo and radio, our mantra became "good chemo, bad cancer" (which amasing was a joke at the time!). it worked for her and kept her going.

Wishing you both all the best.

You are right to be angry ... the hospital should have a patient advisory group ... maybe talk to them about process for complaint/compensation?

Looked at your profile ... you have a really beautiful family. You will get through this. Somehow. x

Meant to say DH got admitted to A&E after having a seizure. HE then had 2 more in hospital but cos he didn't have a headache, they wouldn't give him a CT scan. They discharged him that night. He then had 6 more at home. 3 days later I called them and insisted he went back in and they agreed to do a CT scan. When he got there he had to argue until they agreed to do it. If he'd accepted what they'd said, we might never have known. Not great is it.

we are back from lunch it was lovely.
we went to the coffee shop there were a couple of people waiting in the queue so i told steve to go and sit down as his balance is not great, the woman in front of me turned round and said to me, he has taken my table and i now have nowhere to sitand i have been very ill you know!
so i shouted over to steve, you will have to move this lady needs to sit there as she has been very ill. steve got up and came over whipped off his hat revealing shaved head and huge scar and waved her over to the table, we are still giggling about it.
steve is now asleep and probably still giggling about it.

all this waiting around is not good,steve has been told he will be getting regular scans, wonder what that means in reality

hee hee - good for Steve!!

gald you had a nice lunch and you found something to make you giggle, bet she was highly embarassed !
What will the regular scans be for ? to monitor how the treatment is going ?

OJ, so sorry the news wasn't better. I know how you're feeling as we had that same conversation with DH's oncologist back in February (treatment can only buy time but not cure it). Words can't describe the emotions you go through. I still can't quite believe it, to be honest. It's my experience that you pick yourself up, put it to the back of your mind and just get on with life. You sound like a very strong person and a very loving family so you will cope but don't forget to take care of yourself as well as Steve.

How terrible for you all

If there was a negligent delay you may well have a case against the hospital - esp if they are admitting mistakes have been made.

MB ? sorry to but in here like this, but I think OJ might need you right now, see

here

Sorry ? posted on wrong thread

Oh hell, I'm so sorry to read this. Sending you all the hugs that I can. I can't access my email until next week sweetheart. I will send you an email asap.

Apologies to both OJ and MB for this crass barging in here?.I meant to post on MB?s thread asking for updates whilst she?d been away and inadvertently posted here.
OJ ? sorry to read about your very sad news.
As I said before I went to Bristol last week ? if you, Steve and your DC?s are up to a short break on the East Yorks coast ? you have my email ? just get in touch.

MB ? sorry to bring a downer on what should have been happy news re Mr Misdee.
Hope you are having a brillian hol.

Brilliant

My heart goes out to you and your family.

xxx

thankyou for all your kind words, i am sitting here sobbing, steve doesn't deserve this and how the F* do i even think about explaining to the kids.
this is all just too sad and too much

Oh OJ. I am wordless. I wish I could do something. I guess we all do.

No it's not fair and it's too much to have to bear. I'm so sorry.

oh OJ- you will need help with the kids- ask for a referral to clinical psychology so someome can help you (or both of you) draw up social story books etc.

How much support do you have. Not physical (I know you've got some respite sorted etc) but emotional? Do you have anyone who can be cried on?

it is times like this i wished i had some family to turn too. i have lots of mates but i am just not up to talking face to face with them just yet, it is easier online

I can understand that

So sorry,OJ.Nothing I can say will make it better but you ARE such a strong person from the posts I have read.Dealing with a very sick husband and 3 autistic children is something most people could not do.As others have suggested cancer backup is a good resource.Marie Curie on a practical level may be worth contacting re overnight sits to give you a break.Ask about Macmillan support and district nursing input.In terms of talking to your children the oncology people should have some specialist nurses/psychologists that could help you form a way of explaining stuff.If you raise this as an issue I am sure they will try their best to help.Stay strong.Love,Wrinkly.

remember the school as well OJ- they're all going to be at special school in Sept aren;t they? I'm sure they'll help in any way they can especially with explanations etc. (((OJ)))