Today we got Steves brain tumour results back

[onlyjoking9329]

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

Just seen this thread OJ.

I have absolutley no idea what to say.

I'm just sat here swearing a lot.

I'm so sorry.

Stay strong and know lots of people are praying for you all
xxx

If he's got lots of swelling I can't see how they could do the mold as it is really close fitting (if he's slightly claustrophic, make sure he asks them to cut eye holes ... dh freaked out). If I were you, I would consider making a formal complaint about the delay in getting the MRI scan. Not sure if it would help you but a 4 month delay when you're facing your situation is appalling. Also, how did they get it so wrong in the first place ... low grade mistaken for high grade? The neurologist could tell DH's was somewhere in the middle from the MRI. The biopsy said the same but found some high grade cells too. Then 3 other neurosurgeons (DH not happy with inconclusive biopsy so got lots of second opinions!) said they would err on the side of intermediate still based on its appearance on the MRI scan. Again, not sure this will help you but definitely questions to talk to your oncologist about.

OJ- have you seen Mr Robertson at the QMC- id it worth asking him to look at the file so far for a second opinion?
I agree re the mask- it is very close fitting and although the radiotherapy is reasonably quick, dh will have to be able to lie absolutely still.
Have posted to you today.
love RP

DH's mask was bolted to the table (with him in it of course!) ... it has to be extremely precise. To the point where they told him to make sure he was eating even if his appetite went because they didn't want him to lose any weight.

whats the mold made from?
someone said the have to put a permanant tatoo mark somewhere on his head to line it up the same each time.

Sorry to hear this.

very sorry to hear this too onlyjoking.
thinking of you all
HC xx

sending my best oj

oh oj i really hoped you wouldn't get this diagnosis.
Great post wishingchair. It is exactly the same as my mums diagnosis.
My best piece of advice is push push push for the treatment to happen as soon as possible. We saw the worst of the nhs for this as we had to wait four weeks after the diagnosis for her to get her apt at the hospital for treatment. We felt like they pushed her to the back due to the severity and prognosis.
As for looking on the net or for info. Don't do it there are few postive stries on this type of tumour sadly. My mum was given the same as you have read 3 months to five years. Sadly they couldn't remove any of hers after the biopsy so she was in a worse position than your dh. My advice would be arm yourself with as much info as possible with all the up to date info about treatments and don't let them fob you off upping the steroids. I really regrte not doing more for my mum in getting her treatment sooner as she was to ill to have any when it came to it.
Also try and do as much of the practical stuff you can before his treatment starts and get everything in order, hard i know.
It's an horrendous rollercoaster of emotions and all you want is that magic doctor to say everything will be ok, your dh and family will be in my prayers and i wish him all the strength to fight this terrible disease. If you need to chat at any time as i know how hard it is trying to be strong for them you can mail me at [email protected].
Lastly make sure you do something special everyday with him and the kids and tell him how much you love him.
Take care and much love.

i don't think we need a second opinion, i just think we should have had the scan when they promised it us in april, if i wasn't such a pushy cow steve would still be waiting for his scan, gotta laugh thou twice in the last week i have had phone calls offering us life insurance

we were told it was grade four on friday morning by telephone a letter was also sent
so we have an appointment tomorrow so fairly quick.
we got the letter this morning, and it was marked first class!

I had a mask made when I had my neck radiated, then they marked me up with gentian violet from the top of my head to my collar bone. It was quite traumatic for the first 24 hours but it is amazing how quickly it becomes part of you.

Found this on a website all of it applied to me, it may apply to Steve.

Hygiene advice
? The treatment area can be gently washed using mild soap or baby lotion, according to the patients wishes. Avoid creams and lotions unless advised by clinical staff.
? The area should then be patted dry or air dried using a hairdryer on the cold setting.
? Care must be taken to preserve skin markings.
? Hair can be gently washed using baby shampoo, and patted dry if the patient is undergoing cranial irradiation
? Patients should be advised that wet shaving within the treatment field is likely to severely aggravate any skin reaction. An electric razor is a safe alternative. However hair growth should be slow or ceased within the treatment field.

Apart from the shaving bit.

Lilyloo, don't worry i am good at pushy, it was a warm up have three kids with autism and fighting for everything for them.
steve has been on steriods since before surgery but they are down to once a day now.

good be prepared for a fight and see if you can get a dte for it tommorrow. My mum was on 8 max dose before her treatment even started
Make sure you make time for yourself in this which is hard as he may feel much worse when his treatment starts.
Have you spoken to your hospice the one my mum had was fantastic and it's for familys and patients so may be helpful to your dc's and you as well.

LGJ i think steve will be please he wont have to shave, his face is swollen & bruised at the moment so he hasnt bothered to shave

trouble is you see Steves not poorly as he will tell anyone who will listen, i think he is gonna be getting a lot worse but until he gets a lot worse he ain't facing it. to be fair he made more of a fuss when he had man flu

had to pop back and see how you are, i think you are incredibly brave coping with all this stuff.
you and misdee are amazing i am praying for you both
xxx

dunno about brave we have no choice in this really, thou i agree misdee is amazing, i am keeping everything crossed for her and her family

I've been thinking of you all lots - will be tomorrow too.

Still thinking of you oj. And wishing chair too. So many families facing difficult times

not got anything particularly useful to say, just that I'm still reading and thinking of you all xxx

thanks, i am concentrating on positive vibes for misdee and peter tonight