We Talk Brain Tumours

Hi Worried Now

Sorry to hear about your Mum and that you have had to join our community but you are in the right place to get help and support from a great bunch of people.

It is only natural that you have many Q's that are un-answered at the moment and you will also be feeling many different emotions.

For us personally it does help to know exactly what it all means and what we are facing.

In our experience, after my husband had his biopsy (he didn't have an operation) we were called to the hospital after being discharged and we were given a copy of the results and informed of the exact type of tumour my husband had.

If your mum is due to have radiotherapy it may not start right away as her treatment will have to be planned by the Oncologist who you will be introduced to soon, so I am sure you will still be able to have your holiday and probably start treatment as soon as you come back.

You just need to inform the Oncologist of the holiday and they will tell you whether your Mum will be able to go.

At our hospital, we were asked when we wanted to have our radiotherapy ie time of day and we wrote down holidays/weekends away and all of this was accommodated where possible.

I am sure if you ask to go in to the hospital to see the Dr's on their rounds to ask all of the Q's then I am sure that this would be ok. As Y&Y says, it's not as if it is a tooth problem etc.  They fully understand that family need to be included.

I always write down everything we want to say to our Oncologist otherwise you forget and fifteen minutes with him once every 4-6 weeks is better used if you now what you want to ask.

Well, today we saw our Oncologist and it has been a year now that we have been going to see him.  It was a relief in a funny sort of way because I never ever thought we would still be here one year on fighting it all the way.

Hope this helps a bit and keep asking those Q's.

Take care

Ann x 

Hi Sallye Just wanted to say that I know how you must be feeling. It is incredibly hard when you reach that stage of no more treatment. I remember it well. Pete did have a 2nd debaulk in Sept (at Frenchay Hospital) but alas it left him paralysed which was a risk that was explained to us when the Neurosurgeon talked about the various options for Pete. After the op Pete was then too weak for PCV which was a huge blow but he has been battleling on since last November when he finally came out of hospital. It is never easy but we take each day as it comes and perhaps suprisingly there have been some good days. I hope you and your Mum can share some good days too even though she may not receive any further treatment other than palliative care. Big hugs to you both. Sue xx

Hi Worried Now and to the other newbies.(sorry my brain is addled and as your posts are on the previous page can't look up individual names which I've just read but can't now remember) So sorry you find yourselves here but I see that good advice has already been given to you. Keep posting as there are some incredible people on here & I'm sure, like me, you will benefit from their friendship, help & support during difficult times. xx  

Thanks guys for the support.

Found out tonight that mum has been discharged from physio. They have said she is not to do stairs on her own but she is able to walk around and has been told she can leave the ward for walks if she wishes. Dad is going to take some clothes in for her. It is great to hear her mobility has improved, we had noticed a difference in her arm almost straight away.

The Drs are going to be around on Wednesday at around 4pm apparantly they are in meetings all afternoon discussing all the patients so we should hear then what the next step is.

Thanks again

Sallye, just wanted to say how sorry I am to hear about your mum. I know what that feels like. Making decisions about things are so hard and I agree that quality of life is so important now. My Dad was in a similar situation in November but was offered a second operation. Unfortunately they only realised once they'd started that they couldn't remove any tumour after all. That second debulk (attempt) was awful to go through (much much harder than the first) and he was so much worse after that and took a very long time to recover. Although at the time we were so pleased he had been offered further surgery, we know with hind sight we wish it had never happened. My Dad had the lomustine part of PCV and it didn't help him, although I know others on here have had a good result. He had an awful week or so around the time of taking the medication every 6 weeks which I wish we hadn't gone through now. Isn't hindsight a wonderful thing though. There is no easy answer for you and your family. The only sure thing is that this is a horrible cruel illness and it is so unfair that anyone's loved ones should have it. I hate it.

sorry to hear about your mum sallye. my dad meets his docs on thursday to sort out 2 weeks of radiotherapy. Hes in much better sorts the last few days, we have been breaking him out of the hospital and basking in the sun. I could use some medication advice, he gets really bad headaches and double vision. they have tried paracetomal, oramorph and codine, but they only take a small edge off the pain. Does anyone have any suggestions or experience with these headaches

Hi dshaw,  I did respond to you after your first post.  Is your Dad taking dexamethasone?

Regards, Martyn

yes his on a really high dose to ease the swelling around the tumor

I'm sorry, but I can't offer any suggestions considering what Dad is already taking, I presume the dex dose is getting up to 16mgs or so?  The only advice I can give is to encourage him to drink as much water as he can. The brain is approx 75% water and does benefit from frequent refuelling.

Best wishes.

Hello dshaw, I was wondering if your Dad's headaches are possibly worse after he has had his head in a particular position? Lying down on one side for example? Some people who write on here have noticed that some positions seem to cause worsening headaches.
If he is already on a high enough dex dose then otherwise it has to be painkillers. I think I have heard that paracetamol have the most effect on bt headaches but I'm not 100% sure I remember that correctly.
Anyway, just a thought.

Best wishes to all reading.
CHxx

Hi

dshaw - hi - just quickly - if the oramorph doesn't get on top of the pain (this isn't as straight forward as you may first think - they use a calculation based on when the pain is gone) then you should tell the doctors as they may increase the amount until the pain is gone, they can then convert this into a twice daily morphine dose - the oramorph is for instant relief and for breakthrough pain, morphine is given, usually, in the form of slow release tablets. 

However, I found that morphine didn't really 'do the job' after a certain stage for my husband so he was referred to a pain specialist and was placed on oxycontin (slow release tablets) and oxynorm (similar to oramorph and is used for instant relief and breakthrough pain).  Oxycontin/oxynorm are opiates like morphine/oramorph but are stronger so a smaller dose is required in comparison.

Paracetamol does pass the blood-brain barrier most effectively and is the first drug of choice for BT pain sufferers - however it all obviously depends on what is causing the pain in the first place and I would agree that the positioning of your dad's head may be worth considering too.

Hope this proves helpful.