We Talk Brain Tumours

Sally, It's unbearable when loves ones are in pain. Keep strong.
I'm afraid I can't offer any advice except to say that no-one should have to endure this sort of pain. You mention a GP, I'm sorry I can't remember if you are in touch with a hospice who may be better with advising about  pain relief. To me, it sounds pressure related so a change in her dex dose may be called for. Has her doctor mentioned that?
I'm sorry I can't be any real help.
CHxx

Hi Sally,  thank you so much for asking about Doreen. She is still relatively stable and managing to take in a small amount of fluids and food, she is taking regular doses of oral morphine which seem to be keeping her comfortable and somehow controlling any seizures without any other medication!  The  medical teams are dumfounded that she is still with us,  you women hey? I don't suppose morphine could be of any help to Mum? it is very easy to regulate the strength of doses.

Thank you again and we send our very best wishes.  Doreen and Martyn XXXX

Well hospital bed, commode and zimmer frame are being delivered tomorrow. DNs coming in twice a week to do a strip wash in the kitchen. Consultants secretary phoned this afternoon and is phoning back in the morning with suggestionsabout dex dose. Things are rapidly taking a turn for the worse and becoming more difficult, but so far I am very impressed with the speed that the DNs are managing to get things sorted (if it does all arrive tomorrow as planned). I got down to see my mum today - poor thing she's almost completely blind in one eye, but is actually just keeping both eyes shut all the time, so she doesn't know whether someone is near her to talk to or not. She is enjoing sitting in an open door way in a sheltered spot out of any draughts and direct sun.  The only problem is that someone in the valley below her is building a timber house and is using a nail gun which goes bang approximately every second from 8.00am til 4.00pm. As my mum says a nightmare for someone with a brain tumour - at least she's still got a slight sense of humour.

Hi all, I'm Kate. I live in Wales, I'm 36 (almost) and like many before me found this site when trawling for info and support.

My Dad, Charlie is 65, and until Nov 2009 had been relatively fit and well ( some cholesterol and blood pressure probs). He had what he described as a 'funny turn' in Nov 2009, ambulance called as we saw symptoms of a stroke, face drooped, speech slurred etc. He was admitted, tests done and told he had had a mini-stroke Over the coming months he had more 'funny turns' and gradually his speech got worse. More tests were done ( CT scans, scans on his arteries, ) but nothing was found to be causing it. About 10 weeks ago he started losing mobility on his right side, his hand was weak and his right leg started dragging. This continued for a little while and he went in for a scheduled CT scan in May. In the meantime he was attending a physio and occupational therapy clinic with no results. His mobility continued to worsen and around the start of June he began falling. Mid June we were contacted by the hopital in Cardiff and he was admitted on the basis that he needed more tests because something had shown up on his scan. At that point we were still blissfully unaware, thinking it was maybe a bleed they could stem or something.

The news was delivered today that Dad has a brain tumour that is inoperable. I don't know what kind-until today I didn't realise there were different ones. His oncologist has planned 6 weeks RT to start in roughly 3 weeks, the treatment will be directed at the left handside of his head, between his forehead and ear. At the meeting we kinda had a feeling beforehand that this was the news we were going to get, nurses had been evasive etc, but until you hear it from the doc, it's not really real. I didn't ask for timescales as I don't think my mother was fit to hear them.

I've read enough tonight to understand the outcome. I know my mother is in denial, she's not a particularly strong person and the last 6 months have taken their toll. Dad gets frustrated with his inabilty to speak properly and she's the one who takes the brunt. I'm only a few doors away and I work part-time so support is not a problem. It looks likely that he will need to live downstairs and we have Mac nurses and district nurses scheduled so we can plan all that.

Like so many before me I am struggling to come to terms and have so many questions. Do I approach my mother and make sure she understands? How on earth to I tell my 13 and 11 yr olds? I am open and honest about everything ( my son even tells me about his girlfriends!) but so far they think he is going to get better and be the same guy he was this time last year.

He is so upbeat it's incredible. He managed to tell me earlier that he wasn't going anywhere anytime soon so get used to it! What really broke my heart today was when we were travelling to see the doctor ( I don't travel well I get panic attacks), I was in the back of the car and Mum was overtaking 2 big lorries, he could see I was feeling dodgy ( taking deep breaths etc) and he just looked back and met my eyes and smiled at me, both sides of his face lifted in that smile. Even though he's got this nasty thing he was still being my strong Dad for me.

I appreciate that everyone is going through their own personal Hell, I have read so many posts, I don't necessarily need a reply, it's just nice to be able to put it all down in words. I send my love, thoughts and best wishes to everyone who is affected. I have sat here crying for hours. Tomorrow I will get up and be my mother's 'right hand woman', the kids will go to school, Dad's told me I have to hoover the stairs and landing ready for the visits-slave-driver! Life will continue as normal, for the time being.

x

Hi Kate,  I am married to a Welsh lady, stubborn buggers aren't they thankfully?

I haven't a great deal of time at the moment, preparing for the carers, Macmillan visits etc, but I will try my best to post back to you later. When you know the grade and the position of the tumour you will be far better armed for the information required.

I would just like to say after reading your post, your parents have a big advantage with having a daughter like you.

Bore da,  Martyn.

Sallye, Hi, good to know you have the right support in place and you seem to feel supported - nice to imagine your mum sitting there enjoying the warmth of the weather - I hope her humour continues! Take care x  Just wanted to mention that Morphine wasn't effective enough for P, he was changed onto oxycodone, a stronger opiate which you take less of - his pain was managed the best whilst on this. xx

Kat1e - welcome - I hope you continue to find this site a place where you can come and write your thoughts and concerns, it is somewhere where I have found much needed supported.  You're right, simply writing this stuff down does help somehow doesn't it?  And with people who really do understand the uncertainties and complexities of this awful illness.

I guess you will have read about so many of our loved ones who have had missed diagnosis' for extended periods of time - my husband certainly experienced this.  Sadly it is an issue that comes up time and time again - but is also one of many examples that tell us how much the doctors just simply don't know about brain tumours - guesswork is often used and symptoms vary so much the doctors struggle to understand as living with someone with BT is beyond the comprehension of most - this is also where this site comes into its own - so many people with such a wealth of personal experience of BT is such a resource of information and a willingness to support others no matter what their own circumstances.

The inability to speak is something that is so underestimated - it strips away your personality and is frustrating for both patient and carers - my husband couldn't read nor write nor talk so communication was always tricky but we managed (though there were times where we turned up somewhere and P (my husband) hadn't a clue until we got there, he either thought he knew but didn't understand or he had conned me that he understood as he got bored of my inefficiency at trying to get him to understand!!!) - the Argos catalogue came in so useful so often for everyday things since it has almost every item in it you could ever think of!! 

If you are unsure how much to tell you mum or your children perhaps you could start off by speaking with the nurses - their experience in these circumstances could be invaluable, but remember no matter what they say you know your family best and ultimately you can decide what you think is best for them.  I told my children that their dad was so poorly that one day he wouldn't be here, but that for now we had to live each day as best we could - then as things detoriated they quickly grasped how fragile things were - one day at a time is the only way.  But until you know how your dad has responded to treatment could hope be the best way for everyone just now - so they can have a period of time to adjust to the diagnosis of BT?  Then as time goes on and they begin to understand the enormity of what is happening around them perhaps other more difficult conversations won't be so easily avoided and actually their reactions over this time will help you judge their individual reactions and how much information they want to know?

My husband, too, was there for me in any way he could be right to the end - I think dad's always are hey?  And, yes, it's amazing how 'normal' life does carry on throughout - sometimes I wanted to shout out what was happening to us, but we don't do we?  Take care x

Martyn, good to read Doreen is holding her own - hope you are too x

Take care everyone xx

Hi Kate,

I don't often post on here anymore but I still read what everyone has to say and your post struck a chord with me.  I don't want to raise flase hopes but I just wanted to say that just because your dad's tumour is inoperable, doesn't necessarily mean the worst.  It will all depend, as Martyn so rightly says, on the type of tumour that is diagnosed, the grading and your dad's overall physical health. 

My husband, Colin, was diagnosed with an inoperable brain tumour in September 2008 and is one of the lucky ones - although his tumour is still there, it has shrunk to less than the size of a pea after chemo and radiotherapy and has not regrown as yet.  He is back at work full time and champing at the bit to get his driving licence back next February.  He does suffer from increasing short-term memory problems as a result of the radiotherapy but I am just so thankful and grateful to have him here and relatively normal (he never was normal!!) that we are learning to live with this.  As I say, this is very much dependent on the type of tumour (his is a type of non-Hodgkins lymphoma) and I am very aware that for every Colin, there are many many more people on here who are not so fortunate (which is why I don't post too often, as I find it so difficult to know what to say).

Keep smiling, Kate - even if the news is bad, there will still most likely be many good times to share with your dad and happy memories to make.

Hugs,

Sue xxx

Hi Sue, good to see you diving in to help at every opportunity as always,  best wishes to Col. XXXX

Kate,  If you are to accompany Mum and Dad at their next appointment, try and list all your questions in advance and politely insist on understandable answers. Not all medics feel they have the time to sit down and run through the situation, but if you are anything like me, we need to know! Not all care to give a prognosis, but they can make you aware of the possibilities and likelyhoods. A prognosis is an educated guesstimate based on historic cases, but if you read a few of our profiles you will see that we don't all conform!!  For instance, my wife was diagnosed in January 2003 and her prognosis was approximately 2 years, she isn't very well at the moment, but she is still just about able to issue me with the 'wifely'  instructions.

Take care, Martyn XX

Hi Katie,
Just hearing the words brain tumour can be scary but you sound very organised and realistic.
Of course it's never good news but there re so many types and grades that really until you get that information, you don't really know what you are dealing with.
With my ever optimistic hat on, I would say that the time lapse from the first happening until June is quite long so I'd say that's a good sign - but that is guessing and really you won't know what you are dealing with until you get an exact diagnosis. And without an operation or a biopsy then I think I am right in saying that the consultants will try to regognise what sort of tumour by eye from the MRI or ct scan. And there are more than 100 types of primary bt I think. Some are easy to identify, others less so.
Is your Dad also going to have chemotherapy as that is often combined with rt? I'd ask about it if not as they are often, but not always, combined.

So many questions; a frightening situation. But I hope you get some answers today and that the news is not as bad as you had feared.
Best wishes,
CHxx

Mandy,   I do apologise, I completely missed your post.  Yes I am holding Doreen's own, as often as she lets me!  Take care my friend. XXXX