Brain tumours...what to expect.

[waterlego6064]

Firstly, I apologise if anyone feels this is an inappropriate place for me to post this, but it seems the most fitting.

My darling dad has brain metastases (melanoma), diagnosed a couple of weeks ago. Very sudden, very shocking. 66 years old and always healthy, fit and active with a brilliant brain.

He is in a hospice and the swelling in his brain is being controlled with steroids. We do know that his condition is terminal and that he won't be around for long. We have been told that the steroids will only work/be useable for a limited time.

I'm just wondering if any of you here have any experience of losing someone close in this way; and if so, whether you might be able to give me an indication of how long the steroid treatment is likely to be effective for; and what we might be able to expect in terms of how the deterioration will happen (please forgive me if these are horribly insensitive things to ask).

I realise I'm probably asking how long is a piece of string but...

It's like all cancers. They are all so different and each person reacts very differently to the cancer and to treatment. My DS is just 17 and was diagnosed with a high risk medullablastoma a just before his 16th birthday. He is still here with us nearly 2 years later but his tumour is still active. He has many disabilities from surgery and treatment and has a long battle ahead of him.

I use the Macmillan website for extra support as the have groups/forums for different cancers. There is one for brain cancers. You may find this helpful as there are many different people and ages going through it.

I am sorry that your dad has this diagnosis and that you have to watch him suffer. Cancer is horrific and it is heartbreaking to watch others suffer.

Thank you minmooch, and apologies for replying so late!

I'm so sorry to hear your DS is ill; it sounds like a very hard road for you all. I hope he is able to have some good quality of life, in between all the awful stuff.

Dad had quite a good week (relatively speaking) but has been very drowsy and unresponsive for the last couple of days. I think we've seen enough now to know that we absolutely have no idea what to expect next! He might rally a bit and have some more good days, or this might be the beginning of the end. I'm not remotely ready to let him go, but I could never be. I don't want his suffering to go on for any longer than it has to. He doesn't seem to be in pain, thankfully, but has barely any quality of life, for a man who enjoyed being outside as much as possible, and was always on the move.

Cancer is a ruthless bastard, isn't it? My mum is having her own battle with it. What a year.

My mil had brain mets (breast cancer) and survived 15 months but the last 4 she was bed bound and the 4 months prior to that she started going downhill.

It was very sad, but she is as peace now.

So sorry to hear this and I hope the whole family are managing.

Macmillan are wonderful as ate Marie curie

My dad died 6 weeks ago of malignant melanoma (skin cancer) that spread to his brain as well as everywhere else. He was on steroids for about 6 weeks before he died although we understand they stopped them just a few days before he died as they stopped working. My dad went into the hospice as he was unable to walk or stand but within 4weeks he was gone. He went downhill suddenly the week before he died and that's when he started the morphine before slipping to unconsciousness for the last 1.5 days. He never regained consciousness and he even surprised the doctors by his sudden decline and death.

I hope you are getting some 'quality' time with your dad. All I will say that no amount of time will ever seem enough but cherish the time you have even if you just sit and hold his hand and tell him how much you love him. You will be in my thoughts as I know how hard this time can be.

I'm really sorry. I lost my best friend to this a few years ago, we don't know if she had brain mets but it was everywhere else so in a sense it didn't matter so much at that stage.

Melanoma is an unpredictable cancer and can present in all sorts of ways so it is very difficult to say what might happen to your lovely dad.

I do know that Hospice is probably the very best place he could possibly be, in terms of pain control, sensitivity, kindness and attention to his needs.

If he has been referred there, then it it probably not going to be very long.

I would imagine that he will perhaps start to spend more and more time asleep - he may begin to be unable to communicate well, and he may say strange sounding things, and want to be moved around, and be agitated. He will stop eating and drinking, eventually, and he may have difficulty with other functions.

Once more I am very very sorry, my own dad is about the same age and I cannot imagine how gutting it would be to lose your father like this.

My grandfather died of a brain tumour. He was fit and healthy in November, until he collapsed while out shopping and it was diagnosed. He died the following February. I don't know what treatment he had but we went to see him at home close to the end and he was lucid but in quite a bit of pain (not sure if he had lowered his meds to see us for the day). I think he would have been more comfortable in a hospice, but he wanted to be at home, so I think your dad is in the best place.

The medicine did affect his bowels, which he hated (had always been a very dignified man so farting or worse in front of his family was awful for him), so be ready in case that happens.

I think this thread illustrates as said above that each tumour is different. We saw my grandfather quite close to the end and he had no trouble communicating and was not at all agitated. He was just himself, but in pain and immobile.

I'm very sorry that your father has this diagnosis. In my grandfather's case I am glad on reflection that it was this rather than something lingering as he was a "doer", so a long period of ill health or mental confusion would have been dreadful for him (not that it is easy for anyone).

My dad died from a brain tumour - he went into a coma quite soon after diagnosis - it lasted around 5 - 6 months before he died. A coma is not - as the medical soaps would have us believe a state of calm/quiet, but of movements, noise, occasional speech etc... but mainly - sorry to put it bluntly, lying there waiting to die.

The main thing is the acceptance of those around him that things will not get better, he is dying and needs to just be cared for.......... nothing you or anyone else do - or don't do - now will make any difference to the final outcome.

I hope it all goes "smoothly" for you, it can go on for a lot longer than you believe possible, or end in an instant - a light going out.... but so lovely that he has you there to care.

My Dad died of a brain tumour in January.

First symptom was in July and he was mis-diagnosed - so by the time he was diagnosed in October it was too late. He had GBM.

He was on steroids at first and he did have some radiotherapy to try and relieve symptoms.

We made the most of our time by having buffet style meals at the hospice he was in so we could all be together. I took more photos during that time than ever before and I still dont have enough of him.

He was very hungry when on his steroids so we also had fish and chips and Chinese takeaways - all food that he wanted. I have never seem him eat so much!!

When Dad was still mobile I took him out in a wheelchair as I knew that eventually he wouldn't be capable of getting out.

I found this link: www.brainhospice.com/SymptomTimeline.html

I printed it off and crossed off each symptom Dad developed. It just helped me feel that I knew what was going on. Not for everyone but it helped me.

Really feel for you x

Thank you all so much, for your kind words. I'm so sorry to read of your losses to this awful disease. Haribo, the progression and timescale of your day's illness mirrors my dads, almost exactly.

I have been away for the weekend to a wedding. On Friday, the hospice Dr told me that she thought dad would die over the weekend and I agonised over whether to still go away. The consensus of my family and friends (and my own conscience) was that I should go, and try to enjoy myself. So that's what I did, though it was very tough at times- seeing silver-haired folk having fun on the dance floor with their grandchildren was particularly hard, knowing that I will never again see my dad dance with my little girl.

We returned from our trip today and have just been to see dad. He is now asleep- unconscious perhaps (I'm not sure of the exact definition). He doesn't respond at all; his medications are given through a syringe driver and he has a catheter fitted. They have stopped the steroids but he is still having morphine, I think.

It's a very strange kind of limbo, waiting for this inevitable event which I hope will come soon, while simultaneously dreading it.

I sang to him today and squeezed his hand, and hope he knew I was there.

Oh Waterlego I gasped out loud when I read your post. I just came onto this board because my wonderful 64 yr old father died on Thursday and I was looking for some help from others who endured something similar - I can't believe just how similar your story is. My Dad was diagnosed with brain mets just 3 weeks ago, they never found a primary but suspected melanoma. He, too, began steroids but the symptoms came thick and fast (double vision, poor balance, slurred speech, withdrawal, sleep, sleep and more sleep). Eventually he had a huge internal bleed (exacerbated by anti-coagulant medication he was on) which caused a massive pulmonary embolism from which he couldn't be saved. We can't bear that he's gone but can already see the speed with which he went was a blessing considering what may have been ahead. I feel so deeply for you, the whole thing is unrelentingly shit.

Oh mummmypirate, my heart goes out to you. Such a very quick progression for your dad, that must have been so shocking. You must be reeling.

It really is unrelentingly shit. I long for my dad to be at peace but that in itself is a ridiculous thing to have to long for and just shows how utterly cruel and awful the whole thing is.

I hope you and your family are doing as well as could be expected during this dreadful time; I'm so sorry for your loss.

Hi waterlego. I wanted to say I've been thinking of you and your dad the last couple of days. I hope that you've been able to spend as much time as possible with him.

My dad was also 66 yrs old when he died in June. We were 'lucky' as some people put it as we knew he had malignant melenoma for 2 yrs before he died. Still it never really prepared us for the speed of his deterioration and the huge hole that he now leaves in our life. I wanted to say that please pm me if you need to talk to someone that understands some of what you're going though.

Hello again, and thank you for thinking of us Haribo.

My darling dad died this morning; very peacefully. I feel...exhausted, and numb. All normal, I'm sure.

We were called into the hospice yesterday afternoon as his breathing was noisy and strained, but he wasn't going to give in easily, and he kept going till this morning. The nurses said he must have a strong heart, and that made me feel very proud.

My brother and I spent the night with him in his hospice room. We shared a beer and talked and laughed about our childhood, and about dad and what he was like. I hope he was listening to it all.

Then this morning, he just faded away; quietly and without fanfare, which has always been dad's style. The hospice staff were wonderful; to dad and to us.

We are relieved he is at peace, while simultaneously wondering what our lives will look like with a dad-shaped hole in them!

My overwhelming feeling at the moment is one of great pride and admiration for that man. He was gentle, kind, hard-working, loyal, dependable, generous, unassuming. He was my blueprint for a Good Man, and goes some way to explaining why I ended up with such a lovely husband: I never had any doubt in my mind about what constitutes the right sort of man, thanks to his example. I shall miss him so much.

Waterlego, so sorry for your loss. Your words are beautiful, take care of yourself & each other

I just had a little cry when I read your post, waterlego. I obviously don't know you, or your dad, but he sounds absolutely lovely. Your love for him shines through, a gift that he has given you that you now pass on to your family. Just wanted to say I am sorry for such a difficult thing to happen.

My heart breaks for you!

The numbness is as you say normal. All I can say is be kind to yourself . I found doing little bits of housework helped me (and I normally hate doing housework). I guess you will be kept fairly busy over the next couple of weeks with all the arrangements and paperwork that needs to be done. So the numbness will help you get through to start with. I found it was after the funeral that the sadness, guilt and anger started to show it's self.

I love your description of your dad. he sounds like a wonderful man and dad and although you will always miss him he will always be close to you in your heart and memories. Hugs!

Im so sorry for your loss.

My Mil has 3 brain tumours. She is back in hospital since Friday. She was only diagnosed 2 weeks ago. She's on steroids & the Dr wants her to have radiotherapy but i think its cruel. Mil is very confused & not able to walk. Can't control going to the toilet since Thursday. She's not in pain or distressed which really makes it easier to manage the process.

Its so hard & unfair... In many ways she is already gone.

Your poor MIL shelly. My heart goes out to you all.

In many ways, I'm glad dad wasn't offered treatment- partly because I didn't feel he could have consented to it in any meaningful way. But mainly because, in his case, it wouldn't have made a blind bit of difference. They must feel your MIL has a chance, if they are offering radiotherapy. Would they be aiming to eliminate the tumours altogether, or just control them?

Your MIL'a symptoms sound very similar to my dad's. only 2 weeks from diagnosis and such a huge change in her- you must all be feeling shell-shocked; I know we were. We still are.

How is your partner doing? Do you have support from Macmillan or similar?

So sorry to hear about your loss, your post made me cry, you sound like a great daughter.

So sorry to hear about your loss, your post made me cry, you sound like a great daughter.