We Talk Brain Tumours

I am so sorry to read about all the loss of loved ones on here. Your stories have been amazing to read and I am so in awe of how strong you have all stayed. I hope you don't mind my question, but being new to this 'journey' I wondered what the speed of symptom onset has been like for those of you witnessing a GMB IV. My Dad, Ed's, tumour is apparently quite large. About the diameter of a tennis ball. The debulking has removed 'some' - but so much has changed in the last 6 weeks I find myself talking to Mum about whether symptoms are brain swelling or growth. Dad was just Dad 6 weeks ago - and after the surgery in Feb seemed to improve quickly. We had him back for a week or so. But, these few days we seem to have gone backwards. The dysphasia is worse now than it ever was. Poor Dad is getting frustrated - although good humoured. He laughs at the irony that the word he keeps using for everything is soup and he hates soup! He also seems to be loosing his voice and headaches have developed above the eye. None of these were there before surgery. We have spoken to the Unit and are upping the steroids tomorrow- but it seems to have changed so quickly. I know there is no 'normal' but does this sound familiar in terms of speed? Has anyone had any success with brain training exercises or word association to help with dysphasia? I know this is used with stroke sufferers and wondered if this may help? The mighty man that is my Dad is there, he has a lot more to say than soup! I am sorry about the timing of my questions, but the collective knowledge and experience, and honesty, is better than much of the advice I have found elsewhere Love and hope, Victoria xx

Hi there Victoria.  Very sorry to hear of your father's condition, but we're all here to help you as much as we possibly can.

The increased onset of symptoms can well be swelling of the brain tissue surrounding the tumor.  But, there are times when tumour growth or tissue swelling can cause a critical change by blocking off a nerve bundle or aqueduct.

Increasing the steroid does can help in reducing the swelling, and you may find that your father regains some order of sense as a consequence, but this isn't guaranteed.

At the end of the day though, talk about whether the symptoms are due to swelling or growth is somewhat irrelevant; dealing with the symptoms themselves and making your father more comfortable is the prime consideration.

I don't know much about speech therapy and whether it'll help.  But it will have a good side effect of giving your father something to focus on.  Be warned though, that you may not see results, and this can lead to a fair bit of frustration.

I very much hope that he gains some measure of comfort soon.  And don't lose that humour, it's vitally important.

Thanks Pete - it is much appreciated. I am definitely focused on getting Dad more comfortable, I struggle with this quiet man who normally has so much to say. So anything I can do to get him babbling on about the government, benefit fraud and the woes of the world I am going to try. I think he is more frustrated that he has to listen to his three opinionated children without adding his piece in! My next question is whether anyone has come across something called the Life Extension Brain Tumour Protocal? I have been sent a recommendation of supplements froma helpful relative. It is really interesting reading and suggests some 'supplements' that have been proven in medical studies to be useful to brain tumour patients. The optimist in me wants to trust the information - the slightly cynical real me ( whose health supplements include a large quantity of grape intake ;) ) is not so sure. I have sent some details to his Doctor, but in case they are in my cynical camp with no other experience to suggest otherwise - wanted to check. I have included the link in case anyone wanted to look at it http://www.lef.org/protocols/cancer/brain_tumor_01.htm Victoria x

Victoria, I've never heard of the Life Extension Brain Tumour Protocol.  I've taken a look at the web site and there's a fair few claims there.  However, without your own research, take each one of those claims with a hefty dose of salt.

By all means talk to your GP/Medical team regarding any diets, but from personal experience, we simply fed Ali whatever she enjoyed and whatever she was capable of eating.

As you can appreciate, there's not much you can do for your father except to make the most of the time he has left and give him the best quality of life that you can.  These diets may well include items that aren't pleasant, maybe have unpleasant side effects, or may as you to cut out dietary items that your father enjoys.

Yes, it may be possible to prolong life, but you'll have to judge whether there's a cost associated with that.  For Ali, I and the family opted for comfort over longevity, we gave her the best possible end of her life that we could.

Victoria

Having just completed the journey myself with my husband I have to say that I agree completely with what Pete says.

Spot on Pete. Well said.

Hope all my mates on here are good. I'm still reading and doing OK. 

Debs, I left my hairdryer on last week and put it down next to a can of hairspray! The first I knew, I was downstairs in the lounge and I heard this almighty explosion in my bedroom. I was digging bits of metal out of the wall! The carpet has a big melted hole in it and now I've got to buy a cupboard to cover it up. It also melted my GHD tongs!! And my kids? Just laughed. As did my in-laws (and they were there when it happened!). It made the room smell lovely for ages though. I was probably inhaling fumes for days too. Your story made me laugh out loud and feel like I've met my twin! We could never meet. We'd burn a house down between us in about an hour! 

Love and strength to all on this journey. I couldn't wish to meet a lovelier crowd. 

Pam

x

Hello, although I haven't posted for ages since my mum passed, I have often read and you're not far from my thoughts.

I have popped back as two years after mums passing from GBM my dad is now terminally ill with multiple BTs, they have originated from the lung although that is asymptomatic.   Dad was diagnosed last week and unfortunately he cant be offered any treatment.  I have hospice at home once again but do feel more clued up after nursing my mum for four months, the oncologist said the BTs will cause dads demise.  I am wondering if the journey will be the same as with a primary brain tumour? His only treatment is with the dexamethasone, he's on 8mg a day.  His speech is badly affected and he can hardly walk as his right side is virtually not working, dad is not confused, his mind is clear as a bell which in some ways seems cruel as he is totally aware of his decline, unlike mum who was in a happy slightly different dimension while she was at this stage, he is battling the carers and refuses personal assistance with dressing and hygiene and keeps falling over.

Does anyone know whether the journey with secondary brain tumours will be the same as a primary BT, the oncologist says it will be the BT that causes his demise in a few weeks?

I am referring once again to the most informative brain hospice site which was a godsend and very accurate with mum but not sure if it will be the same with my poor dad.

x

Just moving us back to front of the queue. Well Pam, at least we'd get on like a house on fire lol Love & strength to all who want or need it xxxx

Hello there fee.  So sorry to hear of your father, but I guess that you've gone through all of this before to a large extent.

Hopefully soon, your father will realise that he does need physical help.  If he's aware of his condition, then hopefully he will come to understand that his physical limitations are a product of the tumours.  He should take comfort in the fact that his mind and "self" is unaffected.

My wife was much the same in that her physical and speech delined before her mind (and thankfully, she slept a lot of the time).  I did what I could to distract her from her condition by talking to her, involving her in day to day life at home, having lots of visitors, and blatently disregarding healthcare advice in many areas.

I can't say whether secondary brain tumours are different to primarys.  As with these things, you're addressing the symptoms on a day to day basis.

With the situation about the carers, I'd consider talking to them about it as I'm sure they've run across this problem before and have coping mechanisms or advice.  I was blessed with my care agency, I learnt so much from them.

Peace and comfort for all.

Hi everyone, sitting here feeling so so let down by the NHS.  Not heard anything from Mac nurse who is excellent for a month until I phoned her last night in total desperation, I know she was unwell and as I said to her she is human and quite understand, but she is having to juggle all her caseload and is off next week, don t know if she can come to see me but will try and I know she will but saying that nothing for four bloody weeks.  The reason I phoned is that I am having serious problems with the care company.  Alan in his condition requires continuity and up beat carers, he has gelled with three male carers and his main carer Tony is the bees knees.  I have advised the company that Alan wants Tony and especially on my respite days (two days for three hours a week) and one night sitting a week which has only occurred once as last week was not required.  I have been made to feel like a nuisance and that they will not be dictated too who cares for Alan and send in inappropriate people so really in a mess then yesterday the co ordinator telephoned to say the carers had said no need for a double up as one carer does not have anything to do so that was changed to single carer.  After speaking with Tony and Mac nurse Alan does need a double sitting and if one has to just sit there so be it.  The co ordinator phoned this morning and I advised that the mac nurse would be in touch with her as basically I am not prepared to be made to feel a nuisance and demanding and I dont care about their rotas etc all I want is the right care for my husband.  She was quite off and I left it that she speak to my mac nurse and they could sort it out - end of conversation she advised me that my respite care for today has been cancelled.

I get a weekly calll from our useless DN nothing from GP surely they should be coming and visiting.  I think Alan has had a mild TIA as he could not feel his right arm, leg and was cold to touch, speech affected but this has slightly improved I think not sure but think so today.  Alan sleeping more but is alert when awake, eating like a horse but very depressed.  I feel as though not getting the support from the NHS.  I am low which I suppose is making everything worse.  Sitting here 24 7 waiting......wondering....feeling like a caged animal but want to be here don t get me wrong do not want in anyway for my man to suffer but I NEED TIMEOUT. 

Sunday went on meltdown, went to our local with Alan s bestfriend and mine who kept telling me I needed timeout, had a few more wines than should have to get told off by Alan, daughter and son, kids saying to me Mum I know it s hard but.......so don t feel I can do anything normal really.  Want to become an ostrich so I can bury my bloody head like the rest of my family and friends   grrrrrrrrrrrrr

Julie :{

 Julie, my heart breaks as I type this after reading your post.  I too am in an exact situation, hospice staff taking 4 weeks to hand in paper work to the occupation therapists to get ramps for Mums bungalow so she can to the hospice. I got it organised in 24 hours, albeit a very stressful 24 hours that I could’ve done without. Prescriptions not being delivered as they can’t get in and Mum can’t open the door, even though I have made a HUGE laminat3ed sign on the front door asking them to call me and I will give them the code to the key safe

I am so shocked and saddened by the bureaucracy, how different people GP’s,  DN’s, carers,  OCT’s, community hospice staff, hospice staff  - JUST DON’T TALK TO EACH OTHER. (Note how I have omitted Mac nurse as she is the WORST culprit and I haven’t heard from her since November)

Nothing gets done unless I get it done, which invariably takes time away from me when I need to chill out or WORK FOR A LIVING because I still need to.  Or time away from being with my Mum as I’m constantly trying to run around getting things organised, because no one will help me.  Even getting a wheelchair, I ended up buying one. I’m still waiting for the hospice to ‘find’ one for Mum to use if/when she eventually gets to go back for a day visit.

I’m so angry for me, for you for all of us.

 

I have no words Julie other than hang in there, because we have no choice. Today will finish and tomorrow will begin whether we like ti or not.

 

Much Love

 

Elisa xxxx