We Talk Brain Tumours

Oh, while things were in change, I found the OT nurse invaluable in discussing equipment needs and technique.

I was a bit of a curse to them as I insisted on using my strength to move Ali rather than using the equipment, but I always preferred holding her as much as possible.

But I digress.  You have a support network around you, so don't be afraid to pick up the phone and ask for advice (or even just to validate)/

Here is an update on  a clinical trial currently being run in USA only, its a cell vaccine for GBM  and early indication is that it is increasing average survival by almost 12 months.  Interesting reading and it is expected to expand globally very soon

http://ir.celldextherapeutics.com/phoenix.zhtml?c=93243&p=irol-newsArticle&ID=1632411&highlight=

This is a device that has been approved by FDA for BT and brain mets.  A liquid radiation technique, that is less likely to damage healthy brain tissue

http://virtualtrials.com/news3.cfm?item=5123

Joanna x

Oh Pam....what a laugh I had at the Gospel singing ! Pete is right , there is black humour in all of our stories and it is probably what keeps us going. I had an incident where i managed to jam my husband suspended above me in the hoist during a toilet situation. Like something from a bad porn movie. I think it would be called "golden showers"

The obsessive behaviour is all too familiar to all of us. Not being able to leave the house without phone ,wipes , water, ipad, and checking them every 2 minutes to see if all were in right place. Wearing a huge tweed coat in 70 degree sunshine, wanting breakfast at 3 a.m. , insisting on going to the loo every half hour for weeks" just in case" when it involved hoists and wheelchairs and us falling on top of one another in the struggle to get there on time....only to find it was a false alarm. The personality changes are the most upsetting....you are at the end of your tether and doing everything you can ..and the one that you are doing it for just demands more and more. I was lucky in that Mark was never angry or aggressive, but the lack of emotion and staring at the wall just broke my heart. It was as though he was trying to distance himself and spare us. 

Take care all

Cathix

Thanks Cat and Pete

I'm glad you mentioned the humour. There was a part of my brain which was saying 'this is actually quite funny' but then I would feel disloyal.

I've just posted this on "Carers Only" under the title 'You couldn't make this up" as the situation has now got worse but your responses made me feel better about posting it on here too. Some repetition of last post but keep reading, I defy you not to find some of it funny:

Well, what a bizarre day I'm having!!

Tony went for an MRI scan this morning, the results of which he will find out on Wednesday. In the build up to today I could see that he was becoming more stressed and his behaviour was becoming a little strange. Firstly, he suddenly found God. He believes that the arrival of a new carer (I can't remember her name!!) is a sign that God exists. She's presbytarian and I think during his showers in the morning she's been talking to him about God. Secondly, he decided to join a choir. Thirdly, he's become obsessed with buying a speedboat (really?). Fourthly (?) he has decided that he has become a world leader in inspirational coaching and has taken it upon himself to tell me, the children, his father, his brother, his friends, how they should change themselves in order to improve their lives and be more like him (kind of him isn't it?).

Anyway, on the way back from the hospital (we have a specially adapted minibus and his wheelchair slots into the passenger space next to the driver) we got into a discussion about what we are going to do with the rest of our day. As usual, he was planning a whole list of things which involved getting him in and out of the van an inappropriate amount of times (my back is already in agony most of the time so I try to keep the ins and outs to a max of two a day). So I pointed out that I can only do so much and I think we should perhaps move some actions to tomorrow. Then we got into a debate about how I control everything in his life and I said the usual 'I'm not a f@!- ing workhorse, I'm a human with physical limits (we have this argument at least once a week). Then he threw his mobile phone on the floor which is now completely broken. Obviously not content with that he took his bottle of water and started pouring it all over me!! Then he started hitting me with the water bottle and then he abandoned the empty water bottle and just started punching me outright! All while I continued to drive the car - through London!!

And where are we now? It's 11.30 a.m. He's refused to get out of the van, despite being soaked through to the skin. So I've parked up in the basement car park and he's clinging to the steering wheel, refusing to let me bring him upstairs. He says he's phoned his best friend to come and get him but absolutely will not get out of the van. He's been there for an hour now. I've left a message for his best friend to ring me but have, as yet, not heard from him. He says I punched him!! 

I've been on every single brain tumour/cancer support website and I have not read about anything like this!! I've called the District Nurse for advice but, as yet, he hasn't called me back. I've phoned the Macmillan helpline and, whilst sympathetic, didn't really offer me anything practical in way of advice. It doesn't seem like an appropriate situation to speak to the GP about. I'm just completely flummoxed.

I understand that this must be an extremely stressful time for him. The wait until the results come through must be complete hell but I can't allow him to abuse me in this way.

Any ideas anyone?

Pam

x

Pam.  So sorry that you're having to endure this level of abuse from Tony.  Even though the abuse is surely unintentional, it's still not right that you should go through this.

You definitely need to speak to your GPas soon as you can about this behaviour as you may be able to get some medication that can tone down these bad episodes.  This might make him more subdued, but it will ease the torment in his mind.

I hope that you both find peace soon.

ha ha pete love the thought of the lady bumps in the fleeces!

I found the expectation of how others expected me to deal with grief a big hassle.  My DH's family went into overdrive organising days out for my MIL, dinners, etc.  I went to one day out and then flatly refused any more invites because all everyone kept saying was 'cheer up' or 'are you okay'.  Sod off I wanted to say, of course I am not OKAY.  If my way of grieving is to sit quietly and have a cry or to be honest just cry whilst doing the house work, then that is how I will do it.  At some point I know, I will stop crying and being angry and morose (which of course in time, I did) but in the meantime this is me, so stop worrying and get on with your own grief (or help with the practical things instead of sitting their silent over cups of tea).

Bit harsh when I look at it now but I have always grieved that way and the pretence of happiness is just far too much effort at such an awful time.  I did feel guilty when eventually I did start to smile again but that too passed.  I prefer not to fake my behaviour I am not that good an actor!

Pam, I agree with Pete.  Speak to your GP as soon as possible.  Or phone your oncologist, you should have his number or the secretaries number.  Tony needs some help.  Do you also have a dedicated mac nurse?  it didnt sound as though you so but you need to get that organised as well.

I realy hope you get this sorted quickly

Joanna x

Hi Pam,

I can identify with you on the personality part!  Boy is it hard.  My husband who is also 50 was diagnosed with GBM1V on the 1st September 2010.  He had debulking op 20th Sept, followed by six weeks RT and chemo.  Regrowth detected in June this year 2nd debulking 18th July, all treatment stopped on the 18th August.

Well thats the background in brief.   Alan is obsessive, totally unrational, moody downright rude and seems to have become racist (never was and we have very close friends and family who are ethnic) oh but 'they are alright'   He seems to think now he can do whatever he likes meaning going to his beloved farm and doing untold things that he cannot - I think he would be sectioned if I told the authorities.  The tumour is on the left temporal lobe, fortunately his mobility is still in tact.  He gets very tired but stays awake most of the night.   Very sharp with his children and even worse with me.  His bog standard saying to me is you will be glad when I am six feet under.  Tells blatent lies like I ignore him and am horrible to him.    My very strong placid darling husband is a complete stranger.  We had at the weekend an occasion when I had managed to get Alan to go for a drink at the club we use, to be told by the village drunk that Alan was not all there!!!!   That really hit home.

At the present he is obsessed with the birds in the garden, he buys seed by the bucket load, making the bird table like a prison so no other animal can steel his birds food.  Our poor cat not allowed at during the day and the dogs are told off if they try to snuffle seed thats on the ground!   Just an example of the behaviour.   I feel all over the place all the time.  It is relentless from the moment dawn breaks to going to bed.   He holds the remote in his hand all night, will be snoring but minute I try to prize it off him to switch off he is awake and stays awake out of definance.

I know that every case is different but from my point of view the deterioration shows tumour growth, being that chemo has stopped and he gets worse by the day, week in behaviour (tumour on part of the brain which affects personality) also he mixes his words up which is another sign.

It is a cruel bastard of a disease and my thoughts are with you and if you want to ask anything at all please do so take care Julie x

Oh Julie

Poor us! Thank you for sharing this, it makes all the difference. Not that I'm glad it's happening to you too but there is such a lot of comfort in knowing that you aren't going crazy and you aren't imaging it and, despite your best efforts, there are some things that are just totally out of our control in this situation.

My situation has progressed a little since Tony's 11.30 "sit in" as mentioned on my previous post.

I left him in the van in the basement car park for, what I thought would be an appropriate amount of time (I knew he'd want a wee eventually) and made myself a bacon sandwich and watched a bit of daytime telly. At 12.30 I went down to check on him and he eventually agreed to come upstairs. After much pushing and shoving, I realised that his new wheelchair (made especially to suit his needs) didn't fit through the basement doors in the garage (made wider to accommodate his increase in weight) so had to get him back in the van and drive back out of the car park and up to the ground level entrance to get him out. When I put him back in the van, in my irritation and anger (I was still dripping wet from the baptism), I didn't put his wheelchair seatbelt back on properly and as I went to reverse out of the parking space I just heard a thud and turned to see him fly backwards - leaving his two swollen legs sticking right up in the air!

What do I do now!!! I tried a couple of different ways to get him up by myself but he's 18 stone and I'm not superwoman! So I eventually had to go upstairs to the concierge and get the building manager to come down and help me. Won't be adding this story to my memory book!

I eventually got him back in the flat and explained to him that I didn't think I was coping with things very well and had put in a call to the District Nurse to discuss some alternative ways to manage things. And his response? 

"You said some horrendous things to me (which I accept I did), I had every right to hit you. And if you mouth off like that again I'll do it again. So tell the District Nurse when he comes that you want me put into respite because I can't guarantee I won't hit you again."

As apologies go, it wasn't his best to be honest. He's now in bed with a can of lager and his iPad. His best friend is coming over for a chat so I will take the opportunity to disappear for a while. 

I'm going to speak to the GP about getting him on some kind of medication to calm his moods. A great suggestion made by Pete - thanks Pete. I will also speak to the District Nurse but we are moving down to Hampshire next week (to live near his brother's family and his parents) and I suspect that in the transfer of responsibility it will be impossible to manage this smoothly with the support teams, at least for a while. Having family around will certainly help - at least on paper. You can't assume anything in this situation can you?

Julie - totally get the racism. I cannot repeat on here some of the things he's said. We have had the good fortune of living overseas a few times and have friends from many cultures and backgrounds - if they could hear him, I'm not sure they would still be our friends.

Thanks everyone. I really don't know what I'd do without my Macmillan family. I would truly have gone mad by now. Thank God you're all there.

Pam

x

Im with everyone else here. You need to get help and you must tell Gp and Oncologist you cannot cope. In my experience if you appear strong and able to "get on with it" you will be left to fend for yourself. You have yourself and two young children  who need to be protected.

Back on the subject of obsessions, in the last few months of my husbands life he bought 2 new ipads( already had one) an new iphone(already had one) a Macbook air(already had one) . Half of the Hugo Boss internet site ( because of the steroids they were not exactly good fit) and ....a Porsche Panamera with every extra known to man.

Julie! Seeds! What with seeds and Gospel songs and Debs and her Lilac clothes -horse.. we will need to start writing that book. Mind you...only BT patients and Carers would find it funny...the rest of the world would think we are deranged.

love Cx