Help from those who have been "there" before with GBMs.

[netty]

My hubby had his 2nd craniotomy, 31/5/12. Have finished a second round on radium (as it was a fair distance from original tumour which appears unchanged. Has the daily chemo with radium and was pretty well really, apart from tiredness. After 4 week break had an MRI 2 weeks ago ...radiation changes which was what I expected her to say, and we started the temodal again in a higher dose first 5 days of every month. Over the past 2 weeks noticed considerable changes in speech (worse some days than others), mixing up the kids names or not remembering them at all which is distressing to, 12, 14 and 16 yr olds. Calling the dog by our sons name. He will often start sentences then doesn't know how to finish them or what he was saying. He has done so well since diagnosis in 2009 but now I am getting freaked out, wake up with fear and dread, cry alot and am finding life pretty lonely, (praise God I have the children). Just reading other posts sufferers seem to be good and then deteriorate very quickly. I now realise I need to be thinking of putting some options in place, where as before just kept the positive attitude that we would beat this beast. Oncologist says we will rescan in 3 months ..great a life time for us. I am sure it is worrying him but he seems content to watch movies and rest...I'm continually freaking out trying to run the house, fill appointments, arrange school and life for 3 teenagers....I know no one can give me times but from what I have read like I said things can change so quickly...just need a sounding board I think from those who have walked this nasty path.

[exhausted]

Have messaged you.

[storm]

Hi Netty Re Options - make sure you have an enduring power of attorney as soon as you can so that you able to look after some of his affairs (ie Medibank, health funds/ licence/ access his bank accounts/phone accounts etc) In NSW get a form for the enduring power of attorney (find one on the net but make sure that its for NSW -I believe each state may have different ones) read/fill it in what you can make an appointment to see the Chamber Magistrate (in your local court) he/she will assess whether your husband is capable of making a decision to allow you to do this, and sign the form. You need to do it now before his speech and cognitive powers decrease further. and you will need to see the chamber magistrate with your husband See traffic authority for disabled sticker Plan for the funeral what does he want, what do you My partner Lorraine died on the 1-10-2012 3 weeks ago..... seems soo long ago She wrote down 12 months earlier what she wanted including music. It helped me, I now play Beethoven's 9th especially the Ode to Joy for the 50th time (100th?) after the funeral, it reverberates in my mind/body I know when my grief is very close There is still a lot of organisation to be done & decisions before the funeral so if some of the basics are done it makes for soo much less stress on your when the time comes, when he dies. Simple casket, viewing, service and light food after for 80 people $7,000 maybe not much but if your budget is tight and no funeral insurance it is difficult to find Are you intending to have him at home at the final stages /or as long as you are able to physically cope (I being a male was easier for me) then have you a palliative care team? - if not talk with your oncologist get contacts phone number keep a list of emergency phone numbers People who have brain tumors have a high tendency to have seizures. Know some of the procedures to help him so he does not hurt himself till ambulance can arrive - its a scary experience when first confronted. Lorraine had multiple seizures at the start of August she lost her ability to move her right arm lost a lot of power in her right leg. She was in hospital for a week our home was then assessed for what is required to best manage Lorraine at home in a wheelchair - toilet showers dressing food - suggestion Meals on wheels it saves 2-3 hours in kitchen Its a must if you have to be with him for 24 hrs to make sure he does not have a fall and care for him(Lorraine constantly tried to move to go to toilet by herself when I was upstairs getting a drink etc for her in 5 minutes I came back down to find her flat on her back unable to move help herself concern that she breaks a bone and then ends back in hospital Hugs for your journey Geoff

[netty]

Hi Geoff, Thanks so much for you valuable info. I do have enduring power of attorney, we got that organised when he was first diagnosed as they gave us the 3months scenario..here we are just over 3 years later, so how wrong can they be. We are very fortunate for so long but what stressful years they have been, living from MRI to MRI etc but you know all that. Some of the other info I have not given a thought. The pallitive care team ...well I have the phone numbers etc but cannot bring myself to go there yet, however, I know I may well regret that when something happens for which I really need them. I just think I know that means the "real" beginning of the end and for some reason I panic and cannot go to that place. I guess that sounds really stupid and naive. I keep making excuses to myself like I'll wait until the results of the next MRI as that is only a few weeks away. Call me crazy I just don't want to go through this crap. Not sure if I have told you how sorry I am for your loss. So lovely of you all that have lost to come back on this site to help others, it must make you keep reliving it?? Also I guess the cyber friendships that are made mean alot. I will take on board all you have said and start putting more things in place...eg we have discussed the funeral...he is not that type of bloke, has always said for years if he every died put him in a cardboard box in the back yard. Not sure how to bring it up with him because he his not one like I said for any sort of fuss to be made. I know it can be simple but guess another place I don't want to go at the moment as it is really only the last 2-3 weeks I have seen him cry most days and talk about not getting better, so I don't really want to start talking about funerals. I am pretty confident I know mostly what he would like. Only regret I have is we haven't had a family photo taken for years, and I do wish I had of done that when he much more well, but never too late. Take care, you are an awesome human being and I know would have been an awesome husband to your wife. Wynette xx

[peanutz]

One thing to note about getting help from palliative care team, make sure that you have a hospital bed in place. Without having the hospital bed at home, should your husband become bed bound and need help, they can't send their nurse out to help you due to WH&S.

[rarsie]

Hi Netty, I thought and wanted my son at home, never did I think he would pass away in hospital, but thats exactly what happened and it was ok, they the pallitive care team are amazing people just talking to them made me cry they are so caring and I found it took the stree off the family so we could enjoy the last week God Bless you Netty rarsie

[Minx]

I agree with Rarsie, I have too had what I would call a very positive experience with Pallitive Care Hospital. The amazing compassion the staff have at such a hard time in peoples lives made the last weeks with my step mother easier to deal with. She didn't want that for her ending but she realised that was the best place for her care. Xo

[Groenevelt68]

Hello, I came to realise early in the piece with Pieter that I was working along side the medical staff providing palliative care, at first that scared me but then realised that people diagnosed with GBM are already (once diagnosed) under palliative care. Essentially it is another form of caring. I agree that getting equipment, papers and funeral in order, even if you only start the processes are a great help. Equipment such as the hospital bed, incontinence aids, food supements for when taste buds change or when food becomes difficult to swallow. Power of attorney is great but also make sure all papers are in order (for after) as power of attorney stops the moment someone passes away. Funeral arrangements, Pieter had always indicated a cardboard box and BBQ, but as he progressed Pieter asked if he could have music, then asked about poppy service (having been in defence force), and as Pieter wanted the changes I worked with the funeral director to make sure Pieter got his wishes. Pieter also wanted to stay home, which worked well for him. My children assisted with Pieter' care, with my daughter was with Pieter and I on his passing. You need to do what you believe is the best for you and your family, all of us here understand what you are going through and we can provide information on what worked or did not work for us, but you have to decide your next step. We can only support you in your decision. Our thoughts are with you.