GBM Brain Tumors

Groenevelt68
Contributor

Re: GBM Brain Tumors

Hello, It has been awhile since I have been on the forum site. My husband Pieter passed away on the 6th June, almost 12 months to the day we were informed that he had GBM stage 4. I will continue to connect with the site, if any one wishes to chat.......... Carolien
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peanutz
Frequent Contributor

Re: GBM Brain Tumors

Hi Carolien, I'm so sorry for your loss, you have my deepest sympathy. How are you holding up? I just can't believe how it could happen so quick like this. We were talking about treatment options only a couple of months ago. Now I'm getting nervous about my partner :-S Take care
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Groenevelt68
Contributor

Re: GBM Brain Tumors

Hello Peanutz, In March we had the MRI which show the small spot growing on the left temporal lobe was indeed a tumor (having tripled in size since the Jan MRI). The surgeons indicated that surgery was not an option, but we could do radiation. The specialist indicated that Pieter could lose abilities in area of communication. Within weeks Pieter lost the ability to read, write and verbally communicate. We were informed to put up the Dex (which was working, as we could see the improvements), but eventually the improvements stabilized then we noticed a decline (thinking it was the tumor). I watched Pieter slowly lose the ability to sit, stand and walk, called an ambulance to assist us to get to appointments. Once at the hospital (1st May), Pieter was placed in palliative care and we were giving three days. The doctors were only going to give Dex and morphine, all other meds removed. Then Pieter started to respond, it was found that there was an error in the meds and accidentally Pieter had no Dex for a few days (Dex was mixed up), which allowed for the swelling and tumor to have fun. Once Pieter was out of danger, we were transferred to local hospital for a week before being allowed to go home. At home Pieter had the ability to use the commode, and sit up, watch tv and occasionally chatted (not always making sense). Then Pieter started to decline, difficulty in standing up, then difficulty in sitting up, followed by difficulty in rolling/moving in bed (so every four hours I would move Pieter). This was then followed by difficulty in swallowing foods (meds were crushed and placed in thicken fluids), in the end even puréed fruit was to thick and had to be thinned down so Pieter could swallow. Pieter' breathing over the past two weeks had become erratic (normal, deep, shallow, mix of all three). On the night of the 5th, Pieter was going between shallow breathing and deep breathing, but just before 5am on the 6th June I woke (not that I got much sleep, listening to the breathing) due to a change in the breathing. Pieter was awake, have turned on his back so he could breath, so I got my youngest daughter up and we made Pieter comfortable (with the use of hospital bed we obtained through DVA) by placing him in a sitting position, which allowed the lungs more room to expand. My daughter and I sat with Pieter, talking to him, giving him cuddles, telling him it is okay. There was no pain, fear or panic in his eyes, his took his last breath at 6am. Pieter is finally at peace, the tumor can now do no more damage. For me:- I have been trying to keep myself busy (helps dull the pain and loss), when it is quiet then more often than not the tears flow. The tears come and go through out the day and night. Sleep is not easy to come by, the emptiness in both my heart and the house is felt keenly. I talk to him every day and have continued to write in the diary I started last year about our journey. Tidying up the kitchen (putting away all the meds and equipment), washing the bedding, all reminders. The funeral is on Wednesday 13th June. All the things that have to be done is amazing. For me personally, I have thought about what I will do, it changes a lot, I will have a short time where I can reflect over what my future holds, then I will have to find work and get back on the wheel of life (not sure whether I can do it in one go, or whether it will take many goes, to get back into the swing). My middle daughter is getting married in July (a point to aim for at this point in time). It is a huge head spinner, heart wrencher, life changing experience. I miss touching him, kissing him and listening to his voice. I know the pain will slowly go away but for now........ Thank you for your support.
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femme
Occasional Contributor

Re: GBM Brain Tumors

Our sincere condolences, may time give you and your family the strength you all need now and in the future. (in gedachten)if you are Dutch then that comment will make sense.
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Hammy
Occasional Contributor

Re: GBM Brain Tumors

Hi Carolien Sincere condolences to you and your family, my heart goes out to you all and will be sending you extra prayers on the 13th. The only good thing to hold on to is your hubby is no longer in any pain... May he rest in peace xoxo Hi Rain Hope your hubby is keeping well and you have had no more set backs,you are at present living through my fear and I pray when the time comes I will have the same strength as you.. To everyone else I hope you and your loved ones are all keeping well and you get moments to smell the roses!! My hubby is at this stage doing really well he starts on his next round of 5/23 the week after next. I am dreading our next MRI as his last one showed a little nodule (which may be the after effects of the radiation) I read a good quote on another site for GBM which was "Don't go there... till you have to!!" so I am trying to live my life with that mantra!! I ask for love and healing to be sent to each and everyone of us who are facing this and that we receive the strength to cope with what comes our way... Take care xoxox
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Groenevelt68
Contributor

Re: GBM Brain Tumors

Hello Hammy, The mantra is correct. It is what followed throughout the process. Deal with today, because when you look to far ahead, it can be painful. My thoughts are with you all, even though I have lost my best friend, soul mate, husband to this cancer, I know that there is no more suffering for him, though now I deal with mine, with support from family and friends. I know and understand how many of you are feeling and will be here for you when you need someone to vent, chat, cry. Carolien
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Rain_76
Occasional Contributor

Re: GBM Brain Tumors

Hi, Hope things are going well, we are doing fine at the moment, he is getting annoyed at little things, he doesn't say so but his leg jumps up and down when he is upset about something, and when you ask him he will say no he isn't, he has gotten a bit more confused with words, I asked him if he is ok, knowing that the 4 tumors are growing, and he said I think I had a tumor day the other day, whatever that means, I have noticed the front of his head is a little swollen, the Dex can only work so long, as the body gets ammune to it and then it doesn't do it's job, so my local doctor told me, he is good, he comes to the house every week and gave me his mobile number to ring if anything happens, I suppose that is the benefit of living in a small country town, Gary only asked me to promise one thing at the beginning of this and that is not to let him die in a hospital, and that will be a promise I keep, lucky I have our doctor on our side. I was told by our nerosugeon that you will never stop this, they were so brutal the whole time with me, my daughter was so shocked, I suppose that is why I am dealing with this alright, they gave me no hope from when he came out of the operation, arseholes, but Gary & I have known from day dot, doesn't make it any easier, to lose your soul mate, but the kids are older and the grandkids are 6 to 14 years old, so they will always remember him, but I hate this thing the GMB, never heard of the thing before this, but the oncologist said he has people who has survived more than 2 years so don't give up hope, stay strong, Lorraine.
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CatBye
Occasional Contributor

Re: GBM Brain Tumors

How is everyone going guys? I am feeling pretty good latley. I have another MRI in 2 weeks!! I have them every 3 months, it feels like thats how i live my life. In spans of 3 months... It gets hard sometimes, i try and stay positive.
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peanutz
Frequent Contributor

Re: GBM Brain Tumors

Hi Carolien, Thanks for this. I know not everyone is the same but this does give me an idea of what to expect. It must be incredibly hard to deal with all this. I don't want to imagine what my life will be like without my partner even though I try to be prepared for the worst that could be coming. BIG HUG for you!
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rarsie
Contributor

Re: GBM Brain Tumors

Hi Hammy, Just checking to see how hubby and you are doing, we go for my sons MRI on Friday coming rarsie
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