Hello Rain76, Just going through the comments, and noticed the one on Dex and how it stops working. Actually the reason why it seems to stop working is due to increases swelling in the brain. So what I found was when Pieter abilities started to drop, I would chat with oncologist and we would increase the dose. I was lucky as the oncologist allowed me to work with Pieter in regards to monitoring his abilities and adjust the Dex accordingly. With every change in dose I would discuss with oncologist at next appointment. We were never happy in the beginning with Dex, as when they first introduced it, it was to high and effected Pieter which he did not like (mentally). Then when then non steriode based anti-inflamm did not work we were highly encouraged to try Dex again. We started with a low dose which assisted within 24 hours. In March when we were told about the third tumor (no surgery), we were told about the possibility of loss of communication skills, when it happened Pieter was on 1mg Dex, we took it to 4mg with good results, then to 8mg with even more results, it was when we went to 16mg that we had the med error that placed Pieter in hospital. In hospital Pieter had no movement at all, no speech, no abilities, we were told to say our good byes. The medical staff only used morphine for pain and Dex (not realising that this was the drug that had been omitted, due to error). Within 24 hours of Dex going back into Pieter he started to improve, in 48 hours he was talking and trying to walk. Once doctors realised this they replaced all other drugs as well. I know from personal experience the Dex does assist with keeping the swelling down, to keep the abilities going. In time the tumor will beat the effects of the Dex as the swelling increases, as it did with Pieter. We finally decided to stop increasing the Dex when it hit 20mg. The Internet indicates that there is no max usage of Dex, and in some countries it goes as high as 30mg, all Dex is, is an anti-inflamm and brings down the swelling. Yes, it can be addictive but I feel in our case with GBM that is not an issue. You know your partner, you know what they are like, and only you will notice if the Dex assists with improvement if you wish to try and increase the dose (with discussion of medical staff). If it helps to improve quality of life (even for the short time) then it is a bonus. Dex is not to be abused, but can assist with guidance. Love & Hugs Carolien ... View more

Hi Geoff, The muscular pain is due to the tumor, ask Lorraine about how bad the pain is and give pain relief accordingly. As for the brain, staff would ask if Pieter had pain in the head (brain does not have pain receptors), so I would ask Pieter if he felt pressure and give relief based on how bad the pressure was. As for movement in bed, I notices that Pieter would not move as much, so every 2-3 hours would roll Pieter to a new position to relieve the impact on the body (minimise pain and bed sores). Even of it meant that I woke him, I would explain to Pieter what I was doing and why. I also found it good to talk to Pieter all the time (waffling on) about what I am doing, why I am doing it, with all aspects of every day life. It assisted Pieter to know where I am, to know what is going on. Pieter also seemed to know that the end was nearing. I noticed a change within Pieter in regards to this knowledge. It seemed he was at peace, had sorted his mind and was ready for the next stage. I believe that it is a stage that many go through and it helps them. The decline in their health/body is awful. Watching the muscle wastage in Pieter's legs was bad, in the end his legs were only skin and bone. I would make sure Pieter was covered when ever his family (especially his mother) came to visit, so they could not see the body. It is a awful cancer, which affects so much of the person due to what the cancer does to/in the brain. Hi Terese, My thoughts are with you. I understand the journey you are on. All I can say is enjoy every precious moment you can. Take photos and videos (I took may photos and some video on our journey), at first I had trouble looking and watching but over time I find that I need to see them as a reminder of Pieter, to assist me with understanding what happened. To everyone, My thoughts and love to you all. You all have the strength for your loved ones in their journey, as well as your own. There are many who have travelled the same road, who can support you. Reach out and they will be there. Love and hugs Carolien ... View more

Hello all, I am taking one day at a time, within the roller coaster of grief. Recently had a job interview (but did not get job), will continue to apply for and find a job. I also have started back at uni, giving me something to do with my mind and hands. Lorraine, as for the cancer moving through the body, GBM is only a brain cancer, as the only place where Glio cells are is in the brain. You know the old saying that we only use 10% of our brain, well the rest tend to be Glio cells which help the brain function. These cells in some people (our loved ones) misfire and form GBM tumors. The black stools, I agree do indicate old blood, which means there is an issue with bowels, which will require investigation. It can be because the tumors in the brain have been blocking or interfering with functions in the bowels/body. The reason our loved ones have so many issues with their bodies is due to the impact of tumor in brain (moving the brain around to allow the tumor to grow, not a lot of growing room in the brain, so the brain squashes itself to make room, which then impacts on the body). Apparently there can be secondary cancers associated with GBM which can come out due to treatment (radiation and chemo), also the chance of another form of brain cancer can develop. Kim, I understand the feeling, there will be more times in the future that you will feel the same. All I can say is find the positive (no matter how small, a smile, a hug) every day and use the positive as a lifeline, I found if I allowed to much to cramp my mind I would become empty, and overwhelmed with emotions, I found when I looked for and enjoyed the positives that life (for the short term) was good. I enjoyed every moment with Pieter, I made sure I was always happy (that was hard and a few times can crashing) when I was with him. Even when Pieter was dying I spoke in a positive way (all about love, how we would be okay) even though my insides were screaming (this is not happening). This is all about making the journey for our loved ones as happy and pleasant as possible. I agree that this is a shitty cancer, just taking away the ones we love, with minimal opportunity for remission, to give us the opportunity of time. You all are in my thoughts daily. All my love Carolien ... View more

Hello all, I am taking one day at a time, within the roller coaster of grief. Recently had a job interview (but did not get job), will continue to apply for and find a job. I also have started back at uni, giving me something to do with my mind and hands. Lorraine, as for the cancer moving through the body, GBM is only a brain cancer, as the only place where Glio cells are is in the brain. You know the old saying that we only use 10% of our brain, well the rest tend to be Glio cells which help the brain function. These cells in some people (our loved ones) misfire and form GBM tumors. The black stools, I agree do indicate old blood, which means there is an issue with bowels, which will require investigation. It can be because the tumors in the brain have been blocking or interfering with functions in the brain. The reason our loved ones have so many issues with their bodies is due to the impact of tumor in brain (moving the brain around to allow the tumor to grow, not a lot of growing room in the brain, so the brain squashes itself to make room, which then impacts on the body). Apparently there can be secondary cancers associated with GBM which can come out due to treatment (radiation and chemo), also the chance of another form of brain cancer can develop. Kim, I understand the feeling, there will be more times in the future that you will feel the same. All I can say is find the positive (no matter how small, a smile, a hug) every day and use the positive as a lifeline, I found if I allowed to much to cramp my mind I would become empty, and overwhelmed with emotions, I found when I looked for and enjoyed the positives that life (for the short term) was good. I enjoyed every moment with Pieter, I made sure I was always happy (that was hard and a few times can crashing) when I was with him. Even when Pieter was dying I spoke in a positive way (all about love, how we would be okay) even though my insides were screaming (this is not happening). This is all about making the journey for our loved ones as happy and pleasant as possible. I agree that this is a shitty cancer, just taking away the ones we love, with minimal opportunity for remission, to give us the opportunity of time. You all are in my thoughts daily. All my love Carolien ... View more

Hello all:- 1232Michelle in regards to the blemish. We had an MRI in Sept last year (was it only then), which showed a blemish, the chemotherapist wanted to start Pieter on the trial of Avastin (we were to think about it), then in Nov she was away and the locum did not know about it and did not see what fuss was about with new MRI, so nothing done. Then in Jan this year the blemish was then 1.2cm in size and by March over 3cm in size (which by then was to big for surgery as it was located in left temporal lobe), had it been in the same area as the first two tumors then we would have had a greater success, and had Pieter for longer. So I am afraid there is a chance that a new tumor is forming but medical staff are still themselves learning more and more about these tumors, the brain is such a complex part of the body. Summer Fun in regards to tumors only being in the brain. GBM is a brain tumor, it affects the Glio cells in the brain. You know the old saying that we only use 10% of our brain, well apparently the other 90% (approx) is Glio cells and fluid which assist the neurons to work and it is a defect in the Glio cells that create the tumor. So yes, the cancer is only based in brain and do not travel through the body. GBM:- think of those little round mushrooms that you see, and when you touch it, it pops and the green spores flow away to land and grow again. Well GBM is similar, when operating the tumor once disturbed can do similar in regards to a cell or two breaking away and starting a new tumor within 2-5cm from original tumor, that is why most GBM tumors are clustered in one area. In regards to Pieter his first two where in right and left frontal lobe (within a short space from each other), but the third was in left temporal lobe (which was like GBM starting all over again as it was not associated with the first ones), which is why no surgery. For people who have re-occurring tumors in the same area of the original have a better chance for longer life. Rain76 in regards to repetitive phrases. Pieter also went through that, one day everything would be the word birdies, another flowers. Pieter also liked to know where we are, what we are doing. So I started talking all the time, just chatting so Pieter would know where I am, as he declined I would explain to him what I was doing, why I am doing it, it provided him comfort. In the end, as his breathing changed, I sat with him, telling Pieter I loved him, that we all loved him, and just before he passed away, I told Pieter that it was okay, that we will be okay (though inside I was screaming to Pieter not to leave me, us), it was his special time and to put my thoughts onto him would not have made his passing easier. I also prepared the funeral prior to Pieter passing and yes it did help. As I had started open dialogue with the funeral home and so once Pieter passed, the assistance from the funeral home was fantastic (it made me feel like they understood me). Though we did not get to change as much into my name as we should have so now the solicitors are helping me, so that I can get things arranged in regards to the property. So yes, I do believe that once cancer (GBM) is diagnosed, then changing details, making arrangements as much as possible is a great idea, as it does take pressure away. Peanutz in regards to tumor and spreading. I think I answered above. I am glad to hear hubby is going okay at this point. The journey is like a bad roller coaster in regards to how it affects the person and family. I think of you and all who use the site, as I have a good understanding of the current journey you are all on and I wish you all the strength, love, and a shoulder to cry on at any time. Remember that if you just want to vent, chat, or get stuff off your liver (so to speak) I am here. ... View more

Grief is definitely a personal journey, as no two people feel exactly the same, go through the same emotions to deal with the passing of a loved one. People who have known grief (have gone down a similar path) can understand some of which you are going through. You can also tell which people who have not gone along the path of grief as these people tend to offer the words of comfort (thinking that is what is required). It is an interesting journey, and so far I find that the grief does not actually get better, but what happens is that we develop emotional tools to assist us to get back into the world to function. The daily tears of the loss, lessons and the feeling of someone reaching in to rip out your heart starts to dull but the tears are never far away and the pain in the heart does start to dull, but something will always be missing. The smile, laughter, presence of the one we loved (and still love) is no longer there in the physical form. So we rely on all our memories to provide us with the sense of feeling and knowing they were there. I will never fully be able to understand your personal loss but I do understand the journey you are on. My dearest husband passed away on the 6th June this year after fighting for 12 months with GBM. Watching someone who had a fantastic zest of life, who left a beautiful impression with all who met him, slowly decline, muscle wastage, inability to communicate any more, loss of functions is so heart breaking. Yes.....I too know he is at peace.....no more having to fight the cancer......but it is not what I like hearing......when I venture out of the house I prepare myself to try and cope with the community.....so when someone does say something that I can respond in a way that is deemed exceptable......even when all I really want to do is cry, yell, scream.....that it is not fair.....why him. Grief is a very long slow process, where there are times you think you finally are seeing the light at the end of the tunnel and then something falls to dull the light, and we start again. Some tools for coping are, writing letters to the ones we love who have passed away, writing a dairy to tell them how you are coping, to talk to them, to talk to others, only you will know know what is best for you in dealing with this journey. Sometimes helping others go through a similar journey can help you heal while you travel on your own path. Remember to be kind to yourself, look after yourself, take all the time you need to walk this journey, as there are many others walking down a similar path who are also doing the same. ... View more

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 ... View more

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. ... View more

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 ... View more

Hello 1232michelle, In regards to the inappropriate communication, it can be one of the side effects of the tumour. The pressure on the brain from where the tumour has pushed the brain around creates differing symptoms for each person. On the 1st June last year, Pieter forgot to go to work (I was in Bris at the time for work training) and got a call from staff indicating that the bus run had not started (Pieter' job), so I rang around looking for Pieter, once I found him, informed him that it was a work day. Pieter went to work and completed the run (which should have taken 20 minutes but actually took him 40 mins). When he arrived back (completed the run) staff noticed left side of face had dropped (like a stroke) and some difficulty with words, and the staff asked Pieter to go to hospital. The staff then rang me to inform me of what had transpired. Once I got back to town I went to hospital and staff were concerned with Pieter' blood pressure (they were having trouble getting it down), the next day I took Pieter for two CT scans, but that evening the hospital had arranged for airflight to PA due to bleeding in the brain (tumour right frontal lobe with three cysts attached and one of the cysts burst). Once there we were informed that Pieter has a tumour and they will arrange tests and surgery to find out what form of tumour. Within days we found out it was a GBM. The GBM was removed and radiation along with chemo was started. At first it was the short term memory that was effected, with occassionally saying things that was inappropriate. By the time radiation and chemo had finished a second tumour on left forntal lobe had been diagnosed but due to the radiation and chemo it did not get any larger than approx 1cm. We then had chemo for 5 days once a month along with MRI every second month. In Sept last year a small blemish was spotted on MRI in left temporal lobe and by March this year that blemish is now a full blown tumour. No surgery but another 6 week round of radiation and we see the chemotherapist tomorrow and see what she can offer. In the past month we have noticed that Pieter forgets words and uses hand signs to explain what he is trying to express, but now Pieter is loosing more and more words (some words are coming out without being recognised at all). Some of the effects Pieter has gone through are, issues with bowel and bladder, loss of control of body temp, changes in food likes and dislikes, inappropriate words and or loss of words, loss of small amount of vision and hearing, along with loss sexual desire (where in some people the sexual desire goes up). Every person is different so the experiences will be different. Chemo is given as GBM has more than one type of cell involved and so it requires more than one type of treatment to do long term damage. Most GBM has about three different cells structures within the tumour and so just one form of treatment will not kill all three types of cells. People (wider community) can be petty when people with GBM behave in a manner which is not deemed socially exceptable but this is generally due to lack of information, when Pieter is in the community I let him chat but watch the people with whom he is chatting for signs of confusion or misunderstanding, then I explain what the condition is along with the symptoms and find that people are quite happy to continue conversation. Some of the things I have found to assist with obtaining control over what is happening are, asking lots of questions; getting a greater understanding of the situation; making a start on the funeral arrangements (I am dearly wishing that Pieter stays with us for awhile yet) I felt that starting this now will take pressure away for me later (as we do not always think as clearly when the ones we love have pasted away) speaking with Pieter what he would like, I have also looked at cremation jewellery (jewellery that is designed to carry a very small amount of ashes that can be worn as necklace, bracelete, some very beautiful pieces (I have put in my order, and it made me feel great that I was able to cross off an item off my list of to do). The best thing is to document what is happening with your father, enjoy all the time available, and remember it is the tumour that is effecting your father (that your father would not normally behave like this). Good luck, have a great time on holidays. ... View more