GBM Brain Tumors

[rarsie]

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

[Hammy]

Hi Rasie Sorry I haven't been on for a while but have been flat out with work etc.. Have just spent the last week trying to get the house in order been on somewhat an emotional journey decluttering. Rich is doing really well we have another MRI on Friday so needless to say the nerves are beginning to kick in but we only see the oncologist on the 16th for the results. I have moments where I think they have it wrong and that we are in a bad movie then he goes and does something to make me realise its not a movie... How is your son going hope all is well and that his MRI came back clear. Take care speak soon xoxo

[rarsie]

Hi Hammy, Thanks for getting back to me, my son goes for his MRI this friday also but we get the results that afternoon so is better than waiting like you. I have to agree that sometimes you think... Na they have this wrong, nothing wrong with him, yes and the nerves kick in dont they silly thoughts at nite and so on. We go to the PA in Brisbane which is a 10 hour drive from Charleville where we live but we are fortunate that Q Health provide flights for my son and I. You are doing a great job still working it must be very hard for you. Fingers crossed for Friday Cheers Sandra

[femme]

Hi Rarsie & hammy, Hope the results come back good, my daughter is also due on the 17th August for her MRI at the pa in Brisbane, we then get results same day when we attend the brain clinic. Like I have posted before, she is nearing her 7th year of survival with GBM aftewr been diagnosed back in Ja. 2006 and was told prognosis was 3/9 months survival. We never ever excepted that as no person is the same, her positive outlook on life and seen her battleher braincancewr and to date she is doing great. cheers femme

[Rain_76]

Hi Hammy, things are not going so well, he has started to sleep more and a few accidents with wetting the bed etc, Carolien has been a great assets to get advice from, she is such a strong person to help others. They think the cancer has spread through his body, I think it is the back tumor near the spine and he has black motions, found out it is old blood, maybe a ulcer in the stomach, I have a nurse come around to check on him and our doctor will be home from holidays tomorrow, I am starting to panic inside about things, but will stay strong for him, how things have changed in one week. Hope everything is positive in your corner, not everyone gets bad news, stay strong, lorraine.

[Hammy]

Hi Lorraine So sorry to hear things are getting worse for you I think of you often and was wondering when you will next be down in Perth if I could come meet up with you. The black motions is definitely old blood which can be from an ulcer normally higher up in the intestine. God GMB is bad enough without any other cancer coming into the picture. How is he holding up with all the changes that are happening or is he not aware of the accidents etc. I was talking to my sister the other day and she turned around to me and said I feel for you, you have been in hell for nearly a year Rich had his seizure August last year. I sat there for a bit and said that I also thought I had been in hell for a long time but the longer this is going on the more I am realising I haven't even seen hell yet. I can so understand the panic you must be feeling cause I feel it and in all honesty Richard is doing great and apart from sleeping more etc he is brilliant. Lorraine just remember to take everything one day at a time and when that gets to hard one hour a time. I hope with the Doc returing tomorrow you get some help and direction as to what is happening. Am so glad you have been in contact with Carolien I think until someone has been through what we are all going through no one can totally understand and she has been there and has found the resources to share which are specific to GMB it is soo good to have the support amongst us, please know if there is anything I can do to help you jusst have to ask. I haven't been on the site for ages I am in my last year at uni and have just had a month of full time prac plus I have had my job so basically have been working 6/7 days a week. Last week I decided I need to get my life in order and I need to take control of the things I can control what a mistake that was I went on a decluttering mission which turned out to be a very emotional journey and has left me empty, which is a feeling which is beginning to feel normal to me. (Sorry am rambling) Rich has another MRI on Frid but we only see oncologist on 16th for the results. Let me know what the Doc advises etc and if you do have to come down this way please let me know. Thoughts and prayers are with you both, speak soon Luv Kim xoxo

[Hammy]

Hi Lorraine So sorry to hear things are getting worse for you I think of you often and was wondering when you will next be down in Perth if I could come meet up with you. The black motions is definitely old blood which can be from an ulcer normally higher up in the intestine. God GMB is bad enough without any other cancer coming into the picture. How is he holding up with all the changes that are happening or is he not aware of the accidents etc. I was talking to my sister the other day and she turned around to me and said I feel for you, you have been in hell for nearly a year Rich had his seizure August last year. I sat there for a bit and said that I also thought I had been in hell for a long time but the longer this is going on the more I am realising I haven't even seen hell yet. I can so understand the panic you must be feeling cause I feel it and in all honesty Richard is doing great and apart from sleeping more etc he is brilliant. Lorraine just remember to take everything one day at a time and when that gets to hard one hour a time. I hope with the Doc returing tomorrow you get some help and direction as to what is happening. Am so glad you have been in contact with Carolien I think until someone has been through what we are all going through no one can totally understand and she has been there and has found the resources to share which are specific to GMB it is soo good to have the support amongst us, please know if there is anything I can do to help you jusst have to ask. I haven't been on the site for ages I am in my last year at uni and have just had a month of full time prac plus I have had my job so basically have been working 6/7 days a week. Last week I decided I need to get my life in order and I need to take control of the things I can control what a mistake that was I went on a decluttering mission which turned out to be a very emotional journey and has left me empty, which is a feeling which is beginning to feel normal to me. (Sorry am rambling) Rich has another MRI on Frid but we only see oncologist on 16th for the results. Let me know what the Doc advises etc and if you do have to come down this way please let me know. Thoughts and prayers are with you both, speak soon Luv Kim xoxo

[Hammy]

Hi Femme/Rarsie I totally agree with you about the postive outlook and boy are we working hard on that and reading about your daughter does give us hope and something to hang onto. Lots of prayers going out for everyone's MRI's to come back positive again. You are so lucky to get your results the same day the waiting makes it worse but on the other hand not much we can do about it, just have to keep the mind focused on the good things. Sandra please post how things go for you on Friday, I thinking of you all xoxo

[Hammy]

Hi Carolien I havent' been on the site for sometime but you have been in my thoughts and I was just wanting to check in to see how you are doing and how you are coping on your own and adjusting to life. xoxo

[Groenevelt68]

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