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Final stages of glioblastoma multiforme, both parents cancer

Angelab01
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I lost my father to cancer on 3rd June, he had a glioblastoma multiforme stage IV, not a lot is posted about the final stages of this Cancer. And I know people  ask this but not a lot written. My Dad was diagnosed with GBM on the 7th April 2016, his neurosurgeon advised he had 3-6months to live, oral chemo was offered but only gave hope that my dad would survive a month or few weeks longer. If you have a loved one with this cancer, I want you to know, it's not easy to watch. But for the most part, my dad had no idea what was going on, he recognised family, but would get very confused and agitated as to why he was in hospital. The last week of his life, he lost the ability to swallow food, move his body, talk and lost sight in his right eye. As horrible as it sounds and awful to watch, my Dad was not in pain. The silver lining of GBM, is that it very rarely causes pain, he began to sleep a lot. When he could no longer swallow his medication, my family decided to put him on a syringe driver of madazalam and morphine, he was in a comatose state, but at peace. He could hear people talking to him and would faintly smile at funny stories from the past. I'm not going to lie, it's horrible to witness, but the only silver lining that kept me going was, my dad had no idea what was going on, was mainly 'high' on drugs and most importantly, he was not in pain. I took just about all my being to get through his illness and death, the grief does get easier, I promise, but allow yourself to cry and grieve.

 

fast forward 8 weeks, my mum has been diagnosed with secondary bowel cancer. It's spread to her liver, we're currently awaiting the MDT meeting outcome. We have been told that surgery and chemo may keep her cancer 'under control' but may not necessarily cure it completely. The bowel cancer has most definitely been confirmed, however, on the ct scan, showed spots in her liver, we are waiting on a liver MRI. It feels a lot like deja vu, I'm finding it almost impossible to remain positive, I have faith that treatment will help, but I'm mentally not ready to do this again.

 

I don't feel like I can help myself get through this, but hopefully my post may help others.

 

for anyone who is living with cancer or has a loved one with Cancer, stay strong

  • Offline in reply to Rabbat

    My dad has been in hospital since Dec 31st. At one point he could not eat, swallowing was a problem slept most of the day and could not talk. Dr. Said he believes he is in his last months of life. That was last week, they upped his steroids and now is back eating,talking, and walking with his walker. When he went in on dec he was same way and they gave him steroids and same thing back on his feet, but once they reduced the steroids he is back to bed and lifeless. It's so hard to watch. Dr. Also said he has lymphoma that is spreading. 

    He was diagnosed aug. 2016 

  • Offline in reply to jehowell91
    Hi My mum was diagnosed with GBM july 2014 aged 59. They said she would have 5 years maximum. She had surgery and was quite well after that. She took steroids and they helped a lot. She managed to do a lot of travelling, had radiotherapy (lost part of her hair) and was managing her symptoms, not a lot of pain, she managed to live pretty well for almost a year after that. She also had chemo but it didn't do anything it was just a bit of a waste of time in my opinion. A year after she was diagnosed she started to have seizures and her health deteriorated from there. In october 2015 she was still up and about and well, she walked 3 miles with us one day. In november 2015 she had a series of seizures and they took her into the hospice and told us that was the end. She woke up after a few days, she was unconscious for about 3 days. She came home after about a week and a half in the hospice but by now she was starting to have trouble walking and her ankles were swelling. She would sleep and eat a lot (because of the steroids) and she would also hallucinate colours and patterns. She was taking a lot of meds at this point (clonazepam for seizures, morphine for pain, steroids for swelling, she also took canabinoid oil) she went back in the hospice in january 2016 and was there about 2 weeks before she died 5 feb 2016. She was quite lucid in the hospital, she was conscious up to two days before she died. The hospice called us to let us know her death was imminent. It wasn't pretty i will be honest- she had the 'death rattle' where mucous builds up in the throat but she certainly was unconscious and didn't know about anything, I believe it was a painless and peaceful death. I searched so much for info because I wanted to know everything but every case is different, it depends on the age and health of the person, dont believe everything that you read. We expected her death but it still felt like a train hit us when she died. It was hard, it still is. But the 18 months she lived after her diagnosis were the happiest of my life, we laughed, cried, had wonderful conversations, travelled, spent time together. We just tried to make it the best time possible and it was.
  • Offline in reply to nickpd10
    Hi there , I am new to the forum. I have had my neighbor pass away from this type of cancer , he was diagnosed in November ‘16 and my February ‘18 he pass away . The first thing they did was operation, then chimo and steroids. The first few months looked great the hebstarted to decline by summer , bit by bit started to talk with difficulty, the right hand stared to be hard to use it then right foot then left hand and left foot . By November he couldn’t walk anymore and by xmass couldn’t talk anymore. Is very sad , he wasn’t in pain but he lost a hhis ability to talk . The last weeks he had breathing difficulties ambulances was almost every week 2/4 times and hospital then back home . He didn’t recover , last time he went to hospital for few days and then he pass away suddenly his heart just stopped when his family thought was sleeping ... It is very hard but is important to talk with as much as you can any wishes any thing he /she may want to say .... My neighbour didn’t had the chance to ask her husband anything else she didn’t though will dies so soon . Test was looking good each time , docs didn’t prepare her for the worst , she had an massive shock when he pass away . Is important to spend and talk as you don’t know when th speech will get difficult to communicate and it is very painful to wach . She is strong but she wish could ask him something.... He was aware and fine but with low blood pressure, sh didn’t had a thought he will die .... Is sad .. I wish everyone to be strong !!!!
  • Offline in reply to lp
    Hi, My daughter has had a grade 4 glioblastoma removed and waiting for her treatment to start. She is 48 and wants to travel, was your mother able to fly to other countries? How long after treatment was she well enough to go on holiday? How was she whilst having her treatment,? My daughter lives an hour drive from me and I would really like to have her live closer. Do you think based on your mum that my daughter will be well enough to work after her treatment? Sorry for pounding you with questions but I'm looking to do whatever I can to make her life easier and more comfortable. xx
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    My wife was diagnosed with glioblastoma grade IV in May 2017. She had brain surgery followed by radiation and temozolomide. She was alright and appeared normal during next two three months, but vomitting, headaches and loss of balance started and in less then 6 months had to go for a second surgery in Nov 2017. Dr prescribed dose dense chemo (3 weeks on 1 week off) and she has completed 8 cycles of temozolomide. Now again problems like heaviness in brain and loss of balance have started. MRI revealed enhancement in size of tumour and edima.

    Thus even after two surgeries, radio and chemo therapy there has been no improvement.

    My wife is 47 and she was very active and lively woman who took care of the family. We were happy family and carefree because of her. This cancer came as a shock and changed our lives completely. She is still postive and says that she will be alright by the year end.

    We know the situation. Oncologist has stopped oral chemo and suggested fortnightly Avastin injections. We will go for it. Life is short and this is an attemt to prolong it. We can not stop treatment knowing well the side effects. We never tell her all this since it will have negetive effect on her will power and hope that she will be alright by the year end.

  • Offline

    My husband was diagnosed with glioblastoma multform in April 2018. He died in August 2018.  I spent every day all day with him.  He never came home because he has constant nausea and dry heaves.  He was stage 4 when dianosed.  His cancer was inoperable.  He had half the radiation and half the chemo.  He could not walk.  he could not talk although his brain wanted to talk he could not get the words out. he came home only when he was under hospice. He celebrated his 66 birthday in the hospital. He was a healthly active stong individjual.  I had just retired and we expected to spend the next 20years in retirement happiness.  How does one cope? life is not fair.  How is it that cancer treatments and research are ongoing for so many other  cancers but this one is a death sentence. He knew he was going to die.   We all did.  I miss him.  The symptoms were fast and furious, but maybe we just did not recongnize them soon enough.  Thought we were just getting old and forgetful.  Not so.  What he had was deep in his brain.,  Why do you see others with the same cancer get treatmet, walk around, for a while and then disappear.   He never walked.  This think was deep in his brain and his cerebellum.   Donate and get involved to help cure this death sentence.  It just is not fair.............................M

  • Offline in reply to aikmarli

    Hi, we lost our dad very suddenly July 2017 my mum and dad had been togther for 60 years. Mum was upset but not at all like we expected, she started saying and doing weird things and we along with her doctor thought she was having a breakdown. One evening she could not walk or talk so we called an ambulance where in hospital they found a GMB 4. At the end of September 2017 she had it removed followed by radiotherapy and chemo. she remained well but not really the same mum as before until a mri in September2018 showed a reaccurance. Sje was put on more chemo but we have now been told she only has a matter of weeks left to live and probably wont make christmas. Somedays its like our old mum again and others a different person. I cant believe I am going to lose both my parents within 18 months. Life is just so cruel. My only comfort is mum is in no pain and I am thankful for our borrowed time we have had with her and knowing she will be back with her soul mate. How we will cope I dont know as we will be grieving 2 parents. 

  • Offline

    Thankyou for sharing your thoughts, from someone in it as we speakx

     

  • Offline in reply to lp

    My son passed away on the 29th of July 2016 glioblastoma multiforme and his death sounds so similar to your mums. I’m so sorry for your loss. I feel there is no information for the people going through it about what happens at the end. It was horrific. 

    Thank you so much for posting 

     

    Dawn

  • Offline in reply to Rabbat

    My dad has today been told he has an extensive left temporal lobe glioblastoma. He has not been offered treatment and has been told to enjoy his family. They told us to expect a rapid decline, and that he should be relatively pain free throughout. His time is limited, how limited I don’t know, but I know it’s not long.

    i have had time for this to sink in as we were told it was suspected at Christmas when he was taken to hospital with a suspected stroke, but turned out to be this.

    I have read so much on the internet and I understand what he has, but at the moment he is doing ok. He has been on steroids since Christmas which have improved his speech somewhat. He went for his pint today and enjoyed it. I just don’t know what to expect in terms of him declining, in what way, how rapid do they mean??? This is so difficult especially when right now he appears ok, well ok as can be I guess.

    i think he understands that he has a limited time left but I don’t think he understands the actual implications of it, but maybe that’s for the best.

    i am heartbroken for him, I worry what he must be thinking and everyone is trying to be as normal as they can around him but answering questions when he asks.

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