GBM Level IV - The beginning of the end - how do you know when it's started?

Brain tumours

For people affected by brain tumours or brain cancer to get together, ask questions, share experiences and support each other

GBM Level IV - The beginning of the end - how do you know when it's started?

No. of entries: 11 | Posted on 14 Oct 2011 10:45

GBM Level IV - The beginning of the end - how do you know when it's started?

  • Hi all

    Despite an eventful week on the health front (a tooth extraction and cellulitis) we got to the end of our lovely and very romantic day out at the seaside yesterday and decided that, all in all, we’d had a great week.

    Of course we spoke too soon! Today Tony woke up a little jaded, was tired and a bit shaky. We put this down to the previous few days catching up with him.  Then he started to complain of pains in his stomach and back passage, he struggled to go to the loo and for the next few hours was restless and obviously very uncomfortable ‘down there’.  In a frantic attempt to get off his commode and onto the loo he panicked and fell over. Having no use of his left leg or arm and weighing about 117kg, I was left with no option but to call an ambulance. Whilst waiting for the ambulance he had  two seizures and banged his head on the wall! It took about half an hour in all to get him up and settled down in his chair again.

    He’s been drifting in and out of sleep all day and said today that he doesn’t know why he keeps falling asleep because he doesn’t feel at all tired. Yesterday he started complaining about a pain behind his right eye (his brain tumour is on the right side of his brain) and a couple of times he’s complained of pains in his head when he stands up. He’s also repeating things three or four times and is struggling to retain some simple pieces of information e.g., what day the builder is coming to start work on the house.  I think I have told him three times today.

    But I am the kind of person that does not like surprises. I am a pathological planner and do not function well in situations if I can't manage things in a logical, chronological and task driven way. To be honest, I have no idea whether what I am witnessing is just a bad day (as so often happens) OR the beginning of his decline.  Obviously, I would prefer the former rather than the latter – obviously I would prefer not to have to think like this at all! The prospect of him beginning his decline is so scary  and upsetting that I need to prepare for it otherwise I think I may fall apart in a pretty horrible way and I need to stay strong for the children and for his wonderful parents who are both nearly 90 and will not cope very well with it at all.

    I suppose the question that I’m taking so long to get round to is ‘When do you know? What has to happen for you to look at your loved one and say ‘It’s started. This is now palliative care rather than life extending?’.

    I have no doubt I am just having an episode of paranoia (makes a change from episodes of anger, frustration, depression, grief, resentment, semi-hysteria and exhaustion).

    Sorry for the miserable post. Being organised and planning ahead is just my way of coping.

    Love to you all. Wishing you all a peaceful night full of sweet dreams and long Saturday lie-ins. x

    Pam

    xxxx

  • Pam,

    So sorry to hear about your hubbys symptons. Firstly I would get in touch with your Macmillian nurse and get some advise from them. Unfortuantly with Brain Tumours you can't plan their journey! They hate organisation and just barge along doing their damage without any predictiable plan. I guess you know your husband and you yourself will know when things themselves are not going to improve. At the moment my husband is still tumour free and hope it stays that way but I am also a nurse and I have nursed brain tumour patients in the past, so I know how unpredictable the journey can be. You can get a lot of support from the We talk Brain Tumours  thread.http://community.macmillan.org.uk/cancer_experiences/general_cancer_discussions/f/198/p/20274/461394.aspx#461394 Lots of people are there on various stages of journeys and you will see how varied it all is.

    You take care there.

    Julie.

  • Hello Pam,

    I'd like to know the answer to your question too.

    After asking every doctor, consultant etc what the prognosis/length of time I had left I was told (four and a half years ago) that the average time I had was 5-8 years. 

    I'm not scared of death but I am scared of the time before. Like you say is this the beginning of the end?  Every time I wake up feeling exhausted, drained, can't be bothered I think... this is it. Then I have a couple of good days, it's so frustrating.

    My grand mal seizures are under control at the moment but I think that I'm starting to get small ones, when I get pins & needles or numbness, slight shakes. I get tired so quickly that I do very little. Even after a bath I need to rest.

    My husband is amazing, the 1st year he told everyone that would listen how hard it is to be a woman, who works, looks after the chikdren, cooks, cleans and does the washing & ironing! He's adapted well sometimes frustrates me because if I say I'm going to do something he will always say "go & sit down, I'll do it"  So I feel pretty useless after being the one that did it all before.

    So if you have any information on how things deteriorate please would you share them with me?

    My concentration levels have gone, must sign off here thank you, Lisa :)

  • Hello,my name's Hazel and haven't posted on these groups for a couple of months. My husband had GBM4, diagnosed almost a year ago, he died in June this year. He had debulking op and chemo and radiotherapy. Unfortunately in his case he showed no improvement with the treatment, maybe actually exacerbated his condition, seizures increased and confusion worsened. He was only 53 when he died. But what I must reiterate from previous experiences on these forums is that there are no definite paths that lead to the inevitable. There are so many different factors in every case that alter each and every one of our journeys, sure there are similarities but ultimately we are all unique and what works for A might not work for B.

    Age, general health, lifestyle, previous injuries, exposure to ?, being right or left handed, where the tumour originated in relation to any factor are just a few of the things that influence the path it takes you on.

    My husband was fit, healthy, never ill. didn't smoke, social drinker, head injury, left handed with the tumour origin on right temporal lobe. He did use one of the first mobile phones that have been questioned as a cause, but well I'm sure there are thousands who have had this and never clapped eyes on any mobile phone. No, I'm sorry this B****** of a disease is senseless as far as I can tell, is it a modern day disease....... no.

    Please don't do what i did and believe the "symptom timeline" guide from hospice guidelines, the length of time in stages leading to "the End" vary vastly and depends again on the individuals overall condition.

    I am truly sorry that you are on this nightmarish journey and know that there is support out there in many shapes and forms. I have found this site very comforting , we had great community nurses, marie curie nurses, great GPs, smashing team at our local cottage hospital, macmillan nurse who visited weekly, a head and neck support specialist and scores of friends and relatives who were there then and most continue to be there for us. Now I am finding great comfort in a web site called Merry Widows, for all genders and ages, theres also a book/guide to accompany it and would recommend you buy this at the start of widowhood. Sorry to bring all of this on you dear people, but practical advice is vital to your survival. please contact me if you would like any more feedback relating to my own experiences.

    Thinking of you all 

    Hazel xxxxx

  • Pam...I am so sorry you have joined us on this journey but glad you have found us.

    If you read my profile you will know that I reached the end of this journey in July of this year. Exactly 7 months from the day of diagnosis that changed our lives. As Hazel said...there is no exact science to this horrible disease. Mark was 55 fit non smoking left handed when he  just became" extremely tired". The tumour was on the right and inoperable. He emerged from the Biopsy without the use of his left leg and ultimately his left hand( of course he was left handed). It was so fast growing that he only had 6 sessions of RT and no Chemo. I still think that the RT only gave him an extra 3 months.

    There are many stages and some people drop down the steps very quickly and some slide down slowly. It is only when you look back that you see the signs for what they were. I remember reading the "timeline" and thinking that Mark was showing these symptoms 2 months before he actually was.

    I found some good friends on here who were there during the dark nights and days. The comfort of strangers...when I could not say what I was thinking to those close to me.

    Try to enjoy each day and fill the bucket list while you are both still able. Please P.M. me if you need to talk.

     

    Love Cathi x 

  • Hi All

    Thank you for your lovely posts. Everybody on here really is so very very lovely. It seems wrong to say it is comforting to read other people's stories but I can't think of another way to put it.

    Well, Tony has just arrived home after a very frustrating three day stay at St Thomas' hospital.

    We were in the process of reducing Tony's steroids as he'd been on 8mg for far too long and the weight gain was really upsetting him (and making pushing him in a wheelchair extremely difficult for me). The reduction was going well until we got down to 5mg and then the headaches and pain behind the eyes started. This has happened before and I'd been told last time to start increasing the steroids again until things settled. Unfortunately, Tony started to vomit and couldn't keep the tablets down so had to be taken in. Going into The Marsden which is a cancer specific hospital is bad enough but going into a general hospital and put on a general ward is just painful. I am exhausted from explaining the same things over and over and over again to a variety of nurses, doctors, pharmacists, and so on...... who have no prior experience of GBM. Of course that was once we got through the pain that is A&E where every time I spoke I was treated like a major irritation and just completely ignored. Apparently caring for Tony 24 hours a day doesn't qualify to comment on his condition.

    Well, I had never heard of a hospice timeline so of course I couldn't help myself and googled one! I do appreciate that every journey is different and everybody progresses at different rates in different ways. My main reason for asking the original question was because I was beginning to see some changes in Tony and wanted to know if this may be the start of his decline or just something that perhaps could be a drug side-effect or even something completely unrelated to his tumour (we can but hope!).

    To be terribly organised for a minute, below I have listed the symptoms that have developed over the past week or so:

    1. Extreme tiredness. Some days Tony spends more time asleep than awake and when he is awake he is barely awake if you know what I mean.

    2. Confusion - sometimes doesn't know where he is, what day it is, what time it is. He struggles to understand even the simplest of concepts. I can see on his face how hard he is working to make sense of things. Absolutely heartbreaking.

    3. Talking and thinking render him exhausted very quickly and he sometimes doesn't have the energy to get to the end of a sentence.

    4. He regained some use of his left arm and leg after his first (and only) cycle of RT in June but this is now beginning to deteriorate again and he is struggling to transition from chair to toilet/wheelchair/bed. He has fallen over once already and I had to call an ambulance to pick him up off the bathroom floor. And yet he still manages to joke with the ambulance staff and retain his dignity. He really is such a hero the way he's dealing with it.

    5. Mild toilet issues. Absolutely paranoid that he's not going to get to the loo in time and, quite honestly, sometimes he doesn't. Has woken a few times having had a little accident. So far I have managed to hide it from him. He would be mortified if he knew this was happening.

    I spoke to Tony's consultant at The Marsden and he says it sounds like the tumour has started to grow again but he won't know for certain until he does an MRI. So am trying to wait for that to happen before I start to believe the worst but it's not easy. The symptoms he is displaying are pretty much the symptoms listed on the hospice timeline under '4-6 weeks before death' but I really haven't let that upset me. I certainly haven't shared my 'research findings' with Tony and I understand that '4-6 weeks' doesn't mean a thing. I can't ignore the fact that he does have a combination of symptoms which would indicate that the end has now begun.

    On a positive note, he is home and I have him all to myself which is such a relief plus we don't have to navigate through the maze that is the NHS system for a while. I really did find it all exhausting.

    You never know we may all wake up tomorrow and find it was all just a really bad dream. Here's hoping.

    Pam

    x

     

  • Gosh ... I'm beginning to regret reading this. My lovely son was diagnosed with GBM 4 earleir this month.

    Dan lives with his girlfriend so she will be his primary carer. I'm so worried about both of them now. I too am a believer in planning etc Does anyone ( in a caring role) belong to a support group. Are there any coping strategies to help you deal with this ?

    My heart goes out to you all.

  • Hi Pam Thank you for writing what is happening to you and your husband. It has beeb helpful as My Mum has a grade 4 brain tumour. She is no longer on medication of any kind and has an MRI scan on 7th December. She sleeps moost of the day and when she is a wake she is confused as to what time of day it is. She can be a little cruel at times regarding my brother and sister and I ignor it. She also dislikes both of her daughter in laws which she is not afraid to voice her opinion. Again I ignor her and make a cup of tea. It is so hard looking after her. My husband has been a saint. BUT you have to keep smiling and carry on, as She is my Mum. she came back into my life when I was 17 years old and we are close but straighned. My step brother seams to think if she keeps exercising she will keep the tumour at bay. So she now no longer wants to talk to him and has told me to tell him what he wants to hear and not the truth. Well thats it for now.all the best to you and your Husband. Mary

  • My wife was diagnosed in FEb 2008 with Grade IV GBM. She is still with me now - stay strong

    I know a lot of people are going through a really emotional time right now and at xmas it gets worse but keep your spirits up.

    I have put a few images taken over last 4 years on a website I have showing the prep for radiotherapy and a couple from each year since.

    Hope its OK to post link here

    http://dhilton-images.co.uk/?page_id=222

  • Hi, My Mum has had her MRI scan and the tumour is still growing. Steriods are keeping her going now along with pain killers for the headaches when they arrive, also anti sickness tablets. Steriods are great as when she drops they increase her tablets and she is back with me again. I am not sure how long this can go on or what is the limit regarding dose that can be given, Just thought I'd up date you. Best wishes to you. I hope Christmas is good to you. Mary67