Looking for some advice

  • 9 replies
  • 24 subscribers
  • 434 views

Hi, I’m new here although I have been following and reading the threads for a few weeks now and have found the information/stories of members both comforting and very informative on what has felt like a very lonely and scary journey. 

My dad’s story…he turned 70 last summer and was very fit and healthy for his age, he always has kept fit and been very independent. 

In December he had an episode when attending a football match where he got lost, could not remember where he was or why he was there and ended up in peoples gardens and trying to climb over fences/walls. He described visual flashes and disturbances during and immediately after this but still somehow managed to eventually find his car and drive home. 

Delays over Christmas meant that he did not get an appointment with a nurse at his GP’s surgery until early January and was sent for a scan, initially I believe this was a CT scan and they called him back, alone, where a nurse told him he had a brain tumour. 

He underwent a MRI and biopsy of the brain however due to the location of the mass they could only take samples for biopsy and were not able to de-bulk.

We were later given the devastating news that he had a g4 glioblastoma and whilst he indicated he did not want to discuss prognosis we have since learned from the consultant they predict12 months post diagnosis. 

He had 6 weeks of radiotherapy and whilst there had been an indication they would deliver chemo via tablet post radiotherapy, his health deteriorated so much in the last fortnight of treatment the doctors decided against this. 

Throughout treatment his physical ability declined and his memory loss/cognitive impairment seemed to decline on a daily basis, I repeatedly raised this with his medical team however it was passed off as a result of the biopsy and swelling on the brain caused by the radiotherapy. 

several days after his treatment ended he had two falls, I still do not know where exactly or how these happened as his memory was so poor by that point. That was 3 weeks ago and after being prescribed codeine for the injury caused to his ribs after one of the falls he developed pneumonia and was admitted to hospital. 

he is still in hospital now and has contracted Covid. His care since being admitted to hospital has been awful, he is completely disorientated/confused and does not know where he is. He has become incontinent, been on morphine because of extreme constipation following the codeine being given to him and is virtually bed bound. 

the list of hospital failings in my opinion is endless…he has got into other patients beds, confused, been left asleep with cups of medication in his hands, not been eating although the details are sparse as they were not keeping a good chart, been found sitting in a chair crying covered in his own urine and with a pool of urine around his feet and had two further falls. 

my dad was an extremely proud, independent man, he always looked immaculate and well groomed and I have literally watched him fade before my eyes and lose all dignity. 

I have a couple of questions I wondered if someone might be able to help with, the first is regarding prognosis, we were told 12 months post diagnosis however this seems very ‘text book’ to me and we have never been given any insight into the size of the tumour at the point it was first found or indeed since his significant decline been given any sort of altered prognosis or any further information/prediction. Some days I feel like he is slipping away before my eyes but others I think he will keep fighting. All I know is that I have already grieved the man my dad was as that person is no longer here with me owing to the cognitive impairment. Is this normal for medical staff to not make any specific predictions? I k ow there are so many variables but it just seems very clinical to be providing a prognosis the exact same as the one I found on Google at the very early stages of this awful journey. 

my second question is really around care-we have now been told that he requires 24/7 care due to mental and physical impairment and how vulnerable these both leave him, my dad lived alone and we have been told not to make any adaptions to his house as yet- I believe as the hospital staff think it would be impossible for us to care for my dad at home…my question really is, from others who have been on this journey, is it impossible? My dad has a lot of friends around him but care wise it really would be what is provided by the local authority (4x30 minute visits daily) supplemented by private care if available/affordable to us and my brother and I, who both work full time, (I am also a single parent to two children) working out some sort of rota of care/overnight stays, some people have told us this is do-able and others have said this will leave us completely broken-are there any members who have experience of caring for a loved one in this way hoody also working full time? 

I think I am actually numb at this point having spent weeks crying inconsolably and now having to navigate systems/meetings and make arrangements in a world that was completely alien to me before now. Any help or advice would be so gratefully welcomed, thank you for taking the time to read xx

  • Hi I’m new to this forum but very experienced with what you are going through, as my husband is 13 years in !!!! We have had many peaks & many many troughs. We were told a diagnosis of 5 to 7 years & he’s still here. He has not had any part of his tumour removed as he has an artery running through it. He had 6 weeks of radiotherapy. It was very much a trial at the time. I do believe the medical team don’t really know what will happen next. It is very different for each patient. The brain is very complex as we know & can heal differently in each case. It also varies to where the tumour is located. My husband’s is front right lobe. For me & my children, we tolerated a huge personality change, & it really was not nice.  Like you I cried my way through it. The tumour was a shock to us to, started earlier at 49, so quite a bit younger. I would hope for you once the radiotherapy settles down, this does take longer than you would think, but when it does you will find you will find a path through it. Don’t give up hope & accept any offers of help to make it manageable. Get though stage by stage. Don’t think to far ahead.My husband does now live in his own home, with me coming & going. Bringing meals, managing the home. He can be on his own & manage well with a bit of help. We would of struggled to be in the same home together. The personality change was worst thing for us. I’m only coming to this forum now. As only now I’m seeing yet another stage, I need to manage & that’s something I would say. Try to manage them carefully, think before you speak, give a choice if you can. Try to give them some control of any situation. They will feel out of control & will lash out verbally. This is all down to frustration. Can’t stress enough about giving choices, does not have to be big differences in what your offering, just a choice. Good luck & I wish you, your Dad & your family all the best xx

  • Hi Tlj,

    Gosh what a sad story that is to read, I'm so sorry. I looked after my wife who had a GBM. I've seen you pop up on the forum before so you've probably seen the info about what Macmillan can offer but I've put it all down below in case you haven't. 

    Like you I was desperate to know prognosis. My wife did have debulking surgery so was given 18 months to two years. In the end she made it 20 months. Towards the end there is a timeline that's been published and shared here but hopefully you are a long way from that https://www.brainhospice.org/brain-cancer-hospice-symptom-timeline. I would exercise caution with reading it as it's not quite this linear in our experience and each of those stages lasted quite a lot longer. But everyone is different and if you've already been googling about it then you'll know that once things start going downhill they can go very fast. In my wife's case after the surgery she was pretty stable for over a year but the last 3 months just brought new symptoms literally almost every day.

    I think it is normal not to see anything other than vague predictions. My wife had routine MRIs every 4 months and it was at the last one which was 3 months before she died that the consultant said there'd been significant growth and that we should prepare ourselves.

    On the care question, I cared for my wife throughout but I'm lucky that I could keep working from home right up until those last 3 months. Then as she deteriorated I had to take long term sick leave. We did try having carers during that time but as I was now a full time carer myself it didn't help. It is a very big commitment and absolutely exhausting but in my case I'm pleased I did it. The advice on prognosis from the consultant at that point was useful because what I couldn't risk was not earning money for several months or I would at least need time to plan for that if necessary.

    I wish as carer I'd had access to more information and support as there's lots you have to learn but I managed in the end and she stayed at home throughout. If it comes to it there's some Youtube videos on caring I found which were really useful I can share with you.

    I hope some of this is useful but do feel free to ask any more questions.

    Sending a hug,

    Chris

    ----------------------------------------------------------------------------

    There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

    When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

    Have you or your dad been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

    Community Champion Badge

  • Hi Tlj

    It’s so sad to see an independent man turning into this condition. Unfortunately GBM is such. I cared for my husband (52 years old) for about 22 months. 
    Based on my experience doctors don’t/can’t give exact prognosis as every person is so different but they can give you a tentative timeline based on MRI when was your dad’s last scan? My husband’s last scan was in Jan mid this year and they said he has about 2-3 months. He died in mid March. Having said this I was able to see his condition going down and another big factor is how frequently are you seeing his condition changing. Is it on monthly/weekly/daily basis? 
    Regarding care, I cared for my husband and worked full time pretty much all along. I had taken a week off here and there. My 21 year old daughter joined me in the last one month and we shared the caring. We also had carers coming in 3 times a day for about 1/2 hr each. It’s not easy caring. On Feb my husband was bedridden and was wearing incontinence pads but he wouldn’t understand. He will try to get up and go to the toilet. He had multiple falls in this process. I had to put baby monitor, sensor mats in his room as it was impossible for us to keep an eye on him 24/7. It became impossible to make him understand. Speak to your doctor and get the max benefit that is available. I was told by hospice that it is possible to get night care for few days in a week. Having said the above, they do end up sleeping a lot towards the end. 
    Amidst all this please take care of your mental and physical health. Sending lots of love, higs and positive energy. 

  • Hi Tlj

    I am so sorry to hear how badly your father is being treated in hospital. He does sound very ill.

    I am on this forum because my husband passed away due to glioblastoma but actually your account of the hospital stay was similar to my father who went in for seizure related to earky vascular dementia, he was being monitored, got Covid, then constipation from medication, sepsis, morphine then palliative care and passed away last year in June.

    I hope the doctors can properly prescribe medication for your father to make him more comfortable and others are passing practical advice on how to get hospice care

  • Thank you so much for taking the time to respond to me and sharing your experience, I am so incredibly grateful. As yet, the personality change, albeit I appreciate from my own Google research is very common, has not been obvious with my dad, he just seems resigned to the indignity his physical decline and hospital treatment has resulted in and in the rare moments where he is more responsive/his cognition is better, he is just very very tearful and says some really very dark things, his mood is just so low but I think that this is not helped by the rate of his decline. 

    I am so incredibly grateful to you for replying to me and helping others when you have so much going on yourself. Thank you xx

  • Thank you so so much for taking the time to respond to me and for sharing your story and experiences. I am so very sorry to hear about your wife’s passing, this truly is an unforgiving disease. 

    My dad was given an MRI prior to radiotherapy beginning and had one towards the end of treatment as they thought he might have had a bleed on the brain but they would not comment on the inputs ‘activity’ as they have said the full results of the radio cannot be seen until 3/4 months post treatment and any MRI’s within that time are skewed owing to swelling caused by radio. As such we have another 6-8 weeks to wait until the next scan but it is ‘comforting’ in some ways to know that there may be an update at that time as this feels like a living nightmare and as you say not knowing almost adds to that for me as I try fruitlessly to make plans/preparations for how we might be able to care for him at home and prepare as best as I can for this financially. 

    thank you for the links and also recommendations regarding you tube. I spoke to the palliative care social worker he has been referred to today and feel somewhat reassured that they will help us to make an informed choice regarding his care but also acknowledged that given his significant decline and fluctuations there will be no ‘perfect’ solution..I just hope we can make the time he has with us so much better than the indignities he has endured whilst in hospital. 

    Thank you from the bottom of my heart for taking the time to respond to me, I am incredibly grateful, 

  • Thank you so much for taking the time to reply to me and share your journey with me and others. 

    As I mentioned in my previous reply to another member, my dad had an MRI prior to radiotherapy and one during treatment (to rule out a possible bleed on the brain) however the consultant has been very firm that they would not comment on the tumours activity until a scan performed 3/4 months post radio as scans before then can be unreliable owing to swelling caused by treatment so for now it is a very miserable waiting game. 

    I have read the link shared regarding the stages of decline with a brain tumour and honestly he meets a lot of the indicators for last 4-8 weeks but based on the consultants initial prognosis he should have 6/7 months left with us. It is just so difficult since his admission to hospital especially to gauge what is a result of medication, him getting pneumonia and Covid, all I know is that he is a shadow of the man he was even 3/4 weeks ago and every day I go to see him it takes my breath away how terribly unwell, frail and defeated he looks. 

    I truly appreciate you taking the time to respond, thank you so, so much xx

  • Thank you so much for your reply. 

    Yes this does sound very similar to your father’s experience, I must say I have been incredibly disappointed with the care my dad has received whilst in hospital and indeed continue to be. In my heart I just want to get him out of there as soon as possible but I know we need to make sure all of the right support/care and details of his this will look/work need to be in place first. 

    Thank you so much for taking the time to respond and share your experience with me xxx

  • Hi Tlj,

    So much of your story resonates with our story and I am so sorry you are going through this horrible journey too.

    Mum (54) suffered prolonged headaches in July 2022 and was diagnosed with a frontal lobe gbm4 in August 2022. She too could not have debulking surgery, and opted for chemo-radiotherapy. The radio therapy was condensed into a 3 week intense course and the chemotherapy was stopped shortly after. Following this we had 2 hospital admissions, one due to a fall and the other was because I arrived one day and she had become completely incontinent, and had been sick. We didn't have the physical strength or medical ability to be able to clean/care for her at this point. She went into hospital for some respite care where they discussed care options. She lived at home with her husband who was next to useless and would go out/leave her regularly and just generally not co-operate with carers etc. 

    Long story short She was sent home with the 4 x visit carer package you mentioned. They came out and did an initial assessment and said straight away that it was impossible to meet her care needs. I then had to push and push and push some more to get the community nursing team to make a referral for hospice. We then had hospice at home for a total of 10 weeks. They were amazing. I'm not sure exactly how we got here but a fast track referral was completed for continuing healthcare, they fund care for people with a terminal diagnosis. They fully funded mum for all of her rowans care and continue to fund her now. They have certain criteria but I think it would be a good idea to approach your community nursing team/CNS for advice on this? Mum was moved into a care home in Dec 2023 where she has stayed since, it wasn't our ideal but myself and 2 siblings couldn't manage full time jobs, 2 children and full time care. The care home now manage her day to day needs, and we were able to take a step back and become her children again, we visit regularly and often just sit. 

    For context she has been fully incontinent for over a year now, her cognitive decline has been steady but noticeable each day. For example we visited tonight and she was unable to talk at all, she is completely bed bound but her symptoms vary day today depending how the tumour moves around. I'm so sorry you are having to go through this too, I completely understand when you say you are numb to it, the constant battle daily is utterly exhausting xx