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 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
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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.
