Hi everyone
I am just trying to navigate myself around the site. Still struggling, but thought I would try and make a temporary place for the WTBT folk as we are all wandering round like lost souls at the moment- don't know if this will work- but worth a shot while Mac try and resurrect the old thread
Love Ali xxx
Hello, Im sorry i cant see a reply to whole thread option so ive replied to the post above. is that right? I cant even use this forum right. Anyways.....
I’m not sure if I have introduced myself on here or not. So I shall start again, or not, who knows!
My Mum was diagnosed with a GBT IV on September 2nd.Since then she had debulking and 6 sessions of radiotherapy but was refused chemo.
I live in London and she lives in Worthing on her own. She goes to a day hospice on a Monday only and other than that I am her carer. I go down and spend Fridays eve- Sunday eve with her but I am sick with worry about her during the week. At the moment I am nearly completed on buying a flat near
her as she lives in a 1 bed bungalow. Sleeping on the floor and having no ‘space’ for the past 4 months has nearly driven me over the edge. Both of us actually. So I hope to go part time and be with her, but I can’t quit work fully as I can’t simply put, afford it. The guilt of this has me up at night.
My question is re additional care. I’m sad to report that out Macmillan nurse has not been helpful.
She has rung us 3 times since September, no support, no help, nothing. I spoke to her recently about getting a wheelchair as I didn’t know how to go about getting one and she said “Call the Red Cross. Sorry no, I don’t have any details” I understand this maybe the case but so quick and curt. I read about some of you getting home Macmillan visits and I feel so angry that Mum isn’t, that it’s never been offered or discussed. I just don’t understand. My friends think I should complain but I just don’t have the energy or the fight left in me to do so.
I just don’t know where to turn anymore. The hospice call me to ask what drugs she is on because they don’t know, they don’t know if they can help re getting mobility equipment. I’ve called the council re assisted living mobility, grab rails etc. etc. but no one has got back to me. So another round of calls is needed.
I feel drained and so alone. It’s all on me. Mum and me, all we have are each other. I just want some help and I can’t seem to find it.
How did you get yours?
Oh my God Elisat. It makes me so angry to hear of the shabby treatment that some people get. It is a postcode lottery and it is awful. I am not going to be of much use because I live in Scotland but I am sure there are others in your area who know what the sytem is down there. Give them time and they will be on here later.
Have you spoken with your GP and especially Social Services. The Red cross wheelchair option is usually a temporary option until they get a permanent one. Have you looked to see if there are any Cancer Charities in your area. Make sure you get Disability Living allowance and perhaps Carers allowance and the Blue Badge and you can claim back Road Tax. All of these things are usually fast tracked for GBM1V and your first port of call should be GP because he has to fill in half of the form. Dont be stoical..cry and be a nuisance if you have to . Tell them you cant cope because really you cant. Is your Mum mobile? How can someone with BT live on their own??? Dont despair...sometimes these things take a while to get organised. A lifetime to those on the BT train
Hugs
cathi xx
Elisat, this new style forum isn't easy and I tend to reply to the latest message, unless I want to answer someone specifically and as my memory is crap, I hit reply to that message. Either way your message is always displayed at the top so it doesn't seem to make much difference..........oh what do I know I am just as confused as the next 'headcase'.
I felt so sad and angry reading your post that basically you and your Mum have just been left to it. That is not on but again reflects other experiences of people on this thread in that care and help varies greatly depending on what hospital and area you live in. I would also imagine it also depends on the individuals involved too, some are fabulous and others, just 'doing their job'.
I hope some of the others who are further along the journey than myself can give you some more helpful information or advice.
Love & Strength to all who want or need it xxx
Pam, Your review of the day made me smile.
We had a surprise party when my dad came home from the hospice, and another one for his birthday. Both of them made him feel so happy and loved. But despite the rather large house we live in, it was a mad house! I have a 7 year old cousin, I'm often the one running around trying to keep her quiet so my dad doesn't get a headache. I think kids can be therapeutic but too much and they can be a headache. I've found she enjoys vacuuming - kids are the strangest aren't they so I can easily send her off upstairs to my bedroom to do a few of my chores for me.
Our house is the opposite of a madhouse these days - its silent, and I'm terrified of how silent it will become when my dad goes back in to the hospice in a few days - I hadn't thought of it until about half an hour when my boss asked, but he won't be coming back this time, and I don't know how I'll deal with that, I feel it will be another grieving process before the final one. But your story did make me smile, and the memories of our madhouse, and my grandparents (dads parents) chattering away unknowing that he was paying no attention made me smile.
Lots of love xx
Pam - I hope today has been a bit more settled for you both! I felt exhausted just reading about your day yesterday!
When dad was really poorly, just before he entered the hospice, mum and I learnt to be quite "curt" to people. We made it clear dad could only tolerate ten minutes' MAX company at a time and we absolutely refused to be ashamed of him. We made sure people knew in advance of their visits that dad was unable to communicate, incontinent, fitting etc and that we would not apologise for him to make them feel less uncomfortable. It sounds really harsh now that I read that back but the majority of people did respect our choices and abided by them.
The way I look at it is that this is Tony's time so try not to worry about what other people think of how you do things. If they can't respect it, they're not worth it.
Thinking of you both.
Naomi.xx
Elisat,
Gosh I'm sorry to read of the shoddy care your mum is receiving. It's so desperately unfair.
We did not see dad's Mac nurse until he was given 4-6 weeks left to live following his final MRI. Until then, we had been disappointed in the lack of support. However, upon meeting her she went out of her way to accommodate dad's needs and supporting mum. Had dad chosen to home, I feel confident he would have received excellent care from the Mac nurses.
Prior to that stage, most of dad's care was provided by the district nurse. We didn't partcularly take to her as a person but she did her job well and delivered the commode, walking frame etc.
Most of dad's care was sorted out by the specialist brain tumour at his day hospice. The very lovely nurse even set up a contact with the emergency services for every time dad fell over and mum couldn't get him back up.
I don't know what to suggest but perhaps a visit to your mum's GP (very difficult, I know, at the weekend) so they can hopefully contact social services on her behalf.
I hope things get sorted out quickly for you, you must be out of your mind with worry.
Naomi.xx
Hey Naomi
Ive just done the first round of phone calls asking Mum's friends/family not to call her before 11am as she now sleeps late and finds it hard to 'get it together' in the morning. Some of them were calling at 7am! Sadly since my phone calls no one has called Mum and she is terribly anxious that I've 'scared' people off and is annoyed with me.  Can't win.
I haven't yet discussed topics of conversation, but if peope could lay off saying the following I'd be very happy;
1. Stay positive Marie, miracles happen!
2. You can get over this Marie! You will beat it!
3.How are you now Marie? Are you symptoms worse? You dont look very well...oh yes you're definetely worse than last week.
Breaks my heart when I hear these kinds of things.
and if one person could actually USE the £80 keysafe I had fitted that would make me happiest of all :o)
Hi Guys
Just had an email from a friend of Tony's saying he can't wait to get here tomorrow to share a few beers with his old mucker. My response? Please make your own way from the station and please bring your own beer! So I'm learning everyone!! Although he has two very elderly friends coming all the way from Somerset so I am doing a casserole in the slow cooker for them. But then that's the end of it!
Our situation is slightly complicated by the fact that we've just moved away from everyone we know! Tony wants to be near his parents which is miles away from our usual network of friends so everyone has to travel so far to get here that it seems mean not to at least give them a snack. But I like the idea of leaving it all out and letting them get on with it. The people that came yesterday, although painful, did travel four hours there and back so I can't be totally critical. Well, unless I'm talking about the devil child.
Debs - you are spot on about the parents. I did actually contemplate sitting them both down and having a stern word. I will tell them not to bring him if they decide they want to come again. Not appropriate for the situation.
Elisat - oh my lovely. What an awful awful time you've had. And continue to have. It seems that you have been let down at every turn and you have given up so much of your own life to look after your Mum. Bless you.
My hubby has been given only a few months and has just come home from a hospice stay and we still haven't met one person from the palliative care team. Like Naomi we seem to get more joy from the district nurse. You will probably find that she recommends an assessment by occupational therapy too to check on your Mum's physical condition.
I find that getting things moving along and making sure the right people are talking to the right people is practically a full time job. If the GP tells me he is going to pass on information to the District Nurse I will call the District Nurse myself to make sure he has. I follow up everybody else's actions. You'd be surprised how often these things can go astray. I leave nothing to chance. It's exhausting but I find it's the only way. Easy for me as I don't work. So much harder for people who are juggling jobs too.
The system is so complex with agencies, private companies, NHS Trusts and Social Services working 'together' in a complicated mess and it is no wonder communication breaks down, especially as the NHS departments are always woefully understaffed. If you come across as being even slight efficient and together then you go straight to the bottom of the list. If you really want to get the best out of the system then you have to behave like you're on the verge of a breakdown every time you speak to somebody. Unfortunately, it's as much about playing the game as it is about getting the care your Mum deserves.
You probably know all of this already but it won't hurt to repeat it:
To give your Mum and yourself access to a whole range of benefits you will firstly need to have her disability assessed. Tony was awarded higher living disability allowance because he had GBM IV which meant that he gets weekly payments of £125 and I get £55 per week as his carer. This can only happen when she's been assessed as disabled and this needs to be done by social services. We also don't pay for road tax. As her carer you will be able to take her to all sorts of public gatherings without paying for yourself, e.g. cinema, football matches, theatre, etc.
Tony was also awarded NHS Continuing Care which means that all of his carers and equipment, etc is paid for by the NHS Primary Care Trust. If he hadn't been approved for this he would have had to go via Social Services and we would have been financially assessed and probably had to pay for it all. This may not seem important now but, as your Mum's condition changes and you find you need more care then it will become very important indeed. The discharge team at The Royal Marsden organised Tony's application as he was in hospital at the time. But if your Mum is at home then you should mention it to your GP.
All of the processes relating to these applications are fast tracked for people with terminal illnesses so shouldn't take long to sort out. It's just a pain in the proverbial getting everything going.
Good Luck Lovely. You will get there in the end. You'll be exhausted and your hair will have birds living in it, but you will get there. We all do.
Much love to you. Glad you've found us but also sorry too.
Pam
x
Hi Guys
Just had an email from a friend of Tony's saying he can't wait to get here tomorrow to share a few beers with his old mucker. My response? Please make your own way from the station and please bring your own beer! So I'm learning everyone!! Although he has two very elderly friends coming all the way from Somerset so I am doing a casserole in the slow cooker for them. But then that's the end of it!
Our situation is slightly complicated by the fact that we've just moved away from everyone we know! Tony wants to be near his parents which is miles away from our usual network of friends so everyone has to travel so far to get here that it seems mean not to at least give them a snack. But I like the idea of leaving it all out and letting them get on with it. The people that came yesterday, although painful, did travel four hours there and back so I can't be totally critical. Well, unless I'm talking about the devil child.
Debs - you are spot on about the parents. I did actually contemplate sitting them both down and having a stern word. I will tell them not to bring him if they decide they want to come again. Not appropriate for the situation.
Elisat - oh my lovely. What an awful awful time you've had. And continue to have. It seems that you have been let down at every turn and you have given up so much of your own life to look after your Mum. Bless you.
My hubby has been given only a few months and has just come home from a hospice stay and we still haven't met one person from the palliative care team. Like Naomi we seem to get more joy from the district nurse. You will probably find that she recommends an assessment by occupational therapy too to check on your Mum's physical condition.
I find that getting things moving along and making sure the right people are talking to the right people is practically a full time job. If the GP tells me he is going to pass on information to the District Nurse I will call the District Nurse myself to make sure he has. I follow up everybody else's actions. You'd be surprised how often these things can go astray. I leave nothing to chance. It's exhausting but I find it's the only way. Easy for me as I don't work. So much harder for people who are juggling jobs too.
The system is so complex with agencies, private companies, NHS Trusts and Social Services working 'together' in a complicated mess and it is no wonder communication breaks down, especially as the NHS departments are always woefully understaffed. If you come across as being even slight efficient and together then you go straight to the bottom of the list. If you really want to get the best out of the system then you have to behave like you're on the verge of a breakdown every time you speak to somebody. Unfortunately, it's as much about playing the game as it is about getting the care your Mum deserves.
You probably know all of this already but it won't hurt to repeat it:
To give your Mum and yourself access to a whole range of benefits you will firstly need to have her disability assessed. Tony was awarded higher living disability allowance because he had GBM IV which meant that he gets weekly payments of £125 and I get £55 per week as his carer. This can only happen when she's been assessed as disabled and this needs to be done by social services. We also don't pay for road tax. As her carer you will be able to take her to all sorts of public gatherings without paying for yourself, e.g. cinema, football matches, theatre, etc.
Tony was also awarded NHS Continuing Care which means that all of his carers and equipment, etc is paid for by the NHS Primary Care Trust. If he hadn't been approved for this he would have had to go via Social Services and we would have been financially assessed and probably had to pay for it all. This may not seem important now but, as your Mum's condition changes and you find you need more care then it will become very important indeed. The discharge team at The Royal Marsden organised Tony's application as he was in hospital at the time. But if your Mum is at home then you should mention it to your GP.
All of the processes relating to these applications are fast tracked for people with terminal illnesses so shouldn't take long to sort out. It's just a pain in the proverbial getting everything going.
Good Luck Lovely. You will get there in the end. You'll be exhausted and your hair will have birds living in it, but you will get there. We all do.
Much love to you. Glad you've found us but also sorry too.
Pam
x
Hi Elisat,
No idea on how you control the conversations and its really sad that they have stopped calling your mum, lets hope they restart soon.
You mac support doesnt sound very good, you could try to central help line on the website. You can contact social services at any time and ask for the emergency social work team, someone is there 24/7, expalin that you need to get your mum assessed for help and support and they should arrange a visit very quickly to talk about aids and care package. Social worker can also arrange for the DLA form to be completed for you. Don't wiat until you need something to help get as much support in place now as possible, its easier to cancel services than to start them up. There may also be a helpline service again thru SW that will provide mum with a call button just in case she ever needs someone quickly. The hospice may also help with contacting OT physios etc and should be able to arrange the wheelchair.
Good Luck with getting things sorted out
joanna x
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