Some bad news for my family


I hope no-one minds me posting this as it's not very cheerful and this is meant to be the lighter side of the forum, but I'm feeling like I need to share and am hoping some of your magic Snowy-helping goodwill might help. Please tell me if I have managed to break any forum rules and I'll take it down.

I have just heard that my dad has a brain tumour. We don't know how bad it is yet as we are waiting for the MRI results; the neurologist seems to be pretty down and is making faces about it being aggressive, but the radiologist who saw the CT scan results doesn't think it is; we will know tomorrow morning. He has had some symptoms including falling over and hitting his head, but not as many as it seems you can have and he hasn't had any seizures. I am obviously not an expert and may be deluding myself but am hoping this is a good sign.

I'll be going to stay with my parents for a week from Friday (I have my next cons appt this Thursday so can't go before then). My dad doesn't actually know he has a tumour yet, they haven't told him though I guess they will have to at some point, probably tomorrow.

Anyway, sorry if this is a bit depressing! Thanks for reading if you got this far.

105 Replies

  • Sorry to hear that. Don't think it would break any forum rules and you have a suitable title about upsetting content.

    It must be a shock to hear and hope you all know more soon. There are many types of brain lesions which aren't necessarily tumours. There are several benign tumours as well as malignant i.e. cancer and which can be more aggressive. Any brain brain tumour can cause local problems with pressure but benign ones generally don't spread. Let us know, fingers etc crossed and thinking of you

    P.S. feel free to PM if you want as may be able to explain more when you know the MRI results

  • Thanks! I have been looking on Wikipedia (possibly not the best place but can't bring myself to look any further) and was also hoping it was one of the benign slow-growing ones and not something nasty, until my mum said the neurologist didn't seem very positive. Hoping as the CT guy seemed more positive it's just a quirk of the neurologist being that sort of person.

    Will def share news when I can, am hoping to hear tomorrow before I go to work as the meeting is early. Thanks for your offer re PMing, I may take you up on that depending on how much I actually hear from my mum. At least my brother is flying out tonight so she's not alone.

  • Yeah, or nhschoices website generally more reliable. Are your parents abroad/far away if your brother's flying out? Hope you get answers at your own appt and get to see your family soon whatever news comes tomorrow.

  • Thanks. Yes, they're in Malta, not the easiest place to get to but the hospital is good apparently.

    Hoping news comes earlyish tomorrow, have to go to work!

  • Sorry to hear of your news, Philomela. Keeping fingers crossed you get some more positive news tomorrow. Sending hugs your way. xx

  • keeping fingers crossed for you and prayers for your dad.

    And hope con apt goes well for you Thursday xxxx

  • The doctors will do all they are suppose to do and then you will know what your dad may be facing. I will agree with you that you will have better signs. That you dad will stay upbeat as he is sorted.

    So I add my pratyers too.


  • praying for you philomela. your in my thoughts and prayers - ur dad and all ur family

    x x x

  • praying for you philomela. your in my thoughts and prayers - ur dad and all ur family

    x x x

  • Very sorry to hear the news Philomela. A friend's sister had a brain tumour and it was successfully removed. Let us know how things go. Thinking of you. xx

  • Sorry to hear that Philomela. Best wishes for your Dad. Keeping you in the light. xx

  • Sorry to hear that, my love & prayers with you all XXX

  • Philomena, I'm SO sorry to hear your news. It must be such a worry for you and your family and I very much hope that it turns out to be less aggressive than the consultant suggested.

    Keep us posted, and keep thinking positive - we're all with you.


  • Thank you

    Just wanted to say thank you so much to everyone who's posted or PMed for your kind words.

    I don't really know much more - my mum and brother saw the consultant this morning. Consultant is still very gloomy, my mum says you can't tell if it's her or the situation. All I know is the plan is to ask the neurosurgeon if he can 'debulk' it and then they will try radiotherapy to shrink it, but the neurosurgeon has been in theatre all day so no further news. Apparently it's 'big and entrenched' - not good.

    tbh none of this sounds great to me, as from what I've read it suggests it's malignant and possibly aggressive or they wouldn't be talking about 'trying to reduce size' and then hitting it with radiotherapy, they'd just remove it. Looking things up was a mixed blessing, as now I know that the worst form is also the most common in adults. Also now scared in case it's in a place where it can't be removed.

    Anyway, sorry not to have more cheerful news, will update as and when and thanks again.

  • lots of love and praying for you.

    Hope you soon get to see your dad after your consultant apt Thursday.

    love glynis xxxx

  • hi philomena, Sorry to hear your news and good luck with the apptment. Please keep us posted, my thoughts are with your dad at this time.

  • hi philomena, Sorry to hear your news and good luck with the apptment. Please keep us posted, my thoughts are with your dad at this time.

  • Thinking of you Philomela, having your Dad ill, and not been there with them is hard, I've been there unfortunately. I hope your appt goes well today and that you can get to be with your family as soon as you can.

    Take care xxx

  • Really sorry to hear this. It's really hard when family members are ill and you aren't there to hear what the doctors are saying, as in my experience parents often don't take in exactly what is being said or understand it. Hopefully when you get there you will get a better idea of what can be done.

  • Thanks for your messages everyone, I really appreciate it.

    Thought today would be the 'big day' when we heard from the surgeon but no, they still haven't managed to get hold of him! So tomorrow morning apparently now when they'll be seeing the consultant.

    It definitely is hard having it all filtered through my mum and my brother - I suspect my mum understands all too well which combined with the consultant being gloomy is not great, but I also don't know if they're not telling me everything because I'm here on my own and when I get there I'll know the worst. I keep wanting to ask 'what sort is it exactly?' but then I don't really because I don't actually want to know the answer. Just hoping they can at least operate, though it sounds like they don't think they can remove it all.

    And my dad still doesn't know everything so is apparently quite cheerful, but they'll have to tell him some time...amazed he hasn't guessed something is up.

  • hi this must be so hard for you and your family right now. i can understand to a degree what you are going through but its such a personal problem that differs for each person. my dad had a piturity brain tumour and i can still remember the shock mixed with 'why him'. try to stay positive for your own sake as much as for him and stay away from the net on the subject as it wont make it any easier for you. thinking of you take care x

  • Keep strong. I know it can be hard when you want to know everything but have no immediate answers.

    We are all here to vent on if you need to and think positively. xx

  • Thanks!

    In airport now waiting for flight. I have never wanted to be here less, am glad to be joining my family of course but terrified of what I will hear when I get there and how my dad will be.

    Have bought him some Godiva chocs and some books he apparently wants. My mum said he seems confused and keeps wanting to go back to work, though he always does want to get back to work so not worried about that.

  • Really not good news :(

    Well, looks like there isn't much they can do - it isn't curable. Surgery is a possibility but will not remove it, it will come back as it's aggressive. I thought there was something my family didn't want to tell me until I was here.

    At least I've seen him, he is reasonably cheerful but increasingly confused (we don't know if the steroids he's on are contributing as I have an idea from hanging round here that they aren't great for alertness), and doesn't know how bad it is. We have no idea how to tell him or whether he'll even take it in; he is still desperate to get back to work.

    Thanks again for all your messages, I really appreciate the support as obviously this is not a good time.

  • Sorry to hear this Philomena. How are you all managing with the bad news? Could they do surgery followed by chemo-radiotherapy? Steroids are probably stronger than prednisolone given to people here usually dexamethasone so could cause more problems, don't know much more than that. Sorry for asking, would he want to know much as some people don't but there may be things he wants to sort out?

  • Oh Philomena, I'm so sorry the news couldn't be better. Sending you many hugs.


  • Thanks TJ and Annista. He doesn't seem to take it in really, even when we try to prepare him and tell him some of it he forgets it, so we don't know if it's even possible let alone desirable to let him know everything.

    They may be able to debulk it and zap it with radiotherapy but it will grow back probably within months; our worry is that the surgery will just make him feel terrible afterwards or impair his function even more. As the surgeon said the tumour has already consumed some tissue and he would have to remove more; we don't want him to come out of surgery and have a few months extra but feeling awful.

    It's just gone downhill so quickly -the bleeding, apparently, but I was still hoping even just a few days ago that it wouldn't be this bad. We all have work to do which helps a little, having a distraction; my breathing is also distracting me though I'd rather it didn't! Though wish that was still my biggest concern.

  • Philomena, I don't know enough about your Dad's condition to offer any suggestions or reassurance, but from personal experience (and after many years to think about and understand it all) I think it might be a blessing in disguise that your Dad is forgetting what you tell him about his illness. When my Mum was first diagnosed with dementia we, and her GP, were very honest with her about the prognosis because we needed her to make decisions while she still could. She found the future terrifying, but within a very short while she forgot the conversation and was comfortable again. Over the next couple of years she sometimes realised what was happening to her and became very upset and fearful, but quickly forgot again. At the time I found it very distressing but I now realise that it was the best thing for her well being. It's very easy to say, but try to take some comfort in the fact that your Dad's forgetfulness is allowing him to deal with whatever is coming without too much fear for the future.

    The only reassurance I can give you is that even if his illness and the treatment leave your Dad different from the way he used to be, he'll still be your Dad, you'll still love him and he'll still love you no matter what difficulties he has to cope with.

    Have more hugs and please take some time to look after yourself too.


  • Really sorry to hear your news. Thinking of you. xx

  • Thanks Angievere.

    Annista, I think you're right that maybe it's better for him not to know - bad enough for us to know but it would be very hard for him if he were able to take it in.

    We won't have to make any decisions yet, though he wants to know whether he's having any treatment (we have told him yes he is, he's on steroids). Don't want him to say yes to the surgery because he thinks it's a cure, because of course it isn't and can't be.

  • I'm sure you and your family will support each other get through this scary time Philomena, and when you make decisions about what treatment your Dad has you'll be making them as a family and with his best interests in mind so that, however difficult, you will do what's right for him.

    Many hugs, and don't forget to look after yourself.


  • Well, at least we know the worst

    Thanks Annista and everyone else who has left messages, I really appreciate your support even though this has nothing to do with what this forum is for!

    Just having to sort things out now - looks like we will be moving him back to England so my mum has some support and has us around, as there is none here - they seem to expect family to do it all, and no-one around to advise on what to do. Hopefully if we can get him into the system (and he is a British citizen!) then it will be easier and they can advise on hospices etc.

    A lot of packing to do unfortunately given how things have been scattered around, and loads of my stuff still here. At least focusing on the practicalities stops us thinking about other things, otherwise I would be a soggy heap. Just hope I can help my mum out as I don't feel much use at the moment. I think she is relieved about the 'hyperventilation' thing (I am still frustrated and questioning - perhaps I shouldn't be but it's hard to reconcile symptoms with 'nothing at all wrong') but at least it's one less thing for her to worry about.

  • Update

    They're doing a biopsy tomorrow. We are very worried after talking to the surgeon that they're going to go ahead and do further surgery which may leave him worse off, regardless of his wishes and ours - it seems we don't have much say which makes sense I guess in case of unscrupulous relatives but the surgeon almost took him in today to debulk without telling him or us of risks/options etc - my mum had to step in, and the surgeon still has not explained to my dad that surgery is not a cure and it will come back so he may opt for it without knowing everything.

    Also she says if he's not capable she (the surgeon) can sign the consent form...this seems a bit odd.

    Anyone know of any sources of advice on this? We were already thinking PALS, Maggie's Centre, Macmillan etc for more general stuff we need to know, but don't know how much help they can give esp on the consent issue - the surgeon just isn't telling us much and it feels like they are going to do what they like.

    Sorry for rambling, this just makes everything even more difficult that it feels like none of us has any say in the treatment as my dad is not quite capable of making all the decisions himself right now (he doesn't take things in) but is very clear about what he wants and doesn't want. If that makes sense.

  • Oh Philomena, a lot's gone on in the last few weeks. Sorry I've missed your updates recently. There shouldn't be an issue moving your dad re healthcare anyway, it has been done numerous times before. It would be worth preregistering him with GP/consultant and getting all the medical records you can to bring back. You probably will be asked about where and how long he's been resident as well as citizenship. He could need a 'fitness to fly/travel' clearance.

    With consent, if someone's not capable doctors in the NHS can sign a different consent form for them. I don't know if this is different elsewhere. The sources of advice you mentioned may well be able to help with consent as well as moving back etc. The NHS choices website has more information

    It is difficult when you're not being kept informed or have a say

  • Philomena, it just seems to get more worrying for you doesn't it.

    My understanding is that if somebody is not able to completely understand the possible consequences of treatment, or lack of it, their family is able to speak for them. It may be different outside the UK but there ought to be somebody who can help you make sure that your Dad's wishes are taken into account. Forgive me, I can't remember exactly where your parents live, but is there a British Embassy or Consulate where there might be somebody who knows where to go and who to speak to?

    Thinking of you.


  • TJ and Annista, thanks so much for the support and all the information.

    I think I wasn't very clear before (not surprising) - my dad is actually back in the UK now and in hospital (a very good one) - so we have sorted all the coming back and residency stuff.

    I've looked at the NHS Choices thing - thanks! - which does make things a bit clearer though I don't know who decides if he has capacity. The problem is is that having seen what happened to my grandad (before I was born) ages ago my dad said he didn't want to end up in a state where he couldn't do all the things that he enjoys like work (he is a total workaholic) playing the piano etc, and we are worried that given where the tumour is and what surgery could do, he will end up with a little more time but time where he's unable to do anything he likes - and that is something he has said, not us.

    The problem is we're not sure he understands now that surgery wouldn't be a cure, and the surgeon has not explained this to him, so we don't want him to go ahead and opt for the surgery thinking it will give him his life back when it's possible it could make things worse - especially since radiotherapy on the brain is apparently not much fun at all and in his case would just prolong things by months.

    Hope this makes sense - it is a tricky one and not helped by the surgeon being unhelpful! My mum has been talking to the support people today I think so hope they've given her some answers about that and some worrying practical matters (such as my dad not currently having anywhere to go when they chuck him out as the new flat is not ready yet).

  • Hi!

    Jurt thought i would let you know that NO the aurgeon can not sign on his behelf unless it is a medical emergency and proven to be beneficial.

    You and your family CAN as next of kin sign on his behalf...

    You can also sit with your dads consultant and get it put into the front of your dads notes a treatment plan for him...with his wishes before he could potentially deteriorate. It can be done...working with oncology i see it happen all the time...i guess in a way it is similar to a do not resus document that you can have put in your notes but its a treatment or none treatment plan

    hope this helps


  • Thanks so much Charlie - that is very helpful, though confusing as now I wonder what the surgeon was playing at saying she'd have to sign as my mum specifically said 'don't I sign?' and the surgeon said no, and my dad was sitting right there and obviously not in need of immediate treatment!

    Treatment plan sounds helpful, would NHS Choices or somewhere have more info on that? I'm wondering if we're just not getting told the whole story about what our and my dad's rights are and it would be helpful if we could wave something under their nose and say 'but your own website says...'

    Thanks again so much for the info!

  • sorry philomena to hear your news,it must be such a worry for you and your family. i hope everything goes well for him. Please keep us posted

    lots love to you all


  • U can always seek a second opinion!

    Nhs choices may b able to help, not 100% sure with them tho! And make sure the surgeon is the person peeforming long term treatment. The surgeon normally is just the person 'using the knife' so to speak. If the cons isnt performing the op they wont get involved with surgical procedure. Make sure you get them to explain specifically what part they will play in your dads care.

    You can also request if you put in writing to see your dads notes with your mum to see their exact plans. You can do this be writing to the cons sectretary requesting to have a meeting with the cons and your dads notes. Make sure you chuck in the letter about freedom of information act as they cant refuse to let you see the notes and the docs plans. Dont read notes alone though as you prob wont be able to read writong or big medical terms.

    If you are worried at all just speak to cons or if ur worried about cons defo ask for second need to work with u not against you!!!


  • Just a thought... Your dad can also make choices for himself to, untill he is 100% mentally incapable and then it can go to next of kin or doc...thats one main reason for a next of a way the 'older' people can be treated like a child where they have a main carer / next of kin act ontheir their behalf.

  • Thanks so much Charlie, this is all massively helpful and way more than anyone at the hospital has told us! Really appreciate it.

    Hope your lungs are not too bad btw.

  • Thats worries

    unfortunatly docs fail to remember the the patient and there relatives know their bodies best!!

    I have changed cons many of times because of thier lack of care, explanation, unhelpfullness when another hosp rang them for info on me when an inpatient, and not working with me for best treatment.

    And lings doing ok, struggling a little with the deep breath but amonophylline levels are low so not getting full effect of an emergency appoint with my cons tomorrow to prevent me from going back in again within a couple of days!!!

  • I guess there r some perks for workin with the nhs eh lol

  • yeah, knowing the system must help a bit! I get lost dealing with it for myself and now for my dad. Still waiting for letter for chest physio appt, my hospital takes forever to send letters.

    Hope your cons appt goes ok and you get something sorted for staying out of Costa.

  • U can ring up the hospital swithch board, go through to ur cons sectretary and chance letter...or ask the to look in the diary to chance what is going on...i do it all the time lol

    i doesnt stress u out to much and cause u to land in costa...we all know what are bodies can do to us lol

    and im sure ill add a post of here and keep u updated tomorrow!!

  • Philomena, thank goodnes you're back in the UK. That means that what I learnt when Mum was first diagnosed can be of help you you now.

    The most important thing that I can think of is to suggest that your Dad appoints someone (your Mum and possibly other members of your family? You can have more than one.) as enduring power of attourney. This means that if is is unable to understand what's said to him or make himself understood he would have someone with a legal right to speak for him. It's not mega-expensive and it means that everyone, even difficult doctors, have to listen.

    He might find it hard to understand why you want him to appoint an enduring power of attourney, but my experience with Mum says that the best way to go about it is to be honest and say that you are worried that if his condition worsens you will not be in a position to keep him from ending up in exactly the condition he most wants to avoid.

    The other hard thing is that you probably need to have the conversation about what he wants, but as he has already made his wishes known this would probably consist of telling him your understanding of his wishes, asking him if this is still what he wants and making sure that everyone is aware of any changes.

    I'm very sure that he would understand that you are all trying to do your best for him out of love and, as with my Mum, appreciate how hard it is for you.

    Take care of yourself.


  • Philomela, you really are having a hard time :( Sorry I missed this.

    Am thinking of you and your family, positive thoughts coming your way.

  • My thoughts and prayers are with you and your family. So you get all the support you need.


  • Thanks again Gill, TS, Annista and everyone else who has left comments - I really appreciate your thoughts and help.

    Just a brief update with some 'good' news, if it can be called that: my dad now has a specialist oncology nurse, who he should have had from the start. My mum has met her and was impressed, she specialises in brain tumour patients and also thinks that there's no point in treatment if it's not going to actually help but just prolong things.

    We have also had some helpful input from a family friend whose sister is a very senior nurse; she says that no, they cannot go ahead and operate in this instance with just the surgeon's consent and actually it's possible that the surgeon shouldn't have signed the consent form for the biopsy. She thinks it's a case of the surgeon getting it all wrong and that in fact they are unlikely to override our (and my dad's) wishes.

    So not really good - I so wish we were looking at an operation with a good outcome instead - but at least, perhaps, a little less stress.

  • Philomena, it looks as if you and your family are starting to get the support you need which is brilliant.

    Take care.


  • I'm so happy to hear that you are all finally getting the support you need :)

  • Thinking of you all and glad your getting the suport you all need.Lots of love xxx

  • I am so sorry to hear about your dad. The only thing I can say is that it usually proves much more harrowing for the family than the patient

    Unfortunately the law has changed with the Mental Capacity Act and your dad will not now be able to grant an Enduring Power of Attorney. These have been replaced by a Lasting Power of Attorney which, unlike an EPA, can cover health & wellbeing as well as financial affairs, but unfortunately they are more costly for a lawyer to prepare, but still well worth doing

    the LPA would only come into effect once your dad had lost the ability to make decisions for himself, and at that stage it would have to be registered with the Office of the Public Guardian before it could be used

    Age UK has an excellent advisory leaflet about LPAs (actually all their publications are very good)

    polly x

  • Thanks everyone - and thanks Polly for the information. I will definitely go and have a look at Age UK and see what they've got.

  • Update, bit of a rant, sorry!

    Just spent the day with my family, ought to be nice but so stressful - my mum is so stressed with being a carer without any proper support and it really worries me. My dad is increasingly having 'wobbly turns' and finding it hard to get around but we are getting no help at all even though my mum and brother can hardly lift him.

    He got stuck in the shower this morning, had to call ambulance as literally could not get him out; Friday he went wobbly and had to call GP out but she was no help, said he was fine and she'd been 'expecting a lot worse' and 'only had our word for it'. Then said it was the sleep medication, even though if he doesn't have that he's up and down and neither he nor my mum get any sleep. She was contradicting the oncology nurse (and patronising my mum apparently talking about 'difficult vocabulary') - but the nurse is a specialist in this kind of case!

    Sorry for the rant, it's just really hard to know what to do as they don't seem to offer any sort of help at all and say he's fine - given that he is actually terminally ill and it's a matter of months/weeks, how much worse does it have to get before they acknowledge we might need more help and advice?

  • Oh Philomena, that GP doesn't help you all cope with the whole situation. Have you had any contact with local social services/district nurses/hospice for practical support and help? Macmillan and Marie Curie may also be useful. Is there another GP in the practice that may be better or contact with palliative care as he will need help with symptom control etc over the next few months?

  • hI, what did the support groups have to say? Did they refer you to organisations that could help? Like macmillian etc. Let me know how you get on.


  • Thanks! It's a bit confusing for me as I get it all second-hand generally - because of my job I'm often not there for appts. However I asked my mum about ringing Macmillan and she said the oncology nurse was a Macmillan one. Marie Curie ones are apparently only right at the end.

    He is seeing the hospice doctor on Tuesday so maybe they will be helpful. The GP is more of a problem as so far it's just been for emergency call-outs and that's pot luck (as I've experienced myself - you can get a great one or a rubbish one but you can't choose like you can with appts, and this one didn't seem to read his notes even though they are meant to - again something I've found for myself!) She also didn't come to see him when he got out of hospital even though apparently the GP is supposed to.

    Generally the problem just seems to be that they won't acknowledge how difficult it is for my mum or that she might actually not be able to cope with the day-to-day stuff like moving him and having to stay with him so much, even with help from us. She is ringing the oncology nurse tomorrow so I really hope she gets more advice/help rather than them saying there's nothing they can do.

  • Update

    Another one!

    Just to say apparently my dad had another fall/failing to get out of the bath this morning, had to call ambulance again and this time they took him to hospital as it was twice in 2 days. So he is back in and will then be transferred to the hospice for a bit so my mum can have a break. This is not a bad development as I think they may actually have realised how hard my mum has been finding it and may give her a bit more help now.

  • I hope your mum manages to get some rest, she certainly deserves it!

    Am thinking of you all.

  • Hope this goes some way to helping your mum and dad get the assistance they need.

    Some years ago, neighbour of ours in similar circumstances though his was from dementia. The day he couldn't get out of the bath, his wife had to call for help to get him out. If she had to go out for something, even just to hang the washing or put out the bin, she'd to lock him in the smallest bedroom to keep him safe. Eventually the docs took note and took him into hospital for respite care. This led to daily care centre picking him up from house and taking for the day. So sad that families are left to cope for so very long on their own.

    Know this isn't quite the same as your beloved dad, but truly hope that like my friend, some good comes out of respite stay.

    Take care,

    Moira x

  • Thanks TS and Moira. That is very much what was going on with my dad though thankfully for less time, shocking to hear about your neighbour though gals he got some help in the end.

    My dad is in the hospice now and is comfortable if drugged up on morphine, my mum says hospice is very good. It may not be much longer now.

  • Sending much love and peace. Holding you in the light that guides us.

  • Oh Philomena :( Glad your mum says the hospice is good. Thinking about all of you

  • Thanks! I''ve been there myself now and it is very good, as nice as you can get given the circumstances and less hospital like. And the staff are so good.

  • Still thinking of you all, Philomena, even if not posting much at the moment. Many hugs for you all.


  • Aaarghhh - can there be more bad news?

    Thanks Annista for your wishes.

    As if this weren't all bad enough, the hospice is saying he's 'stable' (yes, stable on morphine and not being able to get out of bed without a lot of help, and they told us it would be days) and can go to a nursing home at our expense. Am I completely mad in thinking that hospices are for people who are dying, need a lot of care, morphine and can't get out of bed without help?!

    The NHS right now really is not treating him well, the hospice staff have been lovely but there seem to be new regulations. Like my mum needs this on top of it all...we were just so pleased with him being in a hospice and now they are trying to throw him out?

    Sorry for the rant...just aaargghh!

  • Oh,Philomena, you must all feel rotten about this. As a really scary coincidence the exact same thing has happened to a friend of mine. Her Mum was diagnosed with cancer in May and after spending some time in hospital was sent home with lots of morphine. She deteriorated rapidly and was admitted to the local hospice where she was stabilised and sent home again with a care package that included 5 visits a day but this is proving inadequate as 24 hour care is needed. The family has obtained local authority funding so that she can go into a nursing home that will provide palliative care.

    The best thing to do is contact Social Services and ask for the paperwork that you need to complete to get funding. They'll send someone to help your Mum complete it if you ask, and this is really helpful as they will know the best way to complete the form to get the best result.

    Love and hugs to you all.


  • Thanks so much Annista for that! I will pass it on to my mum, we are trying to see if we can get him to stay but if not the nursing home funding might be very helpful and it's at least good to know there are nursing homes that can do palliative care. Though I don't know how to find them - I hope they aren't just going to tell us we can find one and not offer any help on that.

  • That sounds ridiculous!

    I hope you and your mum are coping ok, I'm thinking of you both.

  • Phew, think it *should* be ok

    Thanks Tina!

    Seems to be less danger of that happening now - that comment was from the ward sister, and my mum has now spoken to the doctor who thinks it is very unlikely they will be throwing him out. So much relief, a bit more finger-crossing (I swear they never get uncrossed these days) and a little more faith in the system which I was beginning to think was completely bust given the way he was treated before (not to mention my experience with the useless resp specialists!)

  • Crossing fingers for you and the family. Not on here much as mobile signal comes and goes where we are. Very much keeping you in mind even if not posting. E-hugs ooOOoo

  • Thanks GrannyMo.

    How is your leg doing by the way?

  • Thank you for asking. Sometimes only reminder is the bruising left from those anti-coagulant jags. On holiday at the moment. Doing less walking than normal as legs get a bit tired but still managing a fair distance.

    M xxx

  • hi,

    Hope you dad is settled and pain free with morphine xxx

    Hope he gets the support and gets to stay where he is is likes it there xxxx

    Hope you and your mum are ok and coping as much as you can xxxxx

  • Moira, glad your leg is ok and you're enjoying your holiday.

    Thanks Glynis - he is probably about as well as can be expected and the drugs seem to be working. Unfortunately he seems to have lost the ability to lip-read now and can't get hearing aid in properly (he's been partially deaf for about 5 years though hearing aids usually work fairly well), so it's very hard to communicate with him which is not easy for us or him. :(

  • Just waiting

    My dad is in a coma now. They thought the end was close on Monday but he is still hanging on - tbh the end would be welcome now, he isn't really there anymore and we are essentially living in the hospice. I think my mum could do with a break very soon.

  • I know I have msg'd you on fb, but I am really hear for you hun, if you need me just ask!, thinking about you all the time and want you to know Alex is too, so your not alone ok!

    Take care and try and rest as much as you can else I will send Alex to nag you like you nagged him!!

    Lots of hugs

    Snowy xx

  • Thanks so much Snowy, your support and Alex's (and everyone else's who has posted) means a lot. I will behave myself as I am scared of Team Nag after seeing their awesome nag powers! xx

  • Dear Philomela,

    My thoughts and prayers are with you during this very difficult time.

  • Tbinking and praying and all your family at this trying time. Hugs.

  • My thoughts and prayers are with you

  • Thinking of you.My love and hugs and prayers to you all xxx

  • My thoughts are with you and your family at this time.


  • Not much else I can say. Thoughts and prayers are with you and your family.

    Take care


  • My thoughts are with you and your family at this difficult time, take care xxx

  • Sending you many hugs and positive thoughts


  • Love and prayers.

  • Thanks so much everyone. I've escaped for an evening at home - such a relief after 4 nights in the relatives' room and one night at my mum's flat - but worried about my mum not being able to get away (or rather refusing to). Why oh why is it taking so long at this stage when he is comatose?

  • big hugs sweetie. just going to PM you now xx

    Geina xx

  • Oh Philomena,

    Thinking about you,

    Take care

  • I'm so sorry to hear this. You are in my thoughts and prayers. I worked as a chaplain on a neurosurgery floor at Wake Forest Univeristy in NC in the US. They are one of the top programs in the US and can do much more than they used to, as they have a gama knife. I have heard some really good things about the NHS so am hoping you have all these options too, as I do know the systems can have their differences too. Take care!


  • Really sorry to hear this, thinking of you.

  • Final update

    Just to let you know that my dad passed away peacefully today, with us all there.

    Thank you so much to everyone who sent messages of support and gave practical advice on how to get through this on this thread and by PM and FB. Your support is very much appreciated and did help me get through it.

    Hope everyone is breathing easy.

  • Left you a message on FB sweetheart, will tell Andrea tonight when I visit her, but please know that the msg I left was from both of us.

    Thinking of you

    Please get in touch if you need to


    Alex & Snowy

  • Really sorry to hear this, but glad he's not in pain any more and all of you were there with him.

    Hugs to you and your mum.

  • I am glad everyone was with your Dad. You take care hon.


  • Thinking of you. I know how you are feeling and Im sending virtual hugs and prayers to you xx

  • Thinking of you and your family at this sad time.My love and hugs to you and your family xxxxx

  • My thoughts and prayers are with you at this very sad and difficult time

  • Sorry bout ur dad hunnie

    He is now at peace and suffers no more :-)

    Hugs sweetheart , thinking of u n ur family

    In my prayers too xxxxxx

  • Philomena, many hugs for you and your family. You have all been through a difficult time and I'm guessing that you have very mixed emotions now. You all worked hard to see that your Dad had the care that he wanted and gave him loving support since he was diagnosed and I'm sure he wouldn't have wished for anything different. Sending positive thoughts to all.


  • Thanks so much for your further messages of support. You've all been amazing. :)

  • Hugs and sympathies to you.

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