We Talk Brain Tumours

So very sorry to hear the horrors that you're going through Julie.  It's such a shame that the NHS care has gone into a bit of a dip for whatever reason.

All I can really suggest is for you to have a hunt around for other cancer charities in your area that might be able to help plug in the gaps for you (or at least to advise).

As all-emcompassing that Macmillan want to be, they can't be there 100% for everyone.

You may well find that other charities around would offer respite cover and give you more emotional support.

No respite yesterday Care Agency were phoning after speaking with mac nurse, no call, mac nurse phoned 8.00 pm to say she had spoken with care agency at 10.00 am and was surprised they had not organised respite and corrected carers, mac nurse will phone at 10.00 am today still no call from Agency, and so I wait .............................

So sorry to hear of this, Julie.  Hope that things get sorted out soon, sounds like there's a catalog of dropped communication.

If you need more action out of the care agency, then I'd give your Social Services contact a call and give them some feedback.  If the management of the care agency get a call from the SS, it usually boots them into action.

Julie! My lovely, I'm so sorry you're having this additional struggle. As if Alan's illness isn't enough for one lifetime.

I did feel at times with the Care Agency that the tail was wagging the dog and after a couple of very tense conversations with their rota person I decided I wasn't going to deal with them anymore. I found out who my contact was at the PCT and spoke to her directly instead. That soon sorted things out. The PCT employ the care agency and the PCT decide which agencies to use so it wasn't really ideal for the PCT to be hearing negative feedback. I think the Agencies get so used to dealing with frail elderly clients who basically just do as they are told that they get a little bit above themselves. It's good to remind them of the reality of their situation. You are the client and they are there to provide the service that the PCT tells them to. They don't have any authority to be telling you how many carers need to be with Alan at each visit and they certainly have no right to cancel your respite without your say so. I'd be livid.

Of course it means lots of long, tense, negative conversations with lots of different people to get it sorted. At a time when you are obviously already running on empty. But my advice is to become an absolute thorn in their side and don't let them get away with anything. I'd get on the phone to the PCT and complain about them as often as they annoy you. That should change their attitude. They'll soon learn that you're not one to be messed with. Poor you. x x

I didn't have a mac nurse Julie, I had a palliative care nurse (same thing I know). She was lovely when she came but she only came twice and I've heard neither sight nor sound of her since Tony passed. I think it's one of those areas of the NHS which isn't given much importance so the nurses are stretched to the limit and have to deal with their worst cases first. Unfortunately, I coped too well to see her more than twice obviously.

I think you're at one of the most difficult stages of the journey in terms of being a carer. You've been a slave to Alan's illness for so long and you know it isn't going to get easier. Running no empty all the time. I remember feeling so lonely and isolated. Absolutely nobody understood or appreciated the reality of it either so visitors very rarely helped in the way that you wanted them to. I'd offer them a cup of tea and then cry in the kitchen when they said 'Yes please' because, if they had half a brain, they'd see that they should be making ME tea not the other way around. And I was absolutely knackered all of the time. Woke up knackered, went to bed even more so. The kids are relying on you too because you're their Mum and you're a strong capable woman so they panic when you seem less than completely in control. So you feel that sense of responsibility too, always to be the strong one for them. But who is being strong for you? And on top of that, you've got a brain in there somewhere and the daily grind of looking after them is so boring and routine and you had to be there every second of every day. Washing in, washing out, changing beds, cleaning toilets, making breakfast, lunch, dinner, sorting drugs, sorting care, sorting sorting sorting. It was a relentless grind of the first order and there was no escape. I think I went five days once without washing or changing my clothes. Don't think I read one newspaper the whole time Tony was ill, let alone a book!! And only got to watch the TV that Tony decided we had to watch which was usually the racing. Which made me feel even more isolated from the real world.

The only comfort I can give you is that I know you will survive it. I did. We all do. That's how I know. I don't know where the strength comes from but it does come, I promise. And now, I face my new situation without any fear at all because I know that if I can get through what I've just got through and still be standing upright then I can cope with anything the world throws at me. And it will be the same for you. I promise. x x

With much love and strength.

Pam

x

So good to hear from you Pam, and you're still full of very welcome advice to all those who follow you.

Been very quiet here of late, so I'm just here to fluff the pillows and open the windows for a bit.

What a busy busy week I've had..... organising a funeral is just like organising a wedding, all the elements are the same, but with a fraction of the time in which to do it all.

MrSG's funeral will be on Wednesday, the wake is being held at the Golf club nearby.  A venue I'm sure he would approve of having been a keen golfer.

The order of service are being delivered tonight, like Pam I decided I could do a much better job myself and apply much better creative flair than those bland old things on offer from the funeral director. My place of work has a print shop and they've done a superb job for me.

I've decided on 3 hymns, a poem, a bible reading and 2 eulogy's, one from a family member and the other from his best friend. Am hoping they'll be a good turn out but it's so difficult to predict.  I'e booked a double slot at the crematorium as we're not having a church service, so plenty of time to get through everything.

Am a bit stressed that I'm still waiting for the CD with the committal music to arrive, I ordered it from Amazon with guaranteed delivery for today - and it didn't arrive, how annoyed am I?

Am stressing that I may have forgotten something, but hopefully I haven't - I just want everything to be just perfect for my special man.

Off to visit him tomorrow for the last time in the chapel of rest and taking lots of bits and pieces from the kids, can't quite believe it will be the very last time I'll see him.  I miss him so so much.

It's been very quiet on here just lately - hope everyone is coping OK.

xxxxx

Good to see that you're getting everything sorted out, Sam.  I'm sure that Wednesday will be a truely beautiful day.

It really doesn't matter if you've forgotten anything or not, or if something doesn't go strictly to plan.  This is your day, it'll be perfect.  Just try not to stress about anything.

Sam,

I will be thinking of you and your children on Wednesday. I hope your visit to MrSG brings you some comfort. My children made and drew lots of things to put in my dad's coffin (on the recommendation of the hospice counsellor) and I know it helped them.

I've never organised a funeral so have no idea how stressful it must be but try not to sorry too much. People are there to say goodbye to a man they love and to support you, no-one will notice if it isn't absolutely perfect.

Take care and stay strong, keep going.

With much love,

Naomi xx

Hi Mrs SG

Sounds like you've got everything under control. Well done. I too ordered my music from Amazon, paid £6 for next day delivery and it never came! Had to find the nearest HMV store the day before. Fortunately, it was a Beatles track so not that difficult to source. But, yes, such a stress just when you don't need it is frustrating.

I hope your visit to the Chapel of Rest goes well. I went to see Tony too and I was so glad I did. 

I was very nervous the day before the funeral and, like you, likened it to a wedding. And just like a wedding the day went so quickly and I never got to speak to all of the people that took the time to come (and they will come, you just wait and see). 

But, despite the reason behind the day, there were many laughs and smiles. We told lots of stories about him and shared lots of happy memories. It wasn't nearly as awful as I'd imagined it was going to be. 

I felt just like you just before the day of the funeral and was paranoid I'd forget something. Sitting here, ten days after the event? I wouldn't change a minute of it, not one word, flower, song, prayer, choice, nothing. Was it perfect? No. There were a few little gliches but so what? I was the only one that noticed, and everybody was very complimentary about how fitting the day was. I made sure I didn't sweat the small stuff and did my best to ensure that the focus of my conversation stayed as much as possible on Tony.

If you can't remember anything that you've forgotten Mrs SG then it's probably because there isn't anything.

Good luck. I hope it all goes well and I hope, like me, you will be able to look back on the day and smile.

Love and strength to all.

Pam

x

Julie - I hope you get things sorted with Alan's care, you don't need anything extra to worry about. Pam is right though, you WILL get through this. Hour by hour if necessary but you can do it. You will find a strength you never dreamed you had.

It's approaching the six month mark for us since dad died. I miss him so much. I wish the feeling of missing him would go away but I'm not sure it ever will. I have adapted to the sense of loss and I do all the things I ever did, I just do them without him. I worry that I will start to forget what he sounded like and smelt like etc. My children hardly mention him now and that is normal, I fully accept that. When something reminds them of him they talk about him but don't need to otherwise which is fine with me.

My mum returns after 7 weeks with my sister this week. I don't know how I feel about it. I haven't missed the responsibility of worrying about her - as bad as that sounds. She will be coming back refreshed and relaxed whereas I've had so much rubbish going on with the kids and feel like I'm running on empty. I sense some troubled times ahead, watch this space ......

Love to all,

Naomi xx