We Talk Brain Tumours

I had no sleep last night - no special reason, just lots of things running around constantly in my head and not letting go.  So today I'm emotional and "beyond" tired.

A UPS truck arrived today and dropped off four large boxes.  They're full of sanitary pads.

Entirely the wrong kind.

Three hundred and thirty six of them.

Pete - I'm sorry you had no sleep, everything seems a hundred times worse with no sleep. I apologise in advance if this offends you (it is not my intention) but I have this image of you surrounded with 336 sanitary pads ...... and my first reaction was to giggle! Oh lord, I hope the right kind get delivered to you tomorrow - that is one hassle you could definitely do without. Ali needs to be comfortable, make sure you give the supplier an earful tomorrow.

Thank you Liz - mum got him downstairs on his bum this morning and my husband went round after work to get him back up again but this obviously isn't a permanent solution.

Well my dad is now the proud owner of a commode! Which, by the way, my mum had to struggle for an hour to get dad in to the car today to GO AND COLLECT!!! "They" were busy so couldn't deliver one until Monday but dad wees like billy-o during the night and can no longer wee standing up cos he can't balance, if he sits down he can't get up again and he doesn't like mum helping at the moment. I'm fuming mum had to make a 25 mile round trip to go and get one. I forgot to mention yesterday - the Mac nurse was disgusted dad's oncologist didn't think it was important to address dad's possible diabetes so he is being tested for that in the hospice too. She was somewhat alarmed to watch dad drink four pints of water in the time that she was there ...

My husband saw my dad for the first time in two weeks today and was so shocked at how much worse he has become. I did warn him but nothing really prepares you for it.

The DN told mum today that the only help she will get if dad comes ouf of the hospice after his respite stay is a carer to come in twice a day to wash and dress him. Is that the norm? I am a bit disappointed as mum needs more support than that. Mum also gets the impression she will have to pay for it - is that correct too? Sorry for all the questions.

Love to all, fingers and everything else crossed for a peaceful weekend for us all.

Naomi.x

Hugs to everybody x I haven't been here for a few days-been struggling with everything and needed to try and get a few things sorted in my head. Dad's been grumpy too, which hasn't helped. Myself and my girls have been brave and kept things together when we are with him-he's now told my mum that we don't care he's dying-oh if only he knew!! Next time, I will let it all out!!!

It didn't help that my 11 y/o finally realised that her beloved Grandad is dying and was inconsolable once we got home. To top it all, I was back to work today-I'm a teaching assistant-and the last time I was there, my life was good. I had many tears, but my work mates really are a wonderful bunch and very understanding (various cancers having taking parents, esp in the last 2 years). Don't know how I'll feel when the little darlings are all in next week though!!

Pete, sorry things aren't good. I too giggled out loud of the scene you set-what a lovely husband you are x

Niaomi- lots of hugs to you. Yours is a journey I know ours will mirror and hope I can face the stages as you have done xx

Love to everybody else-a couple of days away and there's been so many posts-hope you all have a peaceful weekend x

Thank you, Tasha.  Sorry I missed you when you first posted.

Naomi.  I'm surprised that you seem to be getting less than great service both out of the oncologist and community care.  Thankfully, we had a fantastic OT in hospital who arranged everything for when Ali came home and made sure that every need was met.  We also have a great Macmillan OT who has continued that good work (and a good OT is worth everything when it comes to the mechanics of caring).

With the care workers, it might depend on the area, but we have scope to have four visits a day from 2 care workers which is funded by the social services.  I don't think that this was means tested (i earn a decent wage), but does take into consideration savings (I think if you have over £20K, then they look to the immediate family to contribute to the care workers).  But, this is something you have to discuss with your local Mac Nurse (who appears to be saying all the right things).

I have all the boxes of pads piled up high in the hallway, ready for the disctrict nurse to walk into tomorrow morning.

Pete!! Now I have visions of the DN getting a face full of sanitary pads hahaha!! God I'm childish .... but I must thank you for making me laugh, much needed!

Thank you for your help with the care problems mum is having. When dad couldn't get down the stairs this morning she left a message at 8.30am and it was lunchtime before they got back to her. It isn't good enough, mum isn't able to give dad the proper support he needs while she's stressing about everything else. Like mum says, she is perfectly able to wash and dress him (and, in fact, wants to) twice a day, she would just appreciate a couple of hours' break once a week so she can go shopping. I think we were both under the impression she would be entitled to that. Mum and dad are both retired - dad took early retirement at 55 and thank God he did now - but they have decent savings. I think I shall talk to the Mac nurse to see how to go about things.

I'm still a bit peeved about the commode thing though. We've even borrowed a wheelchair from a family friend cos the DN hasn't acted on that request either. Sigh ... It took her a week to get him his walking frame but that was obsolete after a day as it is no longer enough for him.

That's enough whingeing for me for one night. Keep going everyone.

Naomi.x

Tasha - my heart goes out to you. I have an 11 year old daughter as well (just about to start secondary school, terrible timing) and she has struggled throughout to comprehend dad's illness. She is a bright girl and actually now she is ready for him to go because she can see how poorly he is. My husband and I decided today that we will no longer allow the children to see dad. He can't communicate and is prone to outbursts of some pretty impressive swear words but besides that, if dad was well I know he wouldn't want the children to see him how he is now.

My dad was also really grumpy at the beginning of his journey. It's the loss of control they suffer with. I cannot begin to imagine how they feel. He may feel a bit more proactive when his treatment gets underway. Keep going hun.xxx

Hi all

have been trying to keep up but its so difficult.  Firstly to all those that have joined - welcome, the worst club you will ever join but hopefully the most supportive.

Pete, you are a star, good luck with the sanitary pads, my guess is you will get more delivered but never get the incorrect ones collected.

Naomi - I dont know if your mum/dad has a social worker but if not contact social soervices and ask for one.  They should then arrange for whatever support mum needs tobe put in place.  yes, it will be means tested but they will only take dads income into consideration so if he gets DLA that isnt counted but pension or incapacity is counted plus any savings.  If mum and dad have joint savings then only 50% of savings are considered, its not a pleasant process but I have to say the support we received was worth much much more that the £25 per week Paul had to pay!!!!!!!!!!!!!!!

I have just completed my first week back at work, I felt so tired when I finished this evening and although it hasnt been easy i feel proud that I managed it.

love and hugs to all 

Martyn - if you are reading hope you and Doreen OK, you aare missed xx

Joanna xxx

Had 6 weeks off work and first day back today. Got a call from hospital at 11.50 to say it was vital that I attended to speak to Gs surgeon.  As u can imagine I was a wreck but G was the same, weak and not lucid. What had happened is because of the growth outside of his brain which I've mentioned earlier they had performed mri scan and results show massive growth with the pressure forcing fluid outside of the brain cavity. If G manages to fight over the weekend they are going to try to get him into hospice next week. Advised to speak with our 13 yr old to tell her dad is close to death so that will come tomorrow cos not long back from hospital and a friend had her tonight. Life#s such a bitch she's due back at school and how can I throw this at her? Mac nurse said to tell her that they had done all they can to stop her dads tumour growing but they couldn't do any more and that dad had precious time left and was going to die. The last conversation u want to have with your child but mac nurse says if I leave it she could be upset cos I wasn't open with her. The mac nurse is great and I will go with what she says. So so sad and upset tonight. Knew it was coming but so hard and unfair.  Why does such a good decent fantastic dad have to go?  

Joanna - well done on returning to work. Must have taken a supreme will and effort but the sense of achievement must be great. Paul would be so proud of you.

No I don't think mum has a social worker (at least she's never mentioned one to me amongst the OT, physio, DN, Mac nurse etc). Should I speak to the Mac Nurse to arrange one? Sorry for all the questions, it's not easy for you to talk about I'm sure.

Many thanks.

Naomi.xx

Kerry - I am so sorry to read your post. I cannot begin to imagine how you have that conversation with your daughter. I have a 13 year old daughter and it is a difficult enough age anyway. I am sure she will surprise you with how mature and brave she is about it all (after the inevitable tears and anger of course). She has watched her dad suffer and will know that it is cruel for him to suffer any longer. I hope her school has good pastoral care support. It may well be that she wishes to return to school quickly, my daughter's friend lost his father suddenly to a road accident last year and it was school that kept him distracted and gave him space to grieve without fear of upsetting his mum. You have both done a brilliant job in raising her and she sounds like a cracking kid.

I wish for your family a peaceful and calm weekend. I hope you have time to say all you need to say and that if G has had enough and is ready to leave, his time to say goodbye is how he would have wanted it.

My heart goes out to you sweetheart, sending you lots and lots of love.

Naomi.xx