Snazy

Well that's a glimmer of hope there, good stuff.
Hope all goes well for her and your family.

Chip

Snazy,

Hope all goes well and you get to have a good xmas.

Same goes to Lee and RRH both of whom have loved ones who are suffering.

My wife Sue has now finished both chemo and radio therapy treatment after having major surgery in April of this year so I know how hard it is coping with this horrible disease. Sometimes you just cannot see any light at the end of the tunnel but you do find ways of coping with it.

We still have a way to go yet but hopefully for us the future will be good and we are keeping a positive mind.

Thanks to all those who have PM'd us with advice and good wishes these past few months. Its nice to know people care even though you have never met most of them.

Merry Xmas to you all.

Chip

Snazy

Cheers Chip.
I totally agree, there are some great people out there, and a whole network of support, sometimes from the most surprising places, like SN.

My thoughts are with anyone coping with anything like this, be it the person who is ill or their families, it is a terrible strain.

Glad to hear things have gone well in your case mate, and wish you well for the future.

Snazy

Well looks like all that hoping and asking worked.
Got a call from the hospital a bit over an hour ago to say mum was good to come home.

Have spent the past 30 mins trying to settle her in, and see how all the aids put in place will work.
Already the motorised rising chair is pointless, the bath lift is unusable, the link line alarm ties her down......... Im sure more will be judged soon lol.

Main thing is she is home, now to make it all work. I'm stressed already lol.

nick172sport

iTrader: (6)

snazy made up for you that your mums home

Chip

Snazy

Cheers guys, it's a steep learning curve from here on in. Seeing what she can and can't do for herself. Wha aids I can convince her to use. Care worker didn't show this morning so that's not a great start. Although to be honest the care worker coming in is more of a dread to me at the moment, fuss with the dogs etc, all yet to be worked out.

Found mum this morning with a huge bag of tablets from the hospital, confused as heck as to what she was meant to be taking, so I have confiscated them for now, and worked out her regime. Hoping St Chris's will be round later to double check it all, and get anything we are low on ordered.

For now I have done the morning thing breakfast so she can take meds, papers etc. Now I just have to see what she wants and can do for the rest of the day. Rather tired at the moment, so just letting her rest, but seems t have slept well last night on the new bed.

Just got to try and switch her dependency on me and my sister to the care team now. At the meeting mum just kept saying my sister or me could do anything they asked her about, but social services want the line drawn somewhere so no one gets worn out or too stressed. Which is sensible. I will of course do all I can.

She has an appointment to see the audiology team for a new hearing aid, but that's not til the new year now, which is a pain also. It appears the slightly loopy woman in the bed opposite may have swiped mums old hearing aid yesterday, (it was broken but not the point) so now she has nothing. So that's gonna make Xmas day interesting to sa the least.

So that's us for now, just thought I would check in and update thanks for all the kind wishes, hope anyone else going through this has a smooth time, as smooth as possible eh.

mart360

You Too

crack open a tinnie, and put your feet up

have a good one

Mart

Snazy

lol crack open a tinnie indeed, I wish eh.
na, non drinker here, although I might start drinking on Xmas day, just to drown everything out.

nick172sport

iTrader: (6)

had tu run my mum to christies yesterday chest infection and another blood transfusion spent 6 hours there she still in hopefully she will be realeased tommorow

The Dogs B******s

Might do that myself,the wifes dad died last Sunday after a very short illness,he was only 62

nick172sport

iTrader: (6)

so sorry tu here that mate give my condolences off me and alyson to joanne your missus

prodriverules

iTrader: (52)

Very sorry to hear that Neil

Snazy

Fingers crossed for your mum mate, sounds like a tough time right now. Hang on in there all. Hope she is home very soon.

Sorry to hear your news. Short, long, there is no duration right to lose someone after. Condolences to yourself and the family.

Me, I will be avoiding Xmas all together as usual. Have already spoken to mum about it, and she understands. I avoid it every year, and am not about to start being two faced and making a big deal of it, just because it might be mums last. (might sound selfish, but she gets it) I will share dinner with the family, then go back to doing my own thing.

Carers started at the house today, and mum seems to get on ok with them, which is positive. So they will be round twice a day to help with the intimate stuff, and to give me a break.
After complaining how ill her 2nd youngest daughter is for the past 24 hours, my sister thought it would be a great idea to bring her, and the rest of the family over for an exhausting 3 hour ordeal for mum today. God help mum tomorrow when they come over for dinner, all six of them. Illness, and how tired mum is dont seem to phase my sister who has her heart set on making mums Xmas special.
Special spending the whole of New Years in hospital with a chest infection or flu..... sounds great doesnt it!

Anyway, mum is in a good place and mood right now. Just had a long chat about her wishes when she is gone, the whole Xmas thing, and how she feels about the treatment, carers and her sister being ill. So its nice to have mum back on her normal level. My mind rests a little easier at times like this.

So, dreading tomorrow, early start, get out the house, return for dinner, then escape again.

Whatever you are all doing tomorrow, enjoy it, and take care of yourselves and your loved ones

mart360

You too Michael


Mart

Chip

Yeah and you as well Michael. Cheers!

Chip

Snazy

Thanks guys.
Slow start to the day, mum worn out from yesterday with everyone coming around and staying so long.
Carer was late showing up today, but got mum washed and dressed.

Have tried telling my sister that mum is very tired today and has not got out of bed, wor out from her visit yesterday. Mum also was not aware it was Xmas day today.
Her response was, I guess we have to expect that. Rather than, I will pop round and wont stay too long, as I hoped she might say.

So the plan is they will show up around 1, make a mess, stay for ages, then leave with no regard to anyone elses wishes.
Hurry up and go away Xmas!

Snazy

Well this is fun. Sister and the kids been her 2 and a half hours, no sign of dinner yet, and mum getting tired.
Sister did actually say she realised mum would get tired quickly and would not stay too long. Looks like a minimum of a couple of hours more yet. Dread to think how long a long time would have been.

Still, mum is in good spirits, so that's what counts eh.

Snazy

Quick question for those more in the know than me on the subject.
Mum had five doses of radiotherapy on her brain, last one being on the 23rd of Dec. Having looked into the whole hair loss thing, I was under the impression that it would start during the treatment. However she said today her hair is falling out.

When I asked her how much, she said 3-4 hairs, which t me is prob non related, but I want to try and be as sure as I can, so I can plan ahead for if it is due to the treatment.

So really, I just wanted to know from anyone who has had, or is close to someone who had radiotherapy, when any hairless experienced occured.

Thanks

Lee247

Happy new year, Snazy
My Sis in Law, Mum and friends husband did not lose any hair when they had radio.
Not sure if there are different types but my friends hubby had radio on his brain on 2 different occassions and never lost his hair.

Chip

Michael,

Some useful info here.

http://www.cancerhelp.org.uk/about-c...-and-hair-loss

Hope you manged to get through xmas ok. Happy new year to you.

Chip

Snazy

Cheers Lee
thanks Chip, had found that and had a read but it was not clear if it was only during that hair loss occurred, or possible for some time afterwards.
I think she is in the clear personally, but she has convinced herself she will lose her hair. Even though all things say, hair loss is localised to the treatment area.

Xmas was very quiet, sister came around ill and stayed for about 7 hours (her idea of popping round), got dinner out of the way and been business as usual since.
Days are quite long and tiring for me and mum right now, so not in the mood for much more.
The nurse from the hospice has referred me for some time with their counsellor as she feels I would benefit from it. In the meantime I have managed to get mum to use her bath lift now, but on the down side she is hell bent on getting rid of the carer and still not grasping how much of a help the carer can be.

Leslie

Nothing seems to get much easier for you Snazy. Your mum does not seem easy to keep up with as far as her care is concerned and your sister is like a weight on your shoulders.

I think it is a good thing that you have a chat with the counsellor, they can be very helpful, they helped Mrs Leslie when she had a hard time coping with her mum.

Hope it all smooths out a bit for you, you need a break.

Les

Snazy

Cheers Les, it's not all doom and gloom, could be a lot worse I guess. It's the ever changing requirements and interest levels I find hardest to keep up with. One day mum is moaning about food from certain shops, the next day she wants more as it's great. On one hand she thinks the carer is useless, on the other she sings her the highest praises.

I sit in bed at night and question why exactly I am off work right now, but come the morning it becomes really apparent that there is no way I can do what I'm doing and work my usual working week.

As for my sister, with everyone I'll over Xmas she insisted on coming around to make sure Xmas went as she had planned.... Since then there has been no sign of her everyone feeling a little better but she insists it would be stupid to come around while any of them are I'll, but feels guilty that she can't do more to help.

Oh well, mum made it into another year, and is heading for another birthday and her 3rd anniversary of finding out she had cancer and accepting help. So thats something eh.

Hoping to hear from the hospice in the coming week so we can get mum out the house and visiting the place, and I can get some down time too.

Hope everyone else who is dealing with this is coping ok right now.

zip106

Snazy, I can't say I know how you feel - having only just had a close friend diagnosed with cancer, and so I've not had long to travel his road fighting it for very long..

However, I hope you don't mind me adding this link to a thread I've been following on PistonHeads.

It's a very moving account of a chap who's partner was diagnosed last May.

It's a long read but very humbling.

All the best to you and your Mum.

http://www.pistonheads.com/gassing/t...bit&mid=133065

(if you want me to remove the link then I will)

Chip

Zip,

Thats a great thread , I have been through pretty much the same thing these past 9 months with my wife so I can identify with all this guy and his wife have been going through and it is absolute hell.

It is amazing though how much love and support is out there from family , friends and of course those here on scoobynet who have contacted me with help and advice.

Hopefully for us, the outcome will be better, and we are looking forward to a better year than we have just had.

Cheers,

Chip

Snazy

First up, sorry to hear the news about your friend, I hope their journey is as smooth as possible, and I'm sure you will give as much support as you can. It's not all bad, along the way you make some amazing discoveries about people, yourself and life itself, and from those discoveries you can become a stronger person, as can the person diagnosed.
My thoughts are with you both.

I will take a look through the link in a bit, but no by no means do I want you to remove it This is everyones thread, so treat it as you see fit.
I know what you mean by the amount of support out there, it's crazy. Hope 2011 is better for you.

Snazy

Woah, just had a bit of a moment, so blogged it. Just wanted to share it here to show my ever changing mindset, and that I'm not always so great.

Well yet another encounter with mum, and another explosive ending to the "conversation". Was just in the kitchen making light conversation with mum, and the topic of the carer came up. Apparently mum asked for a 5 minute boiled egg this morning and it was runny! This makes the carer completely useless and pointless to mum, and just reinforces the point that she doesn't need a carer. That's of course ignoring the fact that her statement before mentioning the carer was that she was very wobbly today.
I should point out that she has taken the approach of, when the carer gets here, act chair bound and stop doing everything for yourself. Rather than continuing as normal and allowing the carer to supervise her safety, as we have discussed. This just makes matters worse in my opinion.

She is hell bent on getting rid of the carer, proving she doesn't need peoples help, and right now, just making my life a misery. Naturally I try to put across the reason for having the carer, and explain what she is here to do, as well as "defend" the carer where I feel mum is being unfair. Mum does not seem to grasp or maybe just not accept the limited role of the carer, and how it is meant to work. Complaining that the carer does not understand her or speak english (which she actually does very well) is her main thing. When the St Christophers nurse offered to intervene the other day mum refused to let her, yet as soon as everyone leaves, I am left to take it in the neck.

Its times like this I understand why I am on medication and off work at the moment, because right now I'm in a dark lonely place, and as confused as hell. Am I doing right by mum? Am I meant to just roll over on my principals and agree with everything she says? Am I meant to do what I think is best for everyone? Should I get the carer cancelled? Or should I just take a chill pill and forget about it by yhe morning.

Problem is, if we go with the last option I am left with this burning feeling inside. I don't like brushing things under the carpet, forgetting about things like they never happened, its just not me. And then I'm left wondering if it didn't matter, why did it happen in the first place.

This is not the first argument, but they are getting more and more fiery, and possibly more frequent now, and I'm really running out of patience with mum and myself, as well as running out of confidence that I can handle this much more.

Her argument of me caring more about the carer than I do about her bites hard, and leaves me bitter and resentful right now, and my honest feeling right now is b****x, do it yourself then.

In closing the "conversation" I tried explaining that people are doing their best to try and help in anyway they can, and if she doesn't want their help, fine, do it herself. Her parting shot was "well they are not going to die in the next few weeks are they." Which brings us onto (now I say it and think about it) the key part....

Mum is yet to accept, face up to, and start dealing with the fact that she is dying. It must be terrifying to have someone put a tight timescale on your life, and know your time is short, and I respect her fear and emotions. My only wish is to make that time as comfortable and enjoyable as I can for her, but feeling like this.... I can't!

As I'm writing, I'm calming down (which to me is why I blog anyway) as well as making more sense of the whole situation and not just the flashpoint.
After taking a deep breath, I can see the carer thing is not working out, and will need to address that tomorrow somehow, that's numero uno. After that, the dynamic will change, so will be another thing to look at and rearrange. Am I happy with this situation? no!

So, as I calm, and my mind returns to normal thoughts (as normal as they have been recently) I shall start to ponder..... What next.

Thanks for reading and sharing a moment in my life.

Lee247

awwwwww Snazy. Please remember we are all here for you, not just your Mum.
You have no need to be in a lonely place as we all want to help, if we can.
It's easy for us to say best wishes to your Mum and appear to forget about you. This is not the case. You are bound to have off days as it sometimes appears you are carrying the majority of your Mums case on your shoulders.
Feel free to speak, vent anger whatever it takes to help you, anytime you feel the need.
That's what friends are for and we are your friends.
Take care

Snazy

Cheers, appreciate that.
Just been in to speak to her and try and explain where I am coming from with all this, not sure I got thru 100% but made peace all the same.