Thank you ALL for replies,
When the chips are down it realy helps to hear your voices.
This is a bit of a warts an all moment so for any body sqeumish look away know.
Carol thank you for your post so many on here want to give a positive but your comment about Eric just about summed up my feelings. I try and stay positive for others on here but you told it like it is and I am grateful for that. I would rather hear the worst case scenario and work back wards.
I hope that life is getting easier for you and you are going forward in life. I hear that reduced train fares are in your area 😃
Trevor dying is something we have lived with for such a long time, from way back with the first heart attack it has been a constant state of high alert and I have to tell you it is exhausting , we have lurched from one emergency to the next.
So many people comment on how well he looks and how well he has done (both of those comments are so true) he looks on the outside as if nothing is wrong. The truth is far from that.
He has defied all expectations and must be made of some strange either plant material or some intergaltic slightly Jamaican , slightly Scottish hy-brid. I am not sure with his ancestry is true.
Sandra your comment about our boys has been the one that has weighed heaviest on my heart, in all of this crazy mess , To be totally honest my scariest moments and worst nightmares are for my boys. When Trevor dies they will still be children, I don't mean to belittle the so many on here that have children of any age, ( they are always our children no matter there age).
The boys are 16 and 11 , James has so stepped up to the plate and taken on so many jobs for me, he know drags in the 15kg sacks of dog food and helps with so much.
He is just about to take his exams and then is going onto take Chemistry, Physics, and maths ( he gets his brains from me).
Zack is realy still a baby at 11 he relies so much on his dad. Such a sweet boy they both understand what is going on but don't want to talk about it, why would they children live in the moment , childhood is wonderful it is a whole different world .
I am going to be totally honest and it is my boys ( I know most mums will understand what I am saying) that I have most worries for, you see they are the future, they will be the ones with the memories of what happened to there dad. Trying to help everyone through our next steps is such a heavy burden.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Oh Julie
My heart goes out to you and your boys. I am sitting here trying to think of some profound words to help. All I can think of is that with a mum like you they will get through - you will be battered and bruised but you'll do it.
I would send you the comfort blanket back but have just sent it to Devonmaid as she's also having such a tough time. Perhaps we need to cut it up and send bits of it out.
Thinking of you
Rosy x
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Your boys will cope Julie, after the initial pain, I know they will, because they will have you to think of and to help them through it.
There isn't anything that can push through that pain quickly,it is just a process that has to be gone through, but get through it you all will.
It was our 13 year old grandson that worried about all of us when he was diagnosed and once the shock wore off he was very busy getting on with making the treatment work, not just for himself but to encourage the rest of us. People called him inspiring but he never saw it like that and was impatient with that view since as he said, he had no choice
It will be hard for them and you can't know exactly what is in their minds and hearts but they are quietly preparing for this.
They have each other and you and I'm sure many many friends and family to help when the time comes.
I think of you often.
We can't control the winds - but we can adjust our sails |
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yep its strange how kids deal with the loss of a father, I recall my mam telling me when dad died I was only 8, my first thoughts where who would like my dads cloths
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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How much contact do you have with the school about what's happening with T Julie? The exam board can make allowances if they know dad has a terminal illness or where the pupil can be defined as a young carer (which your #1 boy surely can be).
The school should also have access to grief counselling (referral elsewhere or have someone in school trained) which can start long before the actual bereavement and programmes of work they can use with son #2 in PSHE, probably as whole class work so that he doesn't realise it is for his benefit.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Julie my lovely friend and SS
No need for me to say much here as we talk about things like this all the time together. I know you worry about posting the whole picture in case it hurts others to read it, perhaps knowing that they may be part of a similar situation sometime. However this thread is all about supportng you and your family. If you need to post you go ahead and post, as I have said to Rosy and others this is one of the many things this forum is here for.
I have had several men PM me to say that my posts and those of other people who are dealing with end of life issues, have helped them to see things from a different perspective. It has opened up issues for them that they now feel a better understanding of. These may be things they keep in the back of their minds for when it is their time. Equally there are people who really don't want to think about it at all so they just look away and don't read a thread that they know will be about giving that support.
I can't give much advice on how to support your young children, but there are sadly lots of other people here in that same situation who can support you, indeed you can help support each other which is what we all strive to do.
Love you loads SS
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Mo
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Hi Julie,
Sorry not been around for six weeks or so, its manic here, but that's another story.
I often think back to three years ago when you, me and Mo joined the forum all with mets and such different journeys, poor Mick nothing seemed to work for him, Trevor with his mental PSA and me with my pathetic PSA. what a crazy cancer this is.
We still have Mo watching our back and you my friend are my wing man as i am to you.
Lyn is so right about the children services, our girls are looked after by the Children bereavement center and what a great job they do, i hope there is one in your area.
You know you can call anytime and we will be there for you, really hoping the Wiz has something up her sleeve.
Ness and the girls all send there love.
Keep strong
Si xx
Don't deny the diagnosis; try to defy the verdict |
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I do think that children do have resilience but that does not mean they won't need you a lot when Trevor goes. There will never be an ideal time and you rightly say that children of all ages are affected in so many ways by death and dying. I feel powerless to anything for my two children as I won't be here after I have gone. But I focus my energies not on that time but on the here and now. Making sure they understand what is happening and can get the most of their time with me. Your children are younger therefore I guess you have to balance memory making with ensuring they can continue to make the most of their childhood and schooling. This is not easy and I don't have any easy answers. But the more you can talk as a family or using the support services mentioned by Si and Lyn above the more you can help your kids along. I know you can do this!
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My how time flies good evening folks. Another Onc visit under our belts and yes it is no surprise that a further PSA rise recorded buuuuut not as bad as we had feared only 100 points since last time😬 . The time before was 200 and I know it might sound weird to some but we were quite happy with that. So we are our now running at 1,081. The Wiz has decided to keep on with the Abbi even though it has not worked out as we had hoped it just maybe doing something and in her own words she wants to to get as much mileage as possible before switching. She has studied all of the clauses for Raduim 223 and apparently we would be able to try it, the two qualifying things we would need are a rising PSA on current treatment , we qualify for this one and increasing pain . Trevor's pain level at the moment is manageable so we are going to wait it out. She did say that the drugs fund can change there minds daily and if this is the case then she will ring us so we can hot foot it back to see her.
New scans will be arranged for 8 weeks time to check what is going on. One interesting thing she did say was (hope you are reading this Glen) that a large rise on the Raduim is normal .
So next visit in 4 weeks until then carry on as normal😜.
Last thing to add with all of the celebrities ( seems like one every day) dying thank goodness we are not famous.😎
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Not bad news at all Julie. It feels as if they are not rushing at change whilst there appears to be some control and no pain. I like the strategy. Hopefully you will be fine for the next eight weeks and then some.
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Trevor's PSA is a celebrity in its own right Julie, he is such an amazing man. I was touched by Si's comment about you, him and Mo, all in the same boat and very different outcomes. Why is this? Why isn't it investigated in case it's something of use to future cases, same as us, how come someone with a G10 is still keeping it under control 5 years later, there must be something to learn.
Anyway, enough of that, big hugs to you and your family. It's a scary time but I'm a great believer in the time chosen to change treatment being a great benefit, as long as the time is right.
Big love to you Julie xxxx
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Oh, I told you she would pull something out of the bag for Radium - fingers crossed that the criteria haven't changed (again) by the time you need it. A reassuring snippet for Glen too - a good day for everyone except Prince then
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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You are so right DM this disease is so varied from man to man ,Trevor and Si's stats are so similar but poles apart in there PSA . I totally agree we should volunteer them for testing. Between them they well may hold the answers and at the very least Ness and I can have two weeks in Tennerife whilst they are away😆
Lyn the Wiz is going to keep a close eye on the Cancer drugs fund and she said even if they change it that it would take 3 months to come into force and she would let us know Asap. She is still very wary of Trevor having chemo.
So life carries on as normal well normal for us, the boys have basketball practise every Thursday so of they all went with Trevor driving leaving me at home with the hounds, all was going well until Tulip (Bull Terrier ) spotted Dave ( the cat ) in the field and decided she was going to leap the fence to get to him. I have a sneaky suspicion that she was planning a spot of ABH, although Dave isn't a celebrity I did feel his days could be numbered.😵.
So my first thought was get all of the other dogs in before I opened the gate , then I ran to catch her this wasn't easy as you can imagine a very unfit nearly 60 year old chasing a Bull Terrier. 😤I was onto a loser before we started. Luckily she had jumped onto the patio and that is fenced I thought yes I am in with a chance and Dave will live to fight another day.
Of course once I had caught her my next dilemma was how was I going to be able to walk her without a lead passed Dave who was still sitting there like a sitting duck . (Cats can be so stupid sometimes). So daft idea number one was take the belt of my skirt and use it as a lead. I managed to get it of my skirt one handed because I am hanging onto her collar the whole time. I even managed to get it over her head, I then realised what a ridiculous idea this was it was way to flimsy to hold a Bull Terrier. Know my skirt is round my ankles and I have to hold my skirt up with one hand while holding Tulip with the other.
This is when smart idea number two comes into play. I thought if I can man handle her to the conservatory door I can force her in that way and we don't have to go past Dave who is still sitting there but now with a very smug look on his face.😹. Of course that would have been way to easy, because MRs ocd has locked the conservatory door from the inside.
So it was at this point that I spot the window slightly ajar, I will admit I did hesitate mainly because it is my brand new conservatory and dogs are not allowed in there but being an animal lover the life of my cat won over the no dogs in the conservatory rule. So hence I know this has been a long story but this is how I came to be chucking a Bull Terrier through an open window while my skirt was round my ankles.😵. Just in case some one spotted me and it goes viral no animals were harmed in this escapade.
Who says my life is dull..
BFN
Julie X
Edited by member 22 Apr 2016 at 00:06
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NEVER LAUGH AT A LIVE DRAGON |
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God I love you so much xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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NEVER LAUGH AT A LIVE DRAGON |
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Hang on in there Julie (and hang onto your skirt too!). All the while you can laugh you can keep on going.
Rosy x
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are we sure this is not a scene from a carry on movie, made me chuckle whilst having my brekkie, what a fun start to the day, we may have problems but boy their is some right loonies on here lol
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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As ever , thanks for the update followed by the mania. You should meet my Psychiatrist. She's a lovely lady and you'd get on well. But Trevor needs you at home so I guess it's best you don't visit.
Best wishes
Chris
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Hi Jullie,
Love hearing your doggie adventures. Havnt posted much recently. You guessed it !! Have Border Collie number four, Blossom's half brother called Sparkle, fourteen weeks old ! That's it, no more dogs !!! Well would rather do the things I love while young and fit enough. never know what's round the corner. Great talk at Local PCa Support Group last night by one of our truly brilliant oncologists. Never realised how good Bristol oncology centre was for clinical trials ! Love to you, Trev and dogs,
Fiona. x
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Hi Julie
Lovely to read your updates, am sad to still hear psa rising though good to hear it was a smaller rise and what brilliant news to know radium 223 can be an option for T.
What an inspiration you are to others. Even when many odds are against you,you still divert your energies and thoughts to all the other wonderfuland maybe mad things that are happening in your life.
Some of us will walk over mountains, some will run marathons, some enjoy sunshine breaks away,the more sensible of us will simply enjoy a family gathering, some do more dangerous ski activities and others, maybe only a few,walk their dogs with skirts round their ankles!! Let's keep our lives full of fun,laughter and madness despite all our troubles.
Take care Julie
Lesley xxx