Advanced prostat cancer part 2

User

Posted 26 Feb 2016 at 00:21

So two wheels on our wagon but were still rolling along, for others newly diagnosed with a similar diagnosis I just want to give hope that almost 3 years on we are still here.

I often think this is some sort of surreal world that I live in (johanson)) yes it is falling down we patch something up and then something else falls off.

I realy can't believe that yesterdayTrevor was up on the flat roof plugging up the whole that our resident RAT is coming through. Yes a rat you heard me. I can't believe that he has climbed the ladder and has sorted it out. Not the rat but Trevor. We are not just talking decorating seriously SOS I am not jocking is seriously needed.

I watched him up,on the roof and just the day before we had got such terrible news, but it is almost like well today is business as usual , I know it is hard to comprehend but we don't have time for bad news

Nidge I will take a Bug Hug any day of the week

Alison yes in major need of the cuddle blanket

Steve hope everything went well the cardiac review.

SS love you loads, jerk chicken and flap jack what more can I say but bring it on. X

I can't honestly say how much all of you guys help me through but it is just immense , you don't know how much I appreciate all of you. . My virtual friends I love you loads.

Lyn I know you are holding back , what could any of us say, it's ok .

Thank you all for being there , it is such a rocky road and you guys are my rocks.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 Feb 2016 at 08:57

Not sure whether I was holding back or whether there is just a bit of denial in my mind. Every year, I think this is your last Christmas together so I hope it is briliant, and then I think the same thing again the next year. You aren't at the stage of difficult conversations and care pathways while T can still get up a ladder (and get down again - in some ways that is more impressive) and in some cases like yours, it really does seem that PSA is just a number and not an indicator of imminent dreadfulness. A bit like Alathays I suppose. March 21st .... seems like ages away but will arrive quicker than you think. My cuddle blanket stays firmly in the box until then in the hope that you just won't need it.

I don't think we need to post pretend posts to flip people back into the system - when the thread is tipping onto a new page and the message 'not found' comes up, all we need to do is click on the previous page ie if p11 isn't coming up, click page 10 instead. Then scroll down to the most recent message at the bottom of the page.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Feb 2016 at 09:41

Our daughter has a rat problem (fairly rural house).
I stayed there to look after the boys while she was in hospital and in the early hours I heard what I thought was somebody walking on the gravel under my bedroom window.
When I looked out there was a rat as big as a cat strolling along. I didn't sleep much after that, especially as they were also mice in the roof and you could hear them scampering.

She finally accepted that the OTC domestic treatments weren't working and had to get the men in.

They traced the main run and put down some really strong stuff. It's eased the situation but as she says she'll have to live with what else is around as she keeps chickens, ducks and a rabbit.

Sorry about the house falling down comment, I thought you just meant decorating.

Even if you could get SOS interested, you need it done now don't you so probably wouldn't help asking them.

We can't control the winds - but we can adjust our sails

User

Posted 26 Feb 2016 at 09:45

I just did a quick google search to see if there was any kind of volunteer society that could help do DIY for people with disabilities and there were quite a few there but obviously I didn't know your area.

The problem would be (I think) is that Trevor would be a proud man and wouldn't want to accept any help like that would he?

We can't control the winds - but we can adjust our sails

User

Posted 26 Feb 2016 at 17:43

Lyn

It is sometimes easier to do the flip message than explain to people what to do if they get page not found , I am just a simple person who looks for simple solutions or workarounds.

I'd just like to say SS that your house is a home it may be a bit old in places but it has character. You have made it welcoming every time I have visited, the occasional unwelcome visitor is commonplace in a rural environment.

I bet Trevor was calling it all the names under the sun and threatening it with any implement he could reach.

See you Thursday bathing belle

Xxxx

User

Posted 26 Feb 2016 at 22:58

Love you guys you are all shamZing, yep T was up the ladder and looking for a tiny weeny hole that Mr rat could squeeze in l, ah ha newly found tile that could be a rat entrance so Roland your days are numbered. We are slowly eradicating Mr Rats entry . I know you would think with numerous Cocker spaniels that they would sort out Mr rat but they are just so dopey , they seem unaware that anything is going on, l love them to death but come on you lot Wake Up . Of course then there is Tulip, she is so smart a typical terrier she is awake alert and ready to rip a small rodent in a heart beat. Only problem is she is just to darn big , she is going to rip of those kitchen cupboards , she is ( let's go Mum).

So I would like to introduce to the forum RITA, yep Rita the rat killer, a very tiny 10 week old JAck RUssel little miss lion heart . Rat poison isn't an option with the other dogs, so Rita 👹 It is all down to you.

Lyn don't Hold back I am under no illusions, we have had nearly 3 years of extra time and there has been so many moments when I have thought (this is it) and yes after seeing the scan results. Well honestly my thought is how the friggg is he still standing. Yesterday up on the roof, today he is attempting to put up plaster board and insulation in our dog room.

How does he do it ? I have no idea, turmeric ? It must be because I have no other explanation.. Of course it could just be bloody mindness and a refusal to give in. But then so many others have have the same mindset.

When I think what he has gone through , the heart attacks, the stroke, pneumonia, the cancer and there he is climbing on the roof and dare I say I don't think think you should do that, he would bite my head of, so I say I will hold the ladder . 😊

Honestly it doesn't really matter what any of you guys say , you could just give me a thumbs up or a silly smiley face but just to know that you all have my back when it all goes tits up is for me knowing that I am not alone. Nuff said.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Feb 2016 at 04:18

If I attempted to go up a ladder on to the roof the only person hitting the roof would be the wife, that is after she has hit me lol, your old man is quiet an impressive guy

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 27 Feb 2016 at 07:39

I'll bring Pippa and Morse round. We'll do some old fashioned lamping haha. Flush out with the terrier then may the chase begin. No prob for Pippa the lurcher rocket. Morse might be wary -- he's already sporting a large scar on his nose from an understandably disgruntled squirrel. I think those rat boxes are safe Julie , the ones that dogs can't eat. Happy hunting x

User

Posted 02 Mar 2016 at 01:40

What a day, we have just had our ABS inspection this is an Assured Breeder Inspection to check that we are meeting the requirements of the scheme and to exhel in our breeding practises. So yes slightly important for gaining and mainting our UKAS accreditation (got the certificate). It would be easy wouldn't it , if only. The heavens decided otherwise , Rain (everything was looking good we were all scrubbed groomed fresh paint applied to all offending door posts and doorways, ready for action Stand by your beds) . You have to imagine it is like having 20 two year olds ready for a royal occasion, so firstly the heavens opened and dogs and rain is not something that goes together. So we decided everyone in the kitchen, best laid plans and all that ( some one I can't name names because I because it could have been anyone jumped up and set the washing machine of , not a big deal Normally, but (one of my famous buts) because Mr RAt had chewed through the hose on the washing machine this then started the flood, we know had less than twenty minutes to get the dogs out , get the floor dried and get the dogs back in again, imagine Noah's Ark with a lot of swearing and a fair bit of stress build up. Of course by the time we opened the door to the assessor , all was calm , all was good, The morale to this story is ( always expect the unexpected , prepare for the worst and that way you can deal with (don't tempt me) what life throws at you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Mar 2016 at 06:56

This is the first thing I read today, at the beginning of what is going to be a very stressful day for me too. And it made me laugh for which I thank you. I've wound the pippa bomb up with google images of rats , and she"s on her way xx

User

Posted 02 Mar 2016 at 08:32

Ah Julie, it could only happen to you !

Good luck with the certificate. I know you wanted it spic and span, but I'm sure the Assessor would have made allowances.

Hmmm. You would have had to explain that a rat chewed through the hose, so maybe not.

Anyway, glad it all got sorted. Take a big breath and pat yourselves on the back for a job well done

We can't control the winds - but we can adjust our sails

User

Posted 02 Mar 2016 at 10:25

Hi Julie,

Look on the bright side, you have lived a real life episode from Faulty Towers, the rat arriving at the same time as the inspector, hopefully you handled it with as much aplomb as Sybil and Basil?

Dave

User

Posted 02 Mar 2016 at 11:00

SS Julie

Now I am getting some mighty funny looks from the man in a white van parked next to me at Watford gap services. He is trying to work our if I have wet myself laughing. I am a little early for my 7 property viewings so thought I'd have a quick peep on the forum. First up the Fawlty towers story. I have laughed in the car before but not like this!

I always wondered why they called this services Watford gap when it is 70 miles or so north of Watford. Also why people suggest that you leave the South when you go past here heading North as that would make the South pretty small.

Then I discovered the Northants village of Watford and now it all makes sense!!

All good for a visit from another VIP tomorrow then? At least I come bearing gifts!! Please also ask Tulip not to chew my leg mistakenly. (Assuming she has finished all the kitchen chairs by now ably assisted by Roland.)

Looking forward to catching up and a lot of laughter tomorrow xxxx

User

Posted 02 Mar 2016 at 12:11

Only you Julie, only you!

Mind you you coped in your usual calm and capable way. Thanks for the giggle, we are waiting for a blocked catheter to be sorted so in need of a laugh.

You are so calm about the rat, I'd be on the table and not get down until the man came to get him. Horrible things.

Lots of love

Allison xxx

User

Posted 02 Mar 2016 at 12:50

Hi Julie,

Glad you got it all sorted in the end. Well Done!

Steve xx

User

Posted 02 Mar 2016 at 14:38

BUT DID THEY PASS YOU?????

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Mar 2016 at 10:26

Is that 20 dogs aswell as everything else you have to deal with?? I take my hat off to you both. Hope you passed.

Rosy

User

Posted 03 Mar 2016 at 21:32

No Rosy only only 17 (peice of cake)🙀 to say that I don't get to sit down for more than 10 minutes at a time is a true statement. If I described my day honestly all of you would not believe it. I don't believe it and I witness it every day.

I have got a stinking cold (not surprising) I just hope that I don't pass it to Trevor. Just when I needed it most my SS flew down and made a wonderful visit , what can I say she is such a diamond , jerk chicken in tubs ready to cook and chocolate flapjack what more could you ask for in life, OH and a lovely bunch of Tulips. Life doesn't get much better than that. The chicken is pretty much gone and the flapjack (wow Mo that is fandabidosie).

So I have been able to spend a few hours under the cuddle blanket on the sofa in my ivory tower ,(prices less ) there is know a huge pile of tissues by my side . SS THANKYOU. X

Lyn YES PASSED with flying colours, sorry I waffle on and forget the important bit. 😄 UKAS Accreditaion and Breeders of EXclence for another 3 years , certificate will be in the post. Our last inspection was just as T was being diagnosed and was such a stressful time

Also forgot to say previously latest PSA 2 weeks ago was 789 so rising 100 every four weeks, but I am sure as MO would testify he looks and feels well.

Onwards and upwards guys , onwards and upwards.🤓

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Mar 2016 at 23:04

Not been on here for some time but your humour, Julie, always makes me smile, what with Trevor up a ladder, was he trying to catch up his PSA? Your puppie certificate! What about the boys though.

ALL THE VERY BEST.

Chris. xx

User

Posted 04 Mar 2016 at 01:00

Aah my mistake - only 17 dogs! Well that's nothing really!! I find one cat a pain in the neck.

Hope your cold goes soon. I swear by First Defence at the first signs of a cold and have only had one very short lived cold in the past 2 years. I stocked up when David started chemo as I didn't want to give him any bugs.

Take care

Rosy

User

Posted 21 Mar 2016 at 22:29

So much has happened I don't no where to start. The Rat is dead yey we managed to catch it in the trap peanut butter worked a treat , for any animal lovers out there look away ( no we didn't bash it) a dustbin full of water and a few chosen words " like good night sweetheart" and you just cost me £200 replacing chewed washing machine and dishwasher hoses. As an animal lover I did feel bad but only for a short while and then I summoned my strength to cook a spagg boll😜

Poor old Yodie he is turned 14 bald as a coot and coughing for England his time line is running out (he is a dog. By the way ) so when do we get the chance to concentrate on Cancer, well to be honest not that often but today has been one of those days when The big C has taken priority.

So the results of the CT scan are inconclusive they are going to the MDT meeting this Thursday, the Wiz has looked and can't see anything to worry about. Raduim 223 is of the table it is a no go unless chemo is given first.

PSA is know up to 994 so a rise of just over 200 in four weeks , s*** not quite what we had hoped but to be honest pretty much as I had suspected. Trevor's energy levels have dropped dramatically and back pain is increasing.

The chemo card was brought up and this is where things get a bit tricky the Wiz bless her this is the first time that I have seen her faulter, she very gently explained to Trevor that the chances of him surviving chemo are slim.

So what do you do , well we are all differnt but for us we came home and life goes on as normal. NORMAL what the pig is normal well it's our normal.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Mar 2016 at 22:39

Ah Julie,

I'm very very pleased that Mr Ratty got his comeuppance. Poor Old Yodie, but I'm sure he has been well cared for

As for the rest, what can any of us say apart from the usual "I'm thinking of you"

Big hugs

PS. I'm not generally known as a touchy feely person (it was the way we were brought up) and I've had to get used to the greeting and goodbye kiss but since I've been a member of this site I have never felt the need more to hug people to show I care.

Odd isn't it

Edited by member 21 Mar 2016 at 22:41 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 21 Mar 2016 at 22:56

Oh love, I really hoped they would say chemo was worth a try - did it seem that the Wiz might consider one or two rounds or did she think even that would be too much for him? Is Radium 223 available after ANY chemo or does it have to be the full lot?

And did she say anything about the fact that Radium might be available without chemo on the Cancer Drugs Fund?

And how did you get the peanut butter to float on the water in the dustbin?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 Mar 2016 at 23:01

This is one situation where I can honestly say that I understand. I really do take my hat off to you for your positivity and sense of humour whatever the circumstances. Your Trevor is a lucky man.

The rat bit is disgusting though - I've never much liked them. I was a bit worried about your spag bol though - in the words of Monty Python I hope there wasn't a little bit of rat in it?

Thinking of you both

Rosy x

User

Posted 22 Mar 2016 at 07:32

If your cooking was nicer he wouldn't have had to resort to washing machine hoses and the like. He' d be going through the bins :-))
A nasty fate for any animal , but just like wasps they really don't know when to pack their bags and move on.
I'm not sure of all the intricacies and criteria that lead to what treatments can be given when with this awful disease, but I'm hoping they find a way forward for you both that suits you as best as possible.
Chris x

User

Posted 22 Mar 2016 at 09:13

not what you wanted to hear at all, I am with Lyn, was the Onco able to say what she feared would be the biggest issue with chemo? I know our Onco was concerned about Mick's low Hb and frailty but he decided to go ahead anyway on a reduced dosage (about 2/3) docetaxel. I know the outcome was not significantly changed but I can truly say that his QOL during the first 7 cycles of chemo was significantly improved. In fact probably the best 4 months in the whole year that he was ill.

I know T has got other more serious complications but I just can't help thinking that his resilience to date has been so amazing that it is a shame to totally discount even a single low dose of chemo, if that becomes an enabler for radium 223.

A frustrating time for you both I know, your humour and matter of factness always shine through Julie. I had no sympathy for the rat and not much of a squrim about his dispatch either, after all I have seen first hand what a destructive little so an so it was! Or was that Tulip?!!

On the bright side it not only cost you 200 quid to fix the damage but it also "forced" you into buying Rita who clearly was just too young to do her job yet (I'm not sure if you can get done for puppy labour like you can for child labour!) Hopefully as well as being the cutest and most adorable JRT I have met in a while, she will be a warning to any other Roland or Rolanda that thinks taking up residence in your abode is fair game!

Will call later

xxxxxxxxxxxxx

User

Posted 22 Mar 2016 at 10:59

A bit of a conundrum. Whilst I understand the reasoning behind radium after chemo in a situation where cheeks refused by the medics surely they should be able to say it's our decision so in this case let's try radium 223. If not as others have suggested if a single dose would unblock the rules worth a discussion. Meanwhile keep going and stay strong! I know you both will!

User

Posted 22 Mar 2016 at 12:14

As others have said your humour and stoicism shine through Julie. You will continue to support Trevor with this new normal but you also have to think of yourself.
A positive is that the Wiz wasn't overly concerned with the scan results.

Hopefully a plan will come together.

Bri xx

User

Posted 22 Mar 2016 at 19:58

Oh Julie

What a tale you tell, rats at dawn, good riddance and a burial at sea, excellent result.

Not great news re Trevor and his incredible PSA, in fact he's such an incredible man I wonder that they don't try chemo just based on his amazing constitution. I guess it's time to take stock and see what happens. It's a frightening time, not knowing what's next, I have another friend in this position, nothing else to be done but simply go home and enjoy whatever life is left. I think quality of life is everything, as long as your man is enjoying your company, his boys, the dogs and a bit of rat catching on the side then you are all doing everything you can for him.

There are no words of solace Julie, we are all just attempting to keep you buoyed up, we know your legendary spirit and amazing work rate. If there is anything that can be done for Trevor, then I'm sure he'd rather have you on his side, than anyone else.

Hugs and love and a very soggy comfort blanket (from the secret tears) on their way to you (I think Rosy has it at the moment).

Love

Devonmaid xxx

User

Posted 22 Mar 2016 at 23:05

One soggy and gin soaked comfort blanket on it's way to you now!

Rosy x

User

Posted 24 Mar 2016 at 00:11

I have managed to have a long chat with Ts oncology nurse and from what she is saying chemo will be still on the cards but and here it comes only when our back and the Wizs back is up against the wall. Basically she will opt for chemo when Trevor's pain gets to a certain level at the moment his pain is manageable. When his QOL is compromised then she will have to go the chemo route.

It is catch twenty two with the Raduim apparently the Wiz has to authorise the chemo and then wait and see what happens before she can apply to the drugs fund for the Raduim, what a conundrum and somewhere in the midst of this we go round and round.

For know we continue with Abi even though we all know it is not working but I suppose it is better the Devil you know than the Devil you don't.

Our options are very limited so even though Abi is not working as we had hoped it maybe slowing the progression.

Just to answer my SS (Mo) it is the heart issues that is holding her back, I have been worried about saying this for others who may be reading and would be worried with similar issues but then I thought warts and all , Trevor has around 35 per cent heart function due to the heart attacks in the past and the chemo is likely to weaken that , of course my worry is if we wait then he will be weaker in general so to then put him through chemo. ( I suppose you can all see where I am going with that)!

Oh ok so a rock and a hard place, it's OK Guys there are no easy platitudes , we have known from day one and that is almost 3 years ago where this was headed, if you don't know what to say , I understand just say hi keep going girl.

Talking about keep going when we came out from the a appointment on Mon Trevor always astounds me for just a split second I thought just maybe he might need, or want to talk and then that moment passed in a nano second and I thought he is going to ask about lunch. Sure enough he said "are you hungry" of course I wasn't but said yes what do you fancy. How about M&S he said so that is where we eneded up, he had the healthy option of spiced salmon with spiralised carrot and courgette spaghetti (yum yum I don't think so)) he then polished of my ham and cheese toastie as well . I was to upset to eat . It always amazes me how he can eat after receiving the worst news. A stranded whale of Bognor Beach on the news would put me of my dinner.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 24 Mar 2016 at 00:44

Lyn i forgot to say the peanut butter goes in the trap thus luring the rat into the trap, when the rat is lured into the trap with the peanut butter , then the trap does shut capturing the rat in the trap. Once this is accomplished and the rat is trapped in the trap then and only then do you need the large dustbin (filled with water) at this point you also need a teenage son ( you could borrow one if you don't have one) or I am sure the free adds would have loads . Next step is to Lower the trap containing the rat into the water, (sorry I have got the shivers) . Sometimes you have to outweigh the cruelty measures.

😜

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 24 Mar 2016 at 01:02

Nice description, all makes sense now.

We have a friend with a little girl. When she was 3 I asked her one day "did you do anything nice at the stables?" She replied (dressed in her fairy tutu and looking angelic with her blonde ringlets) "yes, we killed baby rats" I was horrified but thought may be a mistake. No, mum explained that they sent the dog in to the hay and then when all the rats ran out it was all hands to the decks to squish them all. Even my beautiful angel child. Country folk are tough.

You are not tough but you are strong. T is Tough with a capital T. Perhaps he has that amazing superhuman skill that my John has perfected - being able to completely eradicate bad things from the memory so they simply did not happen. Lovey, if it works it works.

The wiz knows what she is doing, just have to trust the strange convoluted NHS hoops I suppose. Certainly, chemo is not the heart's best friend and some chemo is worse than others. The hospital told us that Stan's heart failure was caused by the chemo (when they eventually managed to organise themselves and diagnose him) - of course, the delay wasn't all their fault .... Stan had a heart attack but didn't mention it to anyone because he didn't think it was serious and he had a holiday planned. Mother-in-law still regrets Stan having the chemo - my view was that it was worth the risk.

Between you and T and the Wiz, you will know when and if the risks are a better bet than the doing nothing and gently letting go. As always, you are on my mind xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 24 Mar 2016 at 05:43

Hi julie

Your tales of trevor and the rat have been great to read you are a wonderful lady hoping the wiz has the answers

Regards

Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 24 Mar 2016 at 07:11

Hi Julie
Just wanted you to know I am thinking of you and T a lot. You've been right through the mill and it's now getting even tougher. I admire your strength and humour and whilst it's normally bad news these days , you always make me smile.
Before they re-vamped the entrance of Southampton hospital ( still not finished ) there was a Burgerking inside. Elaine would frown as I wolfed down a bacon-double , fries and milkshake , even after endlessly worse news. My little treat ha.
Sending wishes and love x

User

Posted 24 Mar 2016 at 09:02

As always, I admire yours( and Trevor's) courage but I think also your children must be extra special too.

It can't be easy to live as you all do, virtually one day at a time.

I wish there was magic dust but that's for Fairy Land.

Hero and heroine in your own story though, so "Hi, keep going girl !"

We can't control the winds - but we can adjust our sails

User

Posted 25 Mar 2016 at 21:50

Hello Julie

Sent you a post a few days ago thought it was moderated as I haven't posted much under wee wifie2 obviously not think I am hanging around with Mum to much (Alzheimer's) must be catching.

I haven't posted for a while since my conversation about Trevor not to take chemo it was just Eric shouldn't of had chemo with his heart and lung problems but the only way was to take low dose chemo before abbi (Scottish Law).If you remember the hugs you used to send up on the train now its my turn to send them on the first train to you and Trevor.

Eric's PSA dropped whilst on chemo but like TG was still spreading also it never made one bit of difference to his pain.My heart goes out to you all.

I'm sure the Wiz has something else for Trevor.You both have given this disease a run and long may it continue as I know you will

Wish I lived near so that I could give you a big hug and not a virtual one.

Sending my best wishes on the first train.

Carol xxxx

User

Posted 26 Mar 2016 at 08:34

I have read you posts since joining nearly two years ago, but today I read your profile for the first time. I don't think there is a cliche to adequately describe your journey. Your strength and resolve are to be admired and you still have a sense of humour. So hi and keep going girl.

Thanks Chris

User

Posted 26 Mar 2016 at 22:48

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

User

Posted 27 Mar 2016 at 03:30

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

User

Posted 27 Mar 2016 at 08:04

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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Posted 27 Mar 2016 at 08:35

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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Posted 27 Mar 2016 at 11:52

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

User

Posted 27 Mar 2016 at 11:55

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

User

Posted 27 Mar 2016 at 12:25

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

User

Posted 27 Mar 2016 at 20:00

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!

User

Posted 21 Apr 2016 at 21:27

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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