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Advanced prostat cancer part 2

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
SS

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

Mo

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
J

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

 
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