Advanced prostat cancer part 2

User

Posted 13 Dec 2016 at 22:32

Shout it from the rooftops honey, you are the storm xxx

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

User

Posted 13 Dec 2016 at 23:16

Mike was fine the first three days after the radium but then it hit, like you we were told to increase his meds. The oncologist said to expect a spike in the pain with the first two treatments. He didn't experiences sickness but did have diarrhoea just one day though. Xxx

User

Posted 14 Dec 2016 at 09:26

Hi Julie
Am almost at a loss for words, I'm so sorry to hear of Trevors new challenges with this horrid disease. Glad to see you have his pain under more control so hoping things will settle now for him and give you both a little respite.
I empathise with one of your ealier comments of having a stubborn proud husband. I have one of those too!!! (won't let me drive, won't use a stick or wheelchair, won't let us apply for disability car badge!)
I'm not sure where the comfort blanket is at the moment but never the less I have been so frantically knitting all night with extra large needles so that it grows quicker. It is a special xmad blanket and I send it with lots of love and sincerety to use throughout the seasonal period.
Take care
Lesley xxxxx

User

Posted 15 Dec 2016 at 10:52

My PCa site was down most of yesterday so just checking in to see if Trevor has stabilised. Hope you are all ok, Julie? Thinking of you.

User

Posted 15 Dec 2016 at 15:42

Hi Julie

How are things going, if you need any help i am about all weekend and free all next week

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 15 Dec 2016 at 18:35

Ok Guys so state of play is he is in the hospital for an emergency CT scan just to rule out SPCC, which I have to say I don't think it is. Claire Oncology nurse has been brilliant she has been in constant contact and has decided to admit him and do the scan.
She also arranged for an emergency GP visit yesterday and he has prescribed morphine, he definitely slept better last night.

He was unable to stand this morning and had to drop to his knees to heave himself out of bed. In true Trevor stlyle he then argued that he didn't need a CT and it was just a blip. To be honest I do agree with him not about the blip but about the CT scan.
My own thoughts it is the cancer advancing and the lack of Zometa because that is also a pain relief. Either way he is in the best place at the moment .

Lyn I am feeling less like a storm and more like a damp sparkler ! All Fiz and no Whiz!

Talking of the Wiz she was meeting Trevor at A&E today so that's a great comfort knowing she is on the case.

So there we are Def in Shark Territory and I think we have just blown a hole in our dingy.

Si thank you so much for the offer of help (I just might need to take you up on that )

To everyone else that has taken the time to reply a Huge Thank you as Always. Xx

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Dec 2016 at 19:04

I hope the hole isn't too large Julie and that some vigorous baling will help settle the dingy. I know you must be waving that baling bucket at all and sundry at the hospital and asking them to take their turn with it. I know I would be.

I wish (like everyone else on here I'll bet) that we could help with the hard work. You know we would if we could.

Keep smiling lovely girl. Let that man of yours see what a cracker he has in you - as if he didn't already know!!

Thinking of you all

Sandra

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

User

Posted 15 Dec 2016 at 21:18

I just logged on to see how things are Julie. I've been thinking about you and your boys. It must be such a hard time for you but I'm glad at least that the medical team have got things in hand.
Take care x

User

Posted 15 Dec 2016 at 21:50

Julie

We've never corresponded but I've read your story with sadness. I have two teenage children, am 46 and just had my prostate removed last week

I'm sending my best wishes to you and your boys. I'm a secondary school headteacher. I hope their school is being supportive. If I can ever give any advice on the school system at times like this, let me know. If they are doing GCSE or A levels, exam boards have to take personal circumstances into consideration.

Hope that doesn't seem irrelevant.

Best wishes to you all.

Walter

User

Posted 15 Dec 2016 at 22:48

Walter thank you for the advice it's really appreciated, I worry so much about the boys . James was 17 last week and is trying to study frantically he is taking math, physics, chemistry, ( he takes after me by the way ) 😉
Life is so difficult even though I have fought hard to keep everything as normal as possible for the boys all the way through this journey the truth is life has never been normal since Trevor's diagnosis they have lived on a knife edge and sadly to have a parent that is different for what ever reason sets children apart from there peers.
It all has an affect.
BFN
JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Dec 2016 at 01:23

Julie,

I'm always thinking about you, Trevor and the boys even if I don't always post as much as I used to.

I just wanted to let you know how much I care and hope they can help Trevor have an easier time than in recent weeks. You all deserve some better news so you can enjoy Christmas together.

Steve xx

User

Posted 16 Dec 2016 at 21:43

Julie

James sounds like a brain box doing those subjects. They're amongst the toughest, so be very proud of him. Have you spoken to anyone at the school about special consideration from the exam boards when he takes his exam? It can add a few percentage marks on to his result. You're not abusing the system to ask about this - believe me, I've met plenty of chancers. You wouldn't be one of them after what you all have been through. Also, if he has applied for university, it might be worthwhile speaking to their admissions departments. They really do take these sorts of things into account.

Walter

User

Posted 16 Dec 2016 at 22:16

It goes much wider than that though - talking to exam boards is all about data but the boys need ongoing support, a mentor, bereavement counselling, young carers provision, or maybe just to be able to pretend they are exactly the same as everyone else. As Julie knows, Si's daughters are supported by a bereavement service even though Si is still very much with us - now that is great safeguarding / early help

Ulsterman, are you using a pseudonym? Now that the forum is open to public search, it wouldn't take very much for a parent, pupil or member of the locality to find 'your name' and 'secondary school HT' and work out that this is you!

Edited by member 17 Dec 2016 at 12:56 | Reason: Not specified

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

User

Posted 16 Dec 2016 at 23:43

Julie - James is obviously a really bright boy to be doing those subjects :-)
I think he is in year 12 so AS levels in the summer and possibly mocks just round the corner (?)
My boys are in year 13 now and did their AS Levels last year. It's a lot of work for them and the advice from Walter is really good. He deserves every last little mark he can get in mitigation for everything he has faced. It's a real achievement just to have kept going with his studies x

User

Posted 17 Dec 2016 at 02:23

Lyn

I just did that and I was first result!!!!

Not totally sure what to do now, but I have been very open with staff, parents and pupils.

And you're right about all the pastoral care that's needed for teenagers when parents have cancer. There are two issues though. Sometimes the teenager feels different enough and doesn't want another thing making them different and, secondly, the support in that school or area just isn't available. Schools are employing their own counsellors more and more because the NHS can't keep up with demand.

Walter

User

Posted 17 Dec 2016 at 12:50

You are talking to the converted :-)

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

User

Posted 17 Dec 2016 at 12:55

I think you will need to keep in mind the openness of the forum when posting about ED, incontinence, etc in the future as there are some things that you probably wouldn't want your students to know!

You could go back and edit each of your posts to remove your name - and we can all do the same for you. You will see that even where people use their real names I almost always refer to them by their avatar name if they have ever given details that make them identifiable. For example, last year a member mentioned getting a new job and named the existing employer (that they hadn't yet resigned from) which was dangerous as we had another member working at the same organisation.

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

User

Posted 19 Dec 2016 at 20:24

Not sure what has gone on but hey I have been busy,
So sprinkles and patches

Patches is for the life boat we have secured a huge patch from the morphine so ok still in shark territory but he is know up , walking , talking , I can't tell you all how much he talks. Ok not running a marothon any time soon but able to stand unaided and mobile .
The morphine has been incredible he isn't sleepy or drowsy and his appetite has improved beyond belief, so Xmas is back on. 😄

Still waiting for the scan results but I think everything will be ok, as for McMillan nurses I am sorry but I am severely disappointed and if they ever actually get in touch I will be telling them exactly what I I think.

The sprinkles are for all of your good wishes , a little sprinkle of fairy dust for each and everyone of you.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 19 Dec 2016 at 21:09

Originally Posted by: Online Community Member

so Xmas is back on. 😄

That's the best message I've read in a long time Julie :-) xx

User

Posted 19 Dec 2016 at 21:56

I gave the doctors & nurses on ICU some feedback after our experience the week before last - I am sure they appreciated it more than they could express! The thing is Julie, people like us can articulate what our loved ones need and fight like lions to get things sorted but who fights for the vulnerable patient who doesn't have someone in their corner???? It is so sad to think about.

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

User

Posted 19 Dec 2016 at 22:02

Wonderful news...well done both of you and three cheers for the morphine.

Happy Christmas.

Eleanor

xxx

User

Posted 19 Dec 2016 at 22:17

Yay :-))
Eggnogs al round xx

User

Posted 19 Dec 2016 at 23:10

Great news, Julie. I'm so pleased for you.

Enjoy a great Christmas now.

Steve x

User

Posted 19 Dec 2016 at 23:30

Julie

Great news for all of you, enjoy your Christmas.

Thanks Chris

User

Posted 19 Dec 2016 at 23:33

Julie,
Better news then, phew!

God Bless
Chris xxxxx

User

Posted 19 Dec 2016 at 23:38

Glad to hear your news, Julie

Walter

User

Posted 19 Dec 2016 at 23:51

Good News Julie.

Enjoy Christmas.

KRO...

User

Posted 20 Dec 2016 at 01:25

Happy for you all, hope you have a really great xmas.

User

Posted 20 Dec 2016 at 06:13

Christmas is a great time for families and so glad that Christmas is back on. Really hope that the latches do the job over the next week at least, julie hope you can have some great memory creating time with your wonderful family.

User

Posted 20 Dec 2016 at 07:16

This is wonderful news Julie. Hope you've kept plenty of sprinkles for yourselves and that you and the boys have a memorable Christmas! What a let down from the MacMillan nurses - thank goodness you have someone on your side and that you have the voice to shout for it. With all best wishes for a happy Christmas

Rosy x

User

Posted 20 Dec 2016 at 09:14

Well, you've just made my Christmas I can tell you.

There is so much sadness in the world at the moment, so every bit of good news gives me a big boost. I've been thinking of you and Trevor and the boys a lot lately and hoping that things would improve, at least enough to give you a pleasantly memorable Christmas.

Re: Macmillan. I'm sure they do a wonderful job in some places.

My daughter was told she wasn't sick enough to need them ~(aggressive rectal cancer) and many miles away from her my sister couldn't get them to help with her terminally sick husband.
Their practice nurse doubled as the Macmillan and couldn't even organise the correct size catheters, and believe me, my sister isn't backward in coming forward and saying it how it is.

In a previous comment Julie you say it isn't like it is in the Macmillan adverts. You are so right. It is such a shame too, but like most things that are publicly funded I suppose the money just isn't there to spread around.

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

User

Posted 20 Dec 2016 at 11:09

Happier Christmas to you
Happier Christmas to you
Happier Christmas to you whooo
Happier Christmas to youoooooooooooooooo!

Bazza
Barry

User

Posted 21 Dec 2016 at 22:19

This man of mine is going to see me of long before he goes, so last week he couldn't stand unaided with the pain. This week with the morphine he is popping in and out of the conservatory door like a Jack in the box.
Ok so he won't be running a marathon any time soon but the turn around is remarkable , I am having to run to keep up with him.
He has been outside organising a bonfire tonight , not starting just organising .
I Am lost for words and oh so grateful that we have another Xmas together.
I am really not sure how or why he manages to rally and as I said earlier if I could sprinkle some T dust I most certainly would , so for any newbies initial diagnosis of PSA 13000 , spread to all of his torso, and three plus years down the line , here we are hanging by a thread but hanging we sure are hanging
BFN
Julie x

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Dec 2016 at 22:52

Christmas magic! Enjoy julie with Trevor and your lovely family. Amazing rally.

User

Posted 22 Dec 2016 at 00:27

Oh Julie what a tonic and a joy you are. Just checking the forum before taking myself off to bed after a rather stressed and sad evening and then along come you and the amazing Trevor, bouncing around the conservatory and organising bonfires and being wonderfully randomly barkingly glorious. Bless you both. I'll go to bed with a grin.

Eleanor

xxx

User

Posted 22 Dec 2016 at 09:10

That thread must be made of titanium of something. Whatever it is it also stretches. Long may it continue.

Have a great Christmas

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

User

Posted 26 Dec 2016 at 01:30

Not such a good post so sorry guys, Xmas day should be such a happy day but I suppose for many a stressful day, well for us an emotional day. I have always kept my posts upbeat but today has been emotional.
Trevor got tearful when he was opening his presents and left the room unable to control the tears the boys were shocked and obviously worried. I managed to calm the situation and bring him back but I tell ya this clucking disease has got a lot to answer for.
Between us we managed to pull everything back for the boys but it was hard flicking hard.

Without a minor miracle this will be Trevor's last Xmas and the pressure to make it wonderful with all of that sadness hanging over us is almost impossible. Sorry if I am making everything sound miserable but this is our reality.
He went to bed at 4 his HB is low again so his energy levels are low.

Tomorrow or is that today is another day and I suppose it is apt that it is Boxing Day because I will be fighting to make it a normal day .
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 Dec 2016 at 01:49

Sending you a big hug, it's not an answer to your problems but just know whatever time of day it is you are not alone. Also one day I will probably be feeling exactly the same.

Tomorrow is another day

Stay strong

Liz x

User

Posted 26 Dec 2016 at 07:46

I'm so sad for the situation you are in Julie. I am struggling big time too. Nowhere near your stage but worrying scans and prognosis straight after Xmas, six year old boy , teenage daughter , and disabled 24 hr needs boy at home too. And all I wanna do is run away and be in peace and solitude because I'm running at permanent 90% stress levels.
May today be a better day. Throw some cheeky cuddles in !!

User

Posted 26 Dec 2016 at 08:27

Sad for you, Liz and Chris and your families and I know it doesn't help.

I am thinking of you all though and hope that things look brighter (or as bright as they can be) today

(((((((((((((((HUGS all round))))))))))))))))))))))))))))

Edited by member 26 Dec 2016 at 10:58 | Reason: Not specified

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

User

Posted 26 Dec 2016 at 09:18

Hi Julie,
Can't offer much to you apart from my sincerest heart felt empathy. I understand how hard it is to keep holding up a good front for the family. But even the strongest of us can't be strong all the time. I know his timing for the tears was not good but he must be aloud to let the emotion out. Maybe you will have a better day today, I am sincerely hoping so for you all.
Sending you Positive thoughts and a big hug Julie.
Take care.
Lesley xxxx

User

Posted 26 Dec 2016 at 10:07

Julie

This time of year always reminds me of our mortality, I know you will keep going girl. Lots of hugs and support.

Thanks Chris

User

Posted 26 Dec 2016 at 10:45

Yesterday must have been so hard with all the added pressure of Christmas. I hope you have an easier and more relaxed day today x

User

Posted 26 Dec 2016 at 11:11

Oh I do feel for you Julie - so very hard for you all. We've still got a way to go before we have to cope with what you are dealing with but I do know how it feels to keep that 'everything's ok' mask in place - especially after the awful few weeks Trevor had in the lead-up to Christmas. I know that Macmillan haven't come through for you yet but when they do maybe you (and Trevor? and the boys?) could book a counseling session just so you could have a place/space to cry. You are amazingly strong but this is more than anyone can bear.

Thinking of you and sending shedloads of hugs and love.

Eleanor

xxxx

User

Posted 26 Dec 2016 at 12:57

Dear Julie,

I am so sorry to hear how hard things are for you, Trevor and the boys.

It breaks my heart reading it, and like probably every one of your friends here, feel helpless, frustrated and yes, angry too because this damn disease takes such a heavy toll on people we really care about.

You must feel under unbearable pressure, but I'm glad you can post about your true feelings here.

So many of us have been lifted time and time again by your wonderful words (often so funny, even in the midst of anguish).

You know we all love you all to bits and wish you strength and peace of heart to carry on.

Warmest wishes always,

George & Lynn

B2PCa

User

Posted 26 Dec 2016 at 20:53

Hi julie
As you know I've been away from the forum whilst having a 2016 meltdown but I do pop in to see how things are for you and your amazing man and wonderful boys. It looks like you've had a horrible time recently but once again the miracle man makes an amazing turnaround. We know it can't last (can it?), we will be with you every step of the way. Your son is a proper brain box, I'm sure he gets it from his mother, wonder if he's got your comic timing too?

Personally, I can't wait to see the back of this year, I know it's only a day but hurry up New Year and bring us all better news.

I am a bit shocked at the lack of support from Macmillan, we have home visits from our hospice nurse, she's so helpful in dealing with the GP who admits he's no expert on cancer iand our current problems. She's so kind and manages to get John moving and cheers him up, I wish you could have the same support.

Big hugs Julie
Love Devonmaid xxxx

User

Posted 26 Dec 2016 at 23:22

Julie I am so sorry. You said in a previous post we are on the same roller coaster and you are so right. Mike also had a melt down on Christmas morning it is so hard trying to make your man feel okay, what can you say! and at the same time putting a smile on your face for the rest of the family when you just want to cry yourself. Today has been a better day for me I do hope it has been for you and your boys.

Big hugs look after yourself

Love Molly xx

User

Posted 27 Dec 2016 at 09:50

Julie,

Just wanted to send my love and let you know that I'm thinking of you.

I had a similar time on Christmas Eve (my birthday) when our youngest grandson was rushed into hospital. I couldn't stop crying and had to hide myself away. I think all the worries and stress that I'd been bottling up suddenly came out. I felt so low. Fortunately our grandson was released in time for Christmas day. Turns out that a rapid rise in temperature had caused him to fit several times. It can happen with babies. Thank God it wasn't more serious.

Christmas aways seems to be a time when we find things surface that we are trying to put to the back of our minds. I think it's because we are reminded of the love we feel for those around us and the love they feel for us.

I hope things become easier for you all.

Steve xxx

User

Posted 27 Dec 2016 at 16:17

Julie, I saw your latest post soon after you sent it, but it made me so sad that I simply couldn't think what to say. It is all so horribly familiar to me, and however brave and positive you and Trevor are, you know, as we did, how it's going to end. Special dates such as Christmas, birthdays, etc sometimes only heighten your emotions as you compare them with previous, happier occasions you shared before it all started to go wrong.
I hope things will settle down for you all a bit now that you've got Christmas out of the way. New Year can be safely ignored, and that's probably the best thing to do with it if you can.

Keep in touch - you have been so generous with your support and words of encouragement to others that there's a big pool of collective goodwill and kind thoughts here for you to tap into when you need them.
Marje

User

Posted 27 Dec 2016 at 17:34

What more can I add that hasn't already been said, xxxxhugsxxxx

Earlier in the year you didn't expect Trevor to see this Christmas, well he made it, so well done to all of you,xxxxx

But our prayers continue, as the next milestone is The New Year, then Easter.............

Keep your spirits up lass you have lots of friends here rooting for you.

With love, Chris and Shirley. xxxxhugsxxxx. XxxxhugsxxxX

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