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Advanced prostat cancer part 2

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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

 
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