Chemo on the cards

User

Posted 03 Jan 2015 at 13:00

Hi Allison and John,

So sorry to hear about your difficult Christmas and New Year.
Good luck with getting a quick appointment and some resolution to the pain.

George and Lynn
x

B2PCa

User

Posted 03 Jan 2015 at 15:48

Very sorry to hear about Christmas and New Year. The bummer with this disease is that it has the habit of throwing something at you all the time. We had a good Christmas but seem to be on another downer today, and I feel like I can't do anything right.

Thinking of everyone living with, or living with someone with PCa.

Glen

User

Posted 03 Jan 2015 at 17:07

Thanks guys,
Urgent means two weeks it seems, but to be honest right now I don't even have a clue how I'd get John there. I may have to ask for help from someone as it's hard enough getting up and down from bed or chair but the car? I can't imagine how to do that. I shall call my favourite hospice nurse on Monday and ask for advice. Good job he has such a good, military sense of humour. I'm sure once zapped he will be more mobile.

Will update when more is known

Lots of love and thanks for the support

Allison xx

User

Posted 03 Jan 2015 at 18:02

Hi Allison, thinking of you. We had this situation with transport with Neil. Your oncology dept, GP or other health team should be able to organise proper ambulance transport for you and John. Hopefully the specialist nurse you mentioned should help. Hospital transport seemed to be plentiful years ago but seems to be one of those things that's increasingly hard to get but sounds like you have every justification to request help with this !

Love, Fiona. x

User

Posted 03 Jan 2015 at 18:28

Allison, just catching up with your difficult news. This must have come a bit out of the blue when you thought john was holding his own and chemo was to be delayed. Hope you can get transport sorted so you can get him to see onco and get to the bottom of the problems and get a way forward. Thinking of you.,

User

Posted 03 Jan 2015 at 22:10

Allison
is John's mobility bad because of iliac area pain or because he has no strength in his legs? When Mick had to get into our old car it was a hell of a struggle it was easier with the Sportgae. Has anyone in your family/friends got an SUV as the higher position fromm the road makes it easier to get in and out of.
I know he hates taking pain meds but something an hour before you set out will probably help.

thinking of you
xx
Mandy Mo

User

Posted 03 Jan 2015 at 22:31

The answer is both Mandy, his right leg is barely supporting him as well as the pain from the bone. I do know someone with an SUV and once we know when the appointment is will consider asking him for help (he's a policeman so may be on shift). Good idea though and also about pain meds beforehand.

Thanks for your help
Love Allison xx

User

Posted 04 Jan 2015 at 10:13

Hi Allison,

So sorry to see things have changed so quickly.

Really hope you manage to get John an appointment quicker, two weeks is a long time.

We all send our best wishes

Si xx

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

User

Posted 04 Jan 2015 at 12:00

Alison, surely they would provide hospital transport? The drivers will know how to move John with the least discomfort possible I hope. This is not a good start to 2015 for a number of us - it is normal to welcome a new year for all the possibilities and joy that may be ahead so it seems to hit harder to get worrying news when everyone else seems to be smiling. Be strong my lovely friend x

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

User

Posted 05 Jan 2015 at 15:38

Sorry to read this Alison it would seem 2015 is not starting to well for a few of us. Having to wait 2 weeks is going to be a nightmare. I know this isn't exactly ethical but a pretend fall and a 999 call would solve both your problems , transport and a faster appointment but don't tell anyone that I suggested this.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Lots of Love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Jan 2015 at 15:49

You need specialists to help John. I can't believe this isn't provided as a matter of course. I hope you are chasing your local ambulance service. I would also pester your GP if help isn't forthcoming.

Good luck in obtaining the help you so clearly need.

Paul

Stay Calm And Carry On.

User

Posted 05 Jan 2015 at 16:14

Absolutely agree with the last few posts. John shouldn't have to struggle to get to the appointment. The hospital will in all liklihood have taxis.

Really hope he gets the treatment he needs soon.

Thinking of both of you

Bri x

User

Posted 05 Jan 2015 at 22:01

Thanks Guys
Latest update is that John seems a little better and is moving about more. Still struggling to get in and out of bed and chairs and still has pain. The hospice nurse got the GP to send some higher dose tramadol so we are going to try that. Bad night last night made worse by my accidentally thumping John right on the met. I'm sleeping in the spare room tonight plus I won't get worken every hour when John visits the loo (how mean of me!).

Our own hospice nurse is back from holidays tomorrow so I'm hoping she will visit, the stand in today thought John should be seen sooner than two weeks due to the danger of the sciatic nerve being compressed, it's definiely causing the tingling and leg weakness.

Will update once more is known but he remains in good spirits.

Love to all
Allison

User

Posted 06 Jan 2015 at 01:22

Relief and worry all mixed up in one - I hope that appointment comes soon x

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

User

Posted 06 Jan 2015 at 11:11

Allison. if you have no joy with the hospice nurse today and getting a more urget referal then I would follow Julie's hint, call 111 tell them you suspect a SCC (not that it is but the symptoms could lead you to suspect that) I know John hates the fuss but sometimes extreme action might just get you some respite.
Sleeping in the spare room is not mean at all it is very sensible you need to be strong right now and lack of sleep is not going to help you or John. Just make sure he has a means of waking you if he does have a big problem an old fashioned bell worked for Mick and I.

Thinking of you lovely friend
xx
Mo

User

Posted 20 Jan 2015 at 12:41

Hi Guys
Well we finally got to see the oncologist yesterday and he had ordered five sessions of RT to the tumour in the right illiac bone. PSA remains low at 6 and he says that since it is stable he wants to keep John on Stillbestrill and not start chemo yet. He said that he feels this is a local issue in the hip and the low PSA means that it's not on the move. I am pinching myself at how lucky we are.

I think we are satisfied with that to be honest, we are away on a short break in the Forest of Dean this week, so no long walks but lots of rest and recuperation instead while we wait for our appointment in Oxford.

Much love to you lot
Allison xxxx

User

Posted 20 Jan 2015 at 13:15

Hi Allison,

What good, very positive news!

Enjoy your break, relax and SMILE!

Best you both both,

George

B2PCa

User

Posted 20 Jan 2015 at 13:48

Great Allison. That is an enviable PSA score so hopefully the rogue met problem will be zapped and the HT can continue to work. I am now hoping I can drop down to such levels! Enjoy your break.

User

Posted 20 Jan 2015 at 14:13

That's brilliant news, so pleased for you both. Have a lovely break.

Love, Fiona.

User

Posted 20 Jan 2015 at 15:18

great news Allison, I am sure the RT will alleviate the hip pain.
love to John
xx
Mandy Mo

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