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Chemo on the cards

User
Posted 11 Nov 2014 at 10:35
Hi all

We saw our oncologist yesterday and despite the fact that no blood results were available (machine has broken down) we are set on a path towards chemo. Quick recap. Diagnosed Dec 2010, aged 61, Gleason 10, PSA 25 and spread. Usual HT, followed by Casodex (didn't work) and over a year on Stillbestrill.

We have been incredibly fortunate, at the outset we thought that time was very short but nearly four years on, we are fine and enjoying the fact that we have seen our two daughters married and the recent birth of our granddaughter, an epic event in our lives. How wonderfully lucky we are and I am eternally grateful to the treatments available.

So scans in two weeks then an oncology review a week later then, all being well, chemo before Xmas.

We discussed whether we should do abiraterone before chemo but doing chemo first was their recommendation (and our preferred choice) while John is well enough, with abiraterone or enzalutimide still in the arsenal for later. We also spoke about the PSA (doc thinks it's irrelevant in John's case as his PSA has always been low and she said that PSA does not directly relate to volume of disease).

All in all, we feel happy about how things are going, we have more time than we thought we would and things are good. I am still at work but hoping to be able to leave on redundancy (not yet agreed but fingers crossed). I'd like to spend time with my man and not slavi over a hot PC.

I hope this post gives some hope to those with G10s, it's so frightening but here is some prof that there can be life after such a horrible diagnosis.

With love

Allison xx

User
Posted 25 Dec 2014 at 18:30

Yes, just do what you can, when you can! My OH is still fell walking with Advanced Metastatic, albeit it takes a bit longer. We had a lovely Christmas Day 6 miler up onto Ilkley Moor (we had hats tho!) to meet friends to drink mulled wine and eat Xmas cake!

 

Merry Christmas to all on the forum.

 

Glen

x

User
Posted 11 Nov 2014 at 16:03
Allison, I am so happy for you and John and of course your lovely family that treatment is still holding everything at bay, I remember so well our first meeting when you were amazed with a G10 that your journey had lasted almost 3 years and how it was nearly time to change the car!

I think opting for chemo now is a really good idea you may even be able to plan sessions around Christmas, it is a generalism but it seems to work for a lot of men, one week feeling Ok one week of ups and downs and one week ok again. In Mick's case he had a bit of an iffy time days 6-10 and it was in that time that he would eat mashed potato and ice cream (not usually together!) I know others have said that after as little as 2 cycles they could predict when things might not be good, that way they could plan to keep that time set aside as restful and quiet time.

Looking forward to seeing you both soon

xxx

Mandy Mo

User
Posted 11 Nov 2014 at 16:50

Allison

 

I'm finishing my current round of Chemo tomorrow. Twenty doses of Docetaxel http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. Bottom line is that it has worked for me and kept me going (7 year marker coming up http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif). Nothing to fear here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Nil desperandum

Allister

User
Posted 11 Nov 2014 at 17:03

That sounds really positive, Allison, long may things go well for you and John. We seem to have had a recent spate of younger men with high Gleason scores on the forum, good someone has a success story like yours and something to give hope to men diagnosed with this vile disease.

 

Love, Fiona, x

User
Posted 11 Nov 2014 at 17:09

Good luck - may you continue to do well!

Stay Calm And Carry On.
User
Posted 11 Nov 2014 at 18:07

Hi Allison,

It's great to see that positive attitude shining through.

You and John have come a long way since 2010 and done far better than either of you dared hope.

It's an incredible, uplifting story which will inspire anybody new here looking at a Gleason 10 .

I hope you're able to get your redundancy soon, and enjoy years of leisure together.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

 

And look at Allister, 7 years coming up after the most scary of prognoses too.

I've no doubt John will be the same, and we'll all have many more good summer get-togethers at The Mill every June.

 

 

Warmest wishes,

 

 

George

 

 

User
Posted 11 Nov 2014 at 23:42

Hi Allison had 20 doses of chemo 1 x 10 Casodex 1 x 10 Doxetaxal. I found it really helpful to keep a diary of of reactions and you can see a pattern develop so then you can predict good days and bad days. Good luck with the treatment.

Trevor

User
Posted 13 Nov 2014 at 21:56
I love your positive post and wonderful outlook. My dad goes on wed to see onco his Psa has gone from 8 to 12 in 4 weeks, despite the added casodex, I have a feeling that chemo may be on the cards also..x

Best wishes

User
Posted 01 Dec 2014 at 22:02
That's great news Allison, enjoy Xmas and look forward to a great New Year.

Roy

User
Posted 01 Dec 2014 at 22:22

Brilliant news Allison and John, just shows how unique this disease is to the individual

Have a great Xmas (Hic)

Bri x

User
Posted 01 Dec 2014 at 22:38

I'll go to the foot of our stairs, I haven't heard that saying in a long time. If I were you and John I would be running and jumping up and down those stairs shouting WHHOO WHOOOOOOOOOOOOO. Brilliant news Alison now you and John can enjoy your first Xmas with little Dakota and Chemo is still in the box for hopefully a much later date.

Lots of Love.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Dec 2014 at 23:45

Hi Allison & John,

That's wonderful news.  I'm really pleased for you both. You can settle back and enjoy a really good Christmas.  Enjoy every moment.

Steve x

User
Posted 02 Dec 2014 at 07:32

hey Allison and John this is great news. I follow your progress with keen interest as I think my PCa is on a similar trajectory. I know it will get there as it will one day for you too but to have a reprieve is just great, I love that feeling every four months I go. One day it will change but for now christmas looms and you can both have a great time. Good news on the site is so uplifting so really glad to read this.

User
Posted 02 Dec 2014 at 09:02
Allison, I am so very happy for you and John another reprieve and another wonderful Christmas, Now you can enjoy the time with your family even more.

See you on Thursday xx

Mandy Mo

User
Posted 02 Dec 2014 at 12:58

Fantastic news, Allison. So pleased for you and John !

 

Fiona. x

User
Posted 02 Dec 2014 at 13:01

Bloody great news, just the excuse i needed to have a beer with the crazy gang tomorrow http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Dec 2014 at 14:26
Great news best wishes to you both.

Carol x

User
Posted 02 Dec 2014 at 16:51

Hi Alison, havent been on line for a while and tend to be more inclined to read and send positive thoughts rather than replies. Relate to your situation as Bob diagnosed Oct 2010 with high Gleason score of 9. Were also still here 4 yrs on woohooo!!! Maybe starting not to respond to abireterone as PSA rising so maybe entering chemo route too. May you and hubby have a fabulous xmas and hope PSA stays stable a little longer for you.

Love Lesley x

User
Posted 02 Dec 2014 at 17:00

Hi Allison & John,

What fabulous news. Lynn and I are delighted to hear that John is 'trundling along' pretty darn well and still defying the odds!

Such relief all round, and now you can look forward to a really HAPPY Christmas and New Year.

I wouldn't put it past John to be still in the 'chemo queue' next time we meet at The Mill (June 2015).


Once again,

Great news, so happy for you both.


George

User
Posted 23 Dec 2014 at 22:13
Gret news Allison.

Wishing you the best Christmas ever.

Enjoy that little granddaughter!

User
Posted 24 Dec 2014 at 22:22
Hi Kev

What your consultant says it what I beleive and that's why we were disappointed that chemo has been put back, it's made John feel vulnerable. For what it's worth I think your consultant is right.

Regarding the marathon, most people on hormones can barely run to the bottom of their road! No seriously, running is bound to be an excellent thing if you are able, so I'd simply just do what you can and wait and see how it goes if you look at the profile of one of our long term respondents Allahayes, you will find someone who kept playing rugby for a long time through various treatments. It may make you feel a little better.

Merry Christmas to you and my lovely frorum friends.

Love Allison .

User
Posted 25 Dec 2014 at 22:32

Good on ya Glen and keep running Kev...don't let anyone or anything stop you doing what you want ti do

Bri

User
Posted 02 Jan 2015 at 23:10

Allison

Hope John gets the necessary treatment asap. Waiting when you know something is amiss is very difficult to deal with.

All the best for the NY.

Paul

Stay Calm And Carry On.
User
Posted 02 Jan 2015 at 23:27

Did they say how quickly they might be able to see you Alison?

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

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

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 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 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 20 Jan 2015 at 13:15

Hi Allison,

What good, very positive news!

Enjoy your break, relax and SMILE!

Best you both both,


George

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.

Show Most Thanked Posts
User
Posted 11 Nov 2014 at 16:03
Allison, I am so happy for you and John and of course your lovely family that treatment is still holding everything at bay, I remember so well our first meeting when you were amazed with a G10 that your journey had lasted almost 3 years and how it was nearly time to change the car!

I think opting for chemo now is a really good idea you may even be able to plan sessions around Christmas, it is a generalism but it seems to work for a lot of men, one week feeling Ok one week of ups and downs and one week ok again. In Mick's case he had a bit of an iffy time days 6-10 and it was in that time that he would eat mashed potato and ice cream (not usually together!) I know others have said that after as little as 2 cycles they could predict when things might not be good, that way they could plan to keep that time set aside as restful and quiet time.

Looking forward to seeing you both soon

xxx

Mandy Mo

User
Posted 11 Nov 2014 at 16:50

Allison

 

I'm finishing my current round of Chemo tomorrow. Twenty doses of Docetaxel http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. Bottom line is that it has worked for me and kept me going (7 year marker coming up http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif). Nothing to fear here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Nil desperandum

Allister

User
Posted 11 Nov 2014 at 17:03

That sounds really positive, Allison, long may things go well for you and John. We seem to have had a recent spate of younger men with high Gleason scores on the forum, good someone has a success story like yours and something to give hope to men diagnosed with this vile disease.

 

Love, Fiona, x

User
Posted 11 Nov 2014 at 17:09

Good luck - may you continue to do well!

Stay Calm And Carry On.
User
Posted 11 Nov 2014 at 18:07

Hi Allison,

It's great to see that positive attitude shining through.

You and John have come a long way since 2010 and done far better than either of you dared hope.

It's an incredible, uplifting story which will inspire anybody new here looking at a Gleason 10 .

I hope you're able to get your redundancy soon, and enjoy years of leisure together.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

 

And look at Allister, 7 years coming up after the most scary of prognoses too.

I've no doubt John will be the same, and we'll all have many more good summer get-togethers at The Mill every June.

 

 

Warmest wishes,

 

 

George

 

 

User
Posted 11 Nov 2014 at 20:02

Hi Allison,

I have a similar projectory, a year behind you and John, and think second line treatment with casodex is coming soon for me. I so understand that conflict between being grateful for the time you have had whilst facing the disruption that chemo will cause to your lives. But maintaining a positive attitude as you go forward remains crucial and if you can get redundancy this will help to focus your time.

Good luck on your journey as it unfolds I am thinking of you!

User
Posted 11 Nov 2014 at 20:50

Hi Allison and John, great to hear you sounding so positive. Plenty of weapons in the armoury yet.

Hope you get the redundancy so you can both have loads of quality time together

Bri x

User
Posted 11 Nov 2014 at 21:56

Hi Alison,

Well not quite what you would have asked Santa for in different times but I think a wise choice for John. This as you say leaves extras in Santa's sack for years to come. Your story must give so much hope for others with a similar dx.

Give that gorgeous baby a cuddle from me and I hope the redundancy goes to plan.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Nov 2014 at 23:42

Hi Allison had 20 doses of chemo 1 x 10 Casodex 1 x 10 Doxetaxal. I found it really helpful to keep a diary of of reactions and you can see a pattern develop so then you can predict good days and bad days. Good luck with the treatment.

Trevor

User
Posted 12 Nov 2014 at 15:06
Hi Allison what a lovely positive post, good luck to you and John.

Hedgehog

User
Posted 12 Nov 2014 at 15:17

Hi Allison,

So nearly 4 years well done John certainly gives me hope. Day 3 - 7 was my worst days on Chemo, lived on ice cream.

Best Wishes

Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 13 Nov 2014 at 07:57

Lovely friend, I am sad that John now needs a new treatment - it would have been not to be in this situation until next year or the year after - but pleased you are getting the order you wanted. You have had such a special year - I hope that the chemo does not affect grandpa's ability to tear all the wrapping paper off baby bear's presents for her!

You are always in my thoughts x

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

User
Posted 13 Nov 2014 at 21:51
Love

Y friends

We are seeing Onco on December 1st, scan already organised for next Wednesday. I assume that they will schedule it to enable us to enjoy Christmas and as Lyn says, our baby granddaughter's first Christmas. PSA finally came back at 7.9 so doubling fast. It makes it clear that this is the right course. We are ready, willing and able. Still nothing on redundancy though, so I am on the edge of my chair waiting to hear.

Love you guys

Allison xxxx

Edited by member 14 Nov 2014 at 19:37  | Reason: Not specified

User
Posted 13 Nov 2014 at 21:56
I love your positive post and wonderful outlook. My dad goes on wed to see onco his Psa has gone from 8 to 12 in 4 weeks, despite the added casodex, I have a feeling that chemo may be on the cards also..x

Best wishes

User
Posted 14 Nov 2014 at 19:39
Jo

That's is quick, yes I think maybe chemo is in order. I hope that it goes well in Wednesday, pleas let us know.

Love

Allison

User
Posted 01 Dec 2014 at 21:38
Well chaps, I'll go to the foot of our stairs!

There we were full of adrenaline and ready for the fight, finally get in to see the oncologist and he says, well John, your latest PSA has fallen, I think we'll leave the chemo for another three months. To say we were taken aback is putting it mildly. Of course we are over the moon, but how to explain this feeling we both had of "oh" and having the wind taken out of our sails. I think it was down to the fight or flight instinct, and an overdose of adrenaline.

I did ask the oncologist if he saw many men with high Gleason scores whose Cancer reacts like John's does and he said yes. Well that's great news actually, here we are four years down the line and still in the chemo queue.

I don't want anyone to think we are not immensely grateful for our wonderful good luck, we are, we just felt weird at the time. Anyway, no chemo this Christmas, so alcohol will be consumed after all.

Happy, happy days my friends.

Love Allison xxx

User
Posted 01 Dec 2014 at 22:02
That's great news Allison, enjoy Xmas and look forward to a great New Year.

Roy

User
Posted 01 Dec 2014 at 22:22

Brilliant news Allison and John, just shows how unique this disease is to the individual

Have a great Xmas (Hic)

Bri x

User
Posted 01 Dec 2014 at 22:38

I'll go to the foot of our stairs, I haven't heard that saying in a long time. If I were you and John I would be running and jumping up and down those stairs shouting WHHOO WHOOOOOOOOOOOOO. Brilliant news Alison now you and John can enjoy your first Xmas with little Dakota and Chemo is still in the box for hopefully a much later date.

Lots of Love.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Dec 2014 at 23:45

Hi Allison & John,

That's wonderful news.  I'm really pleased for you both. You can settle back and enjoy a really good Christmas.  Enjoy every moment.

Steve x

User
Posted 02 Dec 2014 at 07:32

hey Allison and John this is great news. I follow your progress with keen interest as I think my PCa is on a similar trajectory. I know it will get there as it will one day for you too but to have a reprieve is just great, I love that feeling every four months I go. One day it will change but for now christmas looms and you can both have a great time. Good news on the site is so uplifting so really glad to read this.

User
Posted 02 Dec 2014 at 09:02
Allison, I am so very happy for you and John another reprieve and another wonderful Christmas, Now you can enjoy the time with your family even more.

See you on Thursday xx

Mandy Mo

User
Posted 02 Dec 2014 at 12:58

Fantastic news, Allison. So pleased for you and John !

 

Fiona. x

User
Posted 02 Dec 2014 at 13:01

Bloody great news, just the excuse i needed to have a beer with the crazy gang tomorrow http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Dec 2014 at 14:26
Great news best wishes to you both.

Carol x

User
Posted 02 Dec 2014 at 16:51

Hi Alison, havent been on line for a while and tend to be more inclined to read and send positive thoughts rather than replies. Relate to your situation as Bob diagnosed Oct 2010 with high Gleason score of 9. Were also still here 4 yrs on woohooo!!! Maybe starting not to respond to abireterone as PSA rising so maybe entering chemo route too. May you and hubby have a fabulous xmas and hope PSA stays stable a little longer for you.

Love Lesley x

User
Posted 02 Dec 2014 at 17:00

Hi Allison & John,

What fabulous news. Lynn and I are delighted to hear that John is 'trundling along' pretty darn well and still defying the odds!

Such relief all round, and now you can look forward to a really HAPPY Christmas and New Year.

I wouldn't put it past John to be still in the 'chemo queue' next time we meet at The Mill (June 2015).


Once again,

Great news, so happy for you both.


George

User
Posted 03 Dec 2014 at 19:43

So, so very happy for you both. What a wonderful Christmas this is going to be! Loads of love to you all xxx

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

User
Posted 23 Dec 2014 at 21:42

Hi Allison,

Just read your posts , great news enjoy xmas and don't drink too much

 

User
Posted 23 Dec 2014 at 21:48

Nice to hear more good news Allison. The more the better, gives hope.

Enjoy the holiday.

Dave

User
Posted 23 Dec 2014 at 22:13
Gret news Allison.

Wishing you the best Christmas ever.

Enjoy that little granddaughter!

User
Posted 24 Dec 2014 at 20:19
Sorry for a question on a good post but I am gleeson 9 just diagnosed PSA dropping from 345 to 62 in 1 month but am starting chemo 13 jan, is the forum suggesting this is best left until after zolzdex stops working of as my consultant says bashing it every which way is good? He also told me to keep on running, I am doing the Brighton marathon In April but no idea how stupid that is as I can't find anyone on the inter web who has run more than 10 k on chemo, just as confused an probably naïveté as I was on day of diagnosis. Happy Xmas to all, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 24 Dec 2014 at 22:22
Hi Kev

What your consultant says it what I beleive and that's why we were disappointed that chemo has been put back, it's made John feel vulnerable. For what it's worth I think your consultant is right.

Regarding the marathon, most people on hormones can barely run to the bottom of their road! No seriously, running is bound to be an excellent thing if you are able, so I'd simply just do what you can and wait and see how it goes if you look at the profile of one of our long term respondents Allahayes, you will find someone who kept playing rugby for a long time through various treatments. It may make you feel a little better.

Merry Christmas to you and my lovely frorum friends.

Love Allison .

User
Posted 25 Dec 2014 at 18:30

Yes, just do what you can, when you can! My OH is still fell walking with Advanced Metastatic, albeit it takes a bit longer. We had a lovely Christmas Day 6 miler up onto Ilkley Moor (we had hats tho!) to meet friends to drink mulled wine and eat Xmas cake!

 

Merry Christmas to all on the forum.

 

Glen

x

User
Posted 25 Dec 2014 at 22:32

Good on ya Glen and keep running Kev...don't let anyone or anything stop you doing what you want ti do

Bri

User
Posted 29 Dec 2014 at 02:19

Kev, I think once you start on the chemo and have had a couple of goes at it, you will be able to work out where in the cycle your marathon is going to fall and therefore whether it is at all possible. If the prep falls in the bad week, then you may not be able to take enough sustenance for your body to store energy properly.

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

User
Posted 02 Jan 2015 at 22:53
Well we are getting into uncharted waters it seems. After a difficult Christmas and New Year's Eve we called the oncology department and they are arranging for an urgent appointment. The problem is a severe pain In the illiac bone (the flat bone at the back of the pelvis. He has a large met in this bone and it seems it's causing the issues. Mobility is a problem, getting up and down from the chair or bed is hard for John. Pain meds have been upped, though John is reluctant to take them, despite the pain.

So not sure what's next now, but John and I were not too happy about the chemo being deferred with a rising PSA and it seems we may have subconsciously known something was amiss.

So now we wait.

happy New Year

Allison xxx

User
Posted 02 Jan 2015 at 23:10

Allison

Hope John gets the necessary treatment asap. Waiting when you know something is amiss is very difficult to deal with.

All the best for the NY.

Paul

Stay Calm And Carry On.
User
Posted 02 Jan 2015 at 23:27

Did they say how quickly they might be able to see you Alison?

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

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

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
 
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