Advanced prostat cancer part 2

User

Posted 11 Mar 2015 at 21:25

Hi julie
just been catching up on your posts sometimes I hold back from posting Lynn has alredy said about the drop in psa.
If you remember Erics psa kept falling to the best it had ever been.
Trevor and Eric both with heart and other medical problems still feel Eric should never had chemo but on abby.
Hope i haven't upset you and I agree not to burst his bubble just keep him happy and please take care of yourself please.
Thinking of you both often
Carolxx
p.s. Looks like you have a new friend posting lol.

User

Posted 12 Mar 2015 at 18:55

It's lovely to hear from you Carol, I hope that life is getting easier and you are finding some strength to get you through. Please never worry about posting things that might upset me . It is important for others to read that a falling psa with no new or extra treatments can be a sign that the cancer is advancing.

I was glad that Lyn mentioned it , as newbies may not be aware that this can be the case. It was my first thought when Dr T announced the drop.

I am going to do an update soon but just wanted to say hi.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Mar 2015 at 19:09

I have just been reminded very tactfully by a dear friend (I wont mention any names) but he wears a cape and does an excellent taxi service.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif that I haven't updated in a while. So here goes.

Life well its pretty good, the days are getting warmer, the nights are getting lighter summer is on its way and we are fast approaching our Cancerversary of 2 years in May who would have thought it. Certainly not me.

Trevor's breathing is well remarkable in fact better than it has been in years, what ever they gave him in the hospital (he described them as HORSE antibiotics have worked a minor miracle. After all that time of nebulisers and steroids plus the baby Aunty Bs , well as the saying goes Today is a good day and yesterday and the day before that and as for tomorrow we will face that when tomorrow gets here.

Who knows he may be back on the ride on any time soon.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Next Onco visit is 10th April so a few weeks away, all good wishes will be gratefully received.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif I have had some minor and I stress minor worries, he banged his leg a few weeks ago and it came up like an egg (you know when a child knocks there head) it was his knee so of course I immediately thought OH CARP knee Cancer. He got really angry and said NO I have just smashed my knee in the barn door. I am trying to keep an eye on it quite literally (without him noticing) but it is a bit of a give away when we are having a conversation and I am staring at his knee.

He also seems just a tad more tired ( again not really sure why I am surprised) maybe I just enjoying worrying.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif then there is the colour I am not sure if any one has noticed and I may have mentioned it a few times Trevor is of Ethnic persuasion http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif I have to stop laughing at my own jokes. The paramedics always ask is he going blue.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif That puts a whole new meaning on the term coloured fella , well can't quite explain it , but not as brown as usual kind of washed out, can't use brown as a descriptive either that's not right or allowed so not as Black as normal .

I will be mentioning all of the above to our Onco, it could be a very colourful appointment.

We have a fun filled and busy Easter planned, family gathering, Si Superman visit with the twinshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif . Dog shows and Easter egg hunts, one thing I still get the collywobbles with is planning anything in the future because when you only live for today it is a bit difficult but as a very special guy said Life Is For Living. So I am know back into the planning ahead mode.

Much love to everybody.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Mar 2015 at 20:58

Julie SS
I am no knee expert, I do have two actually one on each side and they sort of hold the top half of my leg to the more useful bit. I know when you bump one it bolody hurts and swelling often ensues. As to watching it intently I can promise you that does not make it or anything else go down (as far as I know and IMHO) I have no smiles on my tablet or I would put one or two in now and then.

As for Trev's colour then it has to be a tumeric side effect, that or a lack of action on the ride on in the sunshine. Or not enough of my jerk chicken and carrot cake? I bet as soon as he gets outside in the spring sunshine he will start to go a little darker I always do?!!

I know the cancerversary's are always here for someone but I have to say celebrating 2 years with you and Trevor is going to be party time for me .. I never ever would have thought it possible with such an outrageous PSA and other results at diagnosis. All those blue light rides, heart issues and asthma a thousand and one puppies later and here you both are. Shamazing I love you funny, warm, bubbly and slightly crazy Lady

xx
Mo

User

Posted 25 Mar 2015 at 22:15

Oh julie
You are truly a ray of sunshine. Can't quite stop laughing at the idea of your gaze constantly seeking out Trevor's knee, it's quite weird actually and he must feel like he's got a stalker for a wife. Hopefully the swelling will go down but I do find everything takes longer as you get older, including swellings going down... Frankly, we are sitting watching telly with John sat with his Pjs rolled up with cold flannels on his ankles to reduce both swelling and intolerable itching, between you and me, it's not a pretty sight, blooming side effects eh?

I will be with you in spirit on the next visit, I am so grateful to be able to wish you a happy cancerversary, here's to many more of them.

Lots of love
Allison xxx

User

Posted 26 Mar 2015 at 10:03

Hi Julie,

So happy to read your update, certainly it has been a good news week, from Bri (more still to come) Kevlaa and now Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Girls are really looking forward to coming down but thanks to Mo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif i feel i need to come bearing gifts, now this carrot cake thing i am sorted, cake mix and some carrots http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif but what is gerk chicken, i have the chicken but cant find gerk anywherehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Mo should i be looking in the freezer or is it a tin, the girls at sainsburys looked at me as if i amhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif nuts.

Would Trevor be happy with a peanut butter sandwich i promise to put turmeric on it.

Love from us all here

Si xx

PS cant wait to see the lumpy knee

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

User

Posted 26 Mar 2015 at 20:18

Julie,

Best wishes for the next appointment. Perhaps you can train your puppies to pull the ride on with Trev aboard resting the knee ,getting some vit d from the sun.

Atb,El.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User

Posted 26 Mar 2015 at 22:20

Julie I had a vision of you and Trevor having a conversation whilst laying in bed. Trevor saying "it's swollen from banging it" but of course he can't see you as your head is under the duvet staring at it and making muffled noises.

Si if you are struggling to find some gerk....why don't you try some gerkin and make gerkin chicken instead ;-)

Good to hear the two year anniversary is upon you.

Bri x

User

Posted 26 Mar 2015 at 23:24

Julie, your posts, whatever you are writing about, always make me smile, I remember Shirley asking an American, of Trevor's ancestry, how they spot a bruise and apparently it goes a purply colour!

Good luck with the next Onco visit.

Chris. xxxx

User

Posted 07 Apr 2015 at 22:07

I know I am a bit late in the day but HUGE HANKS for all your replies guys, I know I say it many times but I dread to think where I would be without you all , you really are my support network my safety net to catch me when I fall.

So what has been happening well the knee has healed so I think we can safely say that it was just me being overly dramatic as usual and knee cancer is not on the very long list of Trevor's very long list of Comorborties (sorry I can't spell that)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif .

The breathing is still Good I can't quite believe it after such a long time with the steroids and Auntie Bs , it really is a one hundred and ten percent turn around. I could get tearful at this point because his Asthma is pivotal to how he functions day to day . He has struggled so much throughout out our Pca journey with his breathing that it is just a minor miracle and a miracle that I am so grateful for.

So blood test done today ready for onc visit on Fri, my dillema is this if the psa has had a further unexplained drop do I

A - Go into over drive and ask for further testing obviously thinking that we are in shark territory.

B - Let Trevor be Happy

C- Try and talk to our Onc on the quiet (this is not going to be an easy option)

D- keep going regardless.

BFN

Julie X

Edited by member 08 Apr 2015 at 10:08 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Apr 2015 at 22:40

B definitely - and C if you get the opportunity xxx

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

User

Posted 07 Apr 2015 at 23:24

Julie and Trevor,
Good luck for Friday.

I'd say B, and yes C if you are able, and an E for you entertaining us.

Big hugs,

Chris.

User

Posted 08 Apr 2015 at 07:38

It might depend on how he is feeling on the day?

But, B and C sound good.

Hope it goes well for you both.

dave

User

Posted 08 Apr 2015 at 08:29

Hi Julie
B C sounds good and of course
H. for that wicked humour of yours
good luck for friday.
Carol x

Edited by member 08 Apr 2015 at 08:35 | Reason: Not specified

User

Posted 08 Apr 2015 at 08:55

It's a B from me too
Good luck for Friday
Si xx

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

User

Posted 08 Apr 2015 at 09:49

Good luck and best wishes for Friday
Arthur

User

Posted 08 Apr 2015 at 13:08

Hi Julie & Trevor,

Just wanted to wish you good luck for Friday. I'll be thinking of you both.

Steve x

User

Posted 08 Apr 2015 at 13:20

You will do D and C regardless so let Trevor be happy too! Hope all goes well Friday. Look forward to some good news!

User

Posted 08 Apr 2015 at 14:24

Julie

dismiss A (nothing you can do to change it)

definitely B ..you just had to see that huge grin on Trevor's face when he had all his sons with him over the Easter weekend. He is happy, very happy so let him stay just as he is, after all he has been through he deserves to be

C .. maybe if you get a chance as it may at least give you some indication of what, why etc.

D .. my Dearest is just you all over, it is you, it is what you do and always will do Nuff said.

Others have given you E & H so for my part well there are only 2 letters I can give and they are both a lot further down the alphabet and are both the same..... SS my Soul Sister.

Make sure you also create time for you to be happy, I know just how hard it is for you to stop for a while and think of just you ....

I might be sitting thousands of miles away on Thursday when Si Si superman has his review and on Friday when you see your Onco but for every second you will all be in my heart and I will be thinking of you. I will be checking in here as soon as I land at Gatwick on Saturday morning and can get WIFI and will call you and Si as soon as I can.
love you Shamazing Lady
xx
Mo

User

Posted 08 Apr 2015 at 20:31

Hoping all goes well for Friday Trevor and Julie.

Julie I am sure you will choose to do what is right for Trevor....you have so far :)

Take care

Bri x

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