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Advanced prostat cancer part 2

User
Posted 07 May 2017 at 01:15

Lovey, T is superhuman, no doubt about it, but I am pretty sure that it is your grit and determination that keeps him going .....

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

User
Posted 07 May 2017 at 01:16

....... Or perhaps it is the strap-on :-/

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

User
Posted 07 May 2017 at 01:32

I must be feeling a bit maudlin. I just spent ages looking for your brilliant train poem and finally found it on page 2 of this thread along with some of the funniest posts ever - look back and see how far you have come since autumn 2014 xxx

For newer members, I recommend page 2 as essential reading but have a hanky nearby.

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

User
Posted 07 May 2017 at 10:06

You managed because you had to but look what you gained.

4 extra years with the love of your life. Yes there have been up, downs and lows and I'm sure there have been times when you wouldn't have wanted to put any of you through what happened in those four years, especially your lovely boys who have had to learn very early on that life is fleeting.

What else have they gained though in that time? They've gained the knowledge that you never give in. They've gained the knowledge that love can surround you and even if it can't make you whole again, it can offer the comfort blanket that will swaddle you and make you feel better even if only for a limited time.

They have seen their dad conquer his physical limitations and they have seen their mum supporting him every step of the way.

In spite of, because of, what your boys have grown up with this last four years, they will be men you can be proud of.

You and their dad have moulded them into worthwhile human beings. Not only should you be proud of Trevor and yourself for fighting this disease but also that despite everything else you will have both left a legacy of hope and determination.

Love to you all

*****

We can't control the winds - but we can adjust our sails
User
Posted 07 May 2017 at 10:39

Hi Julie

Throughout the 4 years you have always kept me smiling and it is the humor that keeps me going.

So what will be our new target http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif I find it so difficult looking back to the beginning of yours and mine thread all of the guys there that offered so much advice and sadly no longer with us.

but on a more lighter note we went to see Micky Flanagan last night and he started with how men weeing habits change as they get older it was called P*ss patch, now this should be played in every urology department in the country.

Girls want to know if any puppies are due soon ??

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 May 2017 at 10:45

You've shared your trials and tribulations with us Julie and had us in tears of sadness and laughter in equal measure. Yes Hope is something to cherish but so is the support of family and you are providing that in bucket loads

I hope today is a better day for T and you and the kids.

Let's all keep hoping for that cure

Bri x

User
Posted 08 May 2017 at 09:53

Hello Julie,

to reach 4 years of suffering with this illness, is absolutely amazing.

it is yourself and your family, who have rallied around Trevor; such love is what keeps him going. And Trevor has such a strong spirit within himself, and determination. Long may this continue.

Plus we are now being blessed with some lovely warm weather.

 

Frank.

User
Posted 08 May 2017 at 20:23

Dear wonderful, hopeful Julie

Congratulations on your 4thaversary... Johsan has put it brilliantly (she has a way with words that one). But she has missed one thing out and that's the mad hope that you have sprinkled in bucket-loads among us lot. That's been worth the world to me - and clearly to many many others on this site.

Thank you for being awesome.

Lots of love

Ruth (Eleanor)

 

User
Posted 08 May 2017 at 20:55
Many best wishes to you both on this achievement. Wishing strength and the will to make as many more as you can.

Bazza

X

User
Posted 28 May 2017 at 01:13
So what's been happening in our household I am a bit late updating because we had a bit of a drama. I know what you are thinking ( not another one ) it was the dog this time and not Trevor.

Little Lilly delivered 3 puppies at home all was going well then she got into difficulties of course it was 2am ( it always is when you need an emergency vet ) so I had to drag Trevor out of bed and we did the Nee Naaah bit ( that's code for a pet ambulance) πŸ˜‰

3 more healthy puppies were delivered by C Section the one that got stuck didn't make it . Mum and babies are all doing well know 2 weeks on .

Trevor stayed in the car and slept while I paced up and down inside the vets like an expectant parent.

I always plan in my head to be organised and READY for any emergency and by READY and I know this is really vain but I actually plan my outfit in my head it's nothing fancy just dressed will do and wearing shoes would be good .

Of course that is never how it happens so wether it's A&E or emergency vet I am generally unwashed , hair not brushed , wearing my red fluffy dressing gown ( the one with the hood and the egg stains ) and a pair of werewolf slippers. πŸ˜‚

I am seriously thinking of having an emergency clothing bag by the door πŸ˜„ Might even put some lippy in . I know all of you guys are reading this and thinking what is she rambling on about trust me it's a girl thing .

So scores on the doors !

PSA down from 4086 - 3804 I know still huge numbers but flipping heck it's a drop and Trevor's face lit up the room. I do believe that Abbi is working it's keeping a lid on it. It has never driven it down to what we had hoped but and you guys know I am famous for my buts I honestly think it is doing something .

The icing on the cake !

ALP down from 201 - drum roll ! To 140 . We started Raduim with ALP at over 400 so we are really happy with that ( for those that don't know ALP is measuring activity in the bones and 140 is pretty much near normal.

Time for a song I think it's got to be sister act OH Happy Day !

We are still waiting for the report on the heart tests apparently a letter has been sent to our gp so we are chasing that up but I am assuming because there hasn't been a follow up appointment that there isn't a major issue . Fingers crossed symptoms have settled .

So we are ticking along still driving and pretty much pain free still gardening in fact he was cutting the grass this morning with the flymo in the rain , I know I did say do you think that's wise , his answer was if Heart attacks , strokes and cancer can't get me then a little bit of rain has got no chance . Men 😀

The biggest problem at the moment apart from him cutting grass in the rain is the osteocrenisis I really don't want to put any one off having Zometa it worked brilliantly for us for ages and what Trevor has as a side affect is so rare .

He has to syringe salt water in the gaps in his jaw after every meal and nothing is stopping the continuing abscess in fact 3 weeks ago it has burst out of his skin on the side of his jaw this is continuing to leak puss. It goes down and then within days it comes back again. He has been on pretty much constant Aunty Bs . It is going to be back to the dentist after the bank holiday . We were warned that the healing process could take a long time .

So at the moment he is back on soups / if any one has unusual soup or soft food recipes I would love to hear from you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 May 2017 at 09:28

Thank you for the brilliant update Julie.

I'm so pleased that the treatment is doing it's stuff, although it must be grim for Trevor with the osteocrenisis . What a bugger eh.

I can see where Trevor is coming from with the comment about mowing in the rain and his various problems but I'm pretty sure that electricity and water don't mix haha (which I am sure he is completely aware of)

Looks like he was sticking his two fingers up to fate and saying "Go on, I dare you!"

As for the puppies and the emergency bag, it's an excellent idea. Many years ago I got carted off as I stood, including the manky slippers I had been in and out of the garden in and left it to John to bring me in stuff like nightwear and soap bag. Of course, nothing was where he expected it to be and you wouldn't believe the mishmash I got. No soap bag for a start, just a flannel and a bar of soap in a clear plastic bag. Oh the shame!! We accidently left the slippers behind when I was allowed home and I was too embarrassed to go back and claim them.

After that I packed a small suitcase with everything in it, including new slippers, fancy nightie. a new cotton dressing gown, new soap bag, all colour matched.

Of course it never got used or needed for years and years and by the time I could have done with it, I'd got fed up keep dragging it out so dismantled it all and used it for everyday.

I should have left it where it was because in the end it would have been handy.

Do it girl, do it. You know it makes sense !!

Edited by member 28 May 2017 at 16:52  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 28 May 2017 at 10:56
Ahh Julie, you always manage to make me laugh. And you just described me to a tee (unwashed etc) when we was at what is becoming one of our regular 2:00 am trips to the hospital. great news that the meds are doing their job for Trevor. And pleased to hear mommy and pups are ok. We have retrievers and I know all about the nee narsπŸ˜‚

Best wishes

Yvonne

User
Posted 28 May 2017 at 10:59

Great news. I hope the mouth problems can be resolved.

User
Posted 28 May 2017 at 14:34

This is great news after a difficult week for me (see my entry) to hear such heart warming news is just wonderful.

User
Posted 30 May 2017 at 00:31

You need to move to Tyne & Wear Julie - everyone wears their pyjamas to the shops and thinks nothing of it!

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

User
Posted 31 May 2017 at 10:09
Julie

You need to write a book, keep going gal.

Thanks Chris

User
Posted 16 Jun 2017 at 21:00
So another dip in the roller coaster ride Trevor is in hospital he was taken in on Wed by ambulance with severe chest pain . We weren't sure if it was his heart but it turns out it is the Mets in his sternum . He is not able to take in a deep breath without pain.

We had oncology on Mon and

PSA up from 3838 to 4722

Alp fairly stable last month 140 up to 144

The Wiz on mon advised continue with Abbi as although there is another jump in PSA his pain level remained the same fast forward 48hrs and everything was completely different he said his pain level in a score of 10 was a 9.

He is having morphine through a drip and a strong concoction of other pain meds. He is not eating very well which is very unlike Trevor he says the hospital food has seriously gone down the pan since his last visit.

So I am fetching him home made food tomorrow, the blinking abscess has also come up again and the plan is to lance it rather than give more antibiotics.

They have discontinued Abbi .

So it looks like Father's Day will be around his bedside. The boys have ordered Father's Day cards with there photos on and 2 T Shirts , one with there photos on saying !We Love You Dad !

The other one says

Trevor

The Man

The Myth

The Legend

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Jun 2017 at 21:47

Perhaps they could also add Our hero!!

What lovely boys you have. I hope Trevor gets some relief, which in turn I know, will ease your burden even if only a little bit.

Father's day in hospital may not be the ideal but it will still be very very special.

Enjoy it all as much as you can

We can't control the winds - but we can adjust our sails
User
Posted 16 Jun 2017 at 22:07

Oh love, I am sorry to see this. You are on my mind, and I will be thinking about your beautiful boys and how pleased Trevor will be with his t-shirts on Sunday xxx

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

User
Posted 16 Jun 2017 at 22:12
Happy Fathers' Day to you all - even if you have to have it in hospital

Ulsterman

 
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