Guys I don't deserve your lovely comments although they have cheered me up no end , well cheered me up and made me cry in equal measure. Thank you all of you.
It's funny isn't it when the going gets tough we head for home because home is where we feel safe and home for me when the going gets tough is right here on the forum .
Not sure if any of you have noticed but I have been told that I have a brilliant sense of humour and I must admit I do think laughter is the spice of life , well apart from Turmeric that's also a pretty good spice.
I just had a flash back to my dads funeral , I loved my dad beyond measure and still do my mum and dad had a balcony on the front of there house and myself and my brother decided to be there together and watch people arriving . Everything was very solemn and dignified until my Auntie Rita arrived (she had a shortened leg and wore a built up boot) hence her driving and especially her parking wasn't very good. She took 25 mins to park and managed to flatten the 4 cones put out for the hearse. She then went on to blame my Uncle Bill in a very loud voice saying his " back a bit " forward a bit " was to blame . I could hear my dad chuckling as well .
Laughter is the best medicine but some times it is hard and at the moment even I am finding it hard. the breathing issues are better and the bp has returned to near normal so that's some good news but he has now got pain in his hip and left leg ( Trevor is adamant it's syatica ) me not so sure so very gently managed to persuade him to see the GP. GP has prescribed stronger pain killers his walking is quite bad.
He is sleeping loads and is very low in himself , the teeth situation is still far from resolved and we are still waiting for the second referral . Not being able to eat and chew is depressing him ( Trevor loves his food) . Just made him a fish pie and put some mushrooms in that I thought would be soft but he couldn't chew them.
It's the eve of our eldest sons birthday tomorrow he will be 17 , that's the hardest part of all of this just trying to make life as normal as possible for the boys. Things to be thankful for though are the last 3 years my handsome boy has had his dad there to see him through from being a child to becoming a young man, I am so happy for that.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Ah Julie - if ever anyone deserved thanks and appreciation in bucket loads it's you. You are such an amazing and positive force on this forum. You provide laughter and wit and advice and comfort and courage - and continue to do so in spite of everything that life and this awful disease throws at you and Trevor. I do hope there are people looking out for you too. You are one special lady.Massive hugs
Love
Eleanor xxx
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Be as brave as a lioness - lionesses are much braver than anything else in the world x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Julie - I've read so many of your messages since my husband was diagnosed with a very high PSA in the thousands. You have faved so much yet still deal with everything with such strength and humour.
I hope your son has a lovely birthday and that you are able to celebrate with him. (My twin boys are 17 too. ) x
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Sallly some thing else in common other than Sky high PSA 😉
Eleanor Thank you.🤗
Lyn so in tune with you and so getting the lioness but don't forget the The Archer "Half Horse ! Half Man who shoots straight from the hip. Always knew you were a fellow Saggi. ❤️️
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi Guys,
I am really not happy to accept this sciatica diagnosis our GP has examined him from top to bottom and said that he thinks sciatica, Trevor has said it is like sciatica pain down his left leg and buttock.
The extra pain killers aren't working and he is shuffling call me a negative Nelly but I am thinking SPCC , he is unable to turn in bed and his walking is severly impaired.
So of course I have googled and come up CCCP presenting with syatica like leg pain ( a rare complication).
He has by 9 am tomorrow morning to be doing a Lionel Richie ( dancing on the ceiling) or it is of to A&E . I won't accept any arguments or procrastination . I have printed od Profs Chee keong Chan findings and it is stapled together.
I am a women on a mission .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Do it Julie. My latest scans showed spread into my spine. My Onco was able to demonstrate the spinal cord was not under immediate threat. If it was RT would have been ordered. All they will have to do is a CT scan, no spread to spine, then no worries.
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Or a call to the Wiz's secretary?
I don't think we have ever discussed this but are the spinal mets upper, lower or the whole lot?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Go for it, Julie. Sounds like this needs a thorough checking out to head off anything sinister. Just seems endless though, doesnt it ? Will be thinking of you today.
FiONA. X
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Dont take any chances Julie, Jamie is always reminding me about this.
Hope you get it sorted
Si xx
Don't deny the diagnosis; try to defy the verdict |
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All those in the real know are advising you Julie and I don't have that knowledge but my gut feeling is drag him down there
We can't control the winds - but we can adjust our sails |
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Always best to check if only to eliminate SCC as an outcome and that needs to be avoided. Thinking of you and Trevor.
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Expect you and Lionel are in A&E now Julie...hope everything is getting sorted out. Thinking of you.
Hugs
Eleanor
x
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What's happening Julie - I am getting twitchy :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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So ok Lionel was certainly not dancing on the ceileing this morning but he was tiptowing around A&E at 11am . Upshot is it's probably not spcc but almost certainly tumours pressing somewhere .
I had to leave him in A&E to get back home , I feel like I am torn in two at the moment.
So urgent MRI has been ordered and referrals to the hospice for pain management. He has slept since getting home .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hopefully the hospice staff will work their magic with the pain control cocktails - I trust hospice pain clinics much more than GPs or hospitals.
I know I bang on about the myth of pain control but these last few days with my stepmum were shocking. In the first couple of days she was writhing in agony but only had 2 paracetamol in 24 hours. When I complained they said she had to request pain relief otherwise they couldn't give her anything despite her being written up for morphine and tramadol by IV. A day later she was in an induced coma.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Oh Lyn I can only imagine what a difficult time you have had, my mum had a very rare type of skin cancer 1 in 500 people world wide and then an even rarer complication . She eventually had a stroke due to the cancer in her brain we sat by her bedside for a week just waiting for the end and there where moments when I just knew she was in pain.
It is the pain part that I cannot deal with I suppose I feel helpless and as a person that likes to organise and sort anything and everything that's when I I go into melt down. None of us like to see our loved ones in pain.
We have had a pain free almost 3 years and that has probably lulled me into a false sense of sequirity don't get me wrong I have always known what the finale conclusion was ! Is going to be.
But and you guys all know I am famous for my Buts did it have to be right in front of Xmas ? There is never a good time but if there is a worst time then this is it.
At the moment I am exhausted but I have to keep everything together for Trevor and the boys and I will watch this space. Just ordered the Brussels and Turkey even though Trevor can't chew it and the boys will be stuffed with selection boxes . Xmas will be as normal .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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The 'Myth of Pain Control' ?
I am so glad Lyn brought that up again.
For years now I've railed against against this practice of mythical pain relief administered by hospitals.
Why the hell do they think a few paracetamol tablets will bring instant relief?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif
I too trust only in hospices to give the correct medication to take away terrible pain.
I've witnessed the total neglect of patients writhing in pain in a hospital bed, and my many experiences go back to 2000 when my mother died.
Nothing has changed in 16 yrs.
You really have to get very stroppy to get anything done, and it should never be like this.
My 87 yr old mother-in -law as just been in hospital for 7 weeks after breaking her femur, and although given good pain relief for the first two days after the op, they then dished out paracetamol.
I can tell you It was very hard to be firm and demanding yet polite at the same time as I argued the case with staff.
By some miracle I never once used the word 'Bollocks!'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif
Wishing you all the best for your stepmum, Lyn.
And Julie, may you and Trevor have that HAPPY & NORMAL Christmas.
Big warm hugs,
George
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Useful to know...
Does anyone have any info about why hospitals are not good at pain relief? Is there some 'unexpected consequences' bit of policy or a counterproductive risk assessment somewhere that prevents doctors/nurses acting in the best interests of patients? Is this a general problem or specific to certain hospitals/departments? If we could find the source of the problem maybe we could find a way to solve it.
E
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So sorry to read your post Julie, I too have left my OH half in hospital this weekend (see my thread). I have read your many posts and you are a real fighter be strong but be kind to yourself xx
Molly
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Before Tony got referred to the hospice team, he contacted his GP about painkillers. She was happy to prescribe a regime that included codeine-based drugs and (later) morphine, and told him to take them regularly, four times a day. When the hospice nurse came on the scene, the morphine dose was gradually increased, and Tony had skilled advice from her about how to tweak and adjust the dose as needed.
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Hi Julie
I hope things are getting a little better. If you are stuck anytime you know I am not fat away
Great with dogs and kids and rubbish at shopping
Call anytime and I will be there
All my best
Si xx
Don't deny the diagnosis; try to defy the verdict |
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George you are just a little Geordie Diamond 💍.
Si thank you so much love you loads and may well be calling soon
Marje what can I say but thank you from an incredibly brave lady.
So things are not so good and seem to be getting progressively and swiftly worse, he has no appetite and is sleeping pretty much most of the time. The Raduim at Addenbrooks is starting tomorrow and he is adamant that he will not accept hospital transport ! He is such a bugger. He is planning to drive himself it is a 2 hour round trip. He can barely walk to get in the car. It is a sharp reminder of where we were 3 plus years ago. I do think this is a result of stopping the Zometa.
I must admit to feeling pretty low and James burst in tears tonight .
From a very lonely and sad lady over and out .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Oh Julie I'm so sorry to see this :-(
Is James your 17 year old?
I haven't got anything useful to say but I hope you can get some rest as you must be completely exhausted. Sending love x
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Julie, such a difficult time. Stopping drugs is often as hard as starting them as I experienced last year. Hopefully the body adjusts but it can take time. I hope we hear better news soon and try and take a moment for yourself you need that too and I know easier said than done.
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Julie, believe me, what you are going through now requires more bravery than where I am now. You are worried sick about Trevor all the time, trying to stay strong for him, trying to look after yourself and keep everything as normal as it can be for your boys, but aware all the time of how much you have lost already. You know it isn't going to end happily, and you may, even in your more optimistic moments, be experiencing "anticipatory grief". I didn't come across this phrase until after Tony died, and it made a lot of sense to me.
PM me if you want to chat about this.
How is the pain control? Have you got the hospice team on the case yet?
Marje
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Sending love and positive vibes to you both , Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Sending strength to you all and wishes that things improve
Chris
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Julie I'm not sure what to say. You are always so upbeat and strong so to hear you feeling like this is very worrying.
You do need some time for you, to recharge and for your boys as well as Trevor.
Please don't feel lonely we are all here
((((((Hugs)))))))
Bri xx
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I am useless with words & spelling but sending you so much love xx,tomorrow my husband is due his 5th radium 223,he is my hero battling this cancer 11years ,been through every treatments and trial never complained .hope radium 223 is good for Trevor xx
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To Julie and all your family
(((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
XXXXXXXXXXXXXXXXXX
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So sorry Julie...thinking of you and sending love and hugs and hope.
xxx
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I'm so sorry to hear your news Julie. You are very much in my thoughts. Let's hope the radium gives Trevor a boost.
As Piglet says I hope you have the hospice involved. When David was feeling really awful they did a big rejig of his medication and it really boosted him.
Thinking of you all
Rosy xx
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So sad to read this Julie - I hope things start to look a little brighter today xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Trying to be practical - have you applied for the financial support Trevor is entitled to? You are so far into miracle land that the Wiz must feel able to sign forms now?
Edited by member 13 Dec 2016 at 11:52
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Just adding my message of love and support to all the others Julie.
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Our hospice nurse sorted all that for us - Attendance Allowance is payable once the diagnosis is "terminal" (less than six months), without having to answer a lot of complicated questions about your specific care needs, and she also got us a Blue Badge. Neither is means tested.
Marje
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I am so sorry to read this Julie I hope Trevor gets his radium today and it gives him a boost. You have always been so inspiring and supportive to everybody on this forum and it's so sad to think you are feeling low but perfectly understandable.
My other half Mike didn't have his second treatment as he couldn't face the journey back to the hospital having only been discharged late on Sunday night. It has been postponed for two weeks.
My thoughts are with you and Carol hopefully Her Trevor's treatment went well. Xxx
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So very sorry Julie, I cannot think of anything to say to make you feel better. We have only been battling this dreadful disease six months but every time I have posted you have always replied and I thank you for that it has meant so much. I just hope you and Trevor can find strength in all the love that is being sent to you both.
You are both in my prayers.
Debbie x
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Julie
Thinking of you both during these tough times.
Thanks Chris
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Thank you so much for all of your lovely comments don't no where I would be without you all and I really mean that.
I am in need of help guys, 1st Raduim transfusion was today when he got home he was feeling sick and is now in agony with pain everywhere . He can't stand unaided or sit up.
Is this normal with the first infusion?
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Julie,
Others on here have posted about Radium 223 and some have reported an increase in pain following the first treatment. I hope Trevor gets some relief very soon. See here:
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/radiotherapy/internal/types/radium-223#Possible
David
Edited by member 13 Dec 2016 at 20:11
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I don't know about Radium but with chemo you are given a number to call if any problems - did you get given one for this?
If not and Trevor is in so much pain then I would call NHS direct for advice. If he gets worse then go to A&E - you won't wasting anyone's time.
I really hope you get some good help tonight x
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I can't comment on Radium but I do remember David having really bad pain when he first started chemo. Apparently due to the 'attack' on the cancer cells? But it sounds like he needs a GP or 111 call to try to get the pain under control asap.
Big hugs
Rosy x
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Thanks guys,
I have rung 111 and they said up the pain meds that we have and thank goodness that has worked, he is now sleeping . They refereed me to the local hospital who then rang twice to say they can't find his notes (really are they serious it was probably Trevor's notes that sunk the Titanic) .
Advice from the local hospital is contact our GP tomorrow to chase up the McMillan nurses I have said it before and I will say it again !Its certainly not like the tv adds ! We are here to help you , what a load of baloney.
Hopefully this is a kick back and we will be back on track soon . I am so glad that I erected the Xmas tree in Sept , that's one less worry.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I'm so glad you got to speak to someone tonight Julie - even if you've got to do lots of chasing tomorrow. I hope you manage to get some sleep x
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You are amazing Julie. Hope the meds go on working and that you and the boys get some sleep tonight too.
Eleanor
xxx
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Dear Julie,
My thoughts are with you. I hope tomorrow gives you both some respite.
I have read your posts over the months and admired your strength and humour.
Thank you Julie, and I hope you both get the right support.
Leila x