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Radium 223 - the highs and the lows

User
Posted 03 Oct 2017 at 11:15

This thread follows on from my previous threads:


http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202 


and


http://community.prostatecanceruk.org/posts/t12891-From-docetaxel-to-------the-interregnum#post159593


On 10/10/17 I will be starting up to 6 x 28 day cycles of Radium 223. I am going to keep a log of my experiences. For brief details of the treatments I've had to date, click on my name. Whilst I'm not yet quite supping at the Last Chance saloon, Radium 223 is the last of the major conventional treatments available for my advanced prostate cancer.


I start Radium 223 in poorer physical condition than was the case just 6 months ago. Then I was going to the gym 3 times a week; now that is no more. I was playing croquet and was able to play for many hours per day; again that is no more. The major reason for this degredation in quality of life has been the development of bone pain in my back over the last month or so. I have constant bone pain in my right hip, lower back, middle back and left shoulder. This is related to the bone mets I have in these areas. I am keeping reasonable control of this pain through the use of Paracetamol, Ibuprofen and Naproxen plus a placebo known as Real Beer. The pain in the left shoulder has been partially relieved by a recent session of RT.


So this is the baseline I start from and against which I will judge the success or otherwise of Radium 223 treatment.


 


 

Edited by moderator 03 Oct 2017 at 17:11  | Reason: Not specified

User
Posted 07 Dec 2017 at 18:27

The emotional roller coaster goes on - sometimes fairly upbeat, often anxious, jittery and tearful, but I'll get there. As you say Julie - normal changes from day to day. Everyday things such as cooking for one rather than two take some getting used to.

The various authorities are being very helpful. As no doctor in our practice had seen David in the period before his death, our GP had to get agreement from the Coroner's Office before he could issue the Certificate of Cause of Death. The Coroner's Office not only agreed without delay (so I now have the Certificate) they called me to let me know and also must have notified the Registrar. I didn't have to call to get an appointment, the Registrar called me to arrange it for next Monday. So sometimes the system works!

I have received loads and loads of cards and letters from neighbours and friends, especially from the croquet club and, of course all your lovely posts on the forum. Many lovely words of sympathy and support. The same words about David have cropped up time and again - kind, generous, encouraging, welcoming, helpful, lovely man, patient, enthusiastic. I think he might have blushed a bit! But they are all true.

The funeral/cremation is arranged for the week after next - that will be small and private. But I plan to organise a get together for friends and family towards the end of January to celebrate David's life, not mourn his death.

This will probably be my last post on this thread. Thanks to you all again for all the support and encouragement you have given me. It is much appreciated.
Love to you all
Linda

User
Posted 01 Dec 2017 at 16:40

Although David found the journey very tiring he is now in his room in the nursing home. I visited just for a few minutes to make sure he was alright. He was very sleepy so I left him to rest quietly.

User
Posted 06 Oct 2017 at 19:59

Don't worry Julie, I'm not giving up. I remain in good spirits and intend to stay that way.

For me quality of life is everything, quantity of life is unimportant. I want to live and enjoy what remains of my life as well as I can. I love living with and loving Mrs_ColU but when quality of life becomes really compromised then I see little point in continued existence.

I've said it before, Mr Spock is my hero. I have his logical, green, vulcan blood in my veins. He'd understand where I'm coming from.

All that said, this old dog is still barking, wagging his tail and drinking his beer. And he'll drink a few more yet.

User
Posted 06 Oct 2017 at 20:50
Originally Posted by: Online Community Member

I love living with and loving Mrs_ColU



What a lovely thing to say x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Oct 2017 at 08:32

Originally Posted by: Online Community Member


maybe a further session of Chemo will be good for you, what do you think?


Dave,


Whether or not I would have further chemo will be solely determined by what my Quality of Life (QOL) was like at the time it was recommended by my Onco. If my QOL is good, I'd have further chemo without a quarm. If my QOL is poor, I would have serious doubts and would need convincing that there was more to be gained than lost. As I've said before, QOL is everything, extending existence for no other reason than putting off the evil day is of no interest to me.


It's good to hear you are going well.


David

User
Posted 25 Nov 2017 at 20:57

Thank you Ruth.
That's really helpful.
One suggestion I would make to any couple on this very rocky journey that we find ourselves on - from the right at the beginning when you get the diagnosis, through all the treatments to the end. There are so many choices and so many decisions to make. Sometimes it's very difficult to communicate - the emotions get in the way and the words don't come right because you dissolve into tears. Or because you feel you are treading on eggshells and are frightened of being misunderstood.

So write it down - a love letter if you like. Spend time crafting it so it says exactly what you want it to say and then give it to your partner. So there are no misunderstandings. Not all the time - just when you feel it's really important. David and I have done this just a couple of times during the last 3 or 4 years and when we have it has been so helpful to us both.

User
Posted 03 Oct 2017 at 20:49

All the very best wishes to you David in the next part of your journey

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 06 Oct 2017 at 19:28
Phew David ,
Your last post and words definitely struck a chord with me I know I am known as the joker of the pack but if it was for myself then I think I would feel immense calm at saying “I don’t want to play anymore “ .
I think it would for me be A taking back control moment a “ I am going home and taking my ball with me “ kind of feeling.

Of course then there are the Trevor types and trust me if anyone even tried to get him near the door of The Last Chance Saloon well then you would have a major fight on your hands.
Because he will never accept defeat.

We are all different , all unique and I just want to end on this upbeat thought.
We are 2 months away from our start of Raduim 1 year Anniversary , still going and still here ! Battered Bruised But still here. 🤗
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Oct 2017 at 21:54

Thank you for this post and your total honesty. I believe I walk in your shoes but maybe not as far yet. I’m totally QOL based and I know that won’t change having nursed many end of life patients now in my new temporary job. Not sure I’ll even stretch to Chemo tbh. I think only pain itself will decide my treatment path , as no-one likes pain.
All the best
Chris


If life gives you lemons , then make lemonade
User
Posted 07 Oct 2017 at 08:30

Originally Posted by: Online Community Member
So another Trekkie you and Trevor would make a great team.


In that case Trevor will understand why I liken PCa to the Borg. The problem with the Borg was you'd zap one with your phaser and down he'd go and then zap another one and he'd go down as well and then they would adapt and the phaser was no good anymore so you had to find a new weapon or the Borg would get you. Just like PCa.


Live long and prosper.

User
Posted 07 Oct 2017 at 14:42

I just understand your view absolutely. When I first read it I simply thought yes that’s my future too. You delay as long as your life is reasonable and then that point is reached. The inevitability takes away the sting. I feel lucky I have had much longer than predicted but never forget that moment will come. It’s harder to prepare family and friends.

It’s not a morbid thought, it’s simply the natural passage of time. Unless another disease or illness intervenes it keeps at least a sense of order to the future.

User
Posted 08 Oct 2017 at 18:52
Originally Posted by: Online Community Member


Masochists do. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Sorry, I just couldn't resist.


I'll get me coat.



Reminds of of Dave Allen I think...

A masochist asked a sadist to hurt him... the sadist said no

I’ll get my coat as well
User
Posted 10 Oct 2017 at 19:42

First Radium 223 infusion administered today.

I will report on any changes in my health, good or bad, as they occur. Therefore, no report means nothing has changed.

User
Posted 22 Oct 2017 at 11:04

Bad news


Got up Friday morning, off to wash, coughed, spat into basin, foook me that's blood! Also found that after a couple of very minor collisions where items of furniture had leapt out and tried to assault me, that I'd developed severe bruising of a colour that any Roman Emperor would be proud of (dramatic looking but not painful). Get on phone to radium doc, explain what's happened, he thinks this isn't caused by the radium but says go see your GP. See GP (not my usual one) she listens to my chest and is reasonably happy but says we're taking bloods. We will contact you if anything is wrong.


Got up Saturday morning, off to wash, coughed, spat into basin, foook foook foook, that's more blood than yesterday! Rang 111, they put me onto Devon Doctors (the out of hours GP service), the doc asks lots of questions and says she is concerned it could be a blood clot(s) in the lungs, get your sorry arse down to us at the RD&E. Do so, lots of questions, more bloods taken and referred on to the Ambulatory Medical Unit. See doc after a couple of hours, lots of questions, she says the bloods are OK apart from the platelets which are down to 95. The low platelets explain the extreme bruising. She also fears a blood clot and sends me for an CT scan with contrast. Canula fitted. Scan done at 3.30pm. Wait for results. Doc comes back at 6.30pm and says "good news, no blood clot". She believes the combination of the PCa, the pneumonia I had this summer, the chemo and the RT has damaged the lungs. She advises that I am very cautious during periods when my platelets are low. She believes the oral blood will correct itself once the platelets rise again. I will quiz my radium doc on typically when in the 28 days radium cycle that the platelets are low. I am equating this with the neutropenic period one has each cycle when on chemo.


Good news


I'm pretty confident now that my bone pain is reducing. The radium may well be working. I have reduced the pain killers and hope to trial with no pain killers in the next few days.


Lessons for those that follow me


Make sure you understand when your platelets may be low in each cycle and take extreme care of yourself.


Trust that the radium will reduce your pain.

User
Posted 17 Nov 2017 at 17:56
Dear Linda
I’m so sorry to read that things haven’t really improved for David, he’s been an absolute star of this forum and though I don’t come here so often any more I always look to see how he’s doing as John is also on Radium 223. I only wish David hadn’t got that blasted pneumonia, it might have been a very different story. It can’t have been easy to have had to hear the latest news, it’s something I dread but know will come. I have no idea of how I will cope. My heart goes out to you and David.

I’m a Devon girl (hence the nickname) though I no longer live there but family still do, so every mention of the RD&E brings a picture to my mind (my sister passed away there this year, in the respiratory ward), I must admit the care my sister received was second to none, I hope David has been treated equally as well, even though hospitals are not places anyone wants to be.

Please send him my love and best wishes, I really have everything crossed for the third antibiotics to work. Come on David, you can do it mate.


Love Devonmaid xxxx
User
Posted 26 Nov 2017 at 17:44

Ah, just seen Ruth's reply which crossed with mine. In the case of my step-father-in-law, there was no medication; the confusion and other-reality was a result of becoming dehydrated. In his case and my mum's, I was told that the brain tells the body that food and water are no longer needed and as the body starts to close down this triggers natural pain relief. .. the conscious brain simply doesn't acknowledge the pain. A side result is confusion and past times being replayed. Horrible for family and friends to witness but a happy place for the person that is slipping away.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Nov 2017 at 17:54

At the care home I work in we put classic fm quietly on a radio for the end of life. They hear it I’m sure. Its distressing for sure for all , but a privelage to spend time with someone so precious in their time of need
My thoughts with you xxx

Edited by member 26 Nov 2017 at 19:04  | Reason: Not specified


If life gives you lemons , then make lemonade
User
Posted 02 Dec 2017 at 18:24
So very sorry to read this news but glad that you were with David at the end.
My thoughts are with you and your family.
User
Posted 03 Oct 2017 at 11:15

This thread follows on from my previous threads:


http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202 


and


http://community.prostatecanceruk.org/posts/t12891-From-docetaxel-to-------the-interregnum#post159593


On 10/10/17 I will be starting up to 6 x 28 day cycles of Radium 223. I am going to keep a log of my experiences. For brief details of the treatments I've had to date, click on my name. Whilst I'm not yet quite supping at the Last Chance saloon, Radium 223 is the last of the major conventional treatments available for my advanced prostate cancer.


I start Radium 223 in poorer physical condition than was the case just 6 months ago. Then I was going to the gym 3 times a week; now that is no more. I was playing croquet and was able to play for many hours per day; again that is no more. The major reason for this degredation in quality of life has been the development of bone pain in my back over the last month or so. I have constant bone pain in my right hip, lower back, middle back and left shoulder. This is related to the bone mets I have in these areas. I am keeping reasonable control of this pain through the use of Paracetamol, Ibuprofen and Naproxen plus a placebo known as Real Beer. The pain in the left shoulder has been partially relieved by a recent session of RT.


So this is the baseline I start from and against which I will judge the success or otherwise of Radium 223 treatment.


 


 

Edited by moderator 03 Oct 2017 at 17:11  | Reason: Not specified

User
Posted 03 Oct 2017 at 17:40

Will be thinking of you. Take care.


Rxxx

User
Posted 03 Oct 2017 at 19:32

I wish you all the best for this treatment and look forward to hearing your progress. Thank you so much for your previous 2 threads which have been very helpful.

User
Posted 03 Oct 2017 at 20:50
Hi
John is going to have his third injection in two weeks. His ALP has dropped to 48 but his PSA has gone up to 42. He finds he feels exhausted for a week after his jab and often looks an awful colour. He has to rest, there is no way round it and sometimes he has to have a day of total bed rest. He suffers from constipation (mainly from a previous round of RT). This is a common finding, some times it’s the runs, but hey ho. I wouldn’t say that he feels any better overall but we will see what the bloods say next week

The jab itself is fine, and the protocol in Oxford is to attend a clinic the week before for a review and to review the whole process after three months.

Good luck, I hope it helps, I’m sure it will. Looking forward to seeing your updates

DM
User
Posted 04 Oct 2017 at 07:59
Hoping this works for you David

All the best,

Arthur

To quote a phrase from a telly programme, but not quite - Keep on .........drinking (real beer that is)
User
Posted 04 Oct 2017 at 11:32
Good luck with the Radium 223. My dad has been refused it but I'd be very interested to hear how you get on with it. Thanks for your previous advice relating to my dad. It enabled me to research the options and ask the consultant about them. He refused them all but at least I tried. He has now been ejected from last chance saloon but I hope it's a long time before you get there
User
Posted 06 Oct 2017 at 21:27
So another Trekkie you and Trevor would make a great team .
For me it has to be Buz Lightyear !
To Infinity and Beyond ! To Infinity and Beyond my friend.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Oct 2017 at 08:40

Originally Posted by: Online Community Member


I’m totally QOL based and I know that won’t change having nursed many end of life patients now in my new temporary job. Not sure I’ll even stretch to Chemo tbh. I think only pain itself will decide my treatment path , as no-one likes pain.


Don't discount chemo yet Chris. Read my Docetaxel highs and lows thread before making that decision. Chemo can relieve bone pain. For me, chemo wasn't a problem until I got pneumonia.


Keep an eye on my experiences with Radium 223 as well. It's also meant to be good for bone pain.

User
Posted 08 Oct 2017 at 13:24


Masochists do. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Sorry, I just couldn't resist.


I'll get me coat.

User
Posted 11 Oct 2017 at 08:49

It was a normal office, no lead on the walls and the Doc and his techie were dressed normally.

The first question I asked them, having read of Trevor's experiences, was "are you going to wave a Geiger counter over me?". They seemed amused by this and said any use of a Geiger counter would be for their protection rather than mine.

Mrs_C and I found the whole process of the infusion and the willingness of them to deal with all our questions made the appointment a simple and non-traumatic experience.

User
Posted 11 Oct 2017 at 08:59
I hope the whole experience goes well for you and that you get a good outcome.

Kind regards

Kevan
User
Posted 11 Oct 2017 at 12:46
Sounds like you’re off to a good start David.

Long may it continue.

Arthur
User
Posted 12 Oct 2017 at 23:58
WHAT NO GEIGER COUNTER ! I can’t beleve it 😱
Was it even Raduim ?

That’s like the Enterprise withought it’s Force Field 😄

Spock would be horrified.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Oct 2017 at 15:06

No way a wimp regarding pain. If you take relief in good time the pain is evened out instead of the peaks you get if you only take pain relief when in severe pain. I know this but was slow to implement this a couple of weeks ago when I had some severe pain before I got a pain regime going. Thankfully it has receded now, not sure it’s origins though. Interesting thoughts too about chemo from Devenmaid and yourself. It still in my box of tricks after enzalutimide but can’t help thinking getting it when I feel weaker, with uncertainty of success may just bring me months of feeling below par with little protective benefit. I will watch this discussion with added personal interest.

Hope you get positive news on the RADIUM 223 soon, it will give you a great boost.

User
Posted 18 Oct 2017 at 09:26

Pain management


I love my GP. If he wasn't the same sex as me I'd want him to have my babies.


Sunday and Monday nights were bad, little sleep due to low level pain breaking through the Ibuprofen and Paracetamol.


So yesterday I rang the doctor that administered the Radium 223. He questioned me about the pain and satisfied himself that it was nothing to do with spinal cord compression. He thinks the pain increase, although arriving a little earlier than expected, may be tumour flare (hooray). He hopes that it will start to ease after one week following which he hopes the benefits of the Radium 223 will start to kick in and that I'll start to see a reduction in pain. He said "we can't have you in pain and without sleep for the next week or so, therefore we should increase your pain medication, perhaps Codeine or Tramadol, pop along and see your GP".


So I book an appointment for yesterday afternoon. Now I've never taken anything stronger than Naproxen so I look up Codeine and Tramadol on drugs.com. Eeeeekkkkk! Don't like the sound of these babies!


GP appointment. Explain the build up in pain, how I've been treating it, what my radium doc has said, lack of sleep and what I've learnt about Codeine and Tramadol.


GP says "we don't like using Tramadol unless we have to, Codeine is good because we can titrate it, but hey you're not using the maximum daily dosage of Ibuprofen and Paracetamol as yet, until you are we don't need to consider Codeine, but you need a good night's sleep, I've got just thing for you my son, get some Nytol".


So I did so. The result, I slept like a baby last night.


I love simple solutions.

Edited by member 18 Oct 2017 at 16:52  | Reason: Not specified

User
Posted 18 Oct 2017 at 12:10

My onco does not like tramadol. I used it for tumour flare and it put me into a strange state, pain relief but felt spaced out all Day and strong dreams at night. My recent pain episode I had oxynorm and longtec, variations on the same drug, one 12 hour delayed release, the other oxynorm, taken inbetween as immediate acting. They worked well. Codeine has constipation as a major side effect. Difficult choices as ever. Good luck.

User
Posted 22 Oct 2017 at 21:01
Oh David ,
This is such a rocky road isn’t it , some one once wrote on hear about the rocky toad and the boulders that we have to face Lyn will know who I am referring too .

I don’t make this common knowledge but my elder brother moved to Wales many years ago and has raised his children and know grandchildren in
Pembrokeshire so I have a whole army of family waiving you on from the Valleys .

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Oct 2017 at 07:51

Originally Posted by: Online Community Member
some one once wrote on hear about the rocky toad and the boulders that we have to face Lyn will know who I am referring too .


I'm guessing that will be spursspark.

Edited by member 23 Oct 2017 at 08:46  | Reason: Not specified

User
Posted 01 Nov 2017 at 18:19

Barry, yes, I had Enzo. It did well by me.

User
Posted 07 Nov 2017 at 18:52

Update - David is still in hospital. All they are saying is that he has pneumonia (I think we knew that) and is being treated via intravenous antibiotics. The doctor I managed to collar thought he might be out by the weekend, but to me he looks no better. But I suppose he did only go in again yesterday. A consult with the onco is planned for Thursday morning.  She wants to do this in one of her consulting rooms rather than on the ward  as there will be more privacy. I'll go to the hospital and wheel him there myself. 


I've just had a call from one of the nurses on David's ward. She says when he came into the hospital and was in the AMU, one of the people in the same part of that ward as him has tested positive for norovirus. So all the people who were in the same area are being moved from wherever they are now to another ward where they can all be monitored together. I don't like the sound of this. If he gets norovirus on top of pneumonia it would be pretty disastrous.

User
Posted 09 Nov 2017 at 15:13



Have been thinking about you this morning - so sorry that David's not feeling any better and that they aren't sure what to do to assist. It must be so hard dealing with the sudden possibility of no further treatment but I'll keep all my bits crossed that the antibiotics start to kick in and that his strength improves. Sending lots of hugs and hopes for a cheerier tomorrow.


Love


Ruth xxx


 




User
Posted 09 Nov 2017 at 15:32
Sorry to hear David isn't improving yet. Thinking about you both.

Ido4

User
Posted 09 Nov 2017 at 20:41

So sorry to hear this latest update. Just hope things improve soon. Sending best wishes and hope for the best.

User
Posted 09 Nov 2017 at 22:00
Pass on my best wishes to David.... hoping he has a good night tonight.

Kind Regards

Clare
User
Posted 11 Nov 2017 at 13:09

So gutted to read how I’ll David is at the moment. Hoping that he has improved? Holding you both in my thoughts.
Mel x

User
Posted 12 Nov 2017 at 12:48
Keeping all my fingers crossed for David and hoping he improves xxx
Debbie xxx
User
Posted 12 Nov 2017 at 17:17

Linda,

I am so sorry to hear that he is so under the weather but I am so hoping and praying he comes through.

Kindest regards and very best wishes to you and David

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 12 Nov 2017 at 17:56

Sounds like your David is a very brave man ,

Barry

User
Posted 12 Nov 2017 at 19:05
Hi Linda
I hope David continues to improve please pass on my best wishes
Si
Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Nov 2017 at 23:57

Hi Linda


My heart goes out to you both. Must be so difficult to carry on as normal when David is so low and things are so up in the air. But so pleased to hear that David was able to get out of bed and eat some food today. Fingers and toes crossed for a repeat performance tomorrow. And hope the hospice team get involved - they made such a difference to our stress levels, and, for a long time, to our sense of hope.


Will be thinking of you - hope you both get some sleep tonight and that tomorrow brings good news. Much love.


Ruth xxx


 


 

User
Posted 13 Nov 2017 at 08:20

Just sending love
Mx

User
Posted 13 Nov 2017 at 17:51

Sending love and hugs at what must be a very difficult time. Take care.

User
Posted 13 Nov 2017 at 18:31

Such a difficult time. It sounds as if it really is a question of waiting fir the anti-biotics to kick in, David sounds as if he is fully alert to what is happening which is great and may indicate that there is good resistance there. There is little you can do but be there and show him your support. There are never easy answers here but I hope you see him improve soon and you have some time to be together. Thinking of you both. Give David my best. Paul

User
Posted 13 Nov 2017 at 23:29

The back rub / back scratch sounds like an excellent contribution. And makes one feel like less of a spare part I guess. Tony liked to have his feet massaged so that was my main function when he was feeling particularly rough. Think it did me good too.


Hope you both have a decent night's sleep tonight and that David is a bit stronger tomorrow. Will be thinking of you.


Hugs


Ruth x

User
Posted 15 Nov 2017 at 18:42
Thought I would pop in and see how David is doing and of course I wanted / needed to read that he is much improved and on his way home .
After our long and stressful struggle my heart goes out to you Linda, I think I have been hogging the comfort blanket for far to long so it is in the post ( first class ) and should be with you first thing in the morning .
Wrap your self in it because it is made with love from everyone here.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Nov 2017 at 20:12

Thanks for taking time to update us Linda. I know we are all rooting for your lovely chap, not least because he has been such a jewel for others on this site, providing evidence and information and plenty of chuckles, plus introducing me/us to the delights of MK for which I'll be always grateful. And you have provided unforgettable nose-hair tips. What a team! Lots of virtual hugs and love and hopeful thoughts coming your way. All bits continue crossed.


Much love


Ruth xxx

User
Posted 15 Nov 2017 at 21:17
Sorry to hear that David isn't too well. Please pass him my best wishes. He gave me some useful information before my last visit to the oncologist with dad which I was grateful for. Stay strong and I will be thinking of you both
User
Posted 15 Nov 2017 at 22:17

Hi Linda I'm sorry I haven't got anything even vaguely useful to say but thinking of you both and glad the blanket is on it's way to you x

User
Posted 16 Nov 2017 at 21:09

So sorry to read this. My thoughts are with you at this very difficult time. Ian. Xx

Ido4

User
Posted 16 Nov 2017 at 23:49

Oh Linda I do feel for you both. Being told that you might only have a short time left together might be useful in a practical sense but it can have a devastating impact on stress levels and hope - and therefore on quality of life. My heart goes out to you and to David; I hope that the palliative care team are able to help and that you can draw on their support too. And that whatever time you have will be pain free and full of love. Will be thinking of you.


Rxxx


 

User
Posted 17 Nov 2017 at 08:09
So sorry to read this news. My thoughts are with you.

Kevan
User
Posted 17 Nov 2017 at 08:22
Linda,

I am so sorry to hear this news. I can only hope and pray that things improve

Very kindest regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 17 Nov 2017 at 09:54

So sorry to read this. I followed his Chemo journey as my husband was a few months behind and it was incredibly helpful. I just feel so sad but do hope that things improve and the palliative care is there when needed. Love to both of you.

User
Posted 17 Nov 2017 at 22:27

Linda,
Every time I open the fridge here & see my husband's pineapple chunks I think of you both & send love your way. I know that so many of us will have things that make us remember you in our days, like the beer in the cupboard. If only Love could heal as David is so clearly loved. All I can do is thank you both for your honesty, for your hope and for your letting us share in the smal way we can by being here. Tell David I’ll send a case of his preferred from my local Badgers Brewery if he gets his arse home! And yes, I mean it, bribery works on my B, so I’ll try it with your David 🙂
Much love
Mel x

User
Posted 18 Nov 2017 at 21:45

I'm so sorry you are facing this Linda. Be kind to yourself xx

User
Posted 19 Nov 2017 at 08:48

Thinking of you Linda and hoping that the last lot of Antibiotics helped XX

We can't control the winds - but we can adjust our sails
User
Posted 19 Nov 2017 at 11:08

Thoughts with you and David this weekend.. positive ones that these antibiotics are kicking in.

Clare

User
Posted 20 Nov 2017 at 21:22

Hoping that things continue to improve and that David begins to feel better. He was so kind and supportive to me when I needed it. Thinking of you both


Rosy x


 

User
Posted 20 Nov 2017 at 23:01

So pleased to hear this slightly better news Linda - and good for you on the Heath-Robinson ear contraption. These things might seem small but they are so important aren't they. Very much hope you are able to see the Enhanced Palliative Care team tomorrow and that David has a good night's sleep tonight. Will be thinking of you.


Love


Ruth xxx

User
Posted 21 Nov 2017 at 08:00

Thinking of you and David ,
Best wishes
Debby

User
Posted 21 Nov 2017 at 08:02

I hope today is a better day - shocking that anyone can get pressure sores in a hospital in modern times :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Nov 2017 at 16:14

And despite lawyers making a killing by seeking damages from the hospitals concerned, cases still occur. Shocking nursing lapses.

AC

User
Posted 21 Nov 2017 at 20:00
Oh Linda,
Reading your posts are all to similar to our last few months I so understand what you are going through . It’s tough isn’t it really really tough.
My heart goes out to you , huge virtual hugs coming your way.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Nov 2017 at 21:37

So sorry Linda. Such a worrying time for you. And so very hard to not actually know what's happening or what to expect. Heartbreaking.


Sending love and hugs to you both. Ruth xxx

User
Posted 22 Nov 2017 at 06:26

All I can say is thank you for your updates. There must be 100s of people reading this and thinking of you both without posting. I have been one of them until now.

User
Posted 22 Nov 2017 at 15:15

So sorry and our wishes and thoughts are with you. I so hope he remains peaceful and as pain free as possible. Stay strong xxx


If life gives you lemons , then make lemonade
User
Posted 22 Nov 2017 at 16:11

My heart goes out to you Linda. No useful words but lots of love.


Ruth xxx

User
Posted 22 Nov 2017 at 16:13
Thoughts are with you and David. My dad is in a similar situation as active treatment stopped on 2nd October. Our hospice only has 12 beds too so dad still at home but really shouldn't be. I hope David remains comfortable and as pain free as possible and that a hospice bed becomes available soon. Take care
User
Posted 22 Nov 2017 at 16:15

My thoughts are with you and David at this time. Ian. Xx

Ido4

User
Posted 22 Nov 2017 at 16:58
Thinking of you both and hoping that David will remain comfortable and pain free.
User
Posted 22 Nov 2017 at 17:44
So sorry to hear this. Will be thinking about you both.
Debbie x
User
Posted 22 Nov 2017 at 17:48

So sorry to hear this. Hope a hospice bed comes available. Take care.

User
Posted 22 Nov 2017 at 19:00
Like Ruth I have no words to express my sadness at this news but please know that you are both in my thoughts.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Nov 2017 at 19:20

My thoughts continue to be with you both x

User
Posted 22 Nov 2017 at 20:09

Dearest Linda
My heart is breaking for you David was one of the first to respond to my outpourings when my husband died in July. He is such a kind caring man who brought lots of no nonsense information, humour and great musical introductions that will stay on my play list forever more and will always remind me of him. IT sounds strange to write that because of course we never met but I feel so close to people on this site and especially you right now. It's funny how we all become so close to this family of people who wish they didn't have to be part of it.
Sending you both much love and huge hugs
Yvonne

User
Posted 22 Nov 2017 at 20:39

Sending a virtual hug.. like Yvonne said we haven't met but I have followed Davids wonderful postings and appreciate his sharing, his humour and his education of others.

Big hug xx

User
Posted 23 Nov 2017 at 03:15
Thinking of you both at this difficult time.

Steve xx
User
Posted 23 Nov 2017 at 07:49
Dear Linda
I would also like to echo everybody’s lovely comments by saying David also encouraged me to read into his thread on enzalutamide when my dad was starting to be treated with it,David is a wonderful man who’s helped so many on here,I just want to say I am thinking of you both.
Much love Viv xx
User
Posted 23 Nov 2017 at 09:31

I am so sorry to hear this latest news. It sounds very similar to what happened with my David.


My thoughts are with you both


Rosy xx

User
Posted 23 Nov 2017 at 12:53

Hope that David continues calm and pain-free today Linda, and very much hope that a hospice bed is available before long. Please send him my love and thanks for all the support and kindness he showed to me. Not to mention the chuckles. He's clearly a very special man.


LOve


Ruth xxx

User
Posted 23 Nov 2017 at 16:36

Just sending love xx

User
Posted 23 Nov 2017 at 18:20
Thinking of you both at this difficult sad time,sending lots of love, david is such an inspiration to everyone as are you both for sharing your journey and helping others.love jo.xx
User
Posted 23 Nov 2017 at 21:09
I am so very sorry to hear this and will be praying for you both and hoping David stays pain free and comfortable xxx
Debbie xxx
User
Posted 23 Nov 2017 at 22:23

Been away for a day and come back to see the news we all fear, however inevitable it is at some poin. I really hope they can make him comfortable, into a hospice if poss and you get time to share together. Give him my best, and look after yourself too. Thinking of you both.

User
Posted 25 Nov 2017 at 18:11
So sorry to hear this. Pain free is a positive. Hope he continues to remain as comfortable as possible. Look after yourself too. I'm thinking of you both
User
Posted 25 Nov 2017 at 18:22
I echo what scabbycat has posted. Thinking of you both, Ian.

Ido4

User
Posted 25 Nov 2017 at 18:39
Hoping that a bed in the hospice becomes available, thinking of you
Regards Judi
User
Posted 25 Nov 2017 at 19:36

Hi Linda


Thank you so much for updating us - I know that so many people on this forum have been helped by David and will all be thinking of you and sending love - as do I.


I understand the feeling of helplessness but simply being there and loving him - as you have all along - is being useful. That's all there is at the end of the day, and it's a huge 'all'.


Love


Ruth xxx


PS Because I absolutely needed to do something sort-of practical, during the last week of Tony's life I would freshen him up with scented wetwipes and eau de cologne (a blokey smelling one of course!) and give him gentle head massages and witter sweet nothings at him as he slept. Don't know if he thought it was a good idea but it helped me (and still helps me) to feel I was physically caring for him.

User
Posted 25 Nov 2017 at 21:21

Wonderful idea Linda! Wish we'd done that... we had lots of loving conversations and sent each other cards for no reason. But you are right - emotion gets in the way. A letter would have been something to really treasure.


Just from the way you two speak about each other on the forum it's clear that you have a fabulous relationship. We are both so lucky in spite of everything.


Love


Ruth xxx

User
Posted 25 Nov 2017 at 21:28

Just sending my love to you both.

User
Posted 26 Nov 2017 at 00:03
I really can’t believe this, it only seems a little while ago we were talking about real ale, music etc. I remember when when had a laugh about David’s name - some called him Colin re his avatar. I remember writing to him saying was his name Colin or Chester (I’m from Essex) - he got it!

I’m so sorry to hear this latest situation, David was such a support and encouragement to so many of us.

Arthur
User
Posted 26 Nov 2017 at 07:12
Oh Linda, i am so sorry to hear this latest news.

David always said that quality of life was most important to him.

I hope his care improves to allow that to happen

Regards and best wishes

Dave

Edited by member 26 Nov 2017 at 07:14  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 26 Nov 2017 at 17:33

Dear Linda


So hard for you. Hope you have some support from somewhere too...


Your response seems like a good one (at least in theory). This might not be relevant but there's a wonderfully humane approach being used in dementia care homes when residents slip back to a previous life - thinking they are young mums, or that their parents are still alive. The staff are trained to thoroughly enter the resident's world and to go along with them rather than disputing their reality. The outcome is that the residents feel calmer and in control rather than getting even more confused and agitated.


But it sounds as if you have been doing that within the hospital context to no avail - maybe part of the problem is that 'being cared for' is not an active role - it's being done to rather than doing. I don't know if's there anything that you can suggest to him that he would be able to do, however minor? Has he stopped listening to music? Might he be interested in finalising his top 10s or deciding on the relative merits of one version of a song over another? When Tony was becoming more confused and agitated he did manage to surprise us all with a long and complicated discussion about several versions of Bach's piano suite (he discovered that the consultant loved Bach) and was clearly very contented with his conclusions.


It seems that confusion and agitation are often caused by the large amounts of medication that people receive once they are on a palliative care route. Plus, as they drink and eat less and the body begins to shut down it is less able to get rid of toxins. Apparently that can lead to agitation and confusion too so it's probably hitting your lovely bloke from all sides. Probably worth getting advice from the palliative care team - ours drastically reduced some of the medication which did lessen the confusion for a while. And eventually, at Tony's request, they massively increased the anti-agitation medicines so that he simply slept. So hard, especially for you.


Wishing you strength. Much love


Ruth xxx

User
Posted 26 Nov 2017 at 17:38

Something to talk to the palliative care nurse about if you get chance but in your situation I went along with it because it caused more distress and agitation to try to correct them. It will perhaps not last very long. What may be harder for you is if he starts to see people that aren't there; don't be frightened by this, it is very common.

I am thinking of you both xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Nov 2017 at 20:07

Just talking about it shows you are doing by instinct what you can do. Remember the confusion and agitation is his state of health and the drugs. Talk to the nurses but you just need to be there for him as I hope other family are there for you.

User
Posted 26 Nov 2017 at 20:42
My advice would be to go along with it it Linda, Trevor was very confused in the summer with the Sepsis and again in the last few weeks .
I also worked in care homes with people who had dementia and I found if they where unable to join me in reality then I would join them in confusion .
I always found the more you try to rationalise with someone in that level of confusion it just frustrates and confuses them more .
The old saying If You Can’t Beat Them Then Join Them “ comes to mind , whatever makes things easier for yourself and David is the right thing to do.
Thinking of you both .
Lots of love
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Nov 2017 at 22:58

Sending love. Ruth xxx

User
Posted 28 Nov 2017 at 17:15

Hi Linda
Hoping that David had a good night last night and that he remains pain free today. And hope that the confusion is less acute. Thinking of you at this impossible time.
Hugs
Ruth xxx

User
Posted 28 Nov 2017 at 19:12

Yes, like Ruth, you have been on my mind today Linda xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Nov 2017 at 00:53

Thinking of you both and sending love.

User
Posted 29 Nov 2017 at 12:38

Sending love x

User
Posted 29 Nov 2017 at 18:59

Hi Linda


Sounds like such a good plan - being somewhere calm and beautiful is important for David but also for you. Then you can just focus on spending time with him away from the hubbub of the hospital. Hope the transfer goes smoothly.


Sending lots of love


Ruth


xxx

User
Posted 29 Nov 2017 at 19:44
Sounds promising both for David and for you, hoping for a smooth transition and a peaceful night, look after yourself. Thoughts are with you.
Judith
User
Posted 29 Nov 2017 at 21:25
I really hope you can get David moved. Linda , I felt so strongly that I wanted Trevor moved to the hospice sadly it didn’t happen but I have everything crossed that you can get the move for David sorted.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Nov 2017 at 21:27

Sending wishes. More peace at a care home and regular turning and assisted feeding etc. Radio on !
So sorry you both in this position and you’re trying so hard. Xx


If life gives you lemons , then make lemonade
User
Posted 29 Nov 2017 at 23:01
My fingers are crossed that you can get David into the nursing home Linda, it sounds so much more restful all round. This is such a tough time for you as well, you know that we are all thinking of you and hoping that when the time comes, David will pass peacefully, he will be so much missed here. You are such a brave woman and a wonderful wife. Hugs and love to you both.

With Love
Devonmaid xxx
User
Posted 01 Dec 2017 at 13:31

It looks lovely. I love that part of the world though many many years since I visited Budleihh Salterton. I hope the move goes well and it gives David strength to enjoy some time there and for you to spend quality time with him. Thinking of you both. Paul

User
Posted 01 Dec 2017 at 14:44

Both my wife an I love Devon, what a lovely view David will have. I hope the move goes quickly and efficiently for you both.

Arthur

User
Posted 01 Dec 2017 at 14:55

That looks beautiful Linda. Well done you for making it happen. Hope it all goes smoothly this afternoon and that you are both able to relax a little more in these peaceful surroundings. Sending lots of love to you both.


Ruth xxx

User
Posted 01 Dec 2017 at 15:43

When I lived in Devon I used to play golf in Budleigh Salterton. Beautiful area, hope you both get some quality time there together. X

User
Posted 01 Dec 2017 at 21:28

It looks a lovely place Linda. We are on our way to the Gambia but you will be in my thoughts - please give David a kiss from me x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Dec 2017 at 23:26

Pleased to hear that David is now in the nursing home. The view looks amazing. I do hope he is able to appreciate it and that his needs can be met. Take care of yourself

User
Posted 02 Dec 2017 at 07:44
I’m so happy to read this Linda, in the context of everything of course. My love goes with you xxxxx
User
Posted 02 Dec 2017 at 18:12

Thoughts are with you at this sad time ,
Debby

User
Posted 02 Dec 2017 at 18:38
My deepest sympathy to you and your family. You are in my thoughts, take care.
Debbie x
User
Posted 02 Dec 2017 at 18:44
Linda

So sorry to hear of your sad news please accept my sincere condolences.

Thanks Chris

User
Posted 02 Dec 2017 at 18:49
Linda
So very sorry,thoughts are with you and your family
Viv
User
Posted 02 Dec 2017 at 19:38

This news is so sad ,
David tried so hard, RIP David

Best wishs Linda

User
Posted 02 Dec 2017 at 19:41

Lost for words. Truly. Our thoughts are with you. X


If life gives you lemons , then make lemonade
User
Posted 02 Dec 2017 at 20:20

So sorry to hear this sad news.

Arthur

User
Posted 02 Dec 2017 at 21:18
Oh Linda
My heart goes out to you, rest in peace David. You fought so hard lovely man. My deepest condolences.

With love Devonmaid xxxxx
User
Posted 02 Dec 2017 at 21:20

Oh my god can’t believe it. Sincere condolences to you and yours at this very sad time. X

User
Posted 02 Dec 2017 at 21:23
So sorry to hear this Linda. My thoughts are with you and will continue to be. Such a lovely man, his posts were so useful to so many.
Ian.

Ido4

User
Posted 02 Dec 2017 at 22:28

So very sorry Linda. But so pleased that he was in the right surroundings, that he was peaceful, and that you were with him and loving him.


Much love to you, and thanks to both of you for the kindness and support you offered me on the same journey.


Hugs


Ruth xxx

User
Posted 02 Dec 2017 at 22:53
I have quietly followed David’s posts, taking so much inspiration from his upbeat attitude, sorely missed

Gutted xx
User
Posted 02 Dec 2017 at 23:29
I am so very sorry to hear this sad news. He fought so hard xxx
Debbie xxx
User
Posted 02 Dec 2017 at 23:30
So sorry to read about David, I am so glad you were with him, please accept my condolences
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 03 Dec 2017 at 08:57

So very sorry for your loss, but thankful that you were with him at his passing, my thoughts and condolences re with you

User
Posted 03 Dec 2017 at 09:07

Oh Linda I am so so sorry to hear this.


It sounds as though David was at peace in his room with a view and with you by his side. You and he were both so kind to me when I lost my David. Do take care of yourself in the coming days and months.


Rosy xxx

User
Posted 03 Dec 2017 at 09:14

So sorry to read this. I learnt so much from his posts.

User
Posted 03 Dec 2017 at 11:45
Another good man gone. So sorry to hear this Linda. Glad you had a few hours with him at the end. Take care x
User
Posted 03 Dec 2017 at 13:22
So sad. He had many wise words which have helped so many.
User
Posted 03 Dec 2017 at 13:40

Linda,

I am so sorry to hear your news.

May God bless both you and David.

David's presence has been such an inspiration and a comfort to me.

Dave

Edited by member 03 Dec 2017 at 13:46  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 03 Dec 2017 at 14:11
Dear Linda, your husband was a great support and inspiration to me. For that I thank you, I am so sorry to read of your loss.Another lovely man taken by this cruel disease. R.I.P David.
User
Posted 03 Dec 2017 at 15:52

Linda, my deepest sympathy. Your man was a hero and will never be forgotten on this site. Keep well.

AC

User
Posted 03 Dec 2017 at 16:29
I am so sorry and sad to read this news Linda, my heart goes out to you there are no words as I know only too few well .
So I am just sending my love .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Dec 2017 at 16:49

Linda ...So sorry for the loss of your dear David and so glad that you were with him at the end. He is no longer suffering and I'm sure you have countless happy memories of you time you spent with each other.
Love Tom

User
Posted 03 Dec 2017 at 16:57

Please accept my deepest condolences Linda. I am very sorry you have lost your lovely David. You were a shining star for him and both inspirational in your different roles ... So sorry.

Clare

User
Posted 03 Dec 2017 at 21:09
Linda so very sorry to read this sad news, sending love to you and your family, david was a great help to all of us on this journey..love jo.xx
User
Posted 04 Dec 2017 at 01:07

Oh Linda. How my heart aches for you. David's support and advice were invaluable to me & my OH.
I picture your wonderful man now sat at the best bar heaven has, ordering a perfect temperature real ale with just the right measure of head on it, served with the best flavour crisps to complement this ambrosia. And to top it all Colchester United are on the pub tv & are thrashing Man Utd.
Sending much love & my sincerest sympathies
Mel xx

User
Posted 04 Dec 2017 at 04:27

Linda, you and David have been such wonderful people on this forum. I don't come here too often living 12,000 miles away, but David and i had some great conversations about football, particularly when Colchester were playing Spurs a couple of years back. A great man, who I would love to have met. An inspiration to us all.

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 04 Dec 2017 at 12:04
Please accept my deepest condolences

RIP David

Roy
User
Posted 04 Dec 2017 at 12:18
I am so sorry to hear this sad news. Please accept my sincerest condolences.
User
Posted 04 Dec 2017 at 18:42

Oh Linda, 


I am so sorry for your loss. It brings into relief our own mortality. I then experienced anger that your loss is replicated every 45 minutes up and down the country as families are being devastated by this dreadful disease. 


I was diagnosed stage 4 over 5 years ago. I could be wrong, but the only thing that seemed to have has changed is that newly diagnosed men get docetaxel straight away. No breakthrough drugs, just older drugs given at a different time. 


Any new drugs being developed by UK charities result in the very people supporting these charities to be denied them usually on the basis of cost effectiveness. WTF? I don't know what the answer could be but we need a sea change of how prostate cancer drugs are developed and administered. 


Collectively we seem to be far too passive and just exist by fearing the worst but hoping for the best. Surely we deserve better?


 

User
Posted 05 Dec 2017 at 18:34

Hi Linda


So glad to hear that David's death was peaceful and loving - I don't doubt that will be comforting eventually but hard to feel anything other than overwhelming sadness right now I'm sure. I found all of the bureaucratic stuff very difficult to handle - hope it goes smoothly for you and that you have friends and family to help you with the more officious bits.


Take care. Will be thinking of you.


Hugs


Ruth xxx

User
Posted 06 Dec 2017 at 22:39
A Lovely Post Linda and David would be so proud of you.
I suppose I am still pretty much where you are at the moment somewhere in between reality and a very real non reality.
It’s been crazy here and I am still getting phone calls asking to speak to Trevor sometimes I just tell them the truth and other times I can’t say the words and just ask them to call back .
I suppose it’s all apart of our new normal even though we had only just got to grips with our previous new normal ( wow that’s made me cry) everyday is our new normal .
Much love coming your way.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Dec 2017 at 12:56

You have written very eloquently Linda. A very difficult outcome for you to deal with but the peaceful way David passed must be of comfort to you. Thinking of you, Ian.

Ido4

User
Posted 09 Dec 2017 at 10:58

Hello Linda. I have been away and so I am sorry my message of condolence is so delayed. I am so sad for you. I smiled when you said about the list David left you. I felt great comfort in the days following my husbands death in doing all the daily chores he would have been doing and trying to do them as exactly as he would have done them. Not only did it make me feel as I was carrying out his wishes but I was always exhausted at the end of the day and this helped me sleep. The view from Davids room was beautiful and I am so pleased you were able to get him there and be with him. Like others who have posted I too am navigating the numerous new normals on this rollercoaster ride, none of them are normal yet and always a shock. My heart goes out to you
Sending you love.

User
Posted 09 Dec 2017 at 11:07

hello Linda

I'm also late in reading the update. Obviously sad to read of the loss. Hope the arrangements go as good as they can

Ray

User
Posted 09 Dec 2017 at 21:00

Very sad news Linda. Another man lost to this rotten disease. But David's struggle is over and it is you that needs support which I trust will be given.

Barry
Show Most Thanked Posts
User
Posted 03 Oct 2017 at 17:40

Will be thinking of you. Take care.


Rxxx

User
Posted 03 Oct 2017 at 19:32

I wish you all the best for this treatment and look forward to hearing your progress. Thank you so much for your previous 2 threads which have been very helpful.

User
Posted 03 Oct 2017 at 20:49

All the very best wishes to you David in the next part of your journey

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 03 Oct 2017 at 20:50
Hi
John is going to have his third injection in two weeks. His ALP has dropped to 48 but his PSA has gone up to 42. He finds he feels exhausted for a week after his jab and often looks an awful colour. He has to rest, there is no way round it and sometimes he has to have a day of total bed rest. He suffers from constipation (mainly from a previous round of RT). This is a common finding, some times it’s the runs, but hey ho. I wouldn’t say that he feels any better overall but we will see what the bloods say next week

The jab itself is fine, and the protocol in Oxford is to attend a clinic the week before for a review and to review the whole process after three months.

Good luck, I hope it helps, I’m sure it will. Looking forward to seeing your updates

DM
User
Posted 04 Oct 2017 at 07:59
Hoping this works for you David

All the best,

Arthur

To quote a phrase from a telly programme, but not quite - Keep on .........drinking (real beer that is)
User
Posted 04 Oct 2017 at 11:32
Good luck with the Radium 223. My dad has been refused it but I'd be very interested to hear how you get on with it. Thanks for your previous advice relating to my dad. It enabled me to research the options and ask the consultant about them. He refused them all but at least I tried. He has now been ejected from last chance saloon but I hope it's a long time before you get there
User
Posted 04 Oct 2017 at 12:19

Thank you Scabbycat.

I hope your Dad is starting to adjust to and accept what his Onco told him a couple of days ago. My Onco will give me the same message sometime in the future. I'm not going to pretend that I'll welcome that message when it comes but the logical part of me may just breathe a small sigh of relief when I swap:

taking bloods and the associated tests, waiting for the results, attendance at hospitals for appointments and scans of all the various types, the rigours of treatment and all the prodding and poking that will accompany the development of complications

for

we're going to keep you as comfortable as we can for as long as we can and we're going to make the process of passing on as non-traumatic as possible.

There may be a kind peace to be found in that.

User
Posted 06 Oct 2017 at 19:28
Phew David ,
Your last post and words definitely struck a chord with me I know I am known as the joker of the pack but if it was for myself then I think I would feel immense calm at saying “I don’t want to play anymore “ .
I think it would for me be A taking back control moment a “ I am going home and taking my ball with me “ kind of feeling.

Of course then there are the Trevor types and trust me if anyone even tried to get him near the door of The Last Chance Saloon well then you would have a major fight on your hands.
Because he will never accept defeat.

We are all different , all unique and I just want to end on this upbeat thought.
We are 2 months away from our start of Raduim 1 year Anniversary , still going and still here ! Battered Bruised But still here. 🤗
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Oct 2017 at 19:59

Don't worry Julie, I'm not giving up. I remain in good spirits and intend to stay that way.

For me quality of life is everything, quantity of life is unimportant. I want to live and enjoy what remains of my life as well as I can. I love living with and loving Mrs_ColU but when quality of life becomes really compromised then I see little point in continued existence.

I've said it before, Mr Spock is my hero. I have his logical, green, vulcan blood in my veins. He'd understand where I'm coming from.

All that said, this old dog is still barking, wagging his tail and drinking his beer. And he'll drink a few more yet.

User
Posted 06 Oct 2017 at 20:50
Originally Posted by: Online Community Member

I love living with and loving Mrs_ColU



What a lovely thing to say x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Oct 2017 at 21:27
So another Trekkie you and Trevor would make a great team .
For me it has to be Buz Lightyear !
To Infinity and Beyond ! To Infinity and Beyond my friend.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Oct 2017 at 21:54

Thank you for this post and your total honesty. I believe I walk in your shoes but maybe not as far yet. I’m totally QOL based and I know that won’t change having nursed many end of life patients now in my new temporary job. Not sure I’ll even stretch to Chemo tbh. I think only pain itself will decide my treatment path , as no-one likes pain.
All the best
Chris


If life gives you lemons , then make lemonade
User
Posted 07 Oct 2017 at 08:30

Originally Posted by: Online Community Member
So another Trekkie you and Trevor would make a great team.


In that case Trevor will understand why I liken PCa to the Borg. The problem with the Borg was you'd zap one with your phaser and down he'd go and then zap another one and he'd go down as well and then they would adapt and the phaser was no good anymore so you had to find a new weapon or the Borg would get you. Just like PCa.


Live long and prosper.

User
Posted 07 Oct 2017 at 08:40

Originally Posted by: Online Community Member


I’m totally QOL based and I know that won’t change having nursed many end of life patients now in my new temporary job. Not sure I’ll even stretch to Chemo tbh. I think only pain itself will decide my treatment path , as no-one likes pain.


Don't discount chemo yet Chris. Read my Docetaxel highs and lows thread before making that decision. Chemo can relieve bone pain. For me, chemo wasn't a problem until I got pneumonia.


Keep an eye on my experiences with Radium 223 as well. It's also meant to be good for bone pain.

User
Posted 07 Oct 2017 at 14:42

I just understand your view absolutely. When I first read it I simply thought yes that’s my future too. You delay as long as your life is reasonable and then that point is reached. The inevitability takes away the sting. I feel lucky I have had much longer than predicted but never forget that moment will come. It’s harder to prepare family and friends.

It’s not a morbid thought, it’s simply the natural passage of time. Unless another disease or illness intervenes it keeps at least a sense of order to the future.

User
Posted 08 Oct 2017 at 13:24


Masochists do. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Sorry, I just couldn't resist.


I'll get me coat.

User
Posted 08 Oct 2017 at 18:52
Originally Posted by: Online Community Member


Masochists do. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Sorry, I just couldn't resist.


I'll get me coat.



Reminds of of Dave Allen I think...

A masochist asked a sadist to hurt him... the sadist said no

I’ll get my coat as well
User
Posted 10 Oct 2017 at 19:42

First Radium 223 infusion administered today.

I will report on any changes in my health, good or bad, as they occur. Therefore, no report means nothing has changed.

User
Posted 11 Oct 2017 at 00:04
I suppose my first question would be did you have the infusion in what Trevor described as a broom cupboard and did they use the Geiger counter ?
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Oct 2017 at 08:49

It was a normal office, no lead on the walls and the Doc and his techie were dressed normally.

The first question I asked them, having read of Trevor's experiences, was "are you going to wave a Geiger counter over me?". They seemed amused by this and said any use of a Geiger counter would be for their protection rather than mine.

Mrs_C and I found the whole process of the infusion and the willingness of them to deal with all our questions made the appointment a simple and non-traumatic experience.

User
Posted 11 Oct 2017 at 08:59
I hope the whole experience goes well for you and that you get a good outcome.

Kind regards

Kevan
User
Posted 11 Oct 2017 at 12:46
Sounds like you’re off to a good start David.

Long may it continue.

Arthur
User
Posted 12 Oct 2017 at 23:58
WHAT NO GEIGER COUNTER ! I can’t beleve it 😱
Was it even Raduim ?

That’s like the Enterprise withought it’s Force Field 😄

Spock would be horrified.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Oct 2017 at 11:05

Update time.

The most common side effects of Radium 223 are diarrhoea, nausea and increased pain.

I've had no problem with diarrhoea or nausea.

I think I've had increased pain yesterday and today. This seems silly. How can I think I have increased pain? The problem is it's marginal. It's difficult to judge whether I'm feeling the same or worse. I also recognise that I want to feel worse so there is the psychosomatic effect to consider. That seems silly as well but I'm aware that increased pain is normal and often indicates that the treatment is working.

So it's down to patience and waiting and seeing. One things for certain, I don't think I'll have any problem recognising a reduction in pain.

User
Posted 14 Oct 2017 at 12:38
Well I guess that it must be quite a relief not having suffered two of the possible common side effects and if I read you right you won't be too upset with the increased pain if it indicates the treatment could be working.
I understand your thinking which, having read many of your posts, I find quite disturbing.
As you say, you can only wait and see what happens.

Do you glow green in the dark ? That would be pretty cool with Halloween approaching😱
User
Posted 14 Oct 2017 at 13:24

Originally Posted by: Online Community Member
if I read you right you won't be too upset with the increased pain if it indicates the treatment could be working.


Correct.


Originally Posted by: Online Community Member
I understand your thinking which, having read many of your posts, I find quite disturbing.


I'm sorry about that, maybe I'm just too open about my feelings. We Vulcans are like that. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Originally Posted by: Online Community Member
Do you glow green in the dark ? That would be pretty cool with Halloween approaching😱


LOL. Nice one.

User
Posted 16 Oct 2017 at 10:10
You sound just like John, He thinks he has more pain but he hasn’t increased his painkillers. He does have hideous bladder spasms that take over his life so maybe in relation to that it is hard to judge.

We are going for the third one tomorrow after seeing the consultant last week. We don’t know the latest PSA (which we will find out tomorrow) but the last two have shot up to 42, so expecting an increase and further treatment as doc said she didn’t want it shooting up. John is talking about refusing chemo but has promised to speak to the consultant before he makes that decision.

Good luck

Devonmaid
User
Posted 16 Oct 2017 at 12:24

DM,

I'm pretty certain now the pain has increased, I had a poor night last night and took Ibuprofen followed by Paracetamol a couple of hours later after which I managed to get some sleep.

I'm a wimp. I will be keeping on top of the pain in the next few days with regular Ibuprofen and Paracetamol whilst I wait in hope for the benefits of Radium 223 to cut in.

I am of the same mind as John regarding further chemo. I hope your Onco has another solution to the rising PSA. How are John's ALPs? It's the ALPs that determine how well or not the Radium 223 is working I believe.

User
Posted 16 Oct 2017 at 15:06

No way a wimp regarding pain. If you take relief in good time the pain is evened out instead of the peaks you get if you only take pain relief when in severe pain. I know this but was slow to implement this a couple of weeks ago when I had some severe pain before I got a pain regime going. Thankfully it has receded now, not sure it’s origins though. Interesting thoughts too about chemo from Devenmaid and yourself. It still in my box of tricks after enzalutimide but can’t help thinking getting it when I feel weaker, with uncertainty of success may just bring me months of feeling below par with little protective benefit. I will watch this discussion with added personal interest.

Hope you get positive news on the RADIUM 223 soon, it will give you a great boost.

User
Posted 17 Oct 2017 at 06:09
Originally Posted by: Online Community Member

DM,

I'm pretty certain now the pain has increased, I had a poor night last night and took Ibuprofen followed by Paracetamol a couple of hours later after which I managed to get some sleep.

I'm a wimp. I will be keeping on top of the pain in the next few days with regular Ibuprofen and Paracetamol whilst I wait in hope for the benefits of Radium 223 to cut in.

I am of the same mind as John regarding further chemo. I hope your Onco has another solution to the rising PSA. How are John's ALPs? It's the ALPs that determine how well or not the Radium 223 is working I believe.



David,

As you are aware I am on my 2nd session of Chemo, completing infusion 10 today which is the 2nd cycle of this current session. Bone pain all gone and hopefully PSA coming down, with very few side effects this time. I really do not have any issues with recommending Chemo.

Hope the Radium 223 does it's job, but maybe a further session of Chemo will be good for you, what do you think?

Best wishes to you David

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 17 Oct 2017 at 08:32

Originally Posted by: Online Community Member


maybe a further session of Chemo will be good for you, what do you think?


Dave,


Whether or not I would have further chemo will be solely determined by what my Quality of Life (QOL) was like at the time it was recommended by my Onco. If my QOL is good, I'd have further chemo without a quarm. If my QOL is poor, I would have serious doubts and would need convincing that there was more to be gained than lost. As I've said before, QOL is everything, extending existence for no other reason than putting off the evil day is of no interest to me.


It's good to hear you are going well.


David

User
Posted 18 Oct 2017 at 09:26

Pain management


I love my GP. If he wasn't the same sex as me I'd want him to have my babies.


Sunday and Monday nights were bad, little sleep due to low level pain breaking through the Ibuprofen and Paracetamol.


So yesterday I rang the doctor that administered the Radium 223. He questioned me about the pain and satisfied himself that it was nothing to do with spinal cord compression. He thinks the pain increase, although arriving a little earlier than expected, may be tumour flare (hooray). He hopes that it will start to ease after one week following which he hopes the benefits of the Radium 223 will start to kick in and that I'll start to see a reduction in pain. He said "we can't have you in pain and without sleep for the next week or so, therefore we should increase your pain medication, perhaps Codeine or Tramadol, pop along and see your GP".


So I book an appointment for yesterday afternoon. Now I've never taken anything stronger than Naproxen so I look up Codeine and Tramadol on drugs.com. Eeeeekkkkk! Don't like the sound of these babies!


GP appointment. Explain the build up in pain, how I've been treating it, what my radium doc has said, lack of sleep and what I've learnt about Codeine and Tramadol.


GP says "we don't like using Tramadol unless we have to, Codeine is good because we can titrate it, but hey you're not using the maximum daily dosage of Ibuprofen and Paracetamol as yet, until you are we don't need to consider Codeine, but you need a good night's sleep, I've got just thing for you my son, get some Nytol".


So I did so. The result, I slept like a baby last night.


I love simple solutions.

Edited by member 18 Oct 2017 at 16:52  | Reason: Not specified

User
Posted 18 Oct 2017 at 12:10

My onco does not like tramadol. I used it for tumour flare and it put me into a strange state, pain relief but felt spaced out all Day and strong dreams at night. My recent pain episode I had oxynorm and longtec, variations on the same drug, one 12 hour delayed release, the other oxynorm, taken inbetween as immediate acting. They worked well. Codeine has constipation as a major side effect. Difficult choices as ever. Good luck.

User
Posted 22 Oct 2017 at 11:04

Bad news


Got up Friday morning, off to wash, coughed, spat into basin, foook me that's blood! Also found that after a couple of very minor collisions where items of furniture had leapt out and tried to assault me, that I'd developed severe bruising of a colour that any Roman Emperor would be proud of (dramatic looking but not painful). Get on phone to radium doc, explain what's happened, he thinks this isn't caused by the radium but says go see your GP. See GP (not my usual one) she listens to my chest and is reasonably happy but says we're taking bloods. We will contact you if anything is wrong.


Got up Saturday morning, off to wash, coughed, spat into basin, foook foook foook, that's more blood than yesterday! Rang 111, they put me onto Devon Doctors (the out of hours GP service), the doc asks lots of questions and says she is concerned it could be a blood clot(s) in the lungs, get your sorry arse down to us at the RD&E. Do so, lots of questions, more bloods taken and referred on to the Ambulatory Medical Unit. See doc after a couple of hours, lots of questions, she says the bloods are OK apart from the platelets which are down to 95. The low platelets explain the extreme bruising. She also fears a blood clot and sends me for an CT scan with contrast. Canula fitted. Scan done at 3.30pm. Wait for results. Doc comes back at 6.30pm and says "good news, no blood clot". She believes the combination of the PCa, the pneumonia I had this summer, the chemo and the RT has damaged the lungs. She advises that I am very cautious during periods when my platelets are low. She believes the oral blood will correct itself once the platelets rise again. I will quiz my radium doc on typically when in the 28 days radium cycle that the platelets are low. I am equating this with the neutropenic period one has each cycle when on chemo.


Good news


I'm pretty confident now that my bone pain is reducing. The radium may well be working. I have reduced the pain killers and hope to trial with no pain killers in the next few days.


Lessons for those that follow me


Make sure you understand when your platelets may be low in each cycle and take extreme care of yourself.


Trust that the radium will reduce your pain.

User
Posted 22 Oct 2017 at 12:44

Oh dear - did they also look at why you might be coughing in the mornings? Fluid collecting on the lungs while you are laid down?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Oct 2017 at 13:10

They didn't. I have had a minor crackle in the lungs when lying down since about half way through chemo. There is a small amount of, mostly white, phlegm that I sometimes expel. I have mentioned the crackle to a couple of my docs and they have never seemed concerned by it. BTW I'm a non-smoker, I packed up in May 2005.

User
Posted 22 Oct 2017 at 16:08

It's good that the blood your coughing up isn't caused by a clot, hope your platelet count recovers soon.


Ian.

Ido4

User
Posted 22 Oct 2017 at 21:01
Oh David ,
This is such a rocky road isn’t it , some one once wrote on hear about the rocky toad and the boulders that we have to face Lyn will know who I am referring too .

I don’t make this common knowledge but my elder brother moved to Wales many years ago and has raised his children and know grandchildren in
Pembrokeshire so I have a whole army of family waiving you on from the Valleys .

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Oct 2017 at 07:51

Originally Posted by: Online Community Member
some one once wrote on hear about the rocky toad and the boulders that we have to face Lyn will know who I am referring too .


I'm guessing that will be spursspark.

Edited by member 23 Oct 2017 at 08:46  | Reason: Not specified

User
Posted 30 Oct 2017 at 19:13

Admitted to hospital from 24/10/17 to 28/10/17 with further bleeding from the lungs. IV antibiotics followed by oral. Meeting with Onco tomorrow. Further Radium 223 treatments now suspended pending platelets recovering and a general improvement in health. GP concerned by lung bleeds and is talking bronchoscopy if bleed doesn't cease in next 7 days. What with a suspect cyst on a kidney which the Onco thinks may be kidney cancer but is asymptomatic and a rising PSA and bone pain, I'm starting to doubt whether further treatment is worthwhile.

User
Posted 30 Oct 2017 at 19:39
Very sorry to hear this news as I was hoping that the bleed would have stopped. Hopefully when you have had the bronchoscopy and spoken to the oncologist the picture will become clearer and you can then review your options.
All the very best.

Kevan
User
Posted 30 Oct 2017 at 20:46

That's a blow - fingers crossed the onco has a brilliant plan C in mind.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Oct 2017 at 20:49

Tough news David - so sorry. Must be hard to stay optimistic when you are feeling so rough. Hope that the meeting with the onco offers some clear options and gives you something positive to hold on to. Will be thinking of you as ever and sending lots of love. Maybe beer will help?


Hugs


Ruth xxx

User
Posted 31 Oct 2017 at 06:51

David,

I am very sorry to hear your latest news, but looking forward to you telling us of an improvement in your situation in the next few days.

Chin up

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 31 Oct 2017 at 08:02
You have ha d a rough time mate, really hope that some good stuff comes your way very soon
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 31 Oct 2017 at 08:32

So sorry to hear this. Sending my best wishes and hope they can come up with a plan that works for you,

User
Posted 31 Oct 2017 at 08:59

Hello Dave. Sorry to read your update. Don’t lose heart I know it’s tough to keep spirits high and upbeat at these times. We are all routing for you.
Yvonne

User
Posted 31 Oct 2017 at 09:25

David,

Just saw your updates. That's a bit of a bugger. Wish you all the luck with the treatment and try not to stop the craft beer!

Steven

User
Posted 31 Oct 2017 at 09:25

David,

Just saw your updates. That's a bit of a bugger. Wish you all the luck with the treatment and try not to stop the craft beer!

Steven

 
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