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Radium 223 - the highs and the lows

User
Posted 13 November 2017 18:31:18(UTC)

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

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User
Posted 13 November 2017 23:29:58(UTC)

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

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User
Posted 15 November 2017 16:56:54(UTC)

Situation update - David's still in hospital still on oxygen, now with added humidity. Further scans have been inconclusive, The results of today's blood tests are awaited. If the infection markers have gone down, they'll continue with the current antibiotics. If not, they'll try something new, but I don't think there are that many new things left. They also plan to move him from the ward he's currently on to a specialist respiratory ward. To me he seems better than he was on Saturday, but any improvement in the last couple of days has been marginal. He's not eating all of what's put in front of him but is making a good attempt. Still little mobility - he can make it from bed to chair and back with help, but no further.

User
Posted 15 November 2017 18:42:28(UTC)
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
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User
Posted 15 November 2017 19:08:41(UTC)

Many thanks Julie. Much appreciated. I'm sure it'll be nice and warm and very welcome.

Linda

User
Posted 15 November 2017 20:12:17(UTC)

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

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User
Posted 15 November 2017 21:17:44(UTC)
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
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User
Posted 15 November 2017 22:17:16(UTC)

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

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User
Posted 16 November 2017 19:30:30(UTC)

David has been moved to the respiratory ward and saw the consultant and a junior doctor this morning. Based on his condition and the blood tests, the second antibiotics they tried have not been effective so they've have started him on a third type - the strongest one available and the only one left to try.

I went in today and got the junior doctor to explain the situation to me. He was quite clear.

They'll continue with this last antibiotic over the next 3 days and review things on Monday. If it works, wonderful. If not, they might try steroids which might work but only if the pneumonia is not infection based, but this is very unlikely. I did get the impression that this really would be clutching at straws and they may not do it anyway.

Regardless of all this, the doctor is making a referral to the hospital's enhanced palliative care team. He expects them to come to see David fairly soon and I have asked to be present at that meeting. It's important that we both understand how things might happen. I've also let our Hospicecare nurse know what is going on.

In the meeting involving the consultant this morning, David did ask how much time is likely to be left if the pneumonia can't be overcome - he said weeks.

As you might imagine I feel shocked and a bit overwhelmed. I've read many posts on the forum by people who have reached this point on the rocky road. Now I really understand how they felt.

User
Posted 16 November 2017 19:56:26(UTC)

So sorry and all our hopes with you xxx




If life gives you lemons , then make lemonade
User
Posted 16 November 2017 20:03:13(UTC)

Oh Linda - I hope that you do have weeks or even months. A little bit of me worries though that this could all happen much quicker than you might be prepared for; I hope the palliative care meeting happens soon so that you have some confidence and peace of mind about what to expect. Has David ever expressed views about where he would prefer to be when the time came? If not, the palliative team will be able to help you both to start that conversation.

I suspect he wants to get out of hospital asap - he won't like being around poorly people! Fingers crossed for you that the new antibiotic works and he is home soon xxx

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


User
Posted 16 November 2017 21:02:55(UTC)

Thanks Lyn

We've had that conversation between us and with the hospice nurses. I'm clear about it and absolutely supportive. His preference is the hospice, second choice would be home, and third choice by a long way would be hospital.

User
Posted 16 November 2017 21:09:31(UTC)

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

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User
Posted 16 November 2017 23:49:21(UTC)

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

 

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User
Posted 17 November 2017 08:09:13(UTC)
So sorry to read this news. My thoughts are with you.

Kevan
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User
Posted 17 November 2017 08:18:26(UTC)
So sad to read your updates—my thoughts, love, and prayers are with you both at this difficult time. X
User
Posted 17 November 2017 08:22:34(UTC)
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"
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User
Posted 17 November 2017 09:54:09(UTC)

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.

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User
Posted 17 November 2017 17:12:48(UTC)
So sorry to read that things are not working for David right now. I hope you have lots of opportunity to tell him the things that you have loved about life together, in my humble opinion, there is nothing better to be told how much one is loved.
Thinking of you both
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 17 November 2017 17:56:36(UTC)
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
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User
Posted 17 November 2017 21:23:43(UTC)
Linda,
I wish I could say something positive and meaningful to help you but I can’t so I am just going to send my love.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 November 2017 22:27:01(UTC)

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

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User
Posted 18 November 2017 21:45:32(UTC)

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

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User
Posted 19 November 2017 08:48:41(UTC)

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
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User
Posted 19 November 2017 11:08:48(UTC)

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

Clare

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User
Posted 20 November 2017 19:51:29(UTC)

Yesterday (Sunday) when I visited, David had what looked like a pressure sore on his back. He's had small red sores on the tops of his ears for some days caused by elastic holding the oxygen mask in place. They'd dealt with the ears by taping small foam tubes round the elastic at appropriate places, but this rather Heath Robinson affair was starting to come apart. You'd think they'd have a better solution wouldn't you?

A mixed visit today. When I arrived David was sitting in his chair, but said he’d had a bad morning with some pain, which was now largely under control. He was on a saline drip, which they said was because the bloods showed an electrolyte imbalance. But when I managed to get hold of a doctor, he said that the infection markers had been dropping over the last couple of days and they'd also given him a dose of steroids (prednisolone I think). David says he doesn't feel any better, especially after the bad morning, but the sats were at 99 – 100 % - much higher than previously, so they are starting to turn the oxygen flow rate down to see if this can be maintained at lower levels of oxygen flow.

They have put a dressing on the sore on his back and he says they're checking other areas to make sure there are no others. I also got them to give me the materials to make a better job of the foam protection on the oxygen mask elastic. The elastic was escaping from the foam tube and rubbing again.

We didn’t get to see the Enhanced Palliative Care person this afternoon. So I’m going to call them tomorrow to try and arrange a more specific time for them to visit David so I can be there.

So, although he's far from out of the woods, there are some small positive changes. If this carries on he may start to feel better. Fingers (and everything else) crossed!

User
Posted 20 November 2017 21:22:30(UTC)

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

 

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User
Posted 20 November 2017 23:01:33(UTC)

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

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User
Posted 21 November 2017 08:00:28(UTC)

Thinking of you and David ,
Best wishes
Debby

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User
Posted 21 November 2017 08:02:59(UTC)

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


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User
Posted 21 November 2017 16:14:13(UTC)

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

AC

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User
Posted 21 November 2017 18:22:48(UTC)

After yesterday's small positives, today was quite upsetting. David was asleep when I arrived at 2.30 and seemed reluctant to wake so I just read for a while. He stirred after about 20 minutes but was very confused. And he stayed confused for most of my visit. He kept removing the oxygen mask, which probably added to his confusion. He’s never been that bad before. The nurse from the EPCT (Enhanced Palliative Care Team) arrived and we had a long chat in the relatives room. She has managed to clarify things a bit. The infection markers are down but his breathing is not much better so I think they are a bit puzzled about what is actually causing the problem. The pain seems under control and the plan is to continue with the current antibiotics for two more days and review the situation then. In the meantime she has arranged that I can visit at any time and won’t be charged for parking. So I’ll be able to avoid peak times and both the travelling and the parking will be easier – one less source of stress as parking at RD&E is a nightmare most of the time..

Just before I left David was in his chair and seemed to be confused by my presence. 5 or 6 times he tried to get up and said ‘let’s do it’ or ‘let’s go then’. When I asked what he wanted to do he said he didn’t know. It’s terrible to see him like this.

User
Posted 21 November 2017 19:13:05(UTC)

The hospital has just called. The results of some blood tests have caused some concern – low haemoglobin levels. They are waiting for confirmation from a blood specialist but may do a blood transfusion overnight. They said levels have not fallen enough to indicate immediate danger but this sounds serious.

User
Posted 21 November 2017 19:13:16(UTC)

I am so sorry Linda. Did the nurse have any explanation for the confusion? I suppose it could be as a result of infection and / or because the breathing difficulty means he has less oxygen getting to his brain, or could be nature's way of preparing him - I was told (in a similar situation) that the confusion dulls the mind as a natural painkiller kicks in, usually after the person has stopped eating or drinking. Sometimes, the confusion clears quite suddenly and we get our loved one back, even if only for a short time. I am praying that you have your David back tomorrow x

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


User
Posted 21 November 2017 19:38:07(UTC)

I hope so too Lynn. He's drinking quite a lot of water and other fluids, but I don't think he's eating much.There was no explanation for the confusion but he does seem to be removing the mask to drink and then forgetting to put it back.The doctor I talked to had a very strong accent and used a lot of technical terms so was quite difficult to follow, but I understood that there are a number of possible blood disorders that could be at the root of this and they haven't got a diagnosis yet. I plan to call first thing tomorrow and then take it from there.

User
Posted 21 November 2017 20:00:23(UTC)
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
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User
Posted 21 November 2017 21:37:14(UTC)

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

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User
Posted 22 November 2017 06:26:32(UTC)

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.

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User
Posted 22 November 2017 14:50:07(UTC)

I’ve just got back from the hospital – it’s now 2.30 pm. When I arrived a doctor and a nurse took me into the relatives room. Oh no, I thought, this is not good. They said that they had not done the transfusions as David had had a bad reaction to their first attempt. Also the infection markers are rising again so the antibiotics are not doing anything. The doctor said that there was now an added complication – the prostate cancer seems to be attacking the red blood cells and the platelets. So they are withdrawing all active treatment and there’s nothing more they can do except keep him comfortable. If a hospice bed becomes available (there are only 12 beds I believe) they plan to move him there. If not, he’ll have to stay on the ward. It's not too bad - 6 beds and reasonably quiet, but the hospice would be preferable.

When I went to see him, they had put him on a different mattress as he is now unable to get out of bed. He’s also been catheterised – something he’d always feared – but he said it was comfortable. He was much more lucid than yesterday, although was tending to drift a bit if the oxygen mask was off for any length of time for eating and drinking.

He’s quite calm and doesn’t seem distressed in any way. After about an hour he started to nod off so I left him to sleep. The hospital will let me know if they move him to the hospice.

User
Posted 22 November 2017 15:15:27(UTC)

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
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User
Posted 22 November 2017 16:11:09(UTC)

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

Ruth xxx

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User
Posted 22 November 2017 16:13:46(UTC)
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
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User
Posted 22 November 2017 16:15:36(UTC)

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

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User
Posted 22 November 2017 16:58:01(UTC)
Thinking of you both and hoping that David will remain comfortable and pain free.
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User
Posted 22 November 2017 17:44:13(UTC)
So sorry to hear this. Will be thinking about you both.
Debbie x
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User
Posted 22 November 2017 17:48:15(UTC)

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

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User
Posted 22 November 2017 17:53:49(UTC)

Linda,

I am so saddened by this news, I really don't know what to say other than to pass on my very wishes to you and David.

It really is such a short while back that myself and David were neck and neck in our Chemo journey enjoying the banter as we went along.

It really is quite something and quite sobering to see that we are all so close to the edge and one move can have such a devastating outcome.

Kindest thoughts and regards to yourself and David

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 22 November 2017 18:12:14(UTC)

With hindsight one can see that the start of the really downward slope was the pneumonia he got after chemo session 9 in May. Although there were a few ups, the trend was inexorably down.

Thanks everyone for your kind words and support. I do tell him about them (he has no access to the internet) and I know he appreciates you all.

Linda

User
Posted 22 November 2017 19:00:01(UTC)
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
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User
Posted 22 November 2017 19:20:56(UTC)

My thoughts continue to be with you both x

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