Tony starting on Diethylstilbestrol

User

Posted 25 Sep 2021 at 14:18

Oh no! Sorry, I completely missed this Barbara; how awful it must be for you both, and quite frightening, I imagine. Have they managed to transfer him now?

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

User

Posted 25 Sep 2021 at 23:01

Hi Lyn

Tony is still in City hospital nottingham, Lincoln have agreed to take him but they still do not have a bed, 2 of my children are meant to be going to see him on monday but they will be travelling from Brighton and the hospital have said that even if they phone before they leave to make sure he is still in city hospital if a bed becomes available he will be transfered at a moments notice, hopefully his brother will see him tomorow i am going to book the hotel in city hospital for tuesday and wednesday in case he is still there then, I can just cancel it if he has been moved and will not get charged. It was really scary when it happened, there was an almighty scream and i thought the worse when i saw him on the floor but then he started moaning but i felt sick seeing him like that. He doeas seem to have improved a bit but not sure if that is just that they have got the pain more under control, He can move all his arms and legs etc but has to wear a really large collar that goes under his chin and right up to almost the top of his head so not very comfortable, at least he is alive that the main thing.

regards Barbara xx

User

Posted 02 Oct 2021 at 08:31

Well Tony is still in City hospital Nottingham, they are still trying to get him transfered to Lincoln hospital but no joy so far although they have agreed to take him but no beds available yet. Tony is getting quite upset about being so far away and now with the petrol situation it makes it even harder to get over to see him. Tony does look a lot better in himself but he has lost over 10 pounds in weight since being in hospital and that is not good.

regards barbara x

User

Posted 02 Oct 2021 at 09:38

I only spent one night myself in hospital and I did not enjoy it.

I visited a family member who was in hospital for about a week. Nothing ever seems to happen, doctor does his rounds, says I'll book you in for this or that, then it gets delayed, cancelled, and another day has passed and nothing happened. I said to the patient can't we just discharge you and have the scan when it is ready, but apparently that would have put them at the end of an outpatient waiting list. So they had to use up a hospital bed for about a week just to keep their place in the queue.

Hope he gets to Lincoln soon.

Dave

User

Posted 02 Oct 2021 at 11:52

I am so sorry Barbara, I hope you get some progress soon x

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

User

Posted 06 Oct 2021 at 22:15

Tony has finally got transfered but not to Lincoln hospital but to Skegness Hospital, this is quite a relief as it is walking distance from where we live, hopefully he will not be in there too long as he can now walk a small way with a walker and this hospital gets patients on there feet so they can get home, OT should sort out what we will need for him to come home safely and any equipment we might need.

feeling positive

Barbara x

User

Posted 07 Oct 2021 at 00:42

Lovely news Barbara - I hope he is back home with you soon x

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

User

Posted 07 Oct 2021 at 10:37

So pleased to hear Tony is up on his feet again and close to home. All the best going forward and hope he’ll be back home with you soon.

Ange x

User

Posted 18 Oct 2021 at 07:52

Fingers crossed and everything else Tony should be home today, he is going to dialysis at 1 pm and they should be brinking him home from there, he is still not fully mobile but at least he will be here and back in time for our 48th wedding anniversary on the 20th.

feeling optimistic

barbara xx

User

Posted 18 Oct 2021 at 08:59

Fingers crossed here too for you . Hope all goes well and Tony gets home, and feels better.

Phil

User

Posted 18 Oct 2021 at 10:26

Hope he gets home today.

Ido4

User

Posted 19 Oct 2021 at 09:21

Tony is home, hard work and shattered but home.

regards Barbara xx

User

Posted 19 Oct 2021 at 10:49

That's wonderful news - what a relief. Don't forget to take care of yourself while you are taking care of Tony - who nurtures the nurturer?

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

User

Posted 19 Oct 2021 at 11:06

Fabulous news. Take care.

Ido4

User

Posted 19 Oct 2021 at 14:26

Great news Barbara. All the very best to you both and a “Happy Anniversary” for tomorrow!

Ange x

User

Posted 20 Oct 2021 at 23:02

I just read your profile. Pleased to read he's home.
Best Wishes
Peter

User

Posted 01 Nov 2021 at 07:47

Update on Tony,

He is doing quite a lot better at home but is quite exhausted after doing anything, he has no appetite and the renal dietician is precribing special milk shake type drinks to try to get him to put some wait back on, he can now get up and down the stairs as they put grab rails etc in place and hopefully he will move back in to our bedroom upsatairs very soon. Tony is still in pain although not as much as he was. Tony is due an appt this month with his oncologist but i am not looking forward to it as this what has come back from the

Xray and scan he had after the fall. (Thoracic spine structure (Xa9ZC) - Abnormal marrow deposits, within inferior aspect of T9 and T4 as well as left aspect of C5 - suspicious for metastatic deposits (New Episode)Suspected malignancy (1J0..) - Suspected bone mets)

I havent mentioned this to Tony but it does not look good to me but will just wait to see with my fingers crossed,

regards Barbara x

User

Posted 01 Nov 2021 at 09:18

Barbara, I really feel for you and Tony.

I hope he feels a bit better soon and can get back up the stairs.
Fingers crossed your appointment goes as well as it can 🤞

Goid luck, thinking of you both x

Phil

User

Posted 01 Nov 2021 at 14:06

Thinking of you both Barbara and keeping my fingers crossed for Tony’s next meeting with his Oncologist.

With very best wishes,

Ange xx

User

Posted 16 Nov 2021 at 17:02

Tony has his appt with oncologist tomorow after dialysis so it will be a long day, feeling very aprehensive about it, Telephone appt again. I just have a feeling it will be not very good news, really hope i am wrong.

barbara x

User

Posted 16 Nov 2021 at 17:18

Here is a virtual hug Barbara; update us when you can x

< <<<< hug >>>>

Edited by member 16 Nov 2021 at 17:19 | Reason: Not specified

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

User

Posted 16 Nov 2021 at 22:34

Hey Barbara, I've been following Tony's story for a while, so many ups and downs. Lets hope its not as bad as you fear tomorrow. Take care and all the very best, Nick.

User

Posted 18 Nov 2021 at 07:55

Tony had his appt with his oncologist, as usual he said he was ok , Dr P asked how he was after his fall and what damage had he done etc. He then said Tony's PSA had risen to 9 now but he was happy to keep on same treatment as he is already on, he was not to worried about the scan as he has no swelling or anything like that, he has made a note of how much weight Tony has lost (almost 3 stones) and has said we can keep him going for a while yet so that was a promising thing. Tony is now having high calorie medical milk shakes twice a day so hopefully that will build him up a bit, I feel a bit better about things now. onwards and upwards till next appt.

thanks all

Barbara x

User

Posted 30 Dec 2021 at 08:56

Tony had another fall yesterday. not a bad one but i heard a loud bang and when i went up he had fallen on the floor in the bedroom while getting dressed. it was dialysis day and he always has a sleep after so this was late afternoon, when i went in there he started crying and said he was useless and cannot get anything right, so we where both in tears. It took about half hour to get him up and he said about his life revolving round dialysis and not being able to do anything. Tony was sick on christmas eve and didnt have any dinner christmas day, sat in the front room while the family where round eating dinner in the back room. My daughter who lives in Kent was up and she kept getting tearful, i dont think she realised how downhill he had gone since she last saw him, he did rally round a bit later on. When he agreed to go on dialysis as his function had gone to 5% he thought it would give him a bit more energy but think it has made him worse. sorry for the long post just needed to get it out of my head.

regards Barbara x

ps Happy new year all xx

User

Posted 30 Dec 2021 at 13:57

Oh bless you Barbara. It’s good to be able to let it all out on a forum such as this one, where everyone is there for you! I’ve followed Tony’s journey and what a warrior he is.

Wishing you both all the very best going forward.

Ange x

User

Posted 30 Dec 2021 at 16:40

I am so sad to see this Barbara; it must have been very upsetting for all of you and a shock for your daughter particularly. You have been amazing throughout Tony's illness but especially this last few months - do remember while you are being strong for everyone else that you also need someone to be strong for you sometimes. We used to have a wives' / partners' mantra on the forum ... who cares for the carer? Sometimes, we can be that support but you also need something real and tangible; a short break to get your hair done or walk in the rain or to just be Tony's wife and not his nurse. I hope that you have that support around you.

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

User

Posted 31 Dec 2021 at 22:14

icing on the cake i now have covid xx

User

Posted 01 Jan 2022 at 12:13

So sad to read your post Barbara. Really hope Tony is feeling a bit better.

Hope you shake off the covid too and not too poorly with it.

Take care

Elaine

User

Posted 06 Jan 2022 at 07:25

How are you coping with COVID do you know how you contacted it and has Tony not contacted from you

User

Posted 06 Jan 2022 at 10:20

I just have a really nasty cough and an occasional headache, Tony has not caught it and hopefully will not. I am being really careful around him , wear a mask and sanitizing hand etc. He goes to dialysis 3 times a week and he is in isolation room there and they check him for covid every time at the moment. We are lucky that we have a front room and back room so i can keep well distanced from him. I did a test today and it is still coming up positive so cant come out of isolation early.

regards

Barbara x

ps I went to the Vine hotel in skegness on boxing day with my daughter and grandaughter, so that is where i got it.

User

Posted 08 Feb 2022 at 16:29

Tonys Oncologists secretary phoned today, said Dr P had a slot available for tomorow afternoon if he would like to take it , he did do squeeky b.m time as his PSA has gone up to 21 so not expecting good news.

barbara xx

User

Posted 08 Feb 2022 at 16:44

Good luck both , fingers crossed 🤞

User

Posted 09 Feb 2022 at 10:43

Good luck for this afternoon Barbara, thinking of you both.

Ange x

User

Posted 09 Feb 2022 at 13:39

Best of luck for today 🤞🏼

User

Posted 09 Feb 2022 at 18:46

Thinking of you both.

Ido4

User

Posted 09 Feb 2022 at 19:34

Tony had his appt with his oncologist who confirmed the treatment is no longer working, he is going to put him on steroids as he has been off of them for almost a year to see if they help, he is sending him for a scan to see what is going on in regards to pain as it could be the cancer or the damage he did when he fell down the stairs,Dr P is also reffering him to the Macmillan nurses as they will be able to sort out pain relief when he needs it. not as bad as i thought it would be but just hope the steroids do some good.

regards Barbara xxx

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Tony starting on Diethylstilbestrol

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