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User
Posted 30 Oct 2019 at 22:24

Tony saw oncologist today and I told him nephrologist has said he would rather cancer was dealt with and he could delay kidney treatment so Dr P is going to see if he can do RT on lympth nodes without damaging kidneys more so hopefully he will start RT in December, will have a RT scan soon and that will determine weather this will go ahead so fingers crossed. will mean 5 weeks of a 100 mile round journey but its worth it and when Tony had RT when first diagnosed he sailed through it with no real side affects so hopefully this will be the same.

 

onwards and upwards. 

 

barbara 

 

ps been on the red wine so ignore typo's xx

User
Posted 31 Oct 2019 at 01:54

😆😆🍷🍷 x

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

User
Posted 31 Oct 2019 at 08:51
That reads hopeful news. Fingers crossed for you both.

Ray

User
Posted 31 Oct 2019 at 12:53

Hope RT goes well. 

Ido4

User
Posted 05 Nov 2019 at 13:20
Bit of advice needed, whenTony was on RT last time (14 years ago) he did not have to do any preparation this time he has, what foods do anyone recommend to help prevent the build up of wind ( believe me he needs this cause he is very windy) also he has to have a micro enema that he has to do before the RT and I think he will have to do this at the unit as it is a minimum of an hour away, how easy is this to do. Any other tips would be appreciated. thanks

barbara xx

User
Posted 05 Nov 2019 at 16:58

I can't remember the exact term but it is like a low fibre diet - a low emissions diet? Nothing that will cause wind or irritation (wholemeal wheat, bran, pulses, etc.) It is quite restrictive. I basically lived on white bread, fish and stuff like that. Boring but it did help.

I took my enema at the hospital. I made sure I was at least fifteen minutes early. Easu to apply, snap, shove, squeeze (trousers and pants down first of course!!!) :) The reason I say that is that when it kicks in you may need several visits to the loo before it settles down and you do not want to have the runs on the bench!

I nearly did wet the bench one day as things got delayed after my drink, so keep an eye on drink timing too.

Good luck.

PP

 

User
Posted 05 Nov 2019 at 20:50

Hi Pete

thanks for your reply, last time he used to drink the water on the way to the hospital this time he has to empty his bladder when he gets there, he has to be there an hour early and then drink 4 cups of water when he gets there, everything is so different.  

 

regards Barbara x

 

User
Posted 17 Nov 2019 at 09:06

Update on RT

had a phone call from the nurse to make sure Tony was doing the preparations for the planning scan, went through everything for about 10minutes and I mentioned that the only thing he was dreading was doing the enema as he didn't have to do it when he last had RT 13 years ago, Nurse asked me could I hold on a minute whilst she read the notes after a while she said forget everything she had just said and she would ring me back after she had spoken to radiologist, rang back and said he does not need to do any of the preps as it is on his nodes on his back and apologised and said it is a generic pack they send out and she will try to get things changed so this does not happen again and he does not need to be there an hour before his appt just 15 mins before and all Tony needs to do is keep hydrated. Planning and tattoos tomorow.

 

regards barbara xx

 

 

User
Posted 21 Nov 2019 at 19:59
Tony saw the nurse today forhis next prescription of abiraterone, psa now up to 2 but she was not worried about that said everything else was ok and gave him prescription for another 5 weeks. Kidney appt on Monday then no more appts till RT starts on 12th December,

regards barbara.

User
Posted 14 Dec 2019 at 07:42

Tony has now started his RT on para aortic node, he has been given anti sickness pills as they say it is very likely he will feel sick because of where the RT is aimed, they told him to start tacking them straight away but he is going to wait to see if he needs them as he already takes loads of tablets and doesn't want to take more unless he really needs to. Roll on the 17th Jan when this phase finishes, its an 84 mile round trip each day so a bit tiring for him and I do not drive. His brother and my sister are going to take him some days and I will also get my son to take him on some of his days off.

Have a good Christmas all.

 

regards barbara x

User
Posted 14 Dec 2019 at 10:36

It’s good that he has others who will help with the driving, that’s a long round trip.

Hope you all have a nice Christmas.

 

Ido4

User
Posted 04 Jan 2020 at 09:42

Tony is now just over half way through his RT, so far he is not too bad, very tired and feeling sorry for himself but think that is more the travelling and the dreaded Christmas cold we have both had since xmas eve. He has 2 weeks left and then a bit of time off before the next appt and results from the RT. Happy new year to everyone.

 

regards Barbara

User
Posted 05 Jan 2020 at 10:22

Happy New Year to you and Tony. The travelling to and from radiotherapy appointments is tiring. I found I got very tired at the end of each week, using the weekend to recover.

Hope the final 2 weeks go well. 

Ido4

User
Posted 17 Jan 2020 at 06:51

Last day of RT today and will be seeing Tony's consultant. probably why I have been up since 4. He hasn't had any bad affects from the RT so that was good although the travelling has made him very tired, will be glad when today is over though. It does look like it has not made his kidneys any worse though as on his last blood test his kidney function was the same as when he started rt.

 

regards barbara

User
Posted 17 Jan 2020 at 09:50

Good luck today with both the last RT session and with consultant appointment.

Ido4

User
Posted 18 Jan 2020 at 11:18
Hi

All went well yesterday, saw the oncologist and he was pleased with how it has gone. Tonys psa is at 2.7, at the start of RT it had gone up to over 4 so that was good and his bloods where ok to carry on with the arbiriterone so can relax now till next appt at end of February.

regards Barbara x

User
Posted 18 Jan 2020 at 11:35
Good news for you Barbara, I hope you slept better last night?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2020 at 22:31
Hi Lyn

yes much better thankyou and it does not look like it has done any more damage to Tony's kidneys so that is a bonus as well.

barbara xx

User
Posted 26 Feb 2020 at 17:46

Tony saw his consultant today and his psa has gone down to either 0.2 or 0.02, I was so shocked and pleased at how low it had gone I cant actually remember, so will wait for copy of the hospital letter to arrive but either way I don't mind and over the moon really. Oh and his kidney function has stayed at 8% so the RT has not done any more damage to them and he still has a bit of a reprieve from going on dialysis. xxx

onwards and upwards

barbara x

Edited by member 26 Feb 2020 at 17:47  | Reason: Not specified

User
Posted 26 Feb 2020 at 23:02
That's brilliant news, Essexbabe - how wonderful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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