I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Well, then not well.

User
Posted 07 Mar 2018 at 12:43
Hello, I have heard that you feel fine to start with having RT, But after two weeks you feel unwell,

What I would like to know is, how sudden is the change. I don't want to be Cought out regarding things like a sick note from my doctor.

User
Posted 08 Mar 2018 at 15:09

Zepfan, you don't have to buy a copy of the toolkit. It can be downloaded direct or you can ask one of the nurses to send you hard copies (although I expect a donation is welcome. That's what we did anyway.)

We can't control the winds - but we can adjust our sails
User
Posted 10 Mar 2018 at 16:27

No, they are specialist nurses employed by PCUK - they provide telephone advice, can put diagnosed men in touch with other men that have already been in the same situation, and can send out hard copies of the toolkit to people who can't download it from the website for some reason.

Macmillan nurses work in different ways depending on where you live. In some areas, they pick up cases where someone becomes terminally ill, providing nursing care, pain relief, financial advice on the benefits that can be claimed, etc. In some areas, they work out of the local hospice. In other areas, they are employed in the hospital to provide care and advice alongside the oncology staff.

The nurses that you have heard of but never met are, I think, the clinical nurse specialists. As you have picked up, some members here have amazing CNS who basically run the outpatient service - telling men their diagnosis, explaining the treatment options that are on the table, arranging ongoing PSA tests (and phoning with the results when they get them), keeping in touch and dealing with questions, meds and any post-treatment problems. Sadly we don't all have the same provision - where I live, my husband, dad, father-in-law and mother-in-law were all under the same CNS but we have never met her and she has never answered the phone or returned a message. I assume she is very nice but very busy :-/

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

Show Most Thanked Posts
User
Posted 07 Mar 2018 at 15:20

That is an over-generalisation. Most people don't get unwell on RT but some suffer fatigue of varying levels. My husband worked full time, went to the gym every night as usual and continued to play rugby. He needed a nap at his desk a couple of times towards the end but that was it.

Your company will need to know you are having RT so that they can support you but flexible working is probably the most important thing .

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

User
Posted 07 Mar 2018 at 16:17

Much depends on the sort of work you do, physical effort and continuous concentration levels over long periods but some men are more affected than others. I see you are now scheduled for RT and this in most cases is preceded by HT which in itself has varying side effects which are compounded by those of RT. You don't mention if you are on HT and if so how this is affecting you. As advised on another thread you started, it is worth getting a copy of the 'Toolkit' which goes into much greater detail.

Barry
User
Posted 07 Mar 2018 at 20:26
I’ve been on HT for 3 months and started RT 3 weeks ago

The HT caused me several problems

Fatigue

Breast growth / pain

Skin rashes

Anaemia

Decreased immune system

All manageable though, and since starting the RT I’ve noticed a sudden onset of extreme tiredness in the afternoons - however a short nap of 30 minutes relieves it completely

No bowel or urinary problems so far

I hope that I don’t get many more problems for the remaining 3 weeks of radiotherapy

User
Posted 08 Mar 2018 at 05:40

Thank you all again, I was told by my consultant that after two weeks I would be too unwell to work, I work for Siemens and they have been wonderful so far.
I start at 6 am and on my feet all day, so I will see how things progress. Thank you all

User
Posted 08 Mar 2018 at 06:21

On the other hand you may be fortunate as I have been. I have been on HT since 19th Jan and I don't believe I have had any side effects of note. I have been coming to work 2 hours early nearly every day and I worked last weekend as I am in the middle of a busy project. I work from a desk but often spend time in a large factory (Nissan car manufacture). I am 50 years old.
Richard

User
Posted 08 Mar 2018 at 09:04

Thanks all, It looks as though it depends on the individual,

Barry I will look into buying a copy of the 'Toolkit' thanks.

User
Posted 08 Mar 2018 at 14:12

hi
my husband took 6 months off when he had rt he was recommended by onco to take this time off, he was a postman at the time and he had a 100 mile round trip for his rt so I think that was part of the reasoning for that.
#regards Barbara

User
Posted 08 Mar 2018 at 15:09

Zepfan, you don't have to buy a copy of the toolkit. It can be downloaded direct or you can ask one of the nurses to send you hard copies (although I expect a donation is welcome. That's what we did anyway.)

We can't control the winds - but we can adjust our sails
User
Posted 10 Mar 2018 at 13:40

thanks Johsan, The nurses you mentioned are a bit like the yeti, Ive heard they exist but ive never actually seen one ;-)

User
Posted 10 Mar 2018 at 14:33

No, the nurses here at the charity not the ones at your hospital! Phone the number at the top of this web page.

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

User
Posted 10 Mar 2018 at 15:58

Thanks Lyn,
Are these the Macmillan nurses ive read about?

User
Posted 10 Mar 2018 at 16:27

No, they are specialist nurses employed by PCUK - they provide telephone advice, can put diagnosed men in touch with other men that have already been in the same situation, and can send out hard copies of the toolkit to people who can't download it from the website for some reason.

Macmillan nurses work in different ways depending on where you live. In some areas, they pick up cases where someone becomes terminally ill, providing nursing care, pain relief, financial advice on the benefits that can be claimed, etc. In some areas, they work out of the local hospice. In other areas, they are employed in the hospital to provide care and advice alongside the oncology staff.

The nurses that you have heard of but never met are, I think, the clinical nurse specialists. As you have picked up, some members here have amazing CNS who basically run the outpatient service - telling men their diagnosis, explaining the treatment options that are on the table, arranging ongoing PSA tests (and phoning with the results when they get them), keeping in touch and dealing with questions, meds and any post-treatment problems. Sadly we don't all have the same provision - where I live, my husband, dad, father-in-law and mother-in-law were all under the same CNS but we have never met her and she has never answered the phone or returned a message. I assume she is very nice but very busy :-/

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

User
Posted 10 Mar 2018 at 17:35

thanks again Lyn for your time and explanation

User
Posted 10 Mar 2018 at 23:55

Have you had that overdue hormone injection yet?

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

 
Forum Jump  
©2019 Prostate Cancer UK