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The other C word - extra care needed in the current COVID situation?

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User
Posted 03 Mar 2020 at 08:49

Any thoughts or knowledge on whether cancer patients need to take extra care in the current situation, media madness notwithstanding?

User
Posted 11 Mar 2020 at 17:40
PP

You agreed to remove what you concurred was the inappropriate part of your post but it is still there viz "It is not their fault - it is the bloody tories putting profit before lives as always. China and Korea got over the hump with mass lockdowns and we keep deferring them."

I have not yet done so but will report it to Moderators if this is not removed. Apart from somebody who made an injudicious remark sometime ago about Brexit, for which an apology was subsequently tendered, this forum has been free of party politics and I hope will remain so.

Barry
User
Posted 10 Mar 2020 at 11:09

I'm 50/50 on the risk situation but am socially distanced by default as I am unemployed (finally a bonus!). We are going to decide in the few days before we go. I expect the UK numbers to have gone exponential by then so it may be a more obvious choice.

My frustration is my wife is not getting the idea that she needs to put a pause on her communal evening social activities BEFORE things get tasty. She gets cross and calls me a worrier.

I rang PCUK also and they were much the same as my onco nurse - wash your hands and make your own risk assessment.

Edited by member 14 Mar 2020 at 14:59  | Reason: Not specified

User
Posted 14 Mar 2020 at 15:24

I rang my onco nurse a short while ago and she said that at nearly a year and a half since last treatment I am no different to a member of the public.

The main concern for me was stress but as I quit my job late late year (which was killing me) that is far less of an issue ( I have savings).

I don't saying that I am scared by all this but then again, I suffer from anxiety.

That being said, we can only control what we can.

I am self isolating (easy) as much as I can (limited as my wife works and we have to go shopping).

I'll either make it or I won't.

User
Posted 20 Mar 2020 at 10:10

Below is some  our link to  information about coronavirus (COVID-19) for people who have, or have had, prostate cancer.

This information aims to answer some of the questions you may have at this time. We will update this page in line with any official advice changes and to make sure it answers common questions. You can also contact our Specialist Nurses for further information and support.

https://prostatecanceruk.org/prostate-information/coronavirus-covid-19-and-prostate-cancer

Help us to support you at this time

We want to know from you how we can best support people affected by prostate cancer during the coronavirus outbreak. Please complete our short survey to let us know what support and information would help.

Sue 

Peer Support Manager

Edited by member 20 Mar 2020 at 11:57  | Reason: Not specified

User
Posted 24 Mar 2020 at 16:30

HT lowered my red and white blood count, I stopped HT a few months ago and its gone up a bit but still on the borderline low  end

my GP told me that Im at risk of severe illness if I catch Coronavirus so it looks like i will be working from home for 3 months 

User
Posted 03 Mar 2020 at 08:49

Any thoughts or knowledge on whether cancer patients need to take extra care in the current situation, media madness notwithstanding?

User
Posted 04 Mar 2020 at 17:16
I find the hysteria irritating and it seems irrational to suggest that someone who had primary RP or RT 2, 5, 10 years ago could be at greater risk. However, men that have had PCa are entitled to a flu jab on the NHS so maybe 🤷‍♀️

Soap and water.

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

User
Posted 04 Mar 2020 at 23:02

Originally Posted by: Online Community Member
By the way, never had to get the form signed by my GP - I just do it in the chemist, but that only works if you fit the circumstances on the list. If you're not entitled to one on the NHS, you can still buy one for around £12.

 

What? Have you misread or perhaps at crossed purposes? Just about every man on this forum will be entitled to free prescriptions but they have to get a medical exemption certificate - you can be fined for just ticking the box on the back of the prescription and saying you have a valid certificate when you haven't! A prescription medical exemption certificate application form can be collected from the pharmacy, you complete your details and then the GP (or at some surgeries there is a nurse that is allowed to) completes the section confirming that the cancer / cancer treatment criteria have been met. The certificate last for 5 years but most men on here would be entitled to renew unless they reach the age of 60 in which case they don't need to. You definitely can't buy an exemption certificate. 

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

User
Posted 04 Mar 2020 at 23:08

"Cancer is not listed as a valid reason to get a flu jab on the NHS, so just like with anyone not on the list of illnesses or circumstances, an NHS one is at the discretion of the GP."

Interesting ... yet another postcode lottery. John gets his invite every year, due to his PCa.

It would be so much easier for everyone if there was a bit more consistency across the nation but gosh, what would we all find to talk about? 😂

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

User
Posted 10 Mar 2020 at 16:10

It's the elderly and sick who need to take care, along with their family members who visit them.   In Italy 99% of the deaths are over 60 years old.   Why Italy has so many deaths isn't clear except they have a big wandering population of tourists and their family life is often more integrated than most north European countries.

The government is playing it right by being cautious on closing things down.  Closing businesses and events has big effects on families and they won't be thanked for creating panic and a lot of inconvenience, especially if it isn't needed and businesses go bust.

The plan is to slow down the peak so the health service has a better chance of coping.

I'm not using cash, not that I ever do.  One shopkeeper said to me she's amazed at how many people put notes in their mouth when they're fiddling about in their purses.  Cash is so unhygienic.

User
Posted 13 Mar 2020 at 18:32
I’m in quite a fortunate position being a school caretaker lol. I have a container-load of loo rolls and towels etc etc. oh and three giant freezers full of food. I may just lock myself in there when they close the schools :-))

On a serious note though this is gonna get tough. I’ve not been able to buy painkillers etc for days. Just glad I make all my own wine before that runs out too.

Take care all x

If life gives you lemons , then make lemonade

User
Posted 24 Mar 2020 at 22:48
Try not to worry Gilly - research showed that even men who had only been able to have 2 or 3 sessions of chemo got some benefit from it and their HT was more effective for longer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Mar 2020 at 17:29
That's is with this virus isn't it? No one knows...

Our business is aligned closely with the holiday trade. Our income has gone literally to nothing within a couple of days :( It will take a long time before people start going on holiday again and the summer is when we make the money to tide us over the quieter winter months. We are watching what the government give the self employed. We are worrying about our longer term ability to pay the mortgage. It is a mess to be sure. So we are either worrying about the state of our finances or his PCa. Oddly he's sleeping like a log but I'm averaging 4 hours. I nod off ok but I'm awake worrying about either or both in the early hours.

Although I reckon we will all go mad from this lockdown.😄 Jigsaws at the ready.!

User
Posted 28 Mar 2020 at 22:33
In the end, it is all about statistics. Statistically, a man diagnosed in 2009 and having no treatment (just active surveillance) did just as well as the man who had surgery, the one who chose brachytherapy and the one who had radiotherapy and all 4 of them had a very high chance of still being around in 2019.

If those 4 men were being diagnosed right now, the stats would be rather different. The one who went into hospital for surgery would be far less likely to still be here in 10 years than any of the others, who would be either self isolating at home or possibly venturing out for a hormone injection and then staying safely at home.

I can imagine it is scary to be diagnosed and then seem not to be doing anything about it. If following the MDT they still think surgery is feasible, they may suggest hormones for the time being to control the cancer until COVID has abated. On the other hand, if the MDT decided that surgery was not a suitable option because of his staging, he could be starting on the hormones within a couple of weeks.

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

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User
Posted 03 Mar 2020 at 09:34

I was thinking about that in the light of the scare on Sunday that a member of staff at Mount Vernon had coronavirus. Fortunately, more detailed testing of the virus DNA on Monday showed it wasn't coronavirus, and the all clear was given.

Chemo patients clearly have a higher infection liability for at least some of their cycle, and I might guess that could allow the virus to get a better hold.

Radiotherapy fatigue might enhance vulnerability, I'm not sure.

Hormone therapy fatigue - don't know, the mechanism for this fatigue is still unknown as far as I know.

Anyone having the op is going to be more susceptible during the procedure at least, but probably generally fit otherwise.

User
Posted 04 Mar 2020 at 08:04
And being over 70 I have recently had the pneumonia vaccine which presumably gives me a better chance of recovering.

I don't go with all the media scare mongering. This is still a very rare disease in this country (and even in China if you do the sums). Far more likely to die of something else.

User
Posted 04 Mar 2020 at 08:55

Tend to agree Dave. Flu kills 8,000 people a year in the UK alone. 40,000 people a day die of TB globally so whilst I support measures to contain and eradicate the disease, I think there may be an element of panic here. 

User
Posted 04 Mar 2020 at 17:16
I find the hysteria irritating and it seems irrational to suggest that someone who had primary RP or RT 2, 5, 10 years ago could be at greater risk. However, men that have had PCa are entitled to a flu jab on the NHS so maybe 🤷‍♀️

Soap and water.

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

User
Posted 04 Mar 2020 at 18:02

Good luck getting a flu jab at my GP if you have cancer. They deny all knowledge of that rule.

And don’t get me started on how they don’t have prescription exemption forms because unspecific reasons.

Edited by member 14 Mar 2020 at 15:00  | Reason: Not specified

User
Posted 04 Mar 2020 at 18:42
You get a prescription exemption application from a pharmacy, fill it in and take it to the GP for signing.

I am surprised you are having trouble getting a flu jab - I thought GP practices were receiving cash bonuses for each flu jab they manage to give to a 'vulnerable' person? Perhaps that isn't a national thing.

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

User
Posted 04 Mar 2020 at 20:45
I didn't have a problem applying/getting exemption card, I am over 60 now so not needed. My GP surgery did give me free flu jab for a couple of years but only whilst I was taking prednisolone and not just because I was receiving treatment for PCa, I now pay for flu jab. I have posted before elsewhere but I think we should get free dental care for a period as well, especially as I'm in process of getting teeth sorted after having 8 removed after they 'crumpled'!

Peter

User
Posted 04 Mar 2020 at 22:05

Originally Posted by: Online Community Member
You get a prescription exemption application from a pharmacy, fill it in and take it to the GP for signing.

Cancer is not listed as a valid reason to get a flu jab on the NHS, so just like with anyone not on the list of illnesses or circumstances, an NHS one is at the discretion of the GP.
I get a free one on two other basis on the list, including being a carer, but not due to having prostate cancer.

By the way, never had to get the form signed by my GP - I just do it in the chemist, but that only works if you fit the circumstances on the list.

If you're not entitled to one on the NHS, you can still buy one for around £12.

I do take a note of the flu jab lot no., batch no., and expiry date, and pass that on to my GP, and they stick it on my record. (Without the lot no., batch no., and expiry date, their system won't let them enter it onto my medical record.) In theory, Boots should tell the GP, but that's never worked.

User
Posted 04 Mar 2020 at 23:02

Originally Posted by: Online Community Member
By the way, never had to get the form signed by my GP - I just do it in the chemist, but that only works if you fit the circumstances on the list. If you're not entitled to one on the NHS, you can still buy one for around £12.

 

What? Have you misread or perhaps at crossed purposes? Just about every man on this forum will be entitled to free prescriptions but they have to get a medical exemption certificate - you can be fined for just ticking the box on the back of the prescription and saying you have a valid certificate when you haven't! A prescription medical exemption certificate application form can be collected from the pharmacy, you complete your details and then the GP (or at some surgeries there is a nurse that is allowed to) completes the section confirming that the cancer / cancer treatment criteria have been met. The certificate last for 5 years but most men on here would be entitled to renew unless they reach the age of 60 in which case they don't need to. You definitely can't buy an exemption certificate. 

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

User
Posted 04 Mar 2020 at 23:08

"Cancer is not listed as a valid reason to get a flu jab on the NHS, so just like with anyone not on the list of illnesses or circumstances, an NHS one is at the discretion of the GP."

Interesting ... yet another postcode lottery. John gets his invite every year, due to his PCa.

It would be so much easier for everyone if there was a bit more consistency across the nation but gosh, what would we all find to talk about? 😂

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

User
Posted 05 Mar 2020 at 08:16
Being over 65 I get a free flu jab at my GP surgery, as do those younger who are classed as vulnerable for whatever reason. I thought that was the case nation wide And of course free prescriptions because of my age (60 seems an awful long time ago...). Pneumonia is a one off jab offered to anybody over 65 (or maybe 70, not sure). Along with the shingles jab which I also had this year.

User
Posted 05 Mar 2020 at 08:30
Tony did not get a free flu jab till he was over 65, he had had cancer since he was 61, he did ask and was told he did not meet the criteria. Tony was diagnosed before cancer patients got free prescriptions though.

barbara x

User
Posted 05 Mar 2020 at 08:44

Originally Posted by: Online Community Member
What? Have you misread or perhaps at crossed purposes? Just about every man on this forum will be entitled to free prescriptions but they have to get a medical exemption certificate - you can be fined for just ticking the box on the back of the prescription and saying you have a valid certificate when you haven't! A prescription medical exemption certificate application form can be collected from the pharmacy, you complete your details and then the GP (or at some surgeries there is a nurse that is allowed to) completes the section confirming that the cancer / cancer treatment criteria have been met. The certificate last for 5 years but most men on here would be entitled to renew unless they reach the age of 60 in which case they don't need to. You definitely can't buy an exemption certificate.

You only need a prescription for a flu jab if you are not on the list of illnesses/circumstances, but your GP decides to give you a discretionary one on the NHS. (Not my circumstance.)

I am on the list of illnesses/circumstances (not due to cancer), so I get it free without a prescription or any GP involvement.

Yes, I have a medical exemption certificate, but that's only for prescriptions, and no prescription is involved here.

Edited by member 05 Mar 2020 at 08:45  | Reason: Not specified

User
Posted 10 Mar 2020 at 05:44
Any thoughts on recent developments out there?
User
Posted 10 Mar 2020 at 10:10
I want to hunker down like WWIII is coming but my missus is just like "its only bad flu". She has no idea of the R0/CFR implications of this. Not sure how to persuade her without causing a massive punch up, particularly as she is desparate for our holiday later this month in central america not to be cancelled.

On the upside, I rang my onco nurse for an advisory on immune status for people who have been a while out of RT/HT and she said that the amount of time I am out of it means I am OK.

I'd rather be safe than sorry.

User
Posted 10 Mar 2020 at 11:09

I'm 50/50 on the risk situation but am socially distanced by default as I am unemployed (finally a bonus!). We are going to decide in the few days before we go. I expect the UK numbers to have gone exponential by then so it may be a more obvious choice.

My frustration is my wife is not getting the idea that she needs to put a pause on her communal evening social activities BEFORE things get tasty. She gets cross and calls me a worrier.

I rang PCUK also and they were much the same as my onco nurse - wash your hands and make your own risk assessment.

Edited by member 14 Mar 2020 at 14:59  | Reason: Not specified

User
Posted 10 Mar 2020 at 14:55
I know. Which means we travel to the airport halfway through the elevation into that position (we go mid next week) and will fly back right into the sh*tstorm of the full outbreak.

I really have reservations about going but my missus is dead set from a cash and emotional perspective.

If we go I worry. If we cancel, she gets upset. Lose lose :(

User
Posted 10 Mar 2020 at 15:28

I’ve continued to go out and meet people at events etc.

But looking at what has happened elsewhere I am more and more inclined to reduce contacts. If I had a holiday booked for soon I would probably still go but would worry too!

My immune system is suppressed so I need to take more care. It’s a balancing act for all of us.

Sorry none of this probably helps you PP.

Ido4

User
Posted 10 Mar 2020 at 15:57
Assuming we do not get the effing thing on the way out :(
 
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