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Post RP and SRT journey - July 3023 PSA test update

User
Posted 29 Dec 2018 at 19:52
I’m not sure of the answer to this one. Hopefully someone will come along with experience.

Ido4

User
Posted 29 Dec 2018 at 21:34
Taking a new policy now would be very expensive for a poor return. You could look at those ‘no medical’ funeral plans but again, poor returns. Basically, you needed to be a fortune teller and buy security before you were diagnosed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Dec 2018 at 21:43
So it is back on with the harness to get as much money put away as possible before I have an argument with my perch.

Bl**dy shame I finally gave up caffeine - I think I am going to need it!

User
Posted 30 Dec 2018 at 01:50
Do you have critical illness cover? Have you asked your insurers whether you are covered for an early claim? John's insurer rejected his claim because they don't consider G7 to count as cancer but I know others here have been successful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Dec 2018 at 07:13
I was planning early retirement before PC and Divorce. That is not an option for me now but strangely I actually enjoy being in the harness more now and work helps remove the "what if's" from my mind. As an employee I get a large death in service benefit so that is my comfort for my family and soon to be new wife.
User
Posted 30 Dec 2018 at 19:44
No critical illness cover or similar as it is a rip off.

Will aim to get a permanent job to get all the pension and death in service benefits.

I hope they give full cover in the short term as I may well be dead in five years.

User
Posted 31 Dec 2018 at 00:33

You will have to disclose your cancer to the employer between being offered the post and actual start date, if they ask about your health. But cancer is a protected characteristic under the Equality Act so they would be acting unlawfully if they discriminated against you because of it.

Edited by member 31 Dec 2018 at 14:47  | Reason: typo

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

User
Posted 31 Dec 2018 at 01:00

Originally Posted by: Online Community Member


I hope they give full cover in the short term as I may well be dead in five years.

Well with your stats its safe  bet you will still be here in 5 years time!!

User
Posted 31 Dec 2018 at 13:41
Lynn - thanks. I forgot that I am protected (It a;so counts as a disability). I am also going to review my retirement options as well as I hate idea of of being a desk jockey for any length of time, illness notwithstanding!

Francij1 - think caffeine withdrawal and a mild hangover bit my bum there. The withdrawal is due to the fact I found out something this last week about my lifestyle that I was in denial about. I did a cold assessment of my caffeine intake recently owing to some palpitations and realised I was in denial about mega dosing caffeine with poor hydration. Not only the physical side effects (budum budum budumptity budumptity budumptity budumptity bum urgh that does not feel right) but the high levels of anxiety. I think the caffeine was countering the meds I am on. Allowing for Xmas booze I feel a lot better with the crashes directly correlated to naughty drinkies.

What was interesting about having a clearer head was that something was bugging me about what I originally posted about my recurrence and with a rare very clear head went back to my calendar and reviewed the dates things happened. It turns out I was a bit innacurate in my reporting due to no dount being in a right tizz and rushing things all the time. My BCR was actually nigh on ten months (not the random numbers less than that that I kept posting) and it was nigh on ten weeks between the 0.16 and 0.24 owing to the rebooked delayed onco appointment. Caffeine and stress clearly destroyed my mahematic ability. These numbers are a bit better but they are still what they are.

What it does show is that I needed to weed out lifestyle issues that were hidden to me or I was in denial about that were having an effect. The take out is that it is useful to stop, take stock and listen to yourself and see what feels off then do something about it.

Next steps - no booze after New Year and back on the diet and fitness and find a bl**dy job.

I wish you all a good new year and a 2019 full of good news and good people.

PP

User
Posted 31 Dec 2018 at 16:39
Pete, I haven't had caffeinated coffee at home for decades, always decaffeinated, but luckily whenever I do have the caffeinated in our local coffee houses I notice no effect from the drug at all. Just lucky, I guess. Why be so drastic as to give up booze altogether? It has its place in moderation. If you are a caffeine junkie, just go for decaffeinated tea and coffee!

AC

User
Posted 01 Jan 2019 at 18:16
Auld

I worked out I was on the equivalent of around 20 cups a day. I don't think I can go from that to one or two or have the occasional one. I have somewhat an addictive personality which is also why I need to can the booze (the hangover from last night was a good reminder why!)

User
Posted 22 Jan 2019 at 11:54
Hi all

Over the weekend I had the joys of the red tide when I went for a sit. Fresh blood and a fair bit. It subsided for a day or so and is back today but less of it. Is this usual several months after RT or is it just co-incidence?

I have been on the IBS train for a few weeks and I do seem to get the red tide with that on occasion. I also drank way too much over Xmas and New Year as I was really fed up (in full existential crisis mode at the moment - God hates me / reaping Karma / all that guff). I have only really cut back a week ago. I wonder if that has contributed?

User
Posted 22 Jan 2019 at 13:10
I would question whether you do actually have IBS or whether it is radiation proctitis, for which there are treatments. Push someone to explain to you why they believe it is IBS.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jan 2019 at 13:18
Hi Lynn

I have had stress related IBS for years and know the symptoms likke the back of my hand. It has returned due to the stress of my pending test. I would occasionally get the red tide with that (possibly diet related too) and it is a known side effect of IBS.

Thinking back I did have a short bnout over Xmas.

I have not yet talked to the hospital as it is on a day or so since it kicked off. Based on what you said I think it makes sense to give them a call.

Cheers

PP

User
Posted 22 Jan 2019 at 13:30
Just rang the onco nurses and had a chat.

She suspects it may well be RT related with IBS on top but is not concerned and says it is very common. She suggested lowering my fibre intake and upping my fluid intake and getting a GP appointment (which I won't get until after the first review most likely) if it continues to get some meds.

No red flags then (excuse the joke!).

PP

User
Posted 22 Jan 2019 at 14:35
Much of the self-help is the same whether it is proctitis or IBS. However, you could ask for a hydrocortisone rectal foam such as Colifoam, which a number of members here have found very effective.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jan 2019 at 14:44

I have bleeding from time to time, very unpredictable.

Radiation proctitis was diagnosed after sigmoidoscopy. I have also had intermittent IBS over many years but the bleeding I get now is different. I would suspect radiation proctitis. My rear end is often uncomfortable, itchy or sore.

Advice seems to be to reduce fibre, caffeine and alcohol intake.

You've got to live though so no way I'm eating white bread! I also like caffeine and alcohol!

It will be of interest to see if  SpaceOar reduces instances and severity of this.

 

Ido4

User
Posted 22 Jan 2019 at 14:57
Hi

@Lynn - I'll get to see them and ask about the foam. Thanks for the advice. I'll quote "radiation damage" when I book - that way I might get something quicker than a four week turn around :)

@Ian - sorry to hear that. My symptoms and bleeding are all usual IBS ones for me but they may be masking the procitis. I have removed caffeine altogether. Am going to reduce harsh fibre. I think the fact that I drank like a depressed fish over Christmas and New year may have been at the root of this outbreak. I am cutting down my drinks to one mild session a week and the occasional "eff it" session every month or two to see if that helps. Oddly giving up caffeine was a doddle and made my anxiety levels plummet. Fibre is just eating habits which I can change. Booze is all in the head - I need to get kick out the demons of self blame and fear of the future and whatnot to get sorted. Funnily I was watching a documentary about exorcism last night. We need prostate exorcists :) :)

User
Posted 23 Jan 2019 at 07:42
I just read a BBC report about daily aspirin and bleeds. I’ve been (when I remember) taking dst aspirin. Could that impact radiation proctitis?
User
Posted 23 Jan 2019 at 12:58

I was taking daily aspirin since starting on tamoxifen (since May)

 

i developed IBS symptoms, guts were like a washing machine

 

i put it down to SRT last year, spoke to GP then stopped the aspirin - hey presto - bowels quickly returned to normal

Edited by member 23 Jan 2019 at 14:28  | Reason: Not specified

 
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