What a whirlwind.....

Morning folks and I hope find everyone well and being positive 😬

After a consult in Feb I was told to keep an eye on the blood pressure and purchased  one of those home machines.   Turns out the meds can give you high blood pressure so now on 5mg of Amlodipine to reduce it.  Never had high blood pressure before and a recent reading of 201/101 was high'ish -  now down to 165/85 which is a little more reasonable 😎

The PSA is not being very good.   Jumped up again to 1.51 from .85 so waiting for a call from the consultant to see what we can do about this but they did warn me that after a year the body adjusts and they may have to tweak things.    Not sure I like the idea of being "tweaked" but heck its been so long since anything tweaked it may be a nice experience.   I know we can all fixate on numbers and what if's and I am no different.   It scares us when the number go the wrong way and we get upset which is not a bad thing and totally understandable..... but don't let it consume you.   We all know life is precious so let's live it, enjoy it and get out there and have fun.   

QUESTIONs

How many of you who are of working age are still working ?

Anyone receive PIP ?  I ask as given I have a terminal diagnosis I should get it but only in the last six months... but when do I know the last six months start!!!!!!!  Any advice welcome.

Remember guys.... talking helps..... living life is even better and keep a stiff upper lip... even if it is above a loose flabby chin.

Hi Nobby my specialist cancer nurse suggested a couple of years ago that I should consider claiming PIP under the DS1500 process, 6 months to live malarkey. I think the six months business is now 6-12 months according to some NHS literature I read online recently.

Anyway I downloaded a claim form, it's a points based benefit. First question was how far can you walk, I'd just completed a coast to coast walk in 6 days so I just felt stuffed by that question.  I only got 2 points for having difficulty putting my socks on as I always sit in the stairs to do that, not sure how I'd cope in a bungalow. Anyway I sacked off the PIP claim and I'm too old to claim it now.

Apparently Citizens advice or McMillan's will assist if you can bag a few points, can't remember now but think I needed 15 for a Lexus.

Keep going mate👍

Well it has been a while since I was last on the site and time has flown by :-)

So what is the news ?   Well since the last post the body has got used to the Enzalutamide and it is no longer effective and the PSA was starting to rise a little quick.   So they have taken me off the Enza and I started Chemo about 9 weeks ago and just had my third session last Friday.   Chemo was not too bad and I was fine until the Monday morning when I felt like a truck had hit me - rushed into A&E and them to the Chemo assessment unit and on AV due to an infection - they are not joking when they say your immune suppressed.... after a night in Chemo Assess all fine and allowed home.   Since then they have reduced the Chemo does and all has been good.   Well good may be a strong word.... I now have a pain in the left hip which means I need a stick to help me walk and I get so tired..... BUT..... I am still walking the dogs three times a week, still clay shooting ( and I beat my brother in-law for the first time last week) so I can not complain.   Was told off by the DR for not taking pain meds as I was in pain so now I am taking two paracetamol when needed.... honest I am :-)    I have been put forward for some new treatment which we are waiting to hear back on and I am also on some bone treatment - I call it skele-grow (Harry Potter) as I can never remember the name... something acid.   ANYWAY.... still working, still causing trouble and still living life to the full.   EVERYDAY is a blank page and it is up to me to fill it as best I can..... and that is what I do :-)

CHEMO side effects..... for those who are interested - and these are what I had..... you have none :-)

1. Learn to inject yourself post chemo with anti-bionics for a few days - no big deal - under the skin and easy

2. Taste - my taste buds have gone bonkers and everything tastes different - not bad just different - all bar Monster Much (Beef flavor) they still taste the same.

3. Tiredness - when the brain is busy and I am working then I am fine... then I stop and before I know it I am sleep on the sofa and it is 1am.... I have watched the same film three times now and still have not seen the end... cant be that good a film... something about a bird box and Barcelona..... 

For anyone who is just joining the journey..... ignore the dark clouds and bloody live life to the full.   Two weeks time I am off to the Greek islands for a weeks holiday with my daughters.... I'll also take my fire fighting gear just in case :-)  I can not sit in the sun, I can not drink beer or wine but I can enjoy the time I have :-)   

Will try and post more often......  BE GOOD - STAY SAFE and most of all ..... HAVE FUN.