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Getting my head in the right place

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User
Posted 15 Feb 2021 at 13:07
Thank you for your post and the timeline updates have helped me. Keep us posted and I will post something today about my own journey....
User
Posted 15 Feb 2021 at 16:31
Sorry the HT has failed but most people seem to tolerate the enzalutimide well so fingers crossed for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Mar 2021 at 20:35
Well since the last post in February, and 30 days of Bicalutamide tablets, and a month on Enzalutamide without any side effects to speak of. best bit now PSA down to 2.41 and not taking any pain killers. So I'm a happy Airyarris all I need now is a barber open because my hair is meeting up with my mask.

Not Airyarris for username for nothing

Stay safe

User
Posted 29 Mar 2021 at 20:37
Great news, Hairy
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2021 at 09:39

Great news. 

Ido4

User
Posted 31 Mar 2021 at 11:42

Good news on the PSA results and good to read you are still keeping positive.

I have been bald for a while - Dad was and so was Grandad so I stood no chance - but even I had to dig out the fly-mo and give the head as hoover 😊

 

User
Posted 26 Apr 2021 at 16:18
After 28 days of Bicalutamide I think? and eight weeks on Enzalutamide without any real side effects to worry about yes a few more hot flushes, although it’s hard to say for definite, one thing for certain I’m drinking an extra litre a day, which can’t be bad anyway, the good news is my PSA has dropped back down to 1.48. Now I am ache and pain free also. Coming out of lockdown life just gets better. I only had one stumble the Macmillan team had me apply for a blue card and attendance both of which we now have, which left me both happy and depressed for a couple days as I am beginning to realised the cancer had progressed a little.
User
Posted 27 Apr 2021 at 10:14

That’s really good on the pain front. I understand your wobble about the blue badge/attendance allowance side but they must be necessary. Take care.

Ido4

User
Posted 30 Apr 2021 at 18:17

AIRYARRIS - Good news on the PSA and I am sure you'll cope with the hot flushes :-). No aches and no pain so that is great and focus on that.  so you have a blue badge and attendance.... yes it is a reality check but focus on the positive :-)

Be strong and chin up.....

Have you had that hair cut yet ? 

 

Edited by member 16 May 2021 at 06:42  | Reason: Not specified

User
Posted 16 May 2021 at 22:16

Hi NobbyB haircut sorted can see my ears now. Whilst we were in lockdown travel agent came up with an offer we couldn’t refuse a month from mid September in Tenerife from a lot less than our previous holiday in February 2019, so that’s now booked giving us something to look forward to, and hopefully Corvid allowing, 28 days in the sun, to upset the hot flushes and also to top up my Vit D, the oncology team can fit meds and appointments around the holiday, they have always said they could so now’s the time to find out. We all need something to focus on, How are you going on hope you're leading with your chin?

Edited by member 16 May 2021 at 22:17  | Reason: Not specified

User
Posted 16 May 2021 at 22:28
I’m glad to hear you have holidays booked and so do I , but only in the UK ! I simply CANNOT find anyone who will insure me , even for a staycation cruise from Southampton ( where I live ) , to Cornwall and back. I’ve tried them all , phoned NcMillan , Boots , Insurewith , Saga. No-one will touch me with a barge pole and I’m 53. Any ideas please ?
User
Posted 17 May 2021 at 12:12

Chris, have you tried Virgin travel insurance? I got a years for 2 of us just before we went to Jersey last week. We got a years as we are back out in jersey in August , plus hopefully somewhere else later on 🤷🏼‍♂️.

They added on about £60 when I put in the cancer, plus I think it’s gone up because of us leaving the EU.

Phil

User
Posted 22 May 2021 at 20:49
Hi Chris. Couple of years ago OH’s oncologist told us to get a holiday. I laughed and said no way can we get insurance. She advised us to try World First. They were brilliant and we got a holiday. Don’t know how much things have changed since Covid but it’s worth a try. All the best to you, Kate
User
Posted 04 Jun 2021 at 14:50
When we booked the holiday our Idea was let the booking ride until we had to pay for the holiday, then make the decision on cancelling or not subject to corvid, or finding insurance so far Boots have been fine with me, but these alternatives are great to have in the back pocket Just in case, so Thanks for the advice
User
Posted 04 Jun 2021 at 15:58
Thank you Kate. All booked up for a staycation cruise with my boy late August thanks to World First insurance. I’ve always used Boots but they sacked me off this time for some reason ?
User
Posted 09 Jul 2021 at 12:14

My PSA is bobbling about 1.5 to 2 and the Docs seem happy with that.
I don't know if it is coming out of lockdown and/or just becoming more active or settling in with Enzalutamide, but the past few days I've been waking up with a clearer head than for a while, okay, takes time to remember odd words I want to say, but there again English has never been a strong point for me, hot flushes are just there. Also starting to get my confidence to drive more, on our local country roads, I haven't had the courage to try the drive into Sunderland for my meds yet, since last time I went for a scan when I started Enzalutamide forgot to pay the parking fee and had a stressful journey home getting in the wrong lane a few times luckily we where still in lockdown so traffic was a lot lighter than now

Edited by member 09 Jul 2021 at 13:03  | Reason: wrong words

User
Posted 09 Oct 2021 at 14:23
Good news from the oncology whilst we were on holiday we had a telephone meeting, (good job it was a telephone call as we were in Tenerife), my PSA had dropped to 0.6 and my bloods are all stable in the correct ranges whilst on Enzalutamide, so I've now been referred back to urology again and hopes it will be at least 2 years before we talk again. It’s surprising how a few words can give you a massive lift, given that 2 years ago we heard I had a 40% chance of surviving 4 years.

Also our day 2 Randox came back negative today so we’re happy bunnies again

This illness is certainly a rollercoaster, now to look for a new insurance company before next holiday as this holiday used my Boots one, thanks again to the people giving me alternative names to try

User
Posted 09 Oct 2021 at 19:37

Great news, always good to see positive posts on here. Sounds like things are going really well and gives us all hope. Enjoy your holidays 😊

User
Posted 09 Oct 2021 at 20:07
Excellent new mate and I am so glad for you. How have you found the hot flushes in Tenerife as I am due to go to St Lucia on business to visit our plantation and then over to Singapore to see my brother and the hot flushes are bad enough in this country so Lordy knows what they are going to be like in a hot country :-)

So pleased for you and may the numbers keep falling in your favour :-)

User
Posted 09 Oct 2021 at 21:34

Great news. 

Ido4

 
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