Why can’t they treat my Lymph node PCa

Hi Leila, yes so excited to be Grandparents at last… bump is due early August. A little bit sad we will be long distance grandparents, but that is how it is. I also see that Jersey seems so much safer to grow up than the U.K. There are crimes and there are drugs but so much less than here. Everyone, including the kids are so polite and happy. 
Holiday was a fantastic adventure. As well as New Orleans and Memphis we stopped at some plantation houses on the Mississippi and heard the stories of the owners and slaves. So fascinating. Feel very privileged that we can do that. 

Phil

Saw one of my Oncology team yesterday, not my main man though.

PSA now gone up to 8 point something which she said shows the Prostap isn’t working properly.

So was expecting the Docetaxel discussion but she instead said they are putting me on Abiraterone and leaving the Chemo in the back pocket. I have read that getting the chemo in early tends to give better extension of life so i will ask about that in 2 weeks.

Got to keep having the Prostap injections but stop the Dexamethazone and start Prednisalone.

I didn’t think to ask where my new lesions were or what my Testosterone is. But they want to see me every 2 weeks now for a while to make sure it’s all working ok so I’ll ask next time. I can just walk in to the department with the blood test form the day before and they’ll do it there and then which is handy. Just means another trip to the hospital which although its only 20 mins drive away its taking over 40 mins to find a parking space. 

Never thought id get to this stage as it feels like nearing the end of the road. I do feel guilty feeling like that as i know all the guys on here that are on Abi and Enza and they are so strong and i wish i was like that …..and i know i have to stay strong for my wife and the boys.

Going to be interesting at counselling tomorrow! Last time i went I said I don’t want to talk about my childhood anymore and she said ok but why. I said I don’t feel any emotions about what happened to me (i was emotionally repressed) . So i carried on talking and she stopped me and said she can see that i still blame myself for what happened. I just broke down. So plenty to be getting on with … 40 minutes isn’t long enough 🤦‍♀️. Sorry if that upsets anyone ! Please tell me if I should delete that but it just explains me a little bit and the machinations going on in my little brain as well as the damned PCa   🙃🙄

So, onwards and upwards….

Ange, so pleased you and Keith had a lovely time in Kefalonia, and hopefully also completely forgot about PCa for a while. It’s a beautiful island. We went there when our oldest got his GCSE results by telephone on the beach and we lost our youngest in Lassi for an hour one evening .. A good few years ago now 😜

Best of luck for the next appointment on Tuesday, i’ll cross everything. He should be pleased with himself at 2 years without HT , keep it up. Reading about other peoples PCa journeys does really help and does give inspiration to others.

Been rambling long enough,  sat here looking at the garden and the grass is saying ‘i need a haircut’ but my tummy says i need food and i have badminton this afternoon. 

Take care everyone, and be kind to yourself, 

Phil

Hi Lyn. Yes I expected Docetaxel as he’d already mentioned chemo but they were firm they want to hold it in reserve. 
I’m happy they chose Abi for me 😁and they’re keeping a close eye on me until they’re sure it’s the right course.

Phil

Oh Ange, thank you for your lovely words , and I’m so, so sorry if i caused you to remember old wounds. It wasn’t my intention to cause any distress to anyone. That’s why i asked if maybe i should delete that bit…

Been to see my counsellor this morning and we talked about how i still blame myself , not just for that but for some other stuff while i was at school. I even messed it up with our first foster parents and they said they couldn’t look after us anymore but luckily our Aunt and Uncle volunteered and it was great there although we had to change schools. You tell yourself you were just a kid but you think about it with an adult mind.

You’re right that all those things have an impact on who we are now. I try to tell myself I’m a better person for having those things happen and to understand that life isn’t always a bed of roses….( actually that sounds quite painful 😂)

Yes, be kind to yourself , good mantra, not so easy to do though is it. It’s funny i have talked about ‘triggers’ with my old schools friends and they just say ‘snowflake’ … They just don’t understand.

Anyway, had my first Abiraterone and Prenisone today . So fingers crossed no side effects 🙂.Feeling surprisingly ok with it all. Hoping i continue to feel confident this treatment will work for a good while yet.

Have to get used to taking the Abi an hour before breakfast . Seems like forever 😆

I was talking to the MacMillan Manager today before counselling and she said they have a nutritionist available so i might book something up. She said that the cancer beating foods are all very good but a sometimes it needs a bigger overview of your needs.

Anyways, many thanks again Ange,

Take care, 

Phil

Hi Ange,

I’m so pleased I didn’t upset you , or anyone else  😪

I suppose i feel confident because i trust my consultant, and grateful to have been put onto the Abi. I know how expensive it is…… Not sure how it compares with Enza or Apalutamide though.

Counselling is really helping and this new lady has some other ideas which is interesting and helpful. Very grateful the NHS are paying… 

My Aunt and Uncle were magic. She was 23 and i was 13 and i think i had a bit of a crush on her 😂. We really liked it there, and the school, but after 18 months we had to go back home and back to the old school as our parents came back. I missed choosing my options for CSEs and ended up not doing well. Luckily i was allowed to sit some of them again as GCEs at college as i had spare time on my engineering course and got all A’s 😁

Can’t believe we are going to be grandparents soon, and can’t believe our oldest is going to be a Dad 😳 He is going to take it so seriously…..

Take care, its a tough old world out there 

Phil

Hi Leila, thank you for your kind words. I sometimes feel i am being a bit self indulgent putting some stuff on here but hearing that it may help someone get through something similar makes me feel better about sharing. It’s a big step sharing that you’ve been abused but it’s like a massive weight off your shoulders. It’s too big a step for some people to do, and also most people are not comfortable hearing it. It’s not about sympathy , its more about maybe understanding why we are different. 

For me , the counselling has been so good, helping me try to understand my feelings and why i did things in my childhood and not to blame myself. To be honest i find it fascinating to hear about the mind works. I told my counsellor that i had to write down about my childhood to try to get it in chronological order as its as all over the place. She said during trauma they brain struggles to put the memories in the right place and they get jumbled up. We’ll i would never have guessed that, so interesting.

It must be amazing to be able to make music. I am so jealous. Can imagine how therapeutic it must be. Listening to me sing its probably a good idea I didn’t get into making music …….

David is in a similar situation to me with lymph node involvement and it’s really great that the Prostap is holding it back, long may that continue. My consultant did say i have more lesions but she didn’t tell me where and I didn’t ask. I will ask next Tuesday when i go again if I’m brave enough …

I would be very interested to hear about Davids treatment. Anything that may help. Willing to try anything. 

I hope David has a really great birthday and you find something special to do. I’m not far behind at 68 . We still celebrate the day we met, and i can still remember it like yesterday, me looking across at her and having that OMG moment, crazy i know.  Just having a meal out this year in our favourite restaurant with our youngest and his wife.

Please feel free to read my posts out to David. 

Take care 

Phil 

Thank you Leila 👍

Thank you Lyn for your kind words. I actually feel I can walk a little taller now 😊

The information about memory is fascinating and rings so true with me.

I can barely remember any boy friends during my school years , they are just ‘ghosts’ . I recall the incidents but not who I was with. But I remember all the girl friends 🤷🏼‍♂️… 

It’s so good to understand more of how you think … 

I am still kinda processing what you’ve said. 

Thank you so much

Phil

Lyn, I understand the box and lid thing. I did that from childhood right up till recently . All buried and hidden but the diagnosis plus Hormone Therapy flipped the damned lid off 🤷🏼‍♂️

Phil