Why can’t they treat my Lymph node PCa

Hi Ange. I’m afraid I find it only too easy to look backwards, probably as you realise there isn’t so much in front as you expected… Looking back for me is painful and I don’t know why my brain does that 🤷🏼‍♂️. Gonna be one of my first questions to my counsellor is how to stop looking back . 
Can’t wait to see Daughter in laws bump tomorrow 😁

Making plans is a great way of forcing your mind to look forward. We are trying to balance having lovely holidays with enough left in the bank for my wife to survive when I croak !… as she is 8 years younger than me and doesn’t get her state pension for another 6 years. She won’t get my private pension as I decided to not have the spouse option. 🤦‍♀️

You are so kind to be looking after Keith’s brother . It must be very difficult. Would you be able to fit in some weekends away? Would McMillan nurses be able to help? I know some people say they don’t want help. My Dad was like that, he brought my brother and me up to be very independent and both of us don’t like asking for help. 

Cross trainer is a great exercise. I also do cardio , Rowing and Bike but also weights, which is to try to stop the muscles wasting away and to prevent osteoporosis. I do push myself a bit more than I should but that’s me, but it feels good after. I’m going to add swimming in later.
I used to be a very good swimmer when I was young. Living 100yds from the sea wall helps. I was unofficial life guard but one day when I was 13 my girlfriend and her mates went swimming alone as I was playing football . She nearly drowned and had stopped breathing but her Mum was called and gave her kiss of life and brought her back. Lucky they lived right next to the sea wall . I felt very guilty for a long while. Bloody hell I’m doing it again 🤦‍♀️… 

Best get on with my chores now 🤣

I think someone on the forum has a sign off which says something like ‘live every day as if it’s your last’ Great words.

Take care

Phil

Morning everyone 😊. Just thought I’d see if anyone can help me. … 

I’ve just recently started feeling a bit sick in the mornings. Not from my stomach but seems to start from my throat. I brought up a little yellowish bile this morning. I thought I was ok but went to the gym and I’ve got no energy at all.

I take Solifenacin, Tamsulosin and the Bicalutimide first thing with my tea, before breakfast. As my wife is a dispenser in a pharmacy she asked her pharmacist and he says the Bicalutimide can cause sickness. So I should take it after breakfast. I will try that , although the instructions say it’s ok on an empty stomach.

Anyone else ever had this ?

I’ve also emailed my nurse to see what she thinks.  Liver tests are listed on my next blood test so hopefully my liver is not being affected by the Bicalutimide. 

So feeling a bit down today, probably because I couldn’t finish my gym session . I am a bit silly like that and try to push and improve every day but I suppose I have to accept I can’t do that anymore 🤷🏼‍♂️

Hope everyone is doing ok ?

Take care

Phil

Just a quick update a week before my next consultation, which is a face to face as I asked my nurse to request for me . If, as I suspect my PSA has gone up again I will have some more questions and it’s easier in person.

I’ve started taking my morning pills after breakfast now and it seems to have helped a lot. Just had the odd day where I’ve felt sick when I get up.

Still going to the gym 2 or 3 times a week for 2 hours plus badminton, plus much reduced wine intake. Lost 5 or 6 pounds and pushing heavier weights and cycling/rowing further so feel better in myself. 

But , like we all do, getting very nervous nearer to consultation time… I am obviously hoping for a miracle that my PSA has steadied or stopped but I know it’s unlikely. So, I’m steadying myself for the inevitable. I expect I’ll be back on here asking for advice on which next Gen drugs to choose. That’s assuming my consultant gives me a choice. I’m also not sure if he’ll want another scan to see if the little bugger has spread its wings… 

Oh, nearly forgot… doctor says I have perforated ear drum so just gotta be careful and keep it dry till it heals. 

Hope you’re all doing well 👍 Soon be summer time 😃

Take care

Phil

Got a call today from X-Ray dept to say that my CT Scan is classed as urgent and they booked me in for tomorrow. 
Booked my next injection of Prostap for beginning of June , replacing the Zoladex. 
Consultant said we’ll do a 1 month as he wants to see if it’s working as soon as possible. 
Feeling very, very nervous at the moment. Just got to hope the Prostap works like it did at the beginning 5 years ago, and that it doesn’t mess with my head so much . Not sure I will be able to deal with that again but start with new counsellor Thursday, and it’s a lady which I’m pleased about as I don’t think I could open up about my childhood to a man 🤷🏼‍♂️

Trying to keep as active as possible , just got in from Gym and I pushed hard and I’m knackered which is a nice feeling.
Not quite the 3 peaks like Irun and co. but it’s enough for me… 

I’ve tried looking up Dexamethasone on Dr Google but not that much info for use with Hormone Therapy for PCa. Maybe I’ll open a new thread on it. 

Take care everyone, 

Phil

Yes, I think all my scans have been urgent too 🤣

I think my consultant wanted them done before we go on holiday on the 20th for 2 weeks. That way he’ll have all the info he needs when I see him again in 6 weeks time. 

Funny how you get nervous even for a scan when you know you’re not getting results till later 🤷🏼‍♂️

Cheers

Phil

Thanks Lyn , Leila.

We will have an amazing time and hopefully not one thought about PCa…. 

Phil

Thank you so much Ange. Soo looking forward to it 😁 Really need it …

Phil

Hi Phil

Great that you had good time in the States it's sounds fantastic,not so good about PSA rise but don't be down hearted it may be a blip and PSA may fall again on next bloodtest.

I've been in hospital most the weekend having a fairly large stone removed from my urether,woke up after surgery with a catherter in place which I've managed to dodge for the last 18minths,luckily it was only in over night,I'm still peeing blood tho and not the best of flow with kidney stent also fitted it takes a lot of getting used to,hopefully in the next few weeks these stones will be behind me with nephrostomy bag,stents and catherter being fitted and I can also get my PSA down being at 2.4 at mo,blood test at end of week and onco telephone appoint a week today,if it is another rise which I'm fairly sure it will be I'm putting down to all the work I've had done in the last 3 months and will refuse my oncos idea of starting chemo and giving up the enza,it seems like I'm spending more time at hospital than at home at mo.

Stay positive Phil and keep battling on regards Phil 

Thanks Phil 🤦‍♀️. Sounds like you’ve really been through the wars. I hope you manage to get your PSA down and stay on your current treatment. I certainly won’t be jumping on the chemo train unless I’m sure my Onco believes it’s necessary.

I need to investigate the regime for taking the chemo so I understand what could be coming… and possible side effects. Also not sure how long the chemo treatment lasts for. I also have to consider my upcoming trips/holidays. We need to be able to travel in August to see our new grand baby. Plus next year we are planning on a trip to Japan plus a wedding in the US. I have a lot of questions for tomorrow, that’s for sure. 

Hi Chris, yes I’ll definitely report back 👍

Phil

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