THANK YOU

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Just wanted to thank you ALL for being on here, bravely sharing your experiences and even responding to my posts. I can sometimes feel a bit separated, lonely and blocked in this world so having somewhere to go to that you trust is a godsend.

A lot of the time I feel pretty frazzled or overwhelmed and exhausted with a fuzzy brain and tentative. I still haven’t learnt how to express myself as fully as I’d like on this forum but do get a lot from others who post even when not directly related to my posts. Hopefully people will get something from mine too though I know it’s not a gimme.

I also try to remain open and chatty at the cancer clinics that I have to visit and glean as much useful information as I can from people who are going through similar things to me. I thank them too. Truly.

In the meantime, this week, I completed my 28 day course of BICALUTAMIDE 50mg and had my first Prostap 11.25 mg (next one in March). Other pre-existing conditions mean it’s not always so easy to be so clear about things but you guys helped give me some confidence to ask the doctor for specific help. EG. the Tamsulosin 50 mg, Mirabegron 400mcg + Lactulose plus three days of Loperamide 2mg that DEFINITELY helped me got to the loo more for No.1s & No.2s.

Am now a bit in limbo as my next appointment with Oncology/Urology is at the end of January and a bit nervous of the next step ie. Possibly External Radio Beam Therapy. I think that’s what’s next. Just praying my PSA levels etc go right down and stay down Pray.

Thanks again 

longtom

  • Good Luck.  I had PSA 13 Gleason 7(3+4) and T2N0M0 - though T3 disease couldn't be ruled out because the tumour was at the back of the prostate and pushing out of the capsule, at diagnosis that was back in 2015/16.  Had HT for 9 months and a month of external beam radiotherapy back in Jan 2016.  Since then PSA been undetectable so to my mind cured at this stage.  Radiotherapy was the only treatment suggested because removal of the prostate would probably cause me more bladder issues than I already had and possible worsening bowel issues than I already had from causes other than prostate problems and prostate cancer.  Surgery to help with any problems after removal would not be possible for me.  Also because cancer cells could have already escaped from the prostate treating with radiotherapy was more likely to get any escaped cancer cells - whereas removal of prostate and then radiotherapy could have left me with those same worsening bladder and bowel issues.  Really pleased with everything so far - just wish there was some treatment that could halt the ageing process or soften the hard edges a bit.  As regards energy and abilities I'm good for my age - turned 80 in October but my patience is wearing way too thin - in fact at times its totally worn away! Slight smile

  • Wow! I take my hat off to you, freefaller and am grateful for your words.

    I’m chuffed that you’re ‘really pleased with everything so far’ and doing so well..you put me to shame at 80. Well done you. You give me hope as I have T2N0 Gleason score of 3+4=7 (not spread) with a current PSA level of 17.12 (Dec.’23) so not too dissimilar to yours. I do have other stuff going on…It seems they ruled out robotic prostatectomy for me due to possible/probable complications from prior surgery for a double hernia with inguinal mesh but also due to my chest and breathing problems. It turns out I have LP Reflux and Cough variant Asthma which could have compromised the operation.

    I’m 67 and I can get angry so you’re not alone..it just means you’re alive. I might be worried if you didn’t feel angry especially at what’s going on in this once great country.

    all the best to you, sir..and thank you!

    longtom

  • I am just a stubborn Yorkshire man so no need to take your hat off to me - its just the way we are made in Yorkshire - or used to be anyway! Slight smile

  • Thank you for saying how you feel you are braver than me as I have written my post so many times but not posted it. My husband was diagnosed in April but over the last week I have felt so anxious about everything in life. I can't believe I had a responsible job managing a team of people and nothing phased me. I hope your PSA levels go down and your treatment goes well 

  • Shar, we all have wobbles. You and your husband have done brilliantly. You have helped him through chemotherapy, then the relief of having finished treatment, closely followed by Christmas. Now is a bit of an anticlimax and the fear of 'what next'. Just go and have a trying on session with your cruise dresses (I hope you got your new number 11 before Christmas). You have also helped a lot of people in the prostate cancer family so be proud. Look forward to your first cruise in March. Chin up.

    Lots of hugs are coming your way.

  • Shar…I’ve read your profile and seen how much you care and how much you’ve stood by your husband in testing circumstances. Perhaps you’re being too hard on yourself which is easy for me to say because I can be the worst at that! Relaxed️. I also don’t find it easy to be open and honest at all times but….that is what it is. I have to work at it.

    Thank you for your words and believe me they are not wasted on me. 
    Take care,

    longtom

  • Freefaller…<Strange but True> I too was born in Yorkshire as my parents were but never having lived there for more than 6 months, I don’t really consider myself to be a Yorkshireman. I’m grateful for your feedback. Have a great weekend.

  • I think that there is a hidden 'Victor Meldrew' in all of us that emerges the older we get.  Some days I have to bite my lip to control him Scream

  • I have lived most of my life away from there now but was there until I came of age and joined Her Majesty's Royal Air Force.  I still have relatives there and love the place and, believe it or not, people can still tell from my accent (not just my attitude Slight smile) that I am from there.

  • Hello   You are doing great. You are happy to chat about your issues, You take advice, You listen to what people say.

    Come the end of January at your next appointment your PSA should be down and things will be looking better.

    Keep it up - we are all with you on this journey.

    Best wishes - Brian.

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