Journey just beginning

Great News….stay strong and good luck with RT. I found it a breeze compared to HT.

Derek

I think you mean onwards and downwards SpongeBob?😊

Will do SpongBob. Two scans this week and one next week, will also be interesting to see if bone density impacted by the hormone therapy. Oncologist meeting in three weeks, will find out then and report back! In meantime, God luck with your next chemo sessions. D

Hi SpongeBob,

Well done, you cracked me up with the shrivelled up bits comment, spot on lol!! Still, i can put up with all the side effects if it keeps the PSA down! Hot flushes are a right pain though! Acupuncture and reflexology helped, but wore off after a couple of weeks! 

Also thx to Ian, let's hope it is not another cancer but good to know it should be treatable if the news is negative! Still, hoping for the best!! 

Cheers all, have a great week.

David

Timely update, as I’ve just been in today for my planning scan with my 20 sessions due to start on 22/01. Amazing how nonchalantly we can get used to messing about with enemas and parading about in hospital gowns that show of the bare backside etc.

Many Thanks for your tips and I’m glad to hear that all is going good and that you are on the home straight 👍😁

Cheers

Spongebob

https://www.linkedin.com/posts/davidjarpayne_my-secret-2023-today-i-walked-out-of-the-activity-7153472001569882114-38Et?utm_source=share&utm_medium=member_android

You will probably have to copy and paste into your browser. Cheers, David

So we are now in mid March, nearly two months after finishing Radiotherapy. Still not seen my Oncologist to review the impact of treatment, but the Pearl's trial people keep in touch regularly (I was in the control group). Symptoms much better, rectum discomfort gone and just left with some bladder discomfort and some retention but not bad. Feels odd to have gone nearly two months without a trip to hospital!! Almost like I fell off the end of the production line. Last psa around 0.06 so all good there. Fingers firmly crossed that all the treatments have done their job!! Keep having to remind myself to enjoy the feeling of no treatment scheduled!! 🤣 Stay positive out there, makes all the difference!! David

Hi David,
Yes, it seems weird to me too having finished my radiation there seems to be a kind of void. I had a phone appointment with the oncologist last Friday (approx 3 weeks after Radiation), this seemed to be a well-being call to check that I was ok and not still suffering unduly from any after effects. She did say that that’s it really, no more scans, just ongoing monitoring via PSA tests. I have a test booked in at the local docs in April, my previous one was taken before my final chemo session in November when the reading was 0.34. 

Like Decho I’m not enjoying the effects of HT which seem to be getting worse, now hitting my joints especially my ankles which were flakey anyway due to too much footy. Still I feel lucky, very lucky actually that I got myself checked for PCa when I did, looking forwards now, not back.

All the Best David,

Cheers

SpongeBob

Good stuff Dave, all the best in your new venture, I admire your ambition. My game was IT Service Mgt so I understand Helpdesks and the Customer Experience etc 😬. But I am glad to be out of it now. I don’t know how I would ever have been able to hold down any of my old roles during my PCa journey. 
How are you getting on with your HT? I still struggling with mine, it’s killing me off.

Good luck

Spongebob

Hi Spongbob (and any other reader),

I took some time to think about this HT question, as I always like to put a positive spin on things if possible! However, other than potentially keeping the cancer cells at bay it is difficult to think of anything positive about it!! But, even with all the side effects I get, I am going to be a little anxious when they eventually tell me I can stop taking it (as I suppose that is when we find out if we got a cure or just a delaying action!). In terms of symptoms, the hot flushes are a real pain, but not the end of the world. I know how to almost completely stop mine, give up caffeine and alcohol, but that is too high a price lol. Oddly also strong emotions (especially when worried or stressed) cause an almost instant flush! But for me that is not the worst bit, it is the feeling of emasculation that really impacts. Defined as "the act of depriving someone of strength, vigor, or spirit" that comes close to how I am feeling at times. Synonyms help explain further "Soften" - yep all my body softened (especially around the tummy) and bigger except my 'male equipment' which has shrunk and does not work properly! "devitalize" - yep, my walks with the dog now 15 to 20 mins and sometimes just cannot be bothered to do stuff. "undermine" - yep, especially confidence. "debilitate" - yep, at risk of this one as well. So, what to do about it!!! Can't just roll over and curl up .......... Have started Pilates for Cancer Patients, which is great. Everyone looks so healthy!! Am looking at the new gym around the corner and thinking, January when back from holidays? Am starting this new venture and trying hard to get excited about it. Am trying to avoid doom scrolling about percentages or recurrence, or prognosis for T3N1M0 Gleeson 8's!! And I keep reminding myself that everyone has an expiry date, and no-one knows when that date might be, so be grateful for every day and make the most of what you have left not matter how many days that might be!! It is not important how many, what is important is how you live those days!! So now I am feeling more motivated just thinking about this fact!!! Oh, and one good travel hack for anyone reading this. If you are not a UK citizen, or you have a partner who has an overseas passport, go through the disabled channel at Passport Control. You avoid all the queues and if challenged (which they never do), Cancer is classified as a disability! :-) Took me 5 mins to clear Passport Control with my wife when we returned from visiting the Cologne Christmas Markets (which I can recommend btw!). Without that hack would have been 90 mins easily! So lets not let this challenge get us down for too long. We can do this and beat this! David

Edited by member 10 Dec 2024 at 09:52  | Reason: Not specified