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Journey just beginning

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User
Posted 26 Oct 2023 at 10:17

Good luck David, seems to be never ending having cameras, probes, piccs, and soon to be radio-bombs and rays etc bunged inside us whilst we continue to be up to the hilt in meds causing all kinds of hot flushes, puppy fat and shrivelled up bits - all good fun, well an experience anyway let’s say. Fingers crossed that everyone knows what they are doing and that it all works out well in the end. Excellent result for you on the PSA. And good luck with the job, you’ve more resolve for working than me, I’ve given up trying for s new role whilst going through this. (If you do want a laugh, my missus is on tv tonight (Bake off extra slice at 8pm), she’ll be the one with a cake featuring a ferret and expects to be suitably very embarrassed.) Keep your chin up!

chers

Spongebob

User
Posted 26 Oct 2023 at 10:41

Hi David

Stay positive mate. My younger brother has oesophageal cancer (we're quite well versed in my family - my mum has bowel cancer and I am in this exclusive club, as was my dad) and he has had chemo and then surgery to remove it. They are happy that they got rid of it all so he should be on the road to recovery now. Rest assured that IF they do find anything amiss in that area, they can deal with it.

All the best.

Ian.

User
Posted 29 Oct 2023 at 20:41

Thanks Derek, both for your rapid reply and your endorsement! Will update when i get news of the biopsy results! In the meantime, new job and new learning challenges ahead! David

User
Posted 29 Oct 2023 at 20:48

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

User
Posted 18 Dec 2023 at 22:43
Quick update. After a bit of a pause, am now on my way with the Radiotherapy. First session done and all is well. Long may that continue! David
User
Posted 08 Jan 2024 at 20:55
Another update, Radiotherapy now well underway and just 7 more sessions to go! I have to say, i thought this would be a breeze but I was wrong! Radiotherapy does not hurt and the side effects are bearable, but I did not bargain for the bladder pain caused by having to be full before your pictures and treatment start! Totally unpredictable, whether you are going to fly through with minor discomfort, or end up in too much pain and having to bottle out of the process on the table and start all over again! Wow! One tip, take paracetamol just after water loading, it helps a little with the discomfort/bladder pain! Other side effects, mild neusea, discomfort getting started with wee, bladder feeling like a punch bag (after water loading), upset tummy (sudden and urgent) and wind! But take heart, you get through the days quickly and soon mine will be over! Yay! Hope all readers managed to have a great Christmas and New Year. Wishing you all the best news in 2024! We got this!! David
User
Posted 08 Jan 2024 at 21:04
oh, and one other update, throat scare looking good. They think it is just swelling caused by acid reflux. More tablets and another endoscopy check next week.
User
Posted 08 Jan 2024 at 23:31
Hi 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

User
Posted 09 Jan 2024 at 13:02

Hi Kerm

I know the problem with needing a full bladder!

When the radiographer noticed me wriggling about and fairly desperate, she told me to let a little bit out and she will check if you are still full enough with an ultrasound scan. Much relief!!

Peternigel

User
Posted 14 Jan 2024 at 18:23
Thx for you notes guys, good luck Sponge! One extra bit of advice, one of the radiographers suggested ibuprofen might help with the swelling and so now I take two 200mg ibuprofen tablets on waking and one paracetamol once water loading has finished. For me it takes the edge off the bladder discomfort once you are on the table! Three more to go for me! And one orher thing, with the hydrating requirements of Radiotherapy, i stopped having tea, coffee amd alcohol. My hot flushes consequently are much reduced in frequency and intensity! D
User
Posted 14 Jan 2024 at 18:31

3 more to go and counting David…the last one can be quite emotional, well for me anyway🥲🥲

Hope it goes  well and you can start to get your life back….well as much as HT will allow you to anyway😊

All the best,

Derek

User
Posted 17 Jan 2024 at 21:09
Decided to "Go Public" now my treatment is done on Linked In, in the hope that it may save some lives! If you are interested in what I wrote about this last year after diagnosis, follow this link!

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

User
Posted 17 Jan 2024 at 22:13
Hi David,

Well done, a good move and a good read. I went public on LinkedIn and found reading all the comments from my ex-colleagues really comforting. And importantly, it helped to spread the message to get checked out.

Best wishes for the future, make the most of it. 😬

SpongeBob.

User
Posted 22 Jan 2024 at 09:09
Another day, another symptom!.This may just be me, but my finger print that I use for authentication at work,.accessing my bank account etc has vanished! It no longer works on any of my devices. Weird!! Lol
User
Posted 22 Jan 2024 at 10:10

Take your gloves off! 😉

Joking apart mate, apparently according to Google moisturising your finger tips might help. 

Edited by member 22 Jan 2024 at 11:06  | Reason: Not specified

User
Posted 13 Mar 2024 at 07:11

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

User
Posted 13 Mar 2024 at 09:16

Hi David,

Thanks for the update, I had to wait 3 months following my RT to get a PSA test and see my Onco. Mine was 0.3 after that then fell to 0.1, 3 months later. Your PSA is already very low, I wonder how much further it will drop🤔🤔🤔mine obviously only test to 1 decimal point and my next test is 2nd April…so just hoping🤞🤞🤞

I agree Staying positive IS SO important …I’m positive about the PCa, it’s just the side effects of ADT that have got to me😩

Derek

User
Posted 13 Mar 2024 at 17:24

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

User
Posted 21 Jul 2024 at 23:43
Hi All. Been a bit quiet recently as not much going on to be honest. Just had second PSA test since radiotherapy ended in Jan, and still "undetectable" which is great! HT still causing mayhem with hot flushes, muscle loss, aching joints and probs with the achilles tendon and plantar on both feet!! But still walking the dog and keeping mobile!! Nurse recommended going onto 6 monthly checks, but asked to do one more at 3 months just to feel confident!! Now, if I could just get off the HT!! Hope you are all doing well, enjoy every day!! 😊 David
User
Posted 22 Jul 2024 at 10:28

Hi David.

Thanks for the update. Its great news about your undetectable PSA but I'm sorry to hear about the side effects of HT. I hope they  improve.

Good luck.

 

Edited by member 22 Jul 2024 at 10:46  | Reason: Typo

 
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