On the journey at last we’re feeling more positive

Hello Caras1 . You have a plan and that is that your husband is being treated with curative intent. Absolutely brilliant. Yes he may have some side effects but they can be dealt with so think of it as short term pain for long term gain. One thing he might notice fairly quickly is that his libido drops and the hormone therapy can cause atrophy of the penis and scrotum. As he is on 2 years hormone therapy he stands a good chance of regaining function but this can be helped by looking after his penile health in the meantime so ask your doctor about this. Also the hormone therapy can affect the bones so ask about calcium and vitamin D supplements.

Do look after yourself, you have been through a lot and need to stay strong but also take time to enjoy yourselves and maybe fit in a holiday before radiotherapy starts.

Hi Alwayshope

thank you so much  for that advice .  Yes we do have time for a holiday hopefully. The tiredness seems a problem and not sleeping too well at night. So I am cautious but it would be lovely to get away. 
many thanks as always 

C x

Good evening Caras1 

you have been through the proverbial wringer and came out the other end with your beloved . 

im so glad your husband now has a plan as it’s so tense waiting and worrying.

My OH is on a palliative treatment plan and with the blessing of his Oncologist we have just had an amazing three and a half week holiday in Caribbean. It took us a bit of work sorting out his medication , blood tests etc before we went . But I must say it did him the word  of good . His lifetime hobby was scuba diving and he went diving too . So things are achievable . 

hugs to you both 

Liz & OH xxx

Just take care of each other and huge hugs 

Oh wow Liz ….that’s amazing - my heart goes out to you both.  We love the Caribbean too best place in the world to make the most marvellous memories .  
Fabulous people and warm sun on your skin.  I also feel a trip coming on …. 
sending you and OH much love and hugs too xx

A very similar case to my own, take a look at my profile, now finished treatment and seems to have done the job well! It takes a bit of going through but be assured there is a lot of hope for a success hang in there and support each other Wishing you both the best.  David

Hi David - thank you for contacting ….yes read your profile and indeed  sounds like us - you did so well , phew amazing I’m so happy  for you well done.  I know it’s going to be tough for OH but we’re in it together and are trying to feel positive.  I can’t deny we’re  scared ! Life is going to be so different but so grateful to the nhs staff we’ve seen so far and feeling very supported. 
So veryvpleased you’re doing so well - take care , best wishes C x 

Hi

Your husband appears to be in a similar position to me. I'm Gleason 8 T2c N0 M0 and am just finishing 2 years of hormone therapy (also Decapeptyl).

I received radiotherapy in September 2023 over 20 sessions at the Woolverstone Centre at Ipswich Hospital.

I've found the Decapeptyl tolerable the mains side effects being crying at the drop of the hat to anything emotional (Don't mention Bambi), put on about 4Kgs around my middle, some fatigue, erectile dysfunction and some breast enhancement !

Sounds worse than it is in practice. I still have the energy to go Salsa dancing 3 time a week and walk the dog.

I'll follow your journey with interest and you might find my progress insightful.

All the best for your treatment journey. Rob

Hi Caras1 not too different from my diagnosis- lower PSA but higher Gleason. I’m impressed with your hubster’s medical team - they’re on his case with curative intent. I know there are horror stories about side effects, but if hubster (I love that terminology) stays positive it needn’t be so. I had even more radical treatment than is proposed from your man (due to some aggressive traits found on biopsy) but I have had an easy ride through side effects so far (read my bio).  Anyway, well done to the two of you and stay with us.  AW

yes they have been great and calls from his CSN to see how he is.  It’s just starting to go slightly pear shaped now we’ve been transferred back to the ‘community’ The Doctors!   But Hubster on top of it.  Making notes all the way - it will be fine. Telephone call booked for next week to sort out meds and dates. We know what’s happening . 

First Decapeptyl injection seems to be ok at the moment, he’s doing marvellously well. bicallutamide  ( wrong spelling I’m sure)  course now finished.  Appetite has increased . 

  We’re on a mission to get hedges cut at the moment.  Our garden is our hobby together.  it’s stopping those deep dark thoughts setting in as so much to do.   With lots of rest for my darling in between of course. 

New flow test booked  as failed miserably last time - but on Mirabegron now so hopefully an improvement.   

So July completely free from appointments allowing some new normality with the family.

Then we await RT and prophylactic irradiation to the pelvic lymph node to catch anything that might be undetected. 20 sessions. 

Has anyone had RT and prophylactic irradiation wondering what we should expect? .  

But hey we’re on the pathway and feeling grateful. 

Thankyou everyone on here feeling so supported by you all . Sending hugs to everyone stay strong  but it’s alright if you’re not and partners need to look after themselves too  . X  

Earlier this year I had a course of radiotherapy that was longer than your hubster's journey (I love that).

Although my journey was somewhat marred by hurting my back during the first 2 weeks - something that has also happened to my brother-0in-law at the same hospital - the actual problems with the radiotherapy were, and have been until this date (4 months on), minor indeed.

I had mild fatigue associated with the HT, and this increased to medium fatigue, and is now receding again.

There were a couple of spots of blood in my rectum, but that went before the end of the course.

Nightly journeys to the toilet increased to 4 or 5, with flow reduced, during the treatment. They are now done to 2 per night. Some of that might be in my head because I got used to getting up and heading for the loo. There are times when I am standing there at 4:00 AM wondering why nothing's happening.

Other than that I feel pretty much normal.

Tell the hubster that, for almost everyone, it's a breeze, and if there are any problems talking to the team treating him will get help or reassurance immediately.