Newly diagnosed

Hello Skye, sorry to hear that you are living with such uncertainty. For me, there have been two very bad stages of this journey. One was living through all the different diagnostic tests and the other was the week before radiotherapy started and the first two week of the four week course. Both involved so much fear and anxiety about what was happening and what might happen.

so - the diagnostics! My husband progressed from MRI to biopsy to bone scan. Some people here have posted that they all had PET scans. My husband was not offered this. We were initially told that he would have the old fashioned biopsy taken through the back passage but , apparently, a piece of equipment failed, and he had a template biopsy going through the perineum. The template biopsy is guided by scans and seems to be more accurate and holds less risk of infection.

the radiotherapy! I read too much!  Yes, there can be catastrophic side effects - both now and long term. My husband is on day 19 of 20 ( finish tomorrow). My daughter and I have been chauffeuring him to the hospital due to the lengthy journey and difficult travel and parking. That said, he and I are feeling very tired now. He has had some excessive wind and bloating and, because they have told him he must drink lots, he is visiting the toilet more often. He was suffering with headaches each afternoon but since he started drinking more and has relaxed somewhat, they have disappeared. As he has seemed better mentally and physically, I, too have dared to breathe!

the one piece of advice I would give you is to (politely) push, push, push the NHS to give you timely treatment - even if it means making formal complaints ( we did!) about delays. 

a tip I would give you before every consultation is to sit down with your husband and write down all your questions and then present the list to the doctors. I don’t think they like this but it’s your questions that matter to you. The consultant will ask his own questions also. The consultation should be a two- way discussion of equal power balance and not the Lord and master talking to a serf!  This will mean your husband is fully informed, can make his choices and, most importantly, feel he has some sort of control in a very very scary situation!

finally, it’s important to do your homework! There’s a lot of info and research on line.

good luck and I hope all goes well for you both!

Hi, I just want to share my radiotherapy experience as you’re about to finish yours!!! 
The radiotherapy was a breeze really, yes it builds and each day I felt a little worse than I did the day before…. Just a little. 
I finished mine in December, they warned me that I might feel worse for a few months. I didn’t believe them, it was illogical. But they were right!! We’re all different but for me, whilst having tk wee all the time has finally diminished, I’m incredibly tired still and fatigued at the slightest exercise attempt or task. I’m at a quarter of my ability. It might be a hangover from radiotherapy or the hormones causing it, so just be aware for your husband, he’s still going to feel it for some time even though it’s finished. You just have to adapt. 

Hi Malnik, thank you so much for sharing this. I’m sorry you are feeling so washed out and really hope that your ‘get up and go’ returns quickly! 

we saw the oncologist this week and he warned us that side effects might be felt for some time. Your words reinforce that. We had wanted to jet off to warmer climes in a couple of weeks for a good rest but the oncologist said, ‘not for 6-8 weeks’.

Hi worriedwife

I hope like me he gets to ring the bell at the end of his radiotherapy, my wife had balloons and was with my daughter plenty of photos