Update and 3 cheers for MacMillan nurses and this forum

A couple of days ago I had a moany rant here (or maybe a ranty moan) about my husband John's appointment for his biopsy results with his urologist. No point in repeating that as I've updated my bio briefly,but wanted to update about yesterday which hopefully is an encouragement to other 'newbies' to ask away on here plus to always ring the MacMillan team rather than lie awake at night fretting and worrying when things don't seem right. 

After some good sound advice in this forum (thank you to all who posted) we decided yesterday to first of all ring MacMillan and save ringing oncology directly or PALS for if that didn't work because it was  an admin request to expedite our appointment with oncology rather than info about PC itself. We had a call back from a support worker with the Macmillan team, he described himself as 'not a nurse' but was the only person available on a Friday afternoon. Not sure if I'm allowed to name names here so I'll just say it was the same as one of the Beatles who's still alive and it's not the one who played the drums! He listened amazingly well, asked us to repeat anything he wasn't quite understanding, which included us saying we'd like to discuss triplet therapy (thanks to Millibob's suggestion) and we knew this had to be started by 12 weeks into treatment and it was already week 8 for John. Our person hadn't heard of that but went away saying he'd speak to a nurse or if possible a doctor and ask if it was offered through our authority. Anyway, he rang back about an hour later and had discovered that yes it is offered here and yes, John should have already had his oncology appointment with MDT results discussed but the doctor we saw on Thursday had put in another request for that and he would check next week to make sure that had happened. Of course he might forget to do that but now John feels he can make a polite fuss himself knowing that a mistake has been made so he was in his rights to check up himself. He was told too that the results wouldn't be available for John to see until the 'experts' had explained them to him as people only get anxious if they read a lot of medical jargon which they don't understand. Not sure I agree with that being a good enough reason to keep important info from someone about their own body, surely it's up to them whether or not they go looking for definitions etc but hey ho! 

The best bit about the call though is that our lovely person did tell John that the PSA test results from yesterday (which we'd been told would take a month to come back!) were available and from a starting point of just under 40, it's now just over 5 and his testosterone levels are negligible. That was such an amazing thing to hear. John has had no side effects from his hormones apart from tiredness and I did have a silly but nagging feeling that perhaps it just wasn't working as there seemed no evidence like hot flushes etc.

So (and sorry for another loooooong post) please don't be an Alison and worry unecessarily when you could ring your Macmillan team and be absolutely confident that those hormones really are reducing PC's ability to spread or grow......

Hope everyone can have an anxiety free weekend, lots of love and encouragement from us!