Information please

Hi Barry W

Sorry to hear of your issues but you are in the right place to discuss them and there are plenty of people on here who know more than me

My journey began last Christmas Eve with a PSA of 182 (if you click the icon next to my user name you can read my journey log). I have advanced prostrate cancer and the sod  is out of the gland but mine was caught early and because of my issues - it was crushing my kidneys - everything MRI CT were done at once.

I am on hormone treatment alone at present - I feel like a woman - as the song goes - the flushes, mood swings, growing boobs, loss of sex drive -but the treatment works - the best support I have is my wife - she comes to all my appointments and is very supportive.

My outlook on the Cancer is to always look on the bright side - it's not going to get the better of me. I agree with worried wife above - you have to push sometimes for the help you need.

You two take care and hope for the best outcome possible.

I hope this helps.

Kind Regards - Brian.

Hello Malik.  Thank you for such a frank and honest reply which I really appreciate and respect that it must have been hard to type.  

One night my husband told me that his head felt like a washing machine spinning round and round and firing off rockets as it did so. I told him I felt the Munsch picture of The Scream was how I felt. What a pair we are! But, as you say, this is an illness that affects both partners.

im really sorry to hear that you are experiencing the emotional disturbances. My husband is on day 5 of the tablets and, so far, seems ok. I am the one who keeps bursting into tears.  The important thing to remember is that if we see a man walking down the street laughing with his mates we think of this as quite normal. He is happy and expressing a normal human emotion. When we cry, this is normal and, again, we are expressing a normal human emotion.  We are allowed to cry! So, why do we feel shame about our tears?!! But, funnily, like you, I cry so very easily when somebody is kind to me in all of these troubles. If somebody is indifferent ( at best) I don’t cry!

We are trying to get away for some warmth and sunshine in December before starting radiotherapy in January/ February. Getting insurance is proving a real nightmare. I would be grateful if anybody could point us in the right direction?

yes, I agree both husband and wife are in this together. As a wife I just can’t separate myself from my husbands cancer.  I have been doing all the pushing at the hospital, trying to arrange insurance, reading all about it etc etc. I go to every appointment and we have been taking phone calls together. My husband has been there for me in the past and it’s my turn to be there for him. I just wish the hospital would appreciate that this is a couples illness and not just a man’s!

I do hope your treatment goes well and that you continue to live life to the full.  One day I hope we all find somebody we can talk with beyond the ‘aunties’ and ‘sterile classroom chats’. A trouble shared is a trouble halved, is it not?

Best wishes

Thank you so much for your kind help and information, I will look up Maggies centre now.

Again Thank you so much!! excellent information, I am so grateful for your time and kindness. I will do everything you suggest as that sounds like sound advice. like you I am driven to be more assertive under pressure and save my breakdown for later. I need quick results when theres a problem. The good news today is that we have had a few phone calls. I think one must have been for a nurse team because there are four contact names. We also have an MRI for this Friday and will be contacted about bone scan and biopsy. My partner took the calls and appointment. I feel relief, immense relief to have something in my diary for this week as it has only been 1 working day since the blood test. But this clearly shows there's an urgency.

Thank you for your reply, information and advice,  I will most certainly do this. Many Thanks 

Hi Brian

Your comment about feeling like a woman etc made me laugh.

I have just had my 6 montly review, after finishing hormone treatment in Feb - a 2 year course following 37 sessions of RT Dec/Jan 2019. During the conversation the CNS mentioned my testosterone level was 'less than one'. I told my partner ( who is an ex nurse) and she said a woman has more! So I asked Google and she was correct - by a big margin! No wonder I have no strength or stamina!

Regards

Stuart

Thank you, thats such an insightful and sincere reply,  I have been overwhelmed by peoples stories and how kind everyone has been by sharing their journeys and their deepest thoughts and fears. I'm feeling more positive now from  understanding the procedures and challenges that others have faced. Also reading about the importance and strength of the women and families that stand strong behind their men helps me to take the next step forwards..

Thanks for your response. I got my “consultation” diagnosis on 15 July. On 27th we left, kids and all, for a 6 week European tour. I told the consultant and said if it was unwise or important for treatment I’d stay but he said no, you should go. In a macabre way I asked him if he said that as it might be my last!!! I knew so little then. But no, and I’m sure you’ll get the same, you need to be on hormones for 3 months before radiotherapy. They stopped my tablets and 2 days before we left I had a 3 month implant put in. Off we went and had a ball. Well a couple of wobbles on the way but it was great. 
I did learn that nothing can really cause me to need hospital treatment,  there is no pain or bleeding etc so life can just go on. So make sure you go on holiday. 
Insurance is a problem. I didn’t bother. Depends where you go though. Europe. Australia we have reciprocal agreements for health. I mean seriously….. what’s the worst that could happen?

That sounds amazing! positive!! thank you 

Thanks Malnik. We'll endeavour to go away. I think it would be good for both of uss to escape our dark December days before the radiotherapy starts. Your European trip sounds amazing!!! Good on 'yer'. I hope the radiotherapy goes well and thank you so much for replying to me and to Barry W and for acknowledging that this illness impacts on us wives as well.  I wish you all the very best as you go through the radiotherapy - just think - you will be finished before we even start!