Hello my name is Mandy

Hello… I can totally relate. My husband has had cancer on and off for the last 16 years and it has returned again. I have no idea how to talk to him or my children about it. I wish I could be of more help but I am not sure where to go with this myself at the moment. . But you are not alone.

My advice before you get further responses, which you will, is keep away from Google and try and keep positive. This awful disease is either curable or at least treatable.  More details will help others to give  you better advice.

Gina

Hi mandy my name is Caron my husband was diagnosed with stage 4/5 prostate cancer spread into lymph glands and a little on rib he is currently going through 6 weeks of pallitive radiation treament along with hormone therapy coping well and grasping at straws it sometimes feels lonely out here being brave for my husband it helps to talk take care and think of yourself as well as your husband xxx

Hello Mandy. I was diagnosed stage 4 beginning of February with it in my lumbar region, pelvis, couple of ribs and front of my skull. Started HT Decapeptyl injections in February then added Enzalutamide tablets in May. They've got my PSA score down from 33.9 to 0.2 in late June. According to the doctor that means the tumour has effectively stopped growing for now. My side effects are hot flushes and some mood swings which Im' dealing with fairly well even in this heat. Fatigue I have to plan around but the restless legs are really frustrating. However, please note that everyone is different and side effects of the HT will vary case by case so your husband might not get the same as me. I can't really advise for spouses as I'm a single and at 70 years old I don't see that changing anytime soon.

Maybe find out through your hospital if there 's any local charities or the hospital itself that can offer counselling. Don't be afraid to ask. I've had one counselling session so far and it helped a lot and I'm normally of a more stoical nature who has never had counselling in the past. You might even get pointed towards any local groups where spouses in the same situation can compare notes and give advice from those in a similar situation. Reach out is what I mean. There's maybe more help out there than you can see at the moment.

Hi there Mandymoo66 ,

Your feelings of quiet desperation at this early point of the cancer highway is common. You are not alone. It is totally normal. You are normal.

Ask away and you will have your answers.

If you are worried to ask at the start I will remind you that 1, you are never alone.

2, people that are going through what you’re going through are ready to talk to you.

3, This is totally anonymous, the website has champions and we all love to help each other (it does us good to talk too).

4, There’s nothing you can say that hasn’t happened before so ask for you and your partner, if you want to.

5, There’s a special profile page for you which you can fill with you medical and personal information that will help us help you better. The more we know about you and visa-versa the better and more accurate the help is. You can read everyone’s profiles by pressing the green icon at the top of each persons page and you can read their profiles. It will help sometimes to know what everyone else is going through.

6, We are here 24/7 so ask any time and someone will respond.

There are places on the website for night owls who can’t sleep, and sections about everything you can think of so look around and whether you stay silent and just read and watch, or you become a chatter box here it don’t matter, be yourself.

Help is not far away and the signposting the champions give is exceptional.

Welcome, sadly, welcome

Hi Mandy, I’m also a stage 4 patient. After the initial shock I knuckled down changed my dietary and exercise routine completely and took my medication. I feel great, my psa has dropped dramatically and l am looking forward to a long and happy future with my family and friends. Best wishes- Graham

Hi Mandymoo66 , you will realise by now that you are not alone.  The guys and partners on here are amazing and sharing our real life experiences helps us all.  Some of us have put more information about our journeys on our profile, just click on a name or avatar.  There are no daft questions and no end to the range of topics talked about.

Hello Mandy (Mandymoo66 ) 

A belated warm welcome to the group from me, although I am so sorry to find you joining us.

To help us to help you are you able to add more of your husband's journey to date/diagnosis to his profile? To do this on your home page, click on the computer screen - top right, then profile, then edit. Once you have written something don't forget to save it. As others have said you can view a member's journey (providing they have completed the details) by clicking on their name or avatar.

You say your husband has started hormone therapy - make sure he's got a prescription for Calcium and Vitamin D tablets as this treatment can weaken your bone structure. 

If you are your husband's main carer you can also join the Carer's group for help and advice and here's the link you need:

Carers only forum 

Do ask questions, nothing is too trivial and we are all happy to help.

Best wishes - Brian.

Hello Cosm 

Another belated warm welcome to the group. Again I am so sorry to find you joining us.

I see you are also a member of the Head and Neck group - perhaps you can add some of your husbands journey details to your profile - see my post above to Mandy for how to do this.

If your local hospital has a Maggie's (this is a cancer support charity) why not pop in there for some face to face support - they can also provide help with counselling.

Our Support Line is there for you on 0808 808 00 00 (8am to 8pm 7 days a week) they can help you too - why not give them a ring.

We have some information here that will help you with telling your children - 

Talking to your Children and Teenagers.

Don't forget to tell their schools about events at home.

I hope the above helps, if I can do anything else for you please do let me know.

Best wishes - Brian.

Hi Brian, and Mandy, as hubby has bone mets already Calcium and Vitamin D are insufficient, Bisphosphonates are needed to strengthen and protect bone sufficiently and offer the best protection.

Eddie