Newly diagnosed

Hello Teatowel 

Welcome to the Macmillan Online Prostate Cancer Community - but I am so sorry to find you here under these circumstances.

First off, the hospital dealing with your husband will not (should not) send him home unless a care package is in place and you are able to cope.

Number two - Your other questions regarding support are best answered by the professionals (I am only a volunteer) on our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week). If you give them a ring - let them know you have been referred by the online Community they will be able to answer your specific questions - some such as finances may involve a second call to another specialist.

Please do stick with us and ask any questions regarding your husband - nothing is too trivial and the group members are all happy to help.

Best wishes - Brian.

Hi Teatowel, 

I’m so sorry I can’t offer a whole lot of practical advice. From personal experience I found the help of the metastatic nurses valuable. I hope you’ve been given their contact details by his cancer team. Start there, if they don’t immediately know they will be able to point you in the right direction. 

I’m sure a nurse from Macmillan on here will see you post soon and give you reassurance. Love to you both, I’ll be thinking about you xx 

Thank you for yout support and information. 

1. Thank you. I will ask to be referred to the Metastatic nurses. I haven’t heard of them so am keen to learn if the hospital has any metastatic nurses available 

This is a situation where more than one group might help. 

Reading your note suggests that the prostate cancer has caused quite a severe spinal injury. You will get plenty of help from the Support Line here, but you might also want to think about reaching out to a group like the Spinal Injuries Association - https://www.spinal.co.uk/. They might be useful in advising on adaptations that you might need to make in life to cope with these changes.

The Macmillan team can help you with all the support consideration, as well as advise on finances. Your local Citizens Advice can also help with this. You will be able to find contact details here - https://www.citizensadvice.org.uk/.

As Millibob  says, the hospital should not send your husband home until he has the support he needs. You need to make sure you have support too. Whether it be in the near term, as your husband's treatment works for him, or in the longer term as a new "normal" series in, you are going to be involved in his care. This group may apply you with ideas - https://www.carersuk.org/.

What a devastating situation your hubby and yourself are faced with, my heart goes out to you both. Trying to come terms with the reality of what is to come will be the first major hurdle for your husband, he is fortunate to have your love and support by his side. He will face plenty of psychological challenges and do hope he seeks some help in talking to his cancer team , yourself or someone on here who has and is going through similar battles. 

There are good and helpful people on here and I wish you both strength and fortitude going forward.

Best wishes 

Graeme  

Hello Teatowel and welcome from a wife. It is daunting when you are suddenly confronted with having to care for a loved one at home but a care package should be put in place before this happens. I was put into this position when my husband had a series of strokes and before he was allowed home we had a session with an occupational therapist who arranged for equipment to be installed to help us. Financially we sought help from people who were used to filling in the different forms to ensure that we got the right benefits at the right level and also what additional help this entitled us to. Our local hospital had a mobility centre who were brilliant at advising and more importantly training with the use of mobility aids. At times like this you find out who your real friends are - some run scared but others can be a real support for both you and your husband even if it is just sitting and talking to your husband whilst you go out for a break to recharge your batteries. All of this was was 28 years ago in our case and we have learnt to live with the situation but more importantly we have a good quality of life.

On top of that he was diagnosed with advanced metastatic prostate cancer in 2020 and has recently had progression to the bones. I hope that your husband has been put onto hormone therapy which should help shrink the cancer but this is going to take a little while. In the meantime the hormone therapy can put the cancer into hibernation wherever it is in the body but it can come with side effects. You have a lot to come to terms with so initially I have attached a couple of links which might help.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

https://www.cancerresearchuk.org/about-cancer/coping/physically/spinal-cord-compression/treatment

Please ask any questions or if you just need to vent - someone will always get back to you.

Hi Teatowel 

sorry to hear  of your situation . It’s hard enough learning about your husband diagnosis without them discussing discharge already. 

I worked in social work for years and assisted at times with hospital discharges . 

you need to ask to be involved in any discharge planning meeting . I know it’s a bit daunting but it will allow you to put your views forward to allow a successful discharge rather than a failed one . 

stick to your guns if they try to persuade you as you will certainly be part of the “caring support “ 

I do hope you are also receiving support as this is a couples illness and I often fear that the medics forget this. 

Take care and if you need to vent , ask questions or just chat on this forum . I found everyone so helpful in our time of  need .

hugs to you both 

Liz & OH xx

Thank you so much for taking the time to reply and give me information. I really appreciate your help and support.