Does anybody feel the same

Hi Mandyiow,

I'm so sorry to hear about your husband and that you feel so alone. I think you are very brave to say how you feel. I have noticed something slightly similar in my relationship, if I'm honest. it's one of those things that feels very complex and it's hard to understand exactly what it is, there's just too many feelings involved like anger, loss and disappointment. I guess it could be grief really. I think emotions like this can be so hard to handle that sometimes it can make people withdraw rather than face them. Have you been anywhere or spoken to anyone professional about this.? I know several people go to Maggies centres, I don't know anything about them as I haven't been yet, but it's always good to meet people that understand where you are coming from and to be able to talk and say how you feel. Millibob may have some handy info as I know he's been. I do hope more people here chip in for a chat. I know there's a lot of wives and partners here, that may not be unwell themselves, but suffer terribly watching and worrying about their wonderful brave men.

I hope you get some answers that help.

Best wishes and strength to you both.

L

Hello Mandyiow.

I would like to offer you a warm welcome to the group along with a big virtual hug. As BarryW has said you are very brave to express your feelings and can say that yes at times it can be a lonely place, particularly at night when the mind runs riot. My husband also has metastatic PCa which was diagnosed in 2020 and will never forget the shock and fear that his diagnosis sent through us. Life for us revolves around doctors appointments and treatment cycles which take a toll on both of you physically and mentally but the biggest challenge is dealing with the side effects from the hormone therapy. Everyone has different coping strategies and it sounds as if your husband is struggling and withdrawing into himself could be a form of depression. I know that Millibob will come on and give you all the links for support organisations but I think it would also be useful to speak to your doctor and explain to them that you are both struggling. It is very much a couple's journey but is difficult if one of the couple is having difficulty sharing. Talking is one of the best therapies and your doctor should be able to organise this for both of you, either separately or individually if that is what you want but your first hurdle may be getting your husband to accept that he needs help in the first place so a quiet word with the doctor or your team nurse may be a starting point. Your health is equally important, it is not all about your husband, so do you have any hobbies or interests? 

Yes there are many heartbreaking stories but there are also many of hope and success. Being metastatic we know that our husbands cancer is incurable but as you have found out there are developments all the time thanks to the trials that are going on. Could you let us know which one your husband is participating in?

Many of us have found that by participating in the forum we have found a new family who understand what we are going through and doing so may alleviate your sense of loneliness. Keep posting and ask whatever question you like no matter how small. So once again a big hug and welcome

Hello Mandyiow

You are in the right place now as you will receive super support and advice from people who have been through similar and at the very least you know you are not alone. I too am one of the wives. My husband was recently diagnosed in May and has some spread to lymph nodes in is pelvis and due to start radiotherapy in 3 weeks. I can relate though to the emotional stress, my husband initially went into a kind of daze and just couldn’t take any information in and at that point it was like he’d become a different person. There are so many appointments, so many prescriptions to collect, so many blood tests to arrange and he just can’t cope, mainly I think due to side effects with brain fog from hormone therapy. He also has to get bloods done every two weeks as he is on Abiraterone.  This is the part that’s taken over my life, making sure all medications are ordered on time, blood tests are booked, injection appointment booked and picking up Abiraterone from the hospital pharmacy as you don’t get it as a prescription and has to be collected from the hospital.  It is exhausting and you are still trying to support them emotionally as I am sure they feel overwhelmed with the diagnosis and complex procedures and treatments. A lot of the time they can forget how completely it also effects their partners life, the impact is phenomenal but they are just trying to process everything and I’m sure their thoughts are running riot which makes them feel distant.  Barry W and Always Hope have already given you brilliant advice and it’s important to look after yourself, we do have a Maggie Centre about an hour from us but I’ve yet to manage to talk him in to going although I’ve heard such positive feedback from others who attend so maybe that’s an option for you, they can offer counselling but even if you can’t get him to attend right now you can also go yourself for a friendly cuppa and chat with the staff and others in the same boat. I’m sure Millibob will be along soon with lots of links and advice, he is our Community Champion and extremely supportive and generous with his time.  

Please stay with this group it really is invaluable and honest and a little bit of humour, which we all need, or even just to vent your feelings.

Sending you big hugs.

Linda 

Good Morning Mandyiow 

A warm welcome to our little club - I know you don't want to be here but you have made a great step forward in expressing your issues and as you can see from the posts above - you are not alone.

As many people have posted in the past Prostate Cancer is a "couples cancer" and it takes two to get through the effects of the various treatments and indeed the associated side effects. Speaking from the male side of things - it's the Hormone Therapy that's causing the issues and because of his age - he's feeling "less of a man". It happens - I am 68 but even at my age - you miss being able to have an erection, you miss physical sex - and as a younger man I would think - well to be honest - he's very "pissed off" about it and no doubt feels guilty he can't perform. My wife and I have found different was to show affection - but it's not every man who can do that, or is happy with just that.

A few suggestions - for you first of all - we have an Emotional support forum  - Just click on the link to join this - you can either repost your original post or copy and paste it - no doubt there are Community members there who may well be in the same boat and can offer help.

You may want to consider a chat with Anxiety UK -- they can offer advice if the constant worry is taking over your life - 0344 477 5774 0r support@anxiety.org.uk or www.anxietyuk.org.uk

For you both - as mentioned in the above posts there are Maggies Centres up and down the country - these offer support to cancer patients and their family - you can find your nearest -0300 123 1801 or enquiries@maggiescentres.org or www.maggiescentres.org.

There is Relate - www.relate.org.uk - they offer advice regarding relationships.

and finally you can call our help line for a chat on 0808 808 00 00  - anytime 7 days a week between 8am and 8pm. They are a fantastic set of people with a listening ear who may have some further suggestions for you.

As you said  in the post 

Mandyiow said:

he is here but not,

It's just the medication -  he is here and you are doing everything in your power -- you will get him back.

I hope the above helps - that's how I see it from a male point of view. Stick with us - we are a decent bunch and feel free to post anything you want - we as a Community are behind you and your husband on this journey.

If I can do anything else for you please don't hesitate to contact me.

Best wishes - Brian.

Hiya. It's so good that you have been to express your thoughts and concerns.

I'm a 69 year old "man"  who has recently had radiotherapy and hormone treatment for prostate cancer.

I totally understand how you feel about how treatment has affected you and your husband.

At least we are still alive!!

Don't forget that we are ALL here for you at this difficult time.

Take care and please stay in touch

Del x

Thankyou so much for your reply with all you have to deal with. Its so good to know there is a platform like this that supports everyone. 

Keep safe and thankyou again, wishing you all the very best x

I am so glad to hear this, I hope you continue with strength,  courage,  faith, hope defiance and your victory remains , I will be carrying those words with me.

Hi Linda, I cannot thank you enough for your advice. I do understand every issue you have. 

The appointments, bloods, meds, the vacancy  the social impact. I have also had to take on his work to ensure he still has a job, not what he used to do but he can hold it for now, if he couldn't work every sense of of his self worth would be taken from him, even though I know this will have to stop at dome point at 54 fingers crossed not yet.

I hit such a low yesterday,  I didn't know which way to turn, I just felt worn down like there was no way I knew how to move forward  ,but I think hopefully I have found the support and advice I need, 

Keep safe, stay strong and hopefully chat again, I am here for you like you have been for me. X

Thankyou Barry,

I didn't feel brave saying this, as I replied to Linda, I hit a new low yesterday,  I cannot express how the messages on here have helped me, including yours. 

It feels like I have finally found somewhere I can express and ask without waiting for appointments to be told minimal information and unfortunate as it is people are going through the same, situations,  emotions and dilemmas. 

I did try counselling last year, but I was unable to find anything new to focus on from the sessions I had, i have been with my husband since we were at high school.. just never really known life without him, not sure a Councillor can quite understand my feelings.

Thankyou so much for your support it really means so much and makes alot of sense. 

Take care and thankyou again

Hi.

I just wish it would all stop. The constant treatment . My oh  has many conditions as well as PC and another type of cancer which has caused another operation to remove dodgy cells  ..an aoetic anerism looking like its getting to the operation stage .  Had another op for something else. It's just endless  sometimes I don't know if I can do it - I just want a happy retirement   so yeah I feel you pain ..its so hard to keep cheerful. I have asked for conselling   so far still waiting. I try and keep doing some of the things I enjoy but cancer is really rubbish.  Mines not distant just expects me to be there and  know all the answers  . ..and want to listen to all his treatment details etc.. I did say the other day I really don't need to know that..  Onwards I went on a  girl's weekend away and that helped. Feel a bit of a cow for thinking is this my life now. We had some great plans  - not sure any of them will happen . Certainly won't be driving around Europe in a camper for the foreseeable. Hi ho. Trying to think positive is hard