Fed up

Hello Doris

nice to ‘meet’ you and welcome

it does get really wearing when our ‘princes’ of yesteryear turn into our ‘patients’ of today! I have consistently blamed the hormone therapy for this change ! My husband aged 10 years in 3 months! He has other things going wrong besides the prostate cancer and never a week goes by without some contact with one NHS service or another. It’s almost like the NHS has taken over our lives. So, yes, it’s very easy to feel fed up about it all!

however, I try to get round this by thinking of the times he has supported me through difficulties! I think of how he supported me through pregnancies, childbirth, menopause, career, studying ( I did 16 years of part time academia!!) he never once grumbled openly but must have felt pretty fed up at times?

I also try to put myself in his shoes and the absolute fear and, perhaps despair, as he looks in the mirror and sees his ageing body and knows there is a cancer lurking in there and not knowing whether or not the treatment he has received so far ( radiotherapy) and the ongoing hormone therapy is going to prove successful or not. Our menfolk are dealing with a lot - just as we are! The biggest fear for me is losing him. Following on from that, this illness has made me very aware of my own mortality and weaknesses. That is tough, too!

my support is two fold! I drive him to appointments, I do the research, I advocate for him ( I would take this further and say I fight for him) to get the treatment he deserves. But I’m not soft ! When he sinks into moments of despair I show a bit of empathy but suggest doing something - anything - to keep him active , involved, feeling useful - the man about the house again, my partner, my best friend, the rock I need.

I also make time for me! I will meet a friend for a chat over a coffee, I follow my interests - garden, sewing, volunteering . So I keep busy with the things that satisfy me as a person in my own right.

most importantly, I absolutely adore our children and grandchildren and their continued support has been so very valuable for both of us! 

so, this is not the easiest stage of our lives together but we are still just that - together! We have come through other difficulties and the successes in surviving those gives me a bit of courage and hope we’ll get through this. Looking back to this time last year, I think we are in a better place emotionally. The absolute, all consuming panic and shock of the diagnosis has dissipated. The tears have mostly dried up. As you can see from the time of this post - the insomnia and fears still lurk. We are getting by!

I hope this middle of the night ramble helps you by letting you know you are not alone on this journey. We are all human and we all have our struggles and mostly muddle through them as best we can cos we have no other choice, really. We have to make the best of a bum deal.

I hope things improve for you and your husband and send you a big hug x,

Forgot to say - you have to book your own covid jab - on line or by dialling 119. I don’t think they are sending invitations this year? I booked ours yesterday. 

Hello Doris W.

I see that your husband is also on the penile cancer forum so welcome to this bunch here. We can be a bit wacky at times which helps when we are trying to deal with what seems like the all consuming cancer but overriding everything I have found this group knowledgeable, supportive and caring, and hope that it can give you a little peace of mind and some help and inspiration along the way.

Wow WW. You are always so spot on with your descriptions and advice. You manage to say things in such a better way than I am able to express on paper. Perhaps I am too analytical but blame it on my scientific training.

By the sound of it Doris you have been supportive but think maybe you can't do it on your own all the time because that can get so tiring and wearing. Also many men have difficulty talking to others outside the home about such problems as issues with their bowels or wee. Do you have a Maggie's centre or cancer group near you which could give you a break and a chance to chat and also help put your husband's issues into perspective? HT takes a toll on our loved ones both physically and mentally. Trying to keep our men motivated and active can be challenging. Luckily we are retired so if my husband is a bit down I suggest going out for a coffee or ice cream where we invariably get talking to someone else. If at home then it is out in the garden doing the little Jobs he is capable of with plenty of strategically placed chairs for a rest. It's all about distractions from the big C word and it's effects. Do you have any hobbies or is there anything you have always hankered to do, then make time to do it. It is important that you look after yourself or you are not going to have the strength to look after others and make sure you acknowledge that you are doing a brilliant job. There is such a thing as Carer burnout which can be debilitating, fatigue, insomnia, not able to cope or want to do anything so just be aware that it is not all about your husband's diagnosis and treatment. There are many on here who have gone through, and are still going through what you are feeling. We do find the strength somehow and personally I have found that it has brought my husband and myself closer together. No doubt Brian our community champion will chip in and say that there is also a Carers forum although I have found that I get all the support I need on this one as it seems to come up with the right balance of information, support and humour that suits me. 

No questions are too small so ask whatever you like and there is usually someone on here that can chip in. A big hug to you. Try reading people's journeys by clicking on the icon next to their name and you will see that there are some really inspiring people out there who have survived everything thrown at them and come out the other side. Yes everything still revolves around our partners diagnosis and treatment, we just learn little tricks to make life better for both of us.

This is what the NHS Website says about booking the covid jab.

Hello Doris

Let me join in with the others and welcome you to our little "club".

I have read your post a few times and know just where you are at. Prostate Cancer is a long journey and it's a shared journey. My view point is from "the tough guy" who was the rock at the head of the family and can now cry just by reading something which is not even sad!

If it wasn't for the support of our wives, partners and family most men with PC would be broken. On the outside we look tough and can deal with everything but inside we are crying out for help and sympathy but don't want to show it. I would be in a bad way if Mrs Millibob, my family and the various members of this Community had not helped me cope with the side effects of both the diagnosis and the HT/RT. And look at the posters on here - 70% are the partners of the poor old men who need help!

Take it from me - from the male point of view - you are doing great - it's a long journey but you have been through HT/RT and yes there are the odd "hiccup" in the journey but you are getting there. (click on the icon of the beach to read my journey) I have had issues!!

Just being there for him is so supportive - keep it up - he does appreciate it even if he doesn't show it. It's possible he's still worried and you are his only "outlet".

Right - I will put my "Community Champ" hat on (I haven't got one yet!!).

You may well find that by joining two of our other forums and by reading the posts on these forums, and posting yourself, there is some additional support. we have Emotional support forum and Carers only forum . You can join either of these by clicking on the link I have provided and once the page opens up, click on "join" on the black banner at the bottom of the page.

Trust me - you are doing an amazing job.

If I can be of any help feel free to contact me - but keep posting - we are a friendly bunch.

Best wishes - Brian.

I totally empathise with you and wish I had the answers.

Although my husband had the surgery, his waterworks have improved more than either of us expected. However, he uses it as an excuse for not doing the things that he doesn't want to do, but he's fine doing the things he wants to do.

Having spent most of this year dealing with 'this shitty disease', it's getting dark early and the weather is also shitty and I think I'm already suffering from seasonally affective disorder.

I'm totally fed up as well and I'm starting to show it.

Hi GR1

Below is what I read. I followed the link but could not book two consecutive appointments at the same time so phoned 118. To my absolute amazement the call was answered extremely quickly and we had our appointments within minutes - 5 minutes apart on 1st oct

How to get a seasonal COVID-19 vaccine

If you're eligible, you can get a seasonal COVID-19 vaccine by:

• booking online
• booking on the NHS App
• going to a walk-in COVID-19 vaccination site

You may also be contacted by a local NHS service, such as your GP surgery, to get a vaccine for you or your child. This is usually done by text or a phone call, but you may sometimes get a letter or a notification in the NHS App.

If you live in a care home and you are eligible, staff at your care home will arrange your vaccination for you.

Book your appointment online

You can book online to get your seasonal COVID-19 vaccine at a vaccination centre or pharmacy.

Hi GR1 - yesterday was the first real autumnal day for me - the first sign that we’ve got rain , cold, grey , long nights ahead of us - everything that I hate and struggle with in our UK winters! It felt bleak! But, the sun is shining here this morning! Yes, I get SAD too and it’s really hard to contemplate months of it ahead. For me, the hardest part is Christmas. I know that once Christmas is over the days are getting longer! 

Hi GR1. Just sending you a big hug and thanks for the inspiration and information you have given to so many. We all deserve to know that we are appreciated

I've just checked on our GP website and they provided the link to book. I had already tried twice but they didn't recognise my details without me providing my NHS number, which I didn't have to hand. When I found it I was able to book and have done so for both of us. Could have had it this weekend  but we had our flu jabs last weekend and we've both still got sore arms. 

Mixed messages from NHS and Government Websites don't help us, so thank you for sharing your screenshot.