Results Day

Hello GilliB 

Support for cancer is there but you need to reach out and find it. There's our Community and then there's "Maggies". This is a cancer charity founded to help anyone and their family affected by cancer. To find your local Maggies - here's the link - https://www.maggies.org/

If you go to the top of this page and click on "Cancer information and support" - scroll down to the bottom of the page there is "Help and Support in your area" - click on this and add your postcode and that will come up with plenty of local help.

Your husband is being a "man" - we all do it - let's carry on - I can deal with this (I did just that!!). We have more ladies than gents on here so don't worry - he's normal and that's the way all men react. Once he realises he's not alone he may come over from "the dark side!!".  It's tough on us men - first of all we lose our dignity and the if that's not enough the blasted hormone therapy almost changes us into a woman!!

We get by on the community by being honest - no subject being taboo - after all sex and our "bits" are involved and quite a bit of humour. - at the end of the day there's a bond that brings us all together Prostate Cancer - and together we are stronger.

I hope today is a better day for you both.

Best wishes - Brian.

Thank you for your kind words. Sorry I have been missing but discovered that youngest daughter had found my post and a couple of things weren’t disclosed to protect the adult. I’ve been forgiven. Full disclosure. I had no idea this would be so easily found. I thought it was a private group unless you joined. Bit of a shock.

Both daughters agreed there are some lovely comments and good support so there you go.

I love your reply Brian.  There’s so much more I could say and our black sense of humour has come to the fore, especially when on a call to our friends in the US, trip in New Year probably not happening. We went from tears of sadness to tears from laughing. Story for another day.

So husband has first LHRH injection tomorrow. It has been major stress trying to get the prescription in time as despite booking the appointment last Wednesday the  GP supposedly dealing with it was unsure, wanting to prescribe Triptorelin 22.5mg (6 month), not working on certain days, not able to contact prescriber for whatever reason. I ended up calling, being persistent and it has been so stressful. Only collected today, pharmacy were actually brilliant.

To cap it all said doctor rang up to rant at my husband this morning whilst he was at work and moan about the Team Lead. Not impressed. Hope it doesn’t carry on like this.

Thought we were doing quite well til then!!

G

Good Morning GilliB 

Thank you for such a positive reply - although the Community has only 80000 members spread over 50 plus different cancer forum - last year we had over 6 million page views - people read through the Community for information without joining.

We have 4 adult children and we had to "cough" to the full diagnosis right away as I almost didn't make Christmas being in hospital (full story if you click on my avatar).

I hope the Hormone Injection goes well today - remember it's 26 weeks worth and to make a note of when he is next due, It's also worth asking the GP if he well prescribe calcium and Vitamin D tablets and HT can reduce your bone strength.

Things will settle down and life will get back to the "new normal". Stick with us, keep us posted and we are here for the ride with you.

Best wishes - Brian.

Thank you. 

I’m wary now of saying too much in case it’s seen by our daughters. 

We were told the HT treatment is for life. Plus chemo at some point which I thought was in the next 2 months and then radiotherapy. There was so much to take in and my copious notes are now a bit confusing.

Was hoping for a letter confirming treatment plan but hasn’t been forthcoming yet.

Feeling quite deflated today after the battle getting the injection for last Friday.

I’m sure things will settle down but feels hard at the moment.

G

Hi GilliB 

Yes I was told the same treatment plan (ish) last June 2023 but with the HT working so well the chemo has been put to one side. 

I do believe that my consultant thinks that I am not strong enough for the chemo as well which is very strange as I feel as strong as ever.

Please don't feel deflated as things are always a battle nowadays but I always feel much better once I have sorted things out.

Yes things will definitely settle down and feel much better soon but please let me know if there is anything that I can help/support you with??

Prostate Worrier.

Hello GilliB 

It's very confusing at first but it will settle down and everything will fall into place.

We are all different and we all follow "tailor made" treatment paths - but at the end of the day the aim is the same.

If you need to ask anything or wish to say something in private my Message Box is open and you can drop me a private message if this would help.

Best wishes - Brian.

Hi Gilli, for us, letters go from the consultant to the GP and my husband receives a copy. This can take up to about 6 weeks depending on which speciality. Oncology usually takes 2-3 weeks. If you are struggling to recall everything, do you have a prostate nurse specialist you can contact who will be able to talk things through with you? If not, the consultant’s secretary might be able to help you. I think you might have to have your husband with you to give his consent for them to discuss his case with you?

re it being hard. Yes, it’s a tough journey but you are stronger than you think! There have been times when I have felt I would surely sink. Somehow I carry on although the mental strain has seemed unbearable. We all know those times and are all here ready to throw you a life jacket so you don’t sink to the bottom :) hang on in there !

Sending a big hug x

Hello G,

I have just joined this community group and felt compelled to message you. My father got told his prostate cancer has spread to the lymph nodes yesterday. He is a Gleason 9, has begun hormone therapy and will have his first injection on Friday. I feel as if I am living a bad dream. My father looks the picture of health and like your husband, had zero symptoms either. So much has happened in the space of 4 weeks and it has been so much to process. 

I am sorry to hear you are having a difficult time. As someone going through this during a similar timeframe to you, I can completely relate. This is so much to process and will take a long time to fully sink in - don’t be hard on yourself.

Sending you a big cuddle. 

Hello Prostate WARRIOR (that’s how I originally read your name tag )

Your comments around HT give me some hope for my dad. Please can you tell us if you have doing anything else on top of your HT? Have you changed your diet and lifestyle completely since June of last year? I’m wondering if there have been any factors that you think may have contributed to the PSA level drop. That is incredible.

Hello Perry1919 .

A warm welcome to the family. Can I suggest you join the prostate cancer forum as well as putting some details onto your profile such as Gleason, TNM, initial PSA, age of dad. This then helps to give more targeted information and stops having to ask the same questions in the future.

The first few weeks are difficult for all of us as our world is turned upside down by a cancer diagnosis and it seems all consuming for a while but things do settle down once treatment has started. The hormone therapy will put the brakes on the cancer and give time to sort out what further treatment might be needed at this stage. It does come with side effects so keep your dad as fit as possible as this will help him cope with the fatigue in particular. There are also some recommendations on diet such as avoiding caffeine, reducing full fat dairy, avoiding processed and sugary foods plus generally eating plenty of fruit and veg and white meat and fish.

My husband was diagnosed almost 4 years ago with spread to the lymph nodes both local and distant, plus visceral mets. He is still going strong and we have a good quality of life, although different from what we had before diagnosis because we have to work round the fatigue. Staying positive is important but we all have wobbles at times and this is where the forum is so good as there is always someone out there who knows what you are going through and will help pull you through. This disease is very much a family thing so don't forget that your own health both physically and mentally is important and there is plenty of support available.

Please come back with any questions no matter how small or silly they may seem to you and someone is bound to come back who has been there, done that and worn the T-shirt.