Ongoing treatment, recent channel TURP and feeling alone.

Hello Graeme (Graeme ) 

Welcome back - I remember you posting just before Christmas when you didn't have your full diagnosis. Well it looks like things have progressed, you have a full diagnosis and treatment is in full swing. Having to deal with cancer and the side effects of the treatment is bad enough but having no family for support can't help.

Here's a few ideas to help you (and to help us to help you)

* How about detailing your journey on your profile (you can read mine by clicking on my name or avatar). To do this on your home page click on the green round disc top right, then "profile" then "edit". Once you have written something remember to save it - once we have more details about you we can tailor our replies to you.

* On the cancer chat group there's a general chat thread - here's the link to it:

 Awake and up all night 

Even though it's called "Awake and Up all Night" there's always someone to chat to - they may have other cancers but it's a general chat thread - I put some pictures of my greyhound up this afternoon for example.

* Would you like your own personal Macmillan "Buddy" to chat to once a week - you can chat about anything - here's the link you need:

Macmillan Buddies Service.

* There are other Support services out there too - "Maggies", Andy's Man Club and Men's Sheds to name a few.

Another option is to keep this thread going by telling us a little more about yourself - your rough location (not your address) your occupation, your interests etc - we are all happy to chat and some of us have hidden talents - it's amazing what people have done once a conversation starts.

You are not alone here - this is the prostate family - and it's a great band of brothers (and some sisters).

Best wishes - Brian.

Hi Millibob,

Thank you for the reply.

Indeed you are correct I did post when I first started down this path.

I have updated my profile with my diagnosis journey and will further update it with my current treatment 

I  have also completed the Buddies application as I think this would be good for me as I feel I just don't have anybody to talk to.

I will also look at Awake and Up All Night.

Kind regards

Graeme

Thanks for the reply Graeme (Graeme ) 

I have met a couple of "the Buddies" and they are dedicated to helping - if I didn't spend as much time on the online Community and a couple of other Macmillan off line projects I would have undertaken the Buddy Training.

I had issues with my flow and the TURP operation sorted me out - as I had an indwelling catheter for 10 months before the TURP I had to learn to wee again!!

If you post anything on this thread - it's open to all the Community so you may well get replies from other members - I wish you well moving forward.

Do let us know how you get on with "your Buddy".

Best wishes - Brian.

Hi Graeme

I hope you find the extra support that you need from Brian's excellent suggestions. Although it is my husband who has PC I have found posting and reading here  a real help in navigating his journey so far.

i just wanted to say that in many ways your story is similar to his. He also went to his GP about numerous trips to the loo in the night as well as problems in the day. His PSA was 57. His MRI showed a suspicious area in the transition zone mostly on the right but wrapping round to the left. The subsequent biopsy showed Gleason 9 (4+5). He too had a PSMA PET scan but luckily this was clear for spread. However, due to the highly aggressive nature of his cancer, he was put on HT injections for 6 months to be followed by radical Radiotherapy, to include seminal vesicles and abdominal lymph nodes. He will start this in the middle of May.

Like you, he had to have a channel TURP a month ago and I must say it has really improved things for him! 

As I say there are a lot of similarities to yourself and if there is anything you want to ask or compare please feel free to do so

Wishing you all the luck in the world with your journey.

Karen

Hi Graeme 

This is a difficult illness to have alone. However good the treatment is, support is very helpful during the dark moments when you wonder if it is going to work.

As Brian (Millibob  has said, you can a get great deal of help.

It is possible that there are local groups who undertake interesting activities close to you. It is likely that your local library will be able to find you a list.

The key thing is company. In any group of older men there is likely to be at least one other suffering as you. If you think that this cancer affects one in eight of us, every time you go into a supermarket during the main daytime hours the odds are that there is at least one other with you.

Even if you struggle to make contact with others, there are some things that might help.

Journalling is recommended by many, though I find that hard to keep up.

One thing I do, again something I can do alone, especially if my wife has gone shopping, is sit on a bench or in a cafe and just let myself notice people.

I find that comforting. My wife thinks I am weird.

Find the thing that brings you comfort. Just the search will make you feel better.

Hi Graeme (Graeme ), sorry to hear that you have PCa and are having to deal with it alone.  From your profile, it sounds like your prognosis is fairly good, so hopefully the treatments will be curative.  
I always think it is a shame that men generally aren’t good opening up about PCa, so well done for seeking help.  You are most definitely not alone now.  Post anytime and usually someone is around to offer some useful words or encouragement.

Hi Steve,

Thank you very much for the reply and notes of support.

While I know the prognosis is good now that I'm on the treatment, I do just feel alone. The oncology staff are amazing and I know under great pressure but it just feels as though "there's your medication, see you in a month" with no chance to engage in conversation.

I do still work, thankfully, as I believe I would go into melt down without having human contact.

I will say you are not wired as there is nothing better than people watching. I live on the Essex Coast and enjoy nothing more than sitting on the Promenade with a coffee.

Graeme 

Hi Karen,

Thank you so much for your reply and words of encouragement.

My diagnosis/situation does appear very similar to your husbands.

The channel TURP was a must for me as urination was a real issue .  Thankfully I was lucky not to have to come home with a catheter. The urgency to go has heightened a bit but I'm only 6 days post op. I was really worried about the risk of incontinence but again I haven't had an issue. Strangely I have more pain/discomfort once I've been.

Brian's suggestions were really appreciated and I have added to my profile, which I will update shortly and have registered for a "Buddies Call"

I'm pleased your husbands cancer is confined to the gland. I'm hopeful that they've caught mind in time to stop the spread any further.

I would be interested to know how he gets on with the radiotherapy.

I'm lucky to live on the Essex Coast, Colchester Hospital have been amazing and its nice to sit by the sea and watch life go by.

Graeme

Hi David,

Thank you so much for your reply.

I agree it is a shame that we don't open up more, I certainly find it beneficial to talk about it but sometimes it's difficult to find someone that wants to listen.

I also agree re the prognosis, as long as the treatment does its job I should still be able to collect my pension.

Many thanks

Graeme

Hi Graeme, and congratulations because in a stressful situation you have taken one of the best steps possible. You'll get solid advice and support here, and the simple act of documenting your cancer in your profile helps you clarify things and feel somehow in control.

I've benefitted greatly by remembering that we're the same people that we were before our diagnosis. We're all struggling with something, but reinforcements are here.

Keep posting and I wish you strength and courage.

All the best,

Chris