Diagnosis - I’m scared!

Scared, you will be of course but that’s the reason we (on the forum) are here on your shoulder, standing beside you or holding your hand.

We are all too scared to admit we are scared. You are the exception. And I’m glad you’ve had the strength to shout it out to us.

Lonely… yes, when it comes down to it we are all alone at times. The forum is one step away when we need a hug. I feel alone and my eyes don’t care who sees, but tears fall easily and steadily sometimes.

But there’s a lot of people around me all the time. My team that’s reviewing my scan data are on my side. The questions and blog I write allows me to feel the presence of others, strangers who care. So I’m never really alone unless I want to be — and I don’t want to be.

So Mr U is there beside you.

Reach out and you will find hands to hold on to. 

Thankyou so much for your kind words and reply. I have read your blog and I am already in awe at your strength. They have said dad has cells on his spine so I need to be on red flag alert for spinal cord compression and now after seeing your journey also petrified as to how I’d spot if he was having an embolism.
I think one of the biggest things I can do right now is face my fear and admit I’m scared, shout it out loud because my dad isn’t and won’t and I know deep down he is, he’s told me he’s worried for me and I sit there and think how can you still even think of me when you have this! But he is a parent and that is natural - he is worried his time has been cut short very quick and it’s time we need… even for us to say the things we need to nevermind sort out all the other matters that need to be dealt with in such a terrifying time.

I really want to thank you for your time in just even replying to me.. you did the other day too and it helps knowing that I can come on here and just blurt it out and feel just an inch of being less alone. None of my friends have ever gone through anything like this with themselves or their family and I wouldn’t even know where to begin in telling them! I’m going to really help my dad sign up on here so that he too has a few strangers to support him and hopefully help him feel a little less alone too.  

Hello Hope James35ef76 

Well, I am so sorry to read your post, that's not good news and the way it was delivered is shabby to say the least.

Nothing is set in stone, and there is lots of help available for you and dad. Sadly you may have to ask for it but by being proactive, the help you need is there. We as a group are here for you both so please do keep reaching out - we will do what we can to support you.

Your dad's team should allocate him a dedicated CNS (Cancer Nurse Specialist) and a Macmillan nurse although this does vary from NHS Trust to NHS Trust and these should be your main points of contact. Your dad's GP should also be able to point you in the direction of local palliative care.(this isn't just end of life care - it's a source of local support).

Our Support Line is there for you both on 0808 808 00 00 (8am to 8pm 7 days a week) please do make use of this - it's a free call and they can help you both.

If you have a Maggie's near you please do call in. This is a cancer support charity where you can drop in for help and support here's a link - "Maggie's". Your local hospital should also have a Macmillan centre where support is available.

Telling you children isn't easy and here's a link to some information which I hope will help:

Talking-about-cancer/talking-to-children-and-teenagers

It is a lonely journey - unless you have cancer or you are a close relative it's hard to understand feelings and emotions - I can cry for England, so don't be ashamed.

I hope the above helps - if I can do anything else for you just let me know.

Best wishes - Brian.

Hi Hope James35ef76 , that is a shocking diagnosis and to be told in a rush is very unkind and unprofessional.  I was initially given 5 years but as we have discussed on here many times, putting timescales just isn’t helpful.  You won’t see it like this yet, but you have been given an opportunity to discuss and sort out your dad’s life with him.  
In terms of treatment, you have made the right call and even if he decides not to go ahead with chemo you have a short while in which to make that decision.  I personally would take the chemo option (I really struggled with it and didn’t get to the end) but it undoubtedly has bought me time and I would do it again.  
We are all with you.

Hi Hope,  I'm so sorry you were treated like that by the oncologists, all chemo is hard but not everyone has a bad time, my husband had chemo and managed really well he was 74, our oncologists did say the chemo for prostate cancer is not as bad as for other cancers so let's hope this one is not to bad.

My husband carried on working at home doing things he needed to do as we were renovating our bungalow so exercise can help.

No one can give you a time line on prognosis as everyone reacts to medication differently, if this oncologists continues to be less than help speak to PALS about being transferred to another one.

My heart goes out to you and I can remember being really scared about what was happening.

All the best Sheena 

Sorry for the late reply. I was traveling yesterday.

The clots are easy to spot because of the horrendous pain in the chest. Like nothing else you’ve felt before but the pain is accompanied by the panting and breathlessness. Rode thee these symptoms have to be taken very seriously and a quick trip to A&E is necessary.

The spinal cord compression will be checked by an MRI of the spine. This is a very quick and very easily diagnostic scan. But I hope that’s not the case for you dad.

As for the strength I show sometimes in my Blog, I receive most of my energy from members on this forum. I grab handfuls of optimism and positivity from each and every one. It’s hard for me to keep my head on the right way around and need to read and communicate to other forum members after I’ve recharged the batteries of my soul.

Your Dad will benefit from the help you’ll get here so keep asking questions and reading good quality information rather than Dr Googles scary answers.

I really hope you get the comfort and support you need via this forum and the clinitians that are looking after your Dad.

Good luck

That’s so kind but also, from and dads position, very accurate.

As a dad myself it’s really easy to feel vulnerable and isolated but actually fear is the worst feeling. The chats have to come in time and time is very precious but also very boring too. My mentally has changed and now is easier for me to find time to help fellow travellers along the prostate cancer pathway than friends who I really don’t need any more. So never worry about asking questions and disturbing me because I’m here hoping I can help in som small way.

Your talks with you dad are in a way special but also important in many ways, but sometimes we only want to talk about the unimportant things and reach past the medical and think about the cosmos or anything that’s far away from our shrinking world.

It’s horrible to be unable to get in or out the car. It’s horrible not to be able to get out of a low seat, or many stupidly simple things that now are beyond me. I’m becoming weaker baring my head. So watch out for the raised voice and the frustration leaking out. Be patient and forgive bad manners. (ni ni na na na na nu nu).

You shouldn’t worry too much but ask away anytime, anything.

Good luck 

So it's not just me who struggles getting in and out of a car and up from the settee. It really is a horrible feeling 

Indeed it is a whole new world Sprinter.

My life is one of a partly disabled person. I now look for lifts and I’ve never looked for them before. I see steps as something to avoid. The cars are another nightmare I am weary of all the time. My son was finding parking spaces that had no cars my side so I could throw the door wide open. It’s frustrating and demoralising except for the fact that everyone around me are helping me so much because my time is limited.

It all too much sometimes. I’m an emotional wreck at the slightest hint of praise and it strikes me it only going to get worse.

The new me is not what I was expecting and I’m not ready for it.

End of whimpering…

Good luck