Hi Colin, It's been a while, sorry to hear, though not surprised ,you are still struggling, I know how tough it is for us to live with our prognosis, I focus on my kids, grandkids and partner and the things we like to do, when i am able. I don't dwell on the past or look to far ahead, I try to make the most of my good days and accept that I will have bad days and see every day I wake up as a bonus. I know it's easier said than done but it works for me and my friends on the same journey. I got my relief cushion from my district nurse it's got a firm base, "NOT memory foam" memory foam does not support well, with a natural latex foam top, though as i now have osteoporosis and lots of micro fractures i will need an ergonomic one. How are you getting on with the hospice palliative care team, best wishes, Eddie

Hi Eddie.

Great to hear from you my friend.

I have to admit that at first I was scared at the thought of going in and being under the Hospice and what would happen.  It hit me more when I read the brochure... 'for people with a life limited illness'.   But now after being under the Pallative Team, they have been absolutely great with me.  They have helped me and my wife so much lately to accept things and to focus a little bit clearer.  I feel a lot better because of them. Like yourself, I am focusing more on my Daughters and grandchildren now and greatful for each extra day with them.  

I have been looking around for a support cushion and all I seem to find is memory foam cushions.  So many different ones to choose from.   I'm with my Nurse in the Pallative Team on Wednesday, so I will ask her about the type you mentioned.  It gets so sore and uncomfortable after sitting for a while now.  

Also my Consultant is now seriously considering trying me on Hormone Treatment.  So that should be interesting.   

Thank you my friend. 

Colin. 

Colin i'm so pleased you have the hospice and their palliative care team supporting you so well done, the number of people who still think the hospice is just somewhere you go at the end is sad and they are missing out on so much because of it. like you my family means everything, even my nutty jack russell. I don't like to think how i would be without them, I'm sure your nurse can help you find the right cushion, maybe a different type will suit you better. How do you feel about starting hormone treatment, been on it 2 years, my only treatment now, till the end, best wish to you and four family, take care, Eddie.

Hi Eddie....

My family too are everything to me, & my daft Black Labrador too.  I look forward to each day now with them, as I know it will end sooner than I would like it to do. 

I'm just scared a bit about Hormone Treatment, because of what I've read & watched about it, and also the consultant was so reluctant at first to give me any treatment because of my past medical history.  So it's something that I have to think hard about.  

Thanks anyway for your help Eddie & all my best to you & your family. 

Colin. 

Hi Colin if you are referring to the side effects from hormone therapy HT, there are a few and a couple, fatigue and erectile dysfunction can be tough to live with, but most are quite easy to treat and nobody knows which side effects they will get or how hard they will get them, some get no side effects at all, like you I had other health conditions to consider and my family and the fact, that apart from a course of radiotherapy HT, is my only treatment. I also have a cancer that adapts quickly to HT, I think somebody up there doesn't like me. best wishes my friend and good luck with your choice.

Eddie

Hi Eddie,

Many thanks for the information regarding the HT.  As I'm sure you already know, the Fatigue & ED already starts before you even get to the stage of having HT.   So having it get more advanced with the treatment, I can only imagine it will get harder to accept.  I already have memory problems,  so it will probably go worse for me.  

I hope you dont mind me reading your profile, ... and I'm really surprised as to just how so similar we are to each other.  Age, PSA, etc....   58 soon too. 

It's great to actually be able to talk to someone who knows exactly what I'm going through.  All I have ever found is others who are having all the treatment & who seem to have had a healthy past. Its hard work trying to find other people who are in our similar position. 

 I really wish you all the best my friend.  

Take care

Colin. 

Hi Colin, we have something else in common, memory problems, I have acquired aphantasia, had a brain MRI just over 3 weeks ago as you need something traumatic to happen to trigger it and as I haven't their looking for something  else dementia and MS are possibilities. I also have brain fog also called CRCC cancer related cognitive changes, seeing a psychologist about them both, if I remember LOL. take care.

Eddie

Hi Eddie.

Sorry to bother you my friend, but I was just wondering if you had ever come across large swelling in your legs and abdomen because of the spread to the lymph nodes in the groin ?  Been told that mine are not draining now.

I have now gained 21 lbs of excessive fluid in 2 & half weeks & also in a lot of pain too.  My Hospice Pallative Team are trying to get help for me, because the hospital are useless.  

Many thanks 

Colin. 

Hi Colin, not had ascites "if it is this", personally, but have come across it in a few people with cancer especially if cancer has spread to lymphatic system or treatment is damaging it, Colin i am assuming your feet are swollen as well, your abdomen will need to be drained it's a minor procedure, called a paracentesis and can often be done as an outpatient and by a nurse practitioner, though like me we have other health problems which may complicate matters, the swelling in the legs and feet can be helped by raising the legs just put a pillow under your ankles when you are sitting or laying down and having  someone lightly massage your legs and feet 3 times a day, and not being inactive for long periods there are specialist therapist who do this, but if you want a friend to do it check with the hospice first, hospital are useless, i never noticed LOL. good luck my friend.

Eddie