Hoping to meet some of you going through the same problems

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Hi my husband was diagnosed with aggressive prostate cancer which had spread. He has had radiotherapy and now is having three years of hormone treatment. It is apparently an unusual kind of treatment and he is having such awful side effects. Between worrying about him and wanting to scream at the lack of care he is getting I think I am going mad. You can’t get an appointment with the GP. Sometimes the pain in his whole body is so bad he just groans but still he doesn’t demand to see someone about it. We haven’t seen an oncologist for a year and had just a few phone calls ticking boxes but obviously the doctor had not studied his notes. I would like to cause a fuss to demand help but he won’t do that and it is soo hard living with him these days. We seem to rub each other up the wrong way all the time. Our children all live abroad and don’t understand what is going on so I feel very alone with this fight. 

  • Hi   and  I just wanted to say that I'm holding you both in my thoughts and wishing you both strength as you support your husbands. 

    It is not an easy path we tread, but knowing we're not alone snd that others understand is helping me hugely. xxx

  • Yes thst about describes it!!! For us it is more the three years of hormone treatment which make my husband so ill  and in constant pain. He had radiation sickness too which was pretty awful but it cleared up a couple of weeks after the course finished. This seems endless. 

  • Hi Sarah, my mum has cancer and during treatment the support offered was non existent to awful. After the first course of radio / chemo therapy she was just abandoned (as she described it) by the treatment team- her assigned nurse was rarely available and didn’t return calls. being in their 80s my parents were stoical, however my siblings and I have encourage them to be more demanding and very honest with their feedback, which they have done. We are spread out as a family, the nearest being 2.5 hour drive away from the parents, we find the lack of care / compassion for older people upsetting and frustrating. Mum has had great support recently from the Macmillan palliative team - it does seem to be dependent on who you’re allocated.  

    Our experience is that you as carer have to be demanding on the patients behalf, and that in is difficult too. We got mum to give us permission to talk on her behalf (although we often need to get her to reconfirm this!) so she doesn’t have to be the demanding one on top of being the one with cancer/ pain/ side effects. 

    I’m sure you are doing a great job supporting and caring for him. We can all only do our best, I try and remember that, please dont feel inadequate.  Take care of yourself, 

  • Thank you DiMac so much for your mail. It has encouraged me. I would like to fight our corner but my husband is very touchy about it. You are right about old people being side-lined. We will get there eventually. I wish you and especially your mum all the best. Sarah