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. 

  • Sarah, I have followed you over to this forum. I hope that is ok. 
    This was the support forum that had been suggested to me. 

    Please don’t feel alone; it’s a worrying time so maybe we can benefit from sharing concerns on here. 
    please take care. 

  • I am so glad you have done that. I was a bit thrown when Steve answered us both. One of the problems is sometimes needing to rant and scream because our husbands are driving us mad and I would like to be able to do it in a safe place. Love him dearly but this is really not an easy process for the wives. 

  • Hi Sarah, I rarely visit here as I find myself almost feeling guilty as so many others seem to be in a much 'worse' situation than me, but I am having one of 'those' days and your post just leapt out at me.

    My husband has a fairly rare type of blood cancer (Myleodysplastic Syndrome) and prognosis is 'poor' but also uncertain. He doesn't cope with uncertainty,  and also struggles with the treatment. He is definitely  driving me mad! 

    It is difficult to put into  a post here why and how he's driving me quietly bonkers, but just seeing your post has already improved my day. A problem shared is a problem halved as the old expression goes,  so thank you for posting 

    Hang in there Sarah, you are not alone.

    x

  • My oh also has advanced prostate cancer spread to bones ,unfortunately his ht has not worked so praying this chemo will help ,lately he hasn't been goid to live with so know your pain , unfortunately the treatments they are on can cause the to be irritable,can you not call his mcmillan nurse they may help,I'm shocked he hasn't seen a oncologist my oh is every 3 weeks but that's probably because his treatments is not working and went through chemo ,honestly call mcmillan x

  • hello Hattie, I am hoping that this group is exactly here so we can scream about how hard it is for us. Everyone I talk to asks how he is doing and sometimes I think what about me. Having said that my husband is being almost his normal witty fast talking self at the moment and it is really confusing to suddenly find life such fun. Long may it last. 

  • , take the positives wherever you can find them. Enjoy the good times. Make happy memories; that's what I'm  doing!

  • hi Tina. We were assigned a nurse when my husband was first diagnosed and told to keep in touch and not to be strangers. It was really comforting to be told that but the reality was very different. We could never get hold of her, only an answering machine and between us we must have tried ten times and never once got a call back. Then when the RT finished the specialist nurse there said she would be ringing every two weeks to see how my husband was doing ( and he was really I’ll with radiation sickness) and we never got a phone call. It is hard not to feel abandoned. 

  • Hi.

    My husband also going through this.  He is (a very young 80).Had bad RTA 4 years ago with extensive injuries from which he made a fantastic recovery  4 months later diagnosed with tonsil cancer and after surgery + extensive radiotherapy now in remission. PSA been creeping up on watchful waiting  snd now at15 had MRI ,(PI RADS 5) Had a bone scan last week and has appointment for results this week.  He has refused a biopsy as says he wouldn't have radiotherapy and as he has zero symptoms, would rather just have hormone treatment if necessary.  He is relatively chilled about it, but I am so stressed, as are our 2 daughters.  We nearly lost him twice and it all seems so unfair- but I suppose everyone feels that. We are due to go on a cruise next weekend, but if the bone scan shows spread his insurance won't be valid as it was taken out on an active surveillance basis.  Really dreading the appointment and its 5 days away!!

    • How horrid for you. Hard to stay optimistic having been through all before. Perhaps your husband will change his mind about the radiotherapy if he needs it. It certainly puts the brakes on the cancer but he may feel that at his age he will live the same length of time with or without radiotherapy. I think my husband would say the hormone treatment is way worse than radiotherapy anyway. I wish you strong nerves over the next few days and cross my fingers that you can go on the cruise
  • Thank you.  Yes I think he feels his life expectancy would only fractionally be extended by RT and he had very bad side effects from it before.  Its hell isn't it!