I am new to this group.

Hi Jerry. I am so sorry to hear the news of your partner, I had a total nephrectomy 17 years ago and was fine until March this year. I am in exactly the same position as your partner now. Incurable cancer has returned. I had huge surgery and today completed the last of 5 rounds of radiotherapy. All very straight forward and painless. Will be starting anti cancer drugs after phone consultation tomorrow with my consultant. This is all palliative to try and give me some quality of life with whatever time I have left. It must be so awful for you as it is for my lovely husband. There is nothing much you can do but be there for him. We have been together for 49 years and this is our biggest challenge ever. My only advice is to try and stay positive. There are some lovely people on this site going through this awful cancer scenario. I really hope he will take pain relief and try to be positive but it isn’t easy my friend. Sending positive vibes and just be there for him, you sound a lovely lady and your support will be invaluable moving forward. Lots of love Aileen (Gooner) xx

Sorry you find yourself here.  We are a friendly bunch who are all going through similar symptoms, side effects, treatment challenges, difficult choices and a wide range of cancer experiences.  You're not waffling on at all.  This is an open forum and there's a vast amount of knowledge here and support to help you out, or just listen and empathise if you need a rant.   I'm incurable too, but treatable.  Love Claire xXx

Hi Claire. Am so sorry to hear you are incurable too. It’s such a shock but we have no option but to soldier on with the treatment on offer and hope to keep it under control. Your post to Jerry was really lovely and supportive and i think it’s what everyone needs to be reading. I personally don’t do any social media but have found reading these posts very uplifting and positive so thank you. Look after yourself and look forward to reading your posts. Love Aileen (Gooner)

Jerry,

Don't apologise for waffling on. No need at all. You are among friends/fellow travellers here. To have somewhere to express ones fears and fearful experiences is, in my opinion, priceless. And a resource I would encourage everyone use to the full.

I have cried (and i'm a great big old rufty tufty builder) reading many posts on here. I have laughed my socks off on here too. It's wonderful to have somewhere to come and read of people in desperate situations and see them getting such support and kind words and wiishes aimed in their direction. 

Regarding your husband - i wonder if he has an infection. I had a pain in my ribs, after kidney removal 3 weeks ago, that felt like a really bad 'stitch' that was cleared up with antibiotics.

Keep posting....Del. 

Hi Jerry,

Welcome to the kidney community as you well know non of us ever throught we would be members, this is a great place to get help and advice, there is always someone who will be able to help you and your partner, has your partner been offered any treatment to help during this trying time, don’t worry no one will judge you or think that your are waffling as we have all gone thru sleepiness, worrying, being frightened and running around like a headless chicken, try to stay positive and strong and ask away nothing is out of bounds, we are all thinking and going through good times and sad times but keep talking it does help sending best wishes and hugs to you both Sandy 

Hi Sandra. I really liked your latest post. It said exactly what I have been thinking. I don’t do any social media so all of this is very new to me. I finished my radiotherapy sessions on Wednesday and am soon to start chemo tablets. Consultant said will feel rough for a while. My throat is sore today but hopefully will improve soon. Thank you all for posting, I am finding the support very comforting xx

Hi Gooner,

Have you been on this site for long, if not welcome to you too, I am on my third lot of treatment I am on three chemo tablets a day, I have been on theses for the last month so far I have a very dry mouth and very dry skin they have sent me twelve bottles of mouth wash for my mouth if it gets to bad, but all in all if that is all not bad and bearable I have had a bit of a result my tastebuds have come back after two years, so I can expect to be bigger than I have ever been. so glad you liked the post stay strong and positive sending hugs and best wishes to you Sandy xx

Hi Del. Thank you for your reply. He has had the stitch for a while. He is on antibiotics now as he got I’ll on Tuesday.  He was fine in Monday. We went for a belated birthday meal with friends. Was a lovely day. But Tuesday afternoon he fell ill. Phoned doctor out Thursday. He is bit better now but he still gets stitch. Seems to be worse lying down. At the hospital Monday which I am dreading. But hey ho got to keep going and staying strong . Wish I could wake up and find it’s just a dream. Everyone so kind on hear. It does help. Thank you.

Hi Aileen

thank you for replying to me. I am so sorry to hear your news. Right now I would gladly accept a couple of years. We have always Loved our holidays in Cornwall and would love to be able to do that again. He is at hospital on Monday and I am scared they will say no treatment as it’s too far gone. I just want some extra time. Some quality time. I go through bad periods of loneliness and despair. I am trying to be positive though. It’s just hard sometimes. He is all I have. I feel embarrassed opening up this much. Thank you for listening. X

Thank you Claire for your reply. So sorry to hear of your diagnosis. I feel when we get to this point any extra time is a plus. It’s good to talk to people who understand. X