Dad's end of treatment

  • 26 replies
  • 54 subscribers
  • 1937 views

Hi all

My dad made the decision a few weeks ago not to continue with his post op FLOT treatment. He'd got to the 'I've just had enough' stage. He's struggled with nerve damage to his feet and toes and fingers and changes to his taste. He did want to try and get to the end of the 4 cycles, but he made the decision that felt right for him. Today dad had his jej removed ( which he was so glad about) l. He had his hickman line taken out a couple of weeks ago and says he's so glad to get rid of all the tubes!

He has the first of his monitoring appointments in January where he'll meet with his consultant again. Dad is wondering if he'll have any scans at this time and I wasn't sure either. Is this likely to happen? Or will they only do a scan if dad feels there are any new changes or problems ( which we hope and pray not!) Just wondered what happens when you reach the end of treatment. We are so grateful for everything that his medical team have done for him, they've been fantastic throughout,  but I guess now its 'get on with your life'. It's a strange feeling, going from so many appointments to now not having as many. We just hope the coming new year is a much more healthier and positive one than the awful year we've been through.

Sending positivity to anyone going through or has gone through this. X

  • Hi CMJ78

    It sounds like you're doing well - I think your Dad just has to eat what he can, when he can, but I know it's so hard watching and worrying when you just want them to be well. I still find it hard to relax.

    My husband luckily hasn't needed a feeding tube. Even when he lost weight after various infections/hospital stays he always managed to eat again afterwards; he's put on over half a stone since his lowest - although he's still lighter than before his op. He had a routine call from the dietician today and she seems happy with him. Has your Dad been able to get out and about yet after his chemotherapy? Hopefully that will take both your minds off the pressure of eating...

    My husband's always been the cook in our house, so he was determined to get back to cooking and eating as a measure of getting back to normality, but is very much aware how lucky he is to be able to do so.

    Onwards and upwards!

    x

  • I think I've sent you a friend request - just in case you wanted to ask anything/compare notes directly. No pressure at all to accept or to keep in touch other than on here :)

    x

  • Ah that's a lovely idea. Thank you ( I didn't realise you could do that!) It will be helpful and nice to have a bit support from someone who can relate to this whole experience.

    Thanks again. Indeed, onwards and upwards x

  • Would you both send me one too please, as I too would like to keep in touch with people who are going through same thing. Is it on here ?

  • Hi Poppop

    I've sent you a request to "connect". As far as I can see, you can accept it and then I can message you directly and vice versa. Our conversations are on the Macmillan site - but they're private. I think that's how it works.....

    Best wishes

    C

  • I think I've sent a friend request to you aswell. Hopefully it works!

  • Hi 

    I am 1 year post op now.  I did have all 4 post op chemo cycles which was hard but I was lucky that I coped.

    since then I have had 3 month check ups and a year after my op I had a CT scan.  My understanding is that the check ups normally go to 6 months after the first year.

    Good luck in your dads continuing recovery. 

  • Thanks Jacpop

    Well done to yourself for getting through all  four cycles. I imagine it can't have been easy. Do they do CT scans a year after surgery? Or does it vary from different hospitals? Wishing you continued good health in the future x

  • Hi CMJ78

    IM just about to have my op after 4 rounds of chemo, surgery due 29th December. Not sure if I will manage the 4 rounds after either as I found it quite hard going. It all depends on how the op goes I guess. I presume they will do scans after everything is completed. Will ask my surgery team on Monday but I guess every hospital is different.

    Wish your dad all the best for the future

    Best wishes

    Dean

  • Hi JacPop

    Well done for getting through your post op chemo and hope your scans gave you good news. It's the op for me next then probably 4 more rounds of chemo so hopefully it will all go ok

    Best wishes for the future

    Dean