Dad's end of treatment

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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
    You may remember that your Dad and me have been treated at Newcastle RVI. I've not had any further scans since I finished treatment last December. I did talk to one of the team a couple a weeks ago about the cough I have had for 10 weeks+ but since I still feel fit and well it isn't seen as a problem. I see my GP practice in the morning so they may send me for a chest x-ray but the cough has nearly gone anyway.

    My theory is an re-occurrence will be in the specimen in the Laboratory - I'm so glad they could cut it out. Maybe see you at the Upper GI coffee morning next week? I couldn't make last year because I was in chemo.

  • Hi DaveHome

    Yes I do remember. Nice to hear from you. How are you getting on, apart from the cough? Dad was talking to Toby yesterday when he went for his jej removal. He mentioned the Christmas coffee morning next Mon but we're unable to go unfortunately.

    Thanks for the advice  though. Dad's margins all looked good after his surgery in July, with no cancer detected in the 38 nodes they removed. We just have to hope it remains that way, and we'll always be grateful that Dad was eligible for surgery.. I hope all is OK with your cough and hopefully your GP will do what's necessary. Always best to check. Take care. May see you at the support group in the future!

  • Hi CMJ78,

    First of all, well done to you and your Dad for getting this far. My husband made the same decision regarding the post op chemo - one cycle made him very ill, so he also decided it was enough. He had a monitoring appointment a few weeks ago (around 5 months post op) which didn't include a scan and was a meeting with the consultant, our specialist nurse and the dietician. We were told he'll have another appointment in three months time. This was at the Royal Liverpool - whose care has been excellent throughout.

    I know exactly what you mean about it being a strange time. I think I've struggled to cope with the end of treatment and "freedom" much more than my husband, which I really didn't expect.

    I've only posted a few times but have followed you and your Dad as you were only just behind my husband in terms of treatment. I wish you both all the very best.


  • Hi my husband did not have any post op chemo as was very unwell following the operation as he had a bowel tumour removed at same time and the drs felt it would do more harm than good. We have had 2 follow up appointments but this was because he was so ill but no scans and none have been arranged. It’s a strange time I agree no as he has been discharged and we feel a bit lost. All the best for your dads recovery.


  • Hi CW68

    Thanks for your reply and the info. Yes it's certainly is a strange time. My dad was told he will have appointments every 3 months in his first year following treatment then once every 6 months the year after I think?

    His weight has been fairly stable and he even put on a couple of pounds which is encouraging but now that his jej tube is out, its purely food that he'll get his calories from, so we will still keep an eye on his weight. I do feel he has started eating a little better compared to the summer after his op. It obviously takes time to adapt. How is your husband doing currently?

    I wish you and your husband continued positivity and strength going into the new year and beyond. No one can predict the future, but I hope it holds good health for all of us going forward. Do take care x

  • Hi Poppop

    Thanks for sharing. It's very much an individual choice isn't it. I hope your husband is doing better now? Amazing to think the docs found and removed an additional tumour during his op. Sounds likes he's been through alot though. I wish you both continued good health x

  • Hi CMJ78

    yes it was a shock finding the 2nd tumour and only showed up on the pet scan. Totally unrelated and both tumours were primary. Had he not had the pet scan we  would not have known about bowel  tumour until it was at much later stage, apparently it was a stage one. Hubby has had a really awful time but is slowly recovering and I am seeing an improvement in his health but he is throughly fed up. His biggest problem is eating as can only eat small amounts like your dad but has bowel problems due to op but although extremely thin is definitely getting stronger. 

    thank you and wishing you and dad a very happy Christmas and continued good health in 2024 xx

  • I totally empathise with what your husband has been through and you too. It has been and continues to be a worry. My dad still looks very thin. He was never a large man but you can tell he's lost weight since the op. Now that he doesn't have the feed tube as a back up, I worry more.  His eating has improved and I try to make a few dinners for us, but wish I could see a little weight gain. Dad is snacking a bit more than he previously did, so just hope that continues.

    I can imagine how fed up your husband must be, I know my dad has felt the same. He keeps saying he's looking forward to spring so he can get back on the golf course, which is very encouraging to hear.

    Likewise, I wish you both all the very best for Christmas and a stronger, healthier and happier 2024 x

  • Hi CMJ78

    It's great that your Dad is starting to eat/snack more.

    My husband is doing well thanks. Like your Dad, he was a slim man and lost weight after the op  - but he didn't have a feeding tube. He's been extremely lucky in that he seems to be able to eat what he wants, but in smaller portions. He's had a few "blips" when he's felt too full, had stomach ache and/or diarrhoea, but he usually just goes to bed and feels better after sleeping. He/we are learning - doing too much bending over isn't great for his stomach, and sitting in a car too soon after eating makes him uncomfortable.

    He still gets fatigued - which frustrates him as sometimes there's no obvious cause. He's often in bed by 8pm but some nights he's fine. He's certainly able to do much more than he could a few months ago, for which we are very thankful. As with many people, it seems to be trial and error - and just taking life as it comes. Sometimes there seems to be no logic as to how he feels.....

    Wishing you, your Dad and family a peaceful Christmas and a healthy new year. So glad he's making plans to be on the golf course again!


  • I think you've hit the nail on the head there CW68. It is like you say trial and error and no logic to it at times. Did your husband cope well without a feed tube? Sounds like he's managed pretty well on the whole.

    I think the eating side is always going to be of concern to us, but I try to make sure dad eats as regularly as he's able to. He still  has days where he feels full quickly so I don't like to push him too much.

    Here's to better times in 2024 for us all x