Post treatment limbo

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I finished my treatment last month, i had chemotherapy and radiotherapy. I've not been offered any support, no number to call, no option for counselling, no real understanding of how things are going to be for me going forward. I never had a named nurse. I have an appointment with my consultant next month and a CT scan, but there's no real time or space to discuss the impact of the cancer on my life. Anyone had a better experience? I did chat to macmillan online but it's not the same. Feeling traumatised by the whole experience. 

  • Hi again , unfortunately this is rather normal now as the NHS system has no capacity or money to be able to do most of this. I was fortunate to have a named nurse but this was before covid became a thing.

    Do check to see if you have any Local Macmillan Support drop in centres in your area, do also check for a local Maggie's Centre as these folks are amazing.

    Lymphoma Action run regular Lymphoma Online Support Groups for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

    You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

    As always the group are here to help as well ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hiya  I am post chemo and still going through a 2 year maintenance programme of rituxamab every 8 weeks, which is coming to a close. Since I'm responding well to treatment, I'm not a priority and to be fair, I totally understand that. BUT... there are a lot of post-treatment issues (that aren't as serious as say dealing with not being able to eat or put on weight like I had with chemo, but are still important and disorienting to me).

    I have found a Cancer Coach. She's lovely. She's not a therapist and this isn't therapy. She works with me on diet, nutrition, lifestyle, exercise, mindset and all the things I can control, which helps me feel SO MUCH better. She's certified nutrition expert, too, so I trust her knowledge. Plus any questions I have, she does thorough research and will only give proven science-based answers.

    She also helps me formulate my questions to my team. Which helps me communicate my needs better in a language that doctors and nurses understand.

    Best of luck!