This is just so hard

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I have been told after two rounds of chemo that it is not curable only manageable. I will have to have chemo for the rest of my life I am devastated and have had enough. I have been off work sick for a year and now worry that’ll make I won’t be able to go back to work, although work is such a toxic place knowing I am not fully healthy as a Deputy Head I won’t be able to do my job properly. I can’t even walk up the stairs without getting tired and being in pain. Chemo has triggered my fibromyalgia and my legs burn. I stay in bed most days I feel like my family have given up on me. I’m not seeing friends anymore just can’t face anything. I was given a life expectancy of 18 months I wish it was as sooner just to get this all over and done with. I have been put forward for a trial but this is now delayed as they did not have enough cells and need to retest to see if I’m eligible for it. My head is working over time constantly telling myself to a get up but I don’t. Ive really had enough. My family now just get on with life it’s like I don’t have cancer anymore or they have just accepted this is how I am now. I am depressed and seeking help. Cancer has turned my life upside down. A I don’t want to lose my job but I know if I can’t go back in this state and no one will employ me knowing I have to have chemo every three weeks and I don’t know how I’ll respond. I thought about changing careers but not sure what to. Any suggestions or links helpful. 

Is there anyone in whose cancer is inoperable and you have to now just manage it? How do you get on with life? How do you cope? 

  • Hi  

    A big welcome from me . Sorry to hear about your situation . I can’t answer it directly  as I came here for my mum , also a stage 4 patient since 2009 and she has just started continuous treatment but  using a single targeted treatment. She is also much older than you so a completely different perspective.

    However a couple of points you might find helpful .

    Macmillan has teamed up with Bupa to offer six free counselling sessions . It’s in response to the reality that half the battle is with the mental health aspects that accompany this process . 
    Our helpline staff can assist with the details and some may be possible remotely if you feel that might be of assistance .

    The other aspect the helpline team could advise you on employment rights . They have all the up to date information on the legislation and would be happy to chat this through with you . I guess the aspect regarding your fitness to return and at what level would require some medical input but no harm in finding out .

    Additionally bowel cancer U.K. has a forum and supports from people who are on continuous treatment and you might find it beneficial to link in with some of the Long term users to see how they balance it out in practice .

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Thanks for your reply ot was really helpful. 

  • Hi Jay1

    I'm so sorry that you are dealing with this I am in a different position to you however I worked in Education for a while and know what joy that can bring but in todays stressful attainment targets and endless paperwork it can be exhausting 

    Do you have a good relationship with your head? 
    I realise that you will be covered by sick I myself was out for three months a different reason but my head encouraged me to be with my son. She had cover I was only assisting and teaching art not so important as you 

    It must be so difficult  I wouldn’t change careers yet  

    If you feel at a later date you’d like to get back teaching part time it may be possible  I just realised I didn’t ask what key stage you are  do they even call that now?

    I think it may be a good idea to list pros and cons and talk to your head and really think what you want  I hope that the school will support you in whatever you decide 

    Take care Jay  I hope that your treatment goes well 

    Best wishes 

    Ann
     ‍Art

  • Hi Jay

    I have incurable cancer and have been on continuous chemo (with a few necessary breaks) since September 2020.  I have been on quite a few different treatments and am now on Regotafenib after some recent spread, which is 3 weeks of tablets and one week off.

    I see friends when I am feeling well and also family for meals etc, we go on short breaks to the coast too.  I'm not saying it is easy because it isn't,  I get as much rest as I can and just try and live a "normal" when ever possible. 

    I hope this is helpful to you. X

  • Hi Marycl

    Thanks for sharing. 

    Your post gives many of hope 

    With Kind regards 

    Ann
     ‍Art