Head and Neck Stage 4 looking for similar to engage with

Edit....sorry first post went to newsfeed rather than community....here it comes again but hopefully in the right place now!

Help!  I'm currently stage 4 with head and neck cancer undergoing a trial.  Up to now I've maintained a pretty positive approach and have been quite active despite a few stays in hospital and hospices after treatment has knocked me off my perch.  The tumour is getting more aggressive and I find myself getting a little more depressed and even frightened now of my time ahead and what it might bring.  I'm looking for support to try and LIVE with cancer rather than just sit here waiting to die.  Before this wretched disease struck I was a primary school teacher which I ️ed.  I have 2 teenagers at home and an ex who's returned to help out with the daily routine of life.  We have 2 beautiful labs (fab for well-being absolutely crap for infection risk!!!).  I have 2 sisters and a mum on board to support (sadly dad has dementia).  I have a strong WhatsApp group of friends who help in many ways from little things like sharing wordle scores (it's a welcome distraction at times believe me!) to taking me out for coffee or picking up meds.  Thanks if you have made it this far!

Can you give any help/advice in how I shake off this terrible depression and start living the precious bit of life I still have left with my amazing friends and family?  Also does anyone know of any groups who have similar prognosis, I often feel I can't talk freely to those who are well (especially cancer survivors) as I don't want to bring them down too!

Hit me with your +ve ideas please....

  • Hello lisals,

    How you're feeling is natural and it's important to talk about these feelings. It's been a difficult time so please don't be afraid to talk things over with your family, I'm sure they'd be a great help to you. There is other support out there as well. You can find infomation on living with cancer and ways to manage it here. There are also advice on the NHS website that can help improve your wellbeing.

    This forum is always here for you when you need it.

    I hope this is useful,

    Moderator Anastasia

  • Hi. I've been diagnosed with head and neck (carcinoma specifically) as of February. Noticed my lymph node on my left jaw had swelled up, turns out it was due to dragging the cells into it and has stopped it spreading further south. I'm 35, 2 girls aged 6 and 2 and a very active job as a bricky (well I was before being signed off). It's a massive shock. I've had 3 rounds of chemo which hasn't shrunk anything but has stopped the spread and any growth. Moving onto radiotherapy end of this month. Friends and family say I'm doing well and I've even been called an inspiration  to some. I'd rather not be but it is what it is.

    As for shaking it off? Each person is different and has a different outlook. I haven't refused to read anything about it but I just don't want to. Every individual is different so one case is different to another. I am who I am. I'll deal with it my own way. Like you should do. 

    I said at the very start of all this that medicine is 10% of the treatment whilst the other 90% is the mental side. I'm a pessimist on a huge scale but having to change that mindset hasn't been as difficult as I'd have thought. Others have cried more than I have.

    All I can suggest is that you sit up straight, broad shoulders, wake up every morning and crack on. It's easier said than done, granted, but the alternative is sit and mope and waste away. You can't do that. Even if for those around you. It sounds like you have a decent support group and network around you. Use them as your positives.

    Feel free to drop me a message on here if you want to (or are able. I don't know how this forum works yet). 

  • Hey Matt, thanks for taking the time to reply.  Glad to hear treatment has stopped growth for you even if that's all it's done.  My treatments didn't really do much for me!  My tumour continues to grow like a weed!  I'm pretty much at the last chance saloon for treatment now and at best it's design was to slow things down rather than save me and looks like it's not playing ball.  Up to now I've been pretty positive mentally but over the last couple of days I seem to have been crushed mentally.  You are so right that it's 90%  mental....I just can't seem to drag myself up and motivate myself.  I know the weeks left are precious and my end will likely come through an infection, which could come at any time, so I feel so foolish wasting this time wallowing in self pity.  It really helps to hear you being so strong.  I've been in bed sleeping all day (first time ever!) But gonna get up now and walk the dog with my daughter, see if I can fake it for an hour or two.  Thanks again for the encouragement and all the best with your continued fight.  Radiotherapy shrunk my tumour for a month or so and I actually felt good as new during that time, hope it does the same for you.

    Lisa x