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Struggling with feelings whilst waiting

Hippochick
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i was diagnosed just before xmas with a rare form of skin cancer that has spread to my neck nodes and lungs.  

Because it's rare, there is no standard treatment so I'm being referred to the royal marsden (I'm in Cambridge) to see if there are "druggable mutations" or trials that might be an option over standard chemo. I'm told that I'm unlikely to be in a curative situation. 

apart from recovering from some surgery to remove the primary tumour from my scalp and some discomfort in my neck, I feel fine but I'm really struggling to comprehend what's going on.  Things seem normal but yet I know they're not and for all I know I might not see the year out.  I have 3 young kids and it devastates me to think I might not see them leave school let alone grow up.  I can't believe what is happening - I don't feel unwell but apparently have stage 4 cancer.  How can I deal with these emotions? Is it really all as bleak as I think it is? 

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    Hi again, so sorry to hear your latest news. It is hard to respond without using platitudes like take things one day at a time or plan for the worst and hope for the best, but these were the most useful bits of advice I received when I was first diagnosed and given my prognosis.

    Have they been able to grade your cancer yet? This will give you an indication about how aggressive or indolent your cancer is likely to be. Not an exact science, but it will help set realistic expectations and if you are lucky enough to exceed expectations that will be a bonus. Remember that any timescales you are given will be estimates based on statistical averages. The younger and fitter you are, the better your chances of being a statistical outlier in a positive way. 

    Feeling fit and well whilst knowing you have Stage 4 incurable cancer takes a while to get your head around, I'm not sure it is something any of us manages to do completely. A degree of denial and displacement activity certainly helps, even if only to forget our situation for a few hours.

    I hope the Marsden are able to come up with some useful treatment options.

     

    Good luck

    Dave

  • Offline in reply to davek
    Hi Dave Thanks for replying again. You must be bored of my many posts repeating the same thing but in a slightly different way ;) I don't know about the grading. In my referral letter, my consultant states that it appears to be progressing relatively slowly. I don't know how slow, but I suppose the fact theyre not suggesting I need to start something immediately is a good thing. I've been feeling a bit better about things today. Don't really know why but I suppose I just want to get on with it now.
  • Offline in reply to Hippochick

    No worries - this is probably the toughest thing anyone could be facing. Don't stop asking questions, at least not until you have all the answers you need.

    Relatively slowly has got to be good! 

  • Offline in reply to davek

    Just thought I'd post an update as I know from reading threads myself it is useful to know about the journey everyone goes through.

    so my referral to the royal marsden proved to be a wasted visit as whilst physically I am a good candidate for trials, I have not yet undertaken any conventional treatment so it is too soon to consider experimental treatment.

    So I am back under the care of my local hospital.  Previously they had ruled out surgery to remove the neck nodes due to the presence of mets in the lungs but they have now reconsidered this and recommend a neck dissection as debulking surgery over chemo. I had another ct scan which showed that the cancer is stable and so surgery is an option.

    I am provisionally booked in for this for a weeks time.  I haven't yet had a chance to discuss this properly with anyone.  I would like to know why surgery is now seen as viable and what treatment would follow for the lungs.  I'm still doing ok although the stress is doing my head in!

     

     

  • Offline in reply to Hippochick

    Hi Hippochic

    i hope your neck surgery went ok. I've had a neck dissection so please fire away with Amy questions 

    keep strong

    Carol x

  • Offline in reply to kirkc99
    Hi Carol, Thanks for the reply. I had my op just over a week ago. I'm doing ok. It's a massive scar that runs under my chin, down my neck and along my collarbone and held together with loads of staples. Feel like I've used up the NHS stationary budget! I think I'm recovering well. Hardest thing was trying to get sleep but gp gave me a few sleeping pills and having a good nights sleep has made me feel so much better. Pain is not too bad. My shoulder feels quite stiff but I seem to have good movement. So far so good! Worst bit is the thought that surgery hasn't cured me and there's still cancer in my body but one step at a time I guess!
  • Offline in reply to Hippochick

    Hi

    I'm so glad it went well. Try and keep your shoulder movement by putting your hands on a wall and walking your fingers up it because the shoulder can be a nightmare if it's stiff. I've got the same cuts but still have odema under my chin but it's ok nobody really notices. As you say one step at a time and now your nymph nodes have gone it cannot travel down that route again if there are further problems.  I wish you all the very best with the next stage of your treatment . Are you still in hospital as I was there 10 days, and not discharged until staples all removed! 

    keep in touch  

  • Offline in reply to kirkc99
    No I'm at home. Spent 4 days in hospital. Great to be at home. Thanks for the tip for the shoulder. It feels ok at the moment and I feel a bit stronger everyday. Plenty of rest definitely helps the recovery. Onwards and upwards now!

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