My cancer

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Hi everyone, I don't post much as I never feel I have much to offer. But i would like to ask a question . I have untreatable bilateral lung cancer. I don't appear to have any symptoms (I have plenty for my other maladies) I have applied for attendance allowance on advice from my gp (she brought me the DS1500 form)  That seems to imply she thinks my time is limited. As I live alone I feel the need to get my affairs in order as much as possible. I always thought doctors won't ever give a prognosis, but is that true? Thanks for reading.

  • That sounds like good news to me Moo. So pleased you love your flat. A right nuisance with the broadband but at least you have managed to get round it.

    Go round Brighton on the pillion of his scooter and pretend you are in Quadraphenia.! Not sure about that spelling or if you are old enough to remember the film?

    You just enjoy your brothers company. 

  • Hi minimoo. The news about your flat is great. So happy you are settled. Hope the phone people get you sorted soon. Rainie x

  • Well done moving into you new flat and getting on line xxx

    Ruth 

  • I’ve only been on this forum a about a week now. I find it really helpful. I only found out I was stage 4 and terminal 3 weeks ago. 

    Im trying not to get hung up on this prognosis bullshit. Reading down the comments below they are spot on. The prognosis is based on statistical averages are there are no rules about this. People outlive the prognosis. 

    I asked my Oncologist how long I had? All he said was not years, but more than weeks. I’ve interpreted that as 6 to 9 months. Think that’s fair. No one could put an accurate timeline on this so it’s not fair to ask. 

    If we didn’t have cancer, what difference would it make. We are all dying it’s just that normally our bodies don’t make us think about it all the time. 

    I am struggling with knowing I’m dying bit though. I don’t want to leave my family.

    Every now and again it hits me and I start thinking about things like this is the last time I’ll do this, or I’ll never know how next seasons F1 ends up and does Lewis get his well deserved 8th title. But I have to stop thinking as that’s a downward spiral that I’m sure will piss me right off.

    How do you lot cope with that? Do you get the same feelings?  I really would welcome any help on how to deal with that. 

    Take care guys,

    Rameses. 

  • I went through a time of thinking things like 'why do I need that new top or that pair of trousers? I've got enough stuff to last me. But I went through that and thought 'sod it' a nice bright colorful pair of pants will cheer me up. So I bought em'. Putting some colour into your life lifts the spirit - and boy did it need lifting and still does from time to time. But I no longer think in terms of a timescale as such. I just try and make each day count. I stopped thinking that it might be a waste of time booking that holiday as I might not be here to enjoy it. Now I just think - book it. I've managed quite a few holidays now since my diagnosis.

    Lewis Hamilton risks it all every day he goes to work, and life is all about risk. Any one of us could step under the proverbial bus tomorrow. I often wonder what the end might be like and how I'll be - and if I'll know it's happening - but for the most part I wake up and know I've made it through the night, get into my studio, whack on some paint and get on with it. 

    Make a plan and love every bit of time you have with those who love you. Stack up the memories.

    Rainie x

  • Brilliant. Thank you.

    I sometimes I just need a kick up the behind and to stop feeling sorry for myself. 

    I’ve just crossed words with my other half about having a 2 day break in York. She said “oh we can’t go then because of this birthday or that birthday” and I snapped saying I can’t wait another month. You need to start thinking in weeks not months. Every day is precious to me more than ever. I am not waiting. 

    Can’t do holidays anymore. Can’t get insured for less than £1500.00. Not worth it. I’ve just had to cancel our planned holiday for September. 

    I have started being a bit more selfish in terms of treating myself to little things. I can’t take it with me but I don’t want to go mad and spend all my kids money on them.

    Good advice on making a plan. I’ll start looking at some day trips and that. 

    Take care guys,

    Rameses. 

  • Hi Rameses and welcome! I know exactly how you feel as I am sure plenty of others here do too. My thoughts at first we're just like Rainie's, like what's the point of wasting money on clothes I won't get a chance to wear etc. Also I kept thinking of funerals, wondering how my family would cope with it etc I was stage4 with spread to lymph nodes, chest, pelvis,abdomen, bones and eye and given 5-7 months. I said to my oncologist "I will try anything"! However chemo doesn't work for Malignant Melanoma with Mets, so that was out. I managed to get on a trial for a new Target drug in it's first trial, so no one knew if it would work or what the side effects were. After my first scan 3 months down the line, I was told it was slowing the cancer down. That was when my husband and I decided we would go on holiday. I phoned over a dozen Travel Ins Companies before I found one that didn't cost more than the price of the holiday. ("StaySure")

    There is a dedicated Thread on the site giving advice about travel ins. We have never looked back. Been away lots of times to different places including Cruises. It takes a long time to accept your diagnosis and indeed the change to your life what with appointments for Oncologist, regular scans, plus side effects of treatment but I am still here years on. When you call the insurance people be honest but never say terminal, we are incurable but treatable and there is a huge difference.

    I now think we have been given an advantage over others because nothing will go unsaid and once I am dead, my family and friends will have no regrets because we have already discussed it all. Enjoy every day as it comes and make plans to go away, even for a weekend, in between scans etc it really lifts your spirits and you are less inclined to feel sorry for yourself!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Annette

    What beautiful name. 

    Thank you so much for your message. 

    You were given 5-7 months and are still here a few years in? That’s brilliant and really out a massive smile on my face at nearly 2:39 in the morning. 

    I used to love travelling, my favourite places being Santorini for the sun and Finland for the snow and Huskie Sledging.

    it’s really frustrating that’s been taken away from me. Another kick in the guts. For the past 16 months and through lockdown I was flying into Europe for work every fortnight, now I want to go, I can’t. I think my other half would be worried about getting me home if I had an issue whilst I was away.

    I am gong to look at it again now following your message, so thanks again for that. 

    I love the “we are incurable, but treatable as opposed to terminal definition”. I will defiantly adopt that phraseology.

    You’re probably right about having some advantages and yes you can feel free to talk openly about all sorts of issues. Just getting used to that. 

    Thank you again for my best message yet. 
    Take care,

    Take care guys,

    Rameses. 

  • Oh Rameses, Flatery will get you anywhere! I call this Group The Incouragables not the Incurables. As you will hopefully see for yourself, they are a great but sometimes a bit nutty! Which is what we all need, a bit of light relief as well as the serious stuff! This is like a roller coaster that goes so fast at first, it makes your head spin but eventually you get into a new routine and things slow down and get more manageable.

    Ad you see, there's always someone to talk to, even at stupid o'clock! (04.28!). Thanks again for your kind words.

    Take care 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • You might look at out-of-season mini breaks in self-catering cottages in the UK. You can often get something by a beach for a few days and as the cost is reasonable we often just fit one in between scans. A bit harder if you're in a treatment phase, but can still be managed if you're not too whacked out. Don't go driving too far. A change of scene is good for you. Travel light, with a box of easy meals and treats and just breathe some peace for a bit. It really helps.

    Rainie x