Taking Loved Ones On The Journey

A couple of weeks ago I was diagnosed with oesophageal cancer and this week, as I celebrated my 38th birthday, I was told it had spread quite extensively into my lymph nodes and bones and was incurable. 

My husband and I have, as much as possible, accepted this diagnosis and I'm awaiting an appointment with an oncologist to discuss my palliative care plan. Currently, I'm operating at 98% so I'm also tentatively planning different activities to meet old friends, see places I love and enjoy whatever time I've got ahead of me whilst I'm able to.

So yes, incredibly sad news and I don't want to die BUT my husband and I are planning as luxurious, pleasurable and calm future as possible. I'll co-operate with palliative care and, if by some miracle, any future treatment plans that might pop up as my situation changes. 

However some members of my family, despite me sitting down with them and clearly laying out my plans, are already trying to push for harsher treatment options (something my consultant and I agreed would merely leave me feeling ill during my last months/years and unable to enjoy my time) and suggesting "healthy eating options" and weird alternative medicines/cannabis. 

How can I, politely, reiterate to my well-meaning but in denial family members that I'm happy to work with my doctors and deal with my diagnosis on my terms and I most certainly won't be wasting the short time I've got left (before my tumour forces me on to tube feeding) drinking kale juice?! 

To those who are those family members in their families, how would you best want to be told to "back off"? 

  • Hi there ... so so sorry your going through this heartbraking time at the moment.... that news is truly not fare ...

    Now I have the same outlook as you, i take every day sinse my grade three breast cancer as a bonus .. if I wake up and look around, and I'm still here, I say I'll make the most of the day and find one, at least one thing to smile at every day ... 

    My amazing beautiful granddaughter lost her fight to acute myeloid leukaemia a few months ago .. she spent her last 7 months having intents chemo and radio and a stem cell transplant.... she lost her hair but never her smile ... we honestly believed she would come through, at 18 she had so much to look forward for ... 

    But sadly she only had a few weeks of near "normal" if we'd had a crystal ball... we could have done so much while she could ... she missed our holiday to Florida... she missed her 18th party .. she missed the little things like friends ... but we had to fight ... but if only we'd known ...

    So hunny, this is your time ... you do what you want .. you fill it with memories for those close ... because those memories of treatments are hard to let go ..and no one healthy / young or old ...is promised tomorrow... no one knows ... so you take every day as a bonus ... and yes there will be hard day's and good days ... but live .. laugh .. and love ... and then you won't waste a day ... 

    Sending a vertual hug.... Chrissie x x 

  • Hi [@JaeInKent]‍ 

    How incredibly young you are to be given this diagnosis. I'm truly sorry; life is so incredibly unfair. 
    I have to admit that I was a well meaning but pushy family member when my Mum got sick this year. Before she was even diagnosed, we suspected it was cancer and my sister and I went into panic mode. My mum was very calm and matter of fact about not wanting treatment if it wasn't curable, as like you, she didn't want to spend the time she had left feeling worse with intense treatments. My sister and I weren't helpful, saying things like, "why would you not want to try anything to have more time", "why are you giving up, you have to fight it" etc. I see now how unhelpful this was. We were panicking because we love her and didn't want to lose her.

    I would say just give your family time to come to terms with your wishes. Stick to what you want and they will eventually come round to your way of thinking. They're just going through that selfish phase of wanting you around as long as possible but as the reality sinks in more, they will come to realise the inevitability of what will happen and that it's so important for you to be able to spend your remaining time how you want to.

    Take good care,

    J

  • [@Chriss]‍ Thanks very much and fingers crossed you've got many more good days ahead of you! :) 

    [@Dexter123]‍ Yes, I guess just letting them come to terms with it themselves is a plan that avoids upsetting anyone. 

    I don't see this as a fight (if I lose, it won't be because I didn't want to live or didn't fight hard enough) but as a journey. I continue to hope (but am realistic about this hope) that the "light touch" chemo I'm going to be getting to help with my future symptoms will do me wonders and I'll be worth reviewing for surgery and I'll go on to have a nice, long life. I do not have a death wish. However, life isn't always a fairytale so I'll take this journey with a view to enjoying what I can, being with those I care about and trying not to leave them with memories of me struggling through treatments that ultimately do nothing but make me ill (and I'll base that all on the doctor's advice, I'm no medical expert... if the doctor thinks heavy chemo will help, I'll be the first in line to take it). 

    I can see how hard it must have been for your sister and you and I am trying to be really understanding of what my loved ones are going through (even when they suggest I eat broccoli sprouts!) and I'll bear what you've said in mind. 

    Hopefully, once I've bored them to tears with visits to aquariums, museums and extremely tacky holiday parks as I plan to, they'll have come around to my way of thinking ;) 

  • You have a really lovely attitude and outlook on life. I wish you all the best on your journey xx

  • Hi over 5 years ago I was told I was uncurable two years ago put on palative care still keeping going still positive.

    I've prostate cancer gone to lymph nodes spine ribs pelvis and a lung,I just love with my uninvited guests.i was originally diagnosed Feb 2016 kept working for two years had to retire to look after my disabled wife she has Alzheimer's and Parkinson's plus other problems I'm her official carer ,. I've been lucky never any problems with friends or family even though I've always looked well. So very lucky.

    I was given five years, I've passed that and don't feel much worse now than on that fateful day meny years ago.

    I've taken treatment offered sometimes feeling rubbish for ages but keeping positive and sure,.

    Unless someone has been through cancer treatment they have no idea what it's like so they try to help BUT.

    Hope you can get All your planning for your holidays and such in place and enjoy your life,,

    Take care keep safe and positive.

    Billy