I have cancer, I’m not a damn saint

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I need a little rant here people, please bear with me…

Everyone was shocked at my news, it stopped us all in our tracks. Very early on I made the call that I would expect the best and plan for the worst. The worst is the five year survival rate of 15% so all my decisions are based on 5 years or less. If I’m the anomaly and beat the odds, then great! Being a long term meditator has prepared me on a level for death as the Buddhist tradition (which has been part of my meditation practice) is that we are all dying and it helps us to live well if we accept that fact with detachment and perhaps acceptance.

Early days but treatment is going well, immunotherapy isn’t like chemo, less harsh. Yes I’m tired a lot, deep fatigue is the order of the day but I’m managing my energy to keep doing the things I love, living life and finding the joy. I have amazing ongoing support from family and friends, everyone wants to see me beat this, is really positive and keeps telling me that I’m being incredible, an inspiration.  Many people have said ‘you can talk to me about anything, anytime’.

But ..

Sure they’re happy to be supportive if I’m dealing with bad news but if I’m dealing with the everyday, getting frustrated with my lack of energy, the fact that my once fit, graceful and agile body has put on weight, that my muscle mass is decreasing and I’m feeling weak and tired and pissed off with it, I get told how unimportant that is, how I shouldn’t be worrying about that, isn’t it disappointing that I’m still concerned with such trivial things? When I confessed to my yoga teacher (also a good friend), that I was being confronted with some big issues and needing to dig deep, her response was ‘why the hell do you need cancer to dig deep? You should have been doing it all the time’. It’s like I have to be some kind of saint, not just an ordinary person any longer. I find I’m being less honest with people I love because of these responses. I feel patronised and that my perhaps petty feelings should be so summarily dismissed.

I’d not want to lose these people and wish at the time I could respond appropriately but all I feel is hurt so I say nothing, change the subject, let it go cos it’s all small stuff really. Aaargh!!!

Rant over, thanks for listening. 

  • Hi TheGoodLifeNZ, now that's what I call a good rant, people are funny in their attitude to someone with cancer, some think they will upset you so they ignore it.

    Others think they no best and give you useless advice, like think positive and everything will be ok.

    Reality is only you know how you feel both physically and mentally and what you do about it is always your decision.

    You say you don't want to upset anyone, I get through this by being open and honest about my feelings and ask them to help me find my way through this cancer.

  • I had an episode similar to this a couple days ago- I admitted to my friends I felt left out and sad - I have been ghosted by people I knew and I also feel sometimes I am left out by others unintentionally. I was in tears, one said; everyone had issues and I was acting aggressive. Maybe I was. But the brave face I try to wear every day, just doesn't always work. I'm human and I feel vulnerable and weak, sad every day. I did feel she was being insensitive. Until you face this incurable verdict and diagnosis, I'm not sure you will ever really understand. Someone else entered the room and we changed the subject. I still feel hurt but what's the use of hanging on to it.

    I guess I'm trying to remember she is one of my best friends and does love me and has stood by me through many health issues. 

    Anyway I hope today will be sunnier for you, sending hugs x

  • Hi, that's a good rant and I think at some Point we all have been through the same feelings and situations. I'm on Nivolumab immunotherapy and have been doing good on it so theyleft me on it. In 2019 I was given 12 to 18 months well I'm still here 2024. I get some fatigue  and down days so I rest. Some people have been awful insensitive  yes it does hurt , been ghosted as well, that's cancer for you. As Ulls has said some people don't know what to say or are just scared of cancer. Nothing we can do about them,  I give them and people who over do the sympathy, a wide birth its annoys me. Keep posting and be kind to your self.  Chat soon. XX

    Moi

  • Hi Guilia, It's good to hear from you again and ranting too, there's a good way of letting off steam, Like the guys say, friends can mean well and have good intentions, but they can never understand what it means to be us, we are always having to adapt to our ever changing circumstances, we will never be the person we were yesterday. Trying to live a normal life is what we all want, but how many of us can say we are truly normal, not me, my treatment stops all testosterone production, i have been through the male menopause, my middle has expanded, i have man boobs, cry at the stupidest things, my emotions are through the roof, "I actually like this", and I am still impacted by fatigue a year on. but finding exercise is helping me through it, back to friends I've grown a thick skin, not literally, some have surprised me, others i am happy to lose, I never initiate talk about cancer but try to be as honest and open as possible. All my family are on board with how I wish to be treated, eventually, have lost quite a few friends but no one really close and my friends from my years in healthcare have been amazing, they know when I'm on a downer and will help me through it, and when I am my "normal" self will happily take the piss out of me which is fab. take care.

    Eddie xx

  • A good Rant I feel. I have felt the same if I have spoken about tiredness, painful feet & hands, not being able to do things I did before diagnosis due to muscle wastage etc family friends hit back with “ you are alive”, be Positive” or I feel people treat me differently that again upsets me. I do understand it is hard for them but I am living with the diagnosis. I have always been open & honest with everything, Some people get it others treat me with kid gloves still or others avoid me. 

  • Hi everyone, thank you so much for the messages and support. This is such a challenging issue and I do understand that its challenging for everyone not just me. Needed the rant though! This is such a great space and I'm so grateful to have this space to be able to let off steam.

    Kia Kaha all

    XXG

  • Hi Eddie, I had a laugh at your reply as my husband Roger (who incidentally is being amazing) had a diagnosis of aggressive prostate cancer in late 2019. His treatment was radiation and hormone therapy and how we would laugh at his changing shape and experience of the manopause. I used to tease him about staying out of my underwear drawer for his very impressive man boobs Grinning! He's been clear now for about 18 months and has slowly regained his former figure and strength through being active. He is my inspiration as he just got on with it and didn't give up.

    All the best XX

  • Hi, Guilia, your husband sounds amazing and great to hear he's doing so well after cancer treatment, looks like you have the perfect partner to support you through yours. Having man boobs has led to many funny moments and teasing, It's just a shame their not as sensitive as the girls are, I did once think of getting a training bra but settled for braces to flatten them. Guilia did hubby manage to lose his man boobs. take care,

    Eddie xx

  • Hi  

    I hope you feel better for your rant. It does us good to say how we feel to others that understand. I deal with insensitive comments by not expecting very much from people that don't understand and basically don't want to understand. Or have been told exactly what my prognosis is but prefer to think otherwise. Some people are over the moon that my CT results were stable but then look bored or confused if I mention cancer related daily life and events, as if...... "Are you still bleating on about this, why can't you get on with your life and let it go". Some people expect to be kept informed but wouldn't make the effort to come and see me or ring for a chat. Think I've joined in with the rant!

    I try not to dwell on these aggravating occurrences by concentrating on myself, looking after myself and improving my knowledge, rebuilding my confidence and assertiveness by making sure that my boundaries are in place and are high. Cancer has taught me to stop putting myself last. 

    A x

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  • Yes, boundaries. That’s one of the odd silver linings to this diagnosis, that after a lifetime of putting others first and being easy-going, finally the person that’s first is me! Great advice not to dwell on it, just get on with looking after my well-being, happiness and consolidating my sense of agency by doing so. 
    Xx