A way of thinking about this journey

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I had previously posted about mental ups and downs and received great advice. I don't know whether I should have added this to that or make it a separate discussion. I have chosen this way. Please let me know if that is wrong.

This morning, I was taking my disabled daughter to one of HER medical appointments. She has been ill for almost 20 years with a long list of problems mainly around auto immune problems. Catching Covid about 18 months ago put the tin lid on it, and currently she is in bed for half the day, and a wheelchair used for the rest. She has become a menace since getting a motorised wheelchair. She went from being a midwife to bed-bound over a long-ish period, and back to being half mobile before the Covid. Her understanding of medical-speak has been a great help to me.

Any way, we were driving and talking, and I suspect that I was having a bit of a "poor me" moment. She suddenly said "You know, I think you are looking at this wrong."

We went through a quick check list of the way prostate cancer affects sufferers.

  • Even the advanced cases are often treated for years (as many people on this forum have testified).
  • It is not impossible to look for a "cure" but even this takes time.
  • Treatment takes months and sometimes years.
  • Quite often treatment maintains an equilibrium.
  • Treatments are changed all the time (in the month-and-a-half since I was presented with a diagnosis, I have counted 3 announcements).
  • Sometimes it is very bad, and sometimes just a nuisance.

Going through this I agreed that she was about right.

She asked, "Why don't you think about it as a chronic illness, like mine?"

Her point was that instead of considering the illness as potentially life threatening (it is, but so are hers) I should consider it as potentially life limiting.

She said that, when she understood her illness as chronic, it changed her thinking. She started looking for ways to adapt and make her life better and has pretty much succeeded. See the motorised wheelchair comment above.

She has also become an advocate on the Tik Tok platform for disabled people and is regularly rude to and about politicians.

This struck me as a valid point about a change in thinking and, just in case anyone else needs to hear this I thought I would put it here.

  • Hello  

    A great post. 98% of people with Prostate Cancer die WITH it not OF it.

    I don't even look on my diagnosis as an illness - I look on it as something that affects my life (side effects, appointments etc) but 99.9% of the time I have a positive attitude and right at the start of my journey I told my wife "I will beat this bast**d". I get on and live life to the full - as if there's nothing wrong with me!

    There have been some positives for me - I have made new friends on the Community, some who I speak to off line. It's brought to light a couple of other minor medical issues I have and they have been sorted. I have become a "Community Champion" 9 months ago - my wife says I am a better person for the Macmillan training and I now have time for people and empathy which I was lacking. My computer skills have improved. My medical knowledge has increased and perhaps the most important change for me - I can control any worry and anxiety and I sleep better!!

    When folk ask me "do you worry about your treatment" or "what if it comes back" I have faith in my team and to quote Doris Day - "Que Sera Sera".

    All in all - I am living with it and considering where I started off (click on my avatar for the full story) I consider myself to be a "lucky boy".

    Best wishes - Brian.

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  • Love everyone’s positivity on this platform! Thank you for sharing this, it has certainly made me smile :). 

  • Thanks  for a brilliant post. I have had conversations with our GP (more of a friend as we live in a small village) about attitude towards being given a cancer diagnosis and we have agreed that even for those with a treatable, not curable at the moment, diagnosis then it should be classified as a chronic illness. Her father was diagnosed with metastatic prostate cancer at the same time as hubby in 2020 so we have good discussions about treatment pathways and how, with the use of aids, where to get them, complimentary therapies etc our loved ones can maintain a good quality of life. My hubby has the only mobility scooter in the village (so far) and is well known for getting from A to B. It allows us to carry on doing the things we did prior to diagnosis. The car carries his seat walker which allows him to walk around town safely and gives him a level of independence. Arthritis is beginning to impact him using a normal knife and fork so we have found large handled ones. His other aids from when he had his stroke remain in store and will be got out if needed.

    Hubby had a stroke and heart attack three months after we got married 27 years ago, then a complete mental breakdown a month later quickly followed by a diagnosis of PTSD which took 2 years of therapy to get him out of the house, but still impacts him now. To help me, I started advocating for disabled people and helped them wade through the quagmire of the disability benefits system as well as helping get the law changed to allow expats to take their disability benefits with them when they decided to move to a European country, so well done for people like your daughter and tell her that she can make a difference. We could have gone under if we had let it but our philosophy when told 'this is as good as it is going to get' was to fight it and prove them wrong. I will always remember my grandmothers words 'Smile and the world smiles with you, cry and you cry alone'. This positive attitude has been our mantra and I am sure it has helped us get this far. Everyone has bad days but we just remember all the things we have done and how lucky we are to still have a good life together.

  • Thank you for you response here Alwayshope. I will tell my daughter that she is making a difference, with her team of fellow disabled advocates.

    She fact checks everything she says. I may not always approve of the way she says it, but I approve of the motive and the enthusiasm.

    I have also taken note of your positive attitude and the "defeat each new problem as it arises" approach. I will try and follow that.

    My life includes working for a charity also trying hard to help navigate through the bureaucracy which should support people but too often hinders them. I am working at home at the moment because, being newly diagnosed and unsure, I am prone to spending time staring into space as I wonder what's next.

    Please accept my thanks for you words and my best wishes to you and your husband.

  • Hello  .

    You are still at the difficult stage of waiting for a treatment plan so I expect a lot of time is spent thinking about prostate cancer but once you are under the next phase of treatment things will settle down. The HT is already doing its job so this gives time to sort out your own personal plan but with your statistics there are several options open to you. Once you know what they are then there is plenty of help to let you know what to expect. Afterwards a new phase begins with life returning to normal, albeit slightly different from before as you have to adjust to the effects the hormone therapy has on your body. 

  • Thank you for contributing such a brilliant post.  Thank your daughter from us too.

    All the best to both of you. 

  • I thought I would add a little more here, about the emotional and mental issues I have encountered so far.

    Sine my appointment with the oncologist and the emergence of a plan most of my concerns have settled down. Where I don't understand things I ask in this forum and someone has always been able to explain.

    When I first received my diagnosis, I was floored. Somehow I naturally defaulted to what, I suspect, most people think about whe they hear they have a cancer diagnosis - "I'm going to die".

    As I went through the diagnostic process I began to realise that this illness had treatments no matter how advanced it was, so that there was hope.

    Then I received the results of the biopsy which were not presented very well, and went into a bit of a decline again. 

    Somewhere shortly after, though, I began to appreciate the world around me. More perhaps, than I had done for some time. I was conscious of things like birds singing. I had always heard them, but now I was conscious of them. I sstopped listening to music when I walked and started listenting to the world around me. When I saw squirrells running up a tree, I stopped and watched them.

    These and other things, with my wife, in our house, and even driving, I deliberately tried to just appreciate.

    It now occurs to me that I was stressed and depressed before the diagnosis (I work at Citizens Advice, albeit part-time, and since the pandemic the pressure of people's problems has been never ending), and that this diagnosis and the pathway I am going down may have improved my mental health, even if that road is quite bumpy, and has occasional flashes of fear (I mean, given what I know, the tests, and the same line coming from all the medical people I know; where on earth does the thought "What if they're all wrong?" even come from).

    All is not roses and light, but it is much better than it was.

    So, just for anyone else on this journey, you can almost win in mental health terms.

    As others have pointed out, in the end, your mental attitude affects your physical health.

    All I've got to do now is work on my jokes......

  • Hello  

    That's a great post and I can relate to it 100%.  I have treated my diagnosis like a "wake up call". Prior to diagnosis (and I still do) I have a small accountancy practice and worked almost every working hour - now I leave it to the staff, have holidays, enjoy walking and my grandchildren. I find time for my other interests and and am enjoying life more than pre-diagnosis. My wife says I am a better person for it.

    I even find time to work on the online Community Relaxed.

    Best wishes - Brian.

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  • Hi Mstev2,

    Thank you for this brilliant brave post.!

    Lots of love

    Dafna

  •   , that is a brilliant post.  David