To be or not to be

2 minute read time.

That is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles

That really is the question. Do we take what life deals us with lying down or do we roll up our sleeves when the going gets tough and throw a few punches? With the help of a Macmillan nurse (who should be beatified in my opinion), I delivered a literary boff to the hooter. 

This week things all got a bit too much. The sense of hopelessness over my treatment plan, pain, the effect of drugs and a wound infection that's worn me down. So I picked up the phone and called the Macmillan helpline, something I would have never considered before now. After a snotty, sniveling hour of my misery, the saintly nurse helped me clarify the steps I needed to rise out of my miasma of despair.

On my to do list was to seek a new consultant, secondly I was to consider contacting PALS, the Patient Advice and Liaison Service. I must firstly say, that I have no doubt that my consultant , MDT and nurse had my best clinical interest in mind when they devised my treatment plan, and I completely trust their clinical expertise but they certainly didn't take in to consideration any of my wishes. I made it clear from the day of diagnosis what I wanted but it made no difference. Being diagnosed with cancer puts you in a vulnerable position, standing up for yourself and making decisions under pressure is not easy or a good thing. In hindsight I should never have agreed to the surgery I didn't want, or agreed to the drug I didn't want but I did. 

The worm has turned. 

I have chosen to take arms, my weapon of choice is email; the word is mightier than the sword. Where I was refused my preferred surgery before, a door has suddenly opened and I have a new consultant, who I'm assured will be sympathetic. The good news was delivered at the 11th hour as I have my first radiotherapy meeting today. If I have further surgery I won't need radiotherapy but until I am certain that it will happen in the very near future, I intend to hold on to plan B. One's loins are girded. 

Sound trumpets! let our bloody colours wave!
And either victory, or else a grave.

Anonymous
  • FormerMember
    FormerMember

    Glad to see you blogging again.

    PALS can be a useful tool for ensuring that your medical team understand and discuss your needs and wants for your treatment. I had to resort to PALS a few years back when I felt seriously let down whilst suffering from a different debilitating condition albeit not life threatening. I felt they empowered me and my husband and I had the opportunity to meet with the consultant on our terms.

    I am just so sorry that your experience has left you feeling disengaged and powerless over your treatment. Because cancer takes away the control we have of our lives I think having a say in our treatment and retaining some semblance of control is massively important for our mental health.

    My own experience is different and I have felt that my health care professionals have always included me in discussions and I do have a say in the clinical decisions. It is sad that this is not standard across the UK. I am lucky and I do realise that.

    It is well known that cancer patients mental health suffers terribly and if the medical team get it right straight away we don't need to feel so helpless and at the mercy of a seemingly uncaring machine that chews us up and spits us out when it has finished with us.

    Macmillan nurses are a great resource, I hope that yours continues to be a good source of information and support.

    In the meantime, take care and speedy recovery xxx

  • FormerMember
    FormerMember

    Hello my lovelies

    Mandi and Liddyloo, fight we shall, whatever stands in our way! x

    Cymru, ...we'll not fail!

    Blueeric, I'm so glad you've a good team looking after you. You're so right about the mental melee. Sometimes we fall but we have friends here to help dust ourselves off and prepare for the next battle. x