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Things not to say to cancer patients

nickyr
Offline

Hi all

 

This is my first post anywhere ever, so bear with me.  I just hope it ends up in an appropriate place and maybe resonates or is of some comfort to someone out there.

 

I had absolutely no idea about cancer, its treatment or its psychology until May when I was diagnosed.  It's so easy to say the wrong thing, I think sometimes people feel they must say something rather than nothing, because for them saying nothing seems unsupportive and awkward.  I have started regarding people with no cancer experience - lucky them - as civilians.  Fighting cancer is a type of war that they know nothing about, and I'm glad for them that they don't. I hope they never have to find out.  For me, it's like living on the other side of a fence, I can see the civilians, and I recognise their world as my old one - but they can't see me and have no idea this world even exists. I know how different things are, because we have to accept such difficult compromises and face physical and emotional challenges of which they are completely oblivious - this is obvious because they complain about things that seem so minor to me now. I suppose I complained about those things myself before the 7th of May, fully unaware of how lucky I was that my problems weren't bigger than that.

 

Some of the civilians are really struggling with how best to communicate with us on the front line, and I feel for them in that situation.  It sounds too as if there are some unfeeling and insensitive people out there who should know better; I hope not to encounter any of those, and I'm truly sorry if you have.

  • Offline in reply to Morley

    Nice reply, thanks. You seem to have kept a sense of humour - may everyone from now on look at your face! We do have to tolerate quite a bit but people are mostly positive and that helps.

     

    I am on chemo for metastatic breast cancer - this is the second session of chemo  and I was told that it is respondong well. I was told the scan results in a telephone call with a nurse which I was perplexed by - I understand the need for telephone consultations and that's fine but for important things like results of a midway scan, I think it should be the consultant. I was  of course happy with the result but asked no questions. SInce then, I have questions popping into my head about why it wasn't the consultant calling - because the results were fine and just complete the course with no changes? they don't have time? what is happening to my liver aside from the lump in my armpit? I just felt that technical questions I did have (and didnt ask) should be answered by the consultant oncologist that I have been seeing rather than a nurse who i do not know at all.  I really appreciate all the nurses a great deal. 

     

    Anyway, must carry on positively and be happy that today is OK!    Take care and all the best.

  • Offline in reply to KLM

    Hi klm.

    Definitely keep positive thoughts and actions. I have a reply from my step sister when i told her i was on palliative care because my cancer had gone from the prostate to lymph nodes, spine, ribs, pelvis and a lung. 

    Her reply was it's only cancer they can work miracles nowadays. 

    I just hung up. 

    Billy

    P.s lucky she lives along way away. 

  • Offline in reply to KLM

    Be grateful for telephone appointments, every single one I've had arranged has been changed to in person because it was bad news! Ofcourse as soon as I get the letter to change the appointment I am on the phone hunting someone down to tell me why it's changed so they end up telling me whatever it is over the phone anyway, I deal way better with facts than unknowns. I do understand though the wish to speak to a consultant, my breast surgeon went off sick after my second op and then resigned (I hope I didn't break him) and I'm left with questions I can't seem to get answers too. I met the surgeon for my mastectomy on the morning of the op for 5 mins and never saw him again, a doctor came to see me on the ward post op and asked to check my tummy???? Never saw her again either, maybe it's my withering looks that break doctors. The only consistent person I've had has been the BCN and she can only read what had been written in the notes and often can't explain it! Hopefully when the next stage of my treatment is decided I will then be with an Oncologist ongoing and will have someone to direct my questions to that can answer.
    You could try phoning your consultant's secretary and ask for a call, most doctors are happy to speak to you or arrange an appointment. It definitely helps to be clear about what they're doing and how it's working, it's great you are responding well but like you I'd want more details!

  • Offline in reply to nickyr

    If it's any consolation I have been through masectomy, chemo and radiotherapy. I was Stage 2 with cancer in 2 lymph nodes and the same age as you. None of the treatment is pleasant but hold onto the thought that it's part of your recovery. 8 weeks after treatment I am feeling like my old self, my hair is growing and energy returning. Still fragile but taking it easy and grateful for the amazing NHS team that got me through and are still supportive now. 
    Best wishes

    Silver 

  • Offline in reply to telemando

    Hiya,

     

    Mind me asking how the prostate cancer presented and how it was discovered?

  • Offline in reply to Gaza

    Hi Gaza

     

    It was a fluke!  I had a late start one morning and I was driving to work listening to radio 4 - it was Woman's Hour. There was an feature about prostate cancer and mention of a blood test (PSA test).  A little voice whispered in my ear and said "You should get that done."  The next time I saw my GP, I asked her about it, and she arranged for me to have the test.  It was a little higher than usual, and after a course of antibiotics and another retest it was still a little high.  I was referred to the local urology dept who monitored me for two years, while my PSA went up and down, but never went higher than 5.0  Then after about two years, it rose to 6.0 then 6.4 and I had a biopsy and the cancer was found.  

     

    I was 56 at the time of diagnosis.  I had no real symptoms, other than a minor slowing of flow; however in the last year I started getting attacks of prostatitis, which needed several courses of antibiotics.

     

    As with most cancers, the earlier it's caught, the better the outcome, but I do wonder what situation I'd be in now if I hadn't caught the radio article about prostate cancer... 

     

    If you're having any symptoms then you should ask your GP for a PSA test.  If you're black then it's particularly important to be vigilant, because the statistics show that black men are more liable to get prostate cancer at a relatively young age. Click on this link for more info: PSA Testing on the NHS

     

  • Offline in reply to Gaza

    Hi Gaza. 

    As telemando, says if your not sure see your Dr get a psa test done. 

    With me i was just urinating bit more regularly not much though, then i started being sick quite a lot, turned out to be a hiatus hurnea, but blood test showed something else so psa test done turned out to be 1581, i still felt fine on meds for hurnea. That was Feb 2016 still feeling OK just living with my uninvited guest. As said before if you're not sure get checked out.

    Good luck. 

    Billy 

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