Worst patient ever

D day. Why do they call you a patient when I have no patience? I am a solicitor. I am orderly and in control. I hate I can't control this and now I know if they do find a "mass" or something I could have another wait before someone says if it's "that". This just won't do. I am going to draft a letter of complaint - life with uncertainty sucks. I am not sure where to send it... Hopefully logging off later. Wish me luck X

18 Replies

  • massive good luck wish from me!! xx

  • Best of luck to you, sending postive vibes


  • Oh dear...you remind me of me!

    Sometimes you absolutely need to kick ass in order to get answers or treatment..see some of the terrible treatment described on this forum. Other times , most of the time you may be better off working with your team as a patient partner.

    Being scared sh**less impacts in different ways for different people and you are right you can't control this..which for us control freaks makes us mad! But take care of yourself because I suspect that it is your fear that is driving you. Try a hug and a good cry alongside the letter. All best wishes. Lyndall

  • To clarify the complaint was to whoever is in charge up there- I find myself mute when listening to the medics. Think of lots of questions after but just sit smiling like a twerp. They certainly have more experience of all this than I. I 100% am a control freak. I can deal with whatever may come but hate the waiting. I only do pre organised surprises 😉

  • I'd like to request a refund on my faulty ovary, so if you identify who to complain to, please can you let me know so that I can go to them too ;-)

    I'm like you and can't bear the wait - I waited a week to see the gynae, then a week for the CT scan and was supposed to wait another week for the results, but I had a meltdown and was seen the following day, although given that it was bad news, although it stopped the wait, it opened up a whole different can of worms. In the grand scheme of things, I was really seen pretty quickly, but it felt like forever.

    I hope you aren't kept waiting for too long.

  • It's the same questions over and over. Yes I am hugely bloated, yes I am tiddling more yes I am pooped but I am a middle aged working mum with a full time job on B12 for anemia- I always feel exhausted? Oh well. Only a few hrs. Did you have an ultrasound?

  • Yes, I did - through the stomach and internal. The gynae did it when I had my appointment with him, and he also took a sample of the fluid from my abdomen at the same time.

  • Ultrasound cannot detect OVCA!!! Get a CAT scan. Tesla in Seattle

  • The waiting is a killer, thanks to the ladies on here, who were very supportive. I don't know what I would have done

  • If one more person says ooooh you'll be fine... Statistically I will. I think I will. But that didn't stop a smiling consultant from doing a biopsy. It took months for my mum to get her titchy breast pea taken seriously. Bad things happen in life. Tummy ache tonight. Feeling annoyed.

  • I am afraid when we get an illness, our lives as we have known them change for ever. Every thing is foreign, doctors, nurses, hospitals. We have a new normal and we depend on others to bring some order into our lives again. Do you know its okay not to see clients, it okay not to have your break at a certain time every day? So you depend on the doctors and medical staff and not yourself. How to get around it? You just go with the flow, let everything happen as it unfolds. Being a solicitor it is doubly difficult as there are grey areas involved. So you must chill a little and listen to your doctors and to youre body.

  • I'd love to but I don't do relaxing. I operate at 100 mph. I am on the autistic spectrum and struggle to stop. I clean my teeth at the same time everyday etc woken up with what feels like tonsillitis so I think I need to have a "do nothing" day.

  • You have to switch gears; it's not a choice; it takes getting used to seemingly not being in control. However, it's worthwhile remembering that you are ultimately still the one that pulls the trigger(s) and makes the decisions on which treatment to have etc. There's still a drastic 'opt out' stance you could adopt. Most of us do go along with the recommendations of our medical teams though because they are the recognized experts, and this forum proves there is life _with_ as well as _beyond_ the disease and immediate treatment. Hang in there.

  • Let us know how you get on. Yes, the lack of control is a stinger! I was an Occupational therapist and used to the other side of the fence! More difficult this side! Xx

  • i don't know you individual circumstances, is it a case of long delays or just that your are impatient? If it is the latter as opposed to any major f*** up then send your letter and then try to forget about it, which is very difficult. I absorb info and knowledge is power but in the early days I just scared myself silly with googling prognosis etc before I had answers so try to wait for answers and stay away from Google. Try to keep your mind otherwise occupied, do nice things, the waiting is always the worst. I hope all is well with your results xxxx

  • Thanks guys- I have been seen in a timely fashion but each stage seems to generate another wait. I a struggling with being patient. No news is good news though so off to my sons sports day and taking it one day at a time. X

  • My husband found the waits harder to cope with than I did, I knew that each test was needed to narrow down what I had it to provide more info. I kept calm as I knew these tests were essential on the decision tree of diagnosis and treatment. Getting stressed can do stuff to our body and my job is stressful enough without me adding to it! First test (CT) mid Jan, then ultrasound within 2 weeks, then contrast dye MRI within 2 weeks, then contrast dye CT within 2 weeks. Surgery 8th March, chemo started 5th April - two to go

    Clare xx

  • I think I am going to have to accept my diary might go to pot. Will purchase tippex just in case.

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