Scared witless

I’m very disappointed with my GP surgery ,as I was attending my GP surgery but couldn’t see a dr but got to see the nurse 10 weeks ago ,she insisted the lump on my neck was thyroid related ,put me on a course of antibiotics, in the meantime I took a chest infection when I was on them ! Went back after a week got a stronger antibiotic and 6 steroid tablets a day for a week she still insisted it was thyroid ,I did say to her I think I need to see a doc but she said no need for that, came back to her the next week and she said I’m putting you down to see a  thyroid Spcielest , I said ok how long will I have to wait ,just 12 to 16 weeks until I get a letter saying I was on the list ,she said again I can assure you it’s thyroid nothing to worry about !, I said I’m going on a cruise in 3 mths time should I pay th £4000 as it had to be paid in 1 wis time she said yes go ahead this will all be over by that time ,no insurance as I buy it the day I pay the cruise but as I had been to her and was waiting to see a specialist I couldn’t get any , paid the cruise and after another 4 weeks had passed my hubby and daughter said go back to the doc the lump on the side of your neck is getting massive I said but the nurse has said I don’t need to see the doc as it’s just my thyroid gland ,after 2 days of pressure from them I finally phoned the docs was told to come up right away ,my doc exzamened me and said I’m putting you through for an urgent appointment with a cancer specialist I very nearly passed out couldn’t believe it but was through to see the specialist the next sat back on the Tuesday had a barrage of tests and was diagnosed with HIGH GRADE NON HODGKIN LYMPHOMA , I’m devasted as is my hubby and family every one on my healthcare team has been amazing but I’m 70 yrs old been in perfect health up until now ,but we feel we’ve wasted 8 weeks befor I seen the doctors ,would it have made a difference to have been put to the doc right away instead of the nurse telling me she knew it was nothing to worry about ! What ! I’m in total devastation as are my family ,sorry for the long moan but I’m finding it very hard to come to term with this diagnosis I’ve went from not worrying to can’t sleep can’t eat can’t stop worrying putting on a brave face for the family but it’s floored me , jeanjennie 

  • Hi jeanjennie 

    I’m so sorry for your diagnosis, I totally understand your frustration and you are perfectly welcome to rant about it as much as you need to here. It’s a very difficult time and so easy for us to focus on the what ifs. 

    I was diagnosed with stomach cancer just over 2 weeks ago, like you was completely floored by the diagnosis, I’m a fit 46 year old woman, and had been receiving treatment for a stomach ulcer since May, my first biopsy was fine, I wish it had been discovered then but I’m very grateful that it has been discovered and treatment is about to start. 

    I know how you feel right now, but once you’ve had all your tests and you’ve got a treatment plan you do gain control and life continues, not saying I’m not scared of what lies ahead but I’m ready to get on with it. Like you I couldn’t sleep and I found that soul destroying, I used A little cannabis oil (my father in law takes it for insomnia) and it helped those first nights. Now I’m over the initial shock I’m sleeping better. 

    I was supposed to be in Majorca now with my family celebrating my dads 70th, I understand how you feel about your cruise, I’m just hoping this time next year it will all be behind us and we’ll be soaking up the sun as planned, hope this will be the same for you. 

    Might you need to talk I’m here. 

    Louise x

  • Hi,

    So sorry to read about your awful experience and eventual diagnosis. We all worry about whether or not an extra few weeks warning would have made any difference, in most cases it doesn't but that doesn't stop us worrying.

    I strongly suggest you write a formal letter of complaint to the General Practice and the local CCG setting out exactly who said what to you and when. It is hard enough for a GP with years of training and medical practice to get a cancer diagnosis right first time (mine didn't) but a practice nurse should not be in a position to be giving out such advice, especially when the symptoms are changing and not responding to treatment. 

    This is a good place to come for a moan, we've all had a rant from time to time! We all react differently to a cancer diagnosis, there's no right or wrong way :-)

    Good luck

    Dave

  • My husband was wrongly diagnosed after many months of scans and investigations 

    went in for surgery. Which was aborted cos they found a stage 4 cancer in his stomach. Somehow missed that one!!! 

    Hes now passed away. I still and will blame the nhs for heir incompetence in this matter. And I’m a registered nurse myself. Utterly broken. Leaving two young sons